If there were medals to be handed out for over-thinking and indecisiveness then I’d be winning gold this week. This post has been through many forms and came close, multiple times, to becoming another victim of the delete button. But I couldn’t even make the decision to do that! So here goes, I’ll share. I guess that’s at least a decision! And apologies to those who prefer to listen to my posts - no voiceover this time.

I’d been teetering on the brink for months. Perhaps even years when I think about it.

Mulling it over. But frequently coming back to “not quite yet”. Feeling like I’d miss out - on exactly what, I’m not sure. Letting myself be pulled back into that irrelevant, time-sapping, addictive universe once more.

But I knew in my heart that I wanted out.

I started with a small step. Moving app’s to a back page so that they didn’t stare me in the face every time I opened my phone. I noticed that I didn’t miss them. Well, maybe a little. But I found that if I did open them it was now a conscious decision, a little treat of some mindless scrolling.

Then I took another step. I deleted the app’s from my phone. First Instagram. They took to sending me emails to remind me there was stuff to see and posts I’d not seen. I ignored them. Then Facebook. Just to test how much I’d miss them. I didn’t delete my profile. I just made it more difficult to access them and forced myself to walk to my desk.

24th August 2014 - the profile picture that I used on Facebook for more than a decade. It doesn’t even look like me. OMG what was I thinking with that hat? And that totally weird fake-looking smile? I did enjoy those oysters though!

Thinking back I realized that I didn’t even join Facebook by choice. I was sucked in. Seduced by an invite to a birthday event, sent from Facebook, back in 2005 or 2006. Twenty years ago. I liked sharing my photos so Instagram was added to the mix at some point. Think of all that time spent scrolling that I could have used for something more productive, more positive, or even more relaxing.

At first it was fun. Finding people you knew from back in the day. Old school friends. Contemporaries from university or whatever. Seeing where they were now and what they were up to. Connecting with colleagues and getting to know them better. A positive in some cases, but not so much in others where you realized you didn’t really want or need to know what they got up to outside of work or their personal views on politics.

Over time it became nothing more than a repetitive time sap. Occasionally I’d trip over something about a new TV show that I wanted to see. Or a new movie. Or a little update from someone I cared about.

I thought perhaps I could find a community of necrotizing fasciitis survivors. People that I could relate to and who would get what I’d been through. I did and I didn’t. What I found was small (mostly inactive) groups or one slightly larger one that had to celebrate ‘re-birthdays’ every 5 minutes and shared nothing useful or constructive. Not my cup of tea. Oh, and when I mentioned Substack in a post on that same group, and my FREE book on my experience, I got a warning that I wasn’t allowed to ‘promote’ myself for personal gain?! I left.

I was never going to be the person that wished her husband ‘happy birthday’ on Facebook while lying in bed right next to him. Nor could I bother to take the time to document my (generally boring) daily life with multiple posts a day.

Yet I would scroll. And scroll. Flicking through pictures. Adding the odd like where a real friend had done something or been somewhere nice. But I’d also allow myself to be sucked into rubbish - watching videos from people who thought that they were self-styled influencers, who I didn’t know from Adam, and I really didn’t care what they looked like in the latest hideous dress that they’d ordered on line. Yet I still watched.

When it comes down to it I wasted time that I know full well was too precious to waste.

But why have I teetered on the edge of leaving for so long? What held me back from leaving entirely? It’s simple. When it came down to it I didn’t want to lose that connection with a couple of real friends who I didn’t see frequently, but who posted enough that I didn’t want to miss what was going on in their lives.

Then I realized I could probably find another way.

Many of you will have seen the recent court ruling against Facebook and YouTube labelling them as addictive. And apparently there’s a slew of cases coming through the courts behind that one. But that wasn’t what pushed me over the edge.

When I started reading (well, ‘listening to’ to be exact) CARELESS PEOPLE I knew it could be the final straw. But I was oblivious to just how much impact it would have on my perception of Meta, some of the people leading the company, and it’s driving need to keep making more, and more, and more money any way that it can. Ethically or not.

And yes I know, it’s a book by one person. Who has her own bias. But even then the content is too horrific to dismiss.

Let me go off topic for a minute, I’ll explain why a little later.

Does anyone out there remember ‘The Clothes Show’? It was a TV show that ran in the UK on BBC One from 1986 to 1998. And apparently was reincarnated - after I’d left the UK - from 2006 to 2009 on UKTV Style. Not only was it a popular TV show, it also spawned a monthly, glossy magazine, and an annual live event.

Mum and I went to the live event a couple of times in the early 1990’s. I loved it. I adored fashion, making clothes, and like many young women dreamed (quietly) of being a model. So I was ecstatic to find that you could queue up and book yourself a little photo shoot on the day. And from those photos they would create a (fake) magazine cover with your face on the front! I was in heaven. My picture, stored in my memory box of treasures, is a bit dirty and distorted, but here it is…

It must have been December 1992. Long before the era of ‘SoMe’. I was young, impressionable, just a couple of years post a period of anorexia, and like so many young women I was way too worried about my appearance.

These days it seems that Facebook sells young people to the corporate world. Young people are one of their ‘products’, as I found out in CARELESS PEOPLE. Imagine that I’d put this picture (or another selfie) up on Facebook. And then I took it down. Perhaps I got self-conscious. Thought my face was too round. My lips a little wonky. Facebooks algorithms could spot that I’d done that and would then bombard me with beauty adverts. How would that have affected my young, vulnerable mind? I can’t imagine it would have been in a good way.

And that’s just one small example of the way they seem to operate - there are many more that are far more shocking. As I got to the end of the book I decided that I was done. It was time.

I guess I have to class myself as ‘lucky’. Nothing ties me to either Facebook or Instagram. I don’t need access to the job boards they host or local community / interest groups. I have no need to promote my business on there. And if I ever get to promote my book then I’ll find other more creative solutions.

I remember years ago I did make an attempt to leave Facebook. I hit the button to delete my profile. Then I got an email. Your profile is still there if you want it - you just have to log back in. WTF?! A few weeks later I gave in and did indeed log back in. FOMO won.

So I went looking for that delete button again. Could I find it? I hunted for what seemed like ages, though it was probably just a couple of minutes as my patience had run out and I wanted to get this done NOW! Still I couldn’t find it.

So what did I have to do? I had to Google it! Twice obviously as the button is hidden in two different places in the Facebook and Instagram worlds. How ridiculous is that? Finally I found THE button(s) buried where you’d least think to find them.

Clicked. A sigh of relief. It was done. I was free.

But was I?

There was a final (email) insult still to come.

I’m an adult. I know my own mind (most of the time)! And it had taken me forever to find the right button. But still they thought that perhaps I’d made a mistake?! They wanted to give me time to regret my decision. So generous. And yes, that’s dripping with sarcasm. They sent me this email - I got something very similar from Instagram. Did they have any idea that they’d just put the final nail in the coffin?

I’m thinking about holding a little celebration on the day. To raise a glass to the time I’ve got back, to no more doom scrolling, and to the fact that I’m no longer part of the Meta sales machine. Except for WhatsApp that is, but you have to know which battles are worth fighting and right now it’s not that one.

Do I miss it? Yes, a little so far. But not enough to regret it.

I would dearly love to leave LinkedIn too. It seems to have degenerated into Facebook by another name. But I can’t right now because of my business. It’s my online CV. But in a few years, when having a profile on there is no longer important to me from the work perspective, then it will be part of the past just like Facebook and Instagram. I’ve already moved my business ‘website’ over to a page on my Substack. And deleted the LinkedIn app from my phone so I’ll just access it from my computer when needed.

And of course I worry about Substack. It’s also free, unless you choose to pay for newsletter subscriptions of course. Will we ultimately become the product and be sold to the highest bidder? As a platform I’m well aware that it’s also far from perfect - I’m not even going to mention what’s been going on this past week as there are plenty more eloquent posts about who should or should not be on here. But at least (for now) it’s a place I enjoy and that serves my purpose.

I guess time will tell.

Thank you for reading or listening along. If you liked this post then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each and every one of you.

In case you missed it, I published my book - Hold My Hand: A Journey Back to Life - here on Substack last year. If you’d like to read it then you can find each chapter by clicking HERE and it will take you directly to the webpage dedicated to the book.

If you would also be kind enough to share it I would be eternally grateful as it will help more people learn about these deadly infections. Maybe one day that knowledge will save a life.

Thank you!

As a child I absorbed the story that she’d been dumped on the steps of a church at 2 years old and was brought up by the vicar and her sister. A profoundly deaf child whose family couldn’t cope with her. Mum corrected my version and said that she was left on the steps of a nunnery at 3 years old. But as we know now both versions were actually family fairytales and a sanitized, fictional account of what really happened. Today I thought I’d continue the series by starting from the very beginning - her birth, her parents, and her early years.

I should also note that we are still in the process of trying to find out more. As anyone who has done any family history research knows we think that the information we have currently is correct, but sometimes you can find out later that you had some or even all of it wrong!

And don’t forget, if you prefer to listen to this post then you can click on the play button to hear my voiceover. Enjoy!

Ellen French, who would later be known as Granny G, was born on Tuesday 24th November 1903, at 11 Tilson Road in Peckham. An address that no longer exists. Apparently the weather that month was fine, dry, and sunny, with a fair amount of fog and frost, but nothing noted as severe - unlike the (historically) torrential rain the month before.

She was born just seven weeks before the Wright brothers successfully flew the Wright Flyer for the first time at Kitty Hawk, North Carolina on 17th December 1903. In the summer of that year the inaugural Tour de France was held and won by French bike rider Maurice Garin. And a number of well known celebrities - such as Bing Crosby (3rd May) and George Orwell (25th June) - were also born that year.

When she was born London was growing rapidly. Based on data from the 1901 census, and estimates for the early 20th century, the population of Greater London in 1903 would have been around 6.6 to 6.7 million people. The population rose dramatically in the space of a single decade - from an estimated 5 million in 1900 to over 7 million by 1911.

It wasn’t until around the time that Gran reached pension age that her children - my father and his sister aka Aunty Mary - realized she didn’t have a birth certificate. As she said herself she didn’t like ‘abroad’ so had had no need for a passport and no reason to find a birth certificate. They’d no idea if the name she used was correct. If her date of birth was correct. Or the definitive names of her parents.

They started digging.

Above is a copy of Granny G’s birth certificate. Her mother was listed as Mary Ann French, formerly Hudson and her father as Alfred French. They had married on 17th August 1890, when Mary Ann was 18 years old and Alfred the ripe old age of 23.

Dad also found an older sibling - a brother called Alfred Thomas French - born in 1891, almost exactly a year after his parents marriage. He would have been 12 years old by the time Gran was born. He’s also proved to be a mysterious character - more on that in a later post.

They kept digging.

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In the 1901 census - completed two years before Gran was born - he found her mother. She would still have only been in her late 20’s. She was listed as living at 11 Tilson Road - the address later used on Granny G’s birth certificate - with Grans older brother.

But… and listen it’s a big BUT… now she was listed as a widow. So the man named on Granny G’s birth certificate simply couldn’t have been her father - he’d been dead for at least two years. He was a ghost.

We haven’t been able (as yet) to find out what happened to Mary Ann’s husband, Alfred French. Dad found the death certificate of a man with the same name who died of pneumonia and cardiac failure on 8th May 1899. However, the age is off by a couple of years. The address doesn’t seem to fit. So it’s very unlikely that he is actually our Alfred French. Another mystery to solve.

So who was her father? We don’t know. And it’s unlikely that we’ll ever find out. But going by the 1901 census, and her mothers status in those records as not only a widow but also as head of the household, we’re almost sure that it wasn’t Alfred French and yet that was the name her mother gave when she registered Grans birth on 6th January 1904.

We have to assume that her mother was trying to make her look legitimate. But it seems that at some point her efforts came to nothing. In later workhouse and school records Gran is recorded as illegitimate. So someone, somewhere along the line, worked out that there was an ‘error’ on her birth certificate.

You can understand why her mother did what she did - for her own sake and for her child. Being a single mother, or carrying the stigma of being an illegitimate child, in 1903 was an unimaginably awful predicament when we try to understand it from our perspective here and now in 2026.

Her mother would likely have been shamed, humiliated, and even shunned. And things wouldn’t have been much better for Gran, when she grew up, as an illegitimate child.

Single mothers often formed the poorest sector of society. Finding work was close to impossible. And they frequently suffered from malnutrition and had limited access to healthcare. For some their last resort was prostitution and selling their only remaining asset - their own body.

Single mothers were also sometimes forced into the workhouse…

Workhouses were where the neediest in society had to perform hard physical work to get compensation in the form of the most basic food and shelter. They were the primary method of state-mandated welfare for the poor. But often you still had to prove that you were worthy of being given this support. And going into the workhouse changed your legal status, for example removing your right to vote (obviously only applicable to men at that time).

Those living in such places were called inmates. Inmates wore uniforms, followed strict rules, and were under the control of a master and matron. And yes, these were essentially prisons. The poorest people of society were punished for being poor.

Inmates couldn’t leave of their own free will and had to request permission to go out, even for short periods, for example when they went out to search for work. If one person in a family left the workhouse then they all had to leave. If you were elderly, sick, disabled, (a single mother), or were simply unable to find work in London at that time, then you could end up in the workhouse.

On the 1st October 1908, Gran, her mother, and her older brother are recorded as entering the Gordon Road Workhouse - run by Camberwell Board of Guardians. Gran was still a couple of months away from her 5th birthday.

We don’t know why they ended up going into the workhouse that day. Was it simply a last resort as her mother had no money? Were they forced in there because someone found out that Gran was illegitimate? Or was it something else?

The Victorian buildings that were Gordon Road Workhouse as they look today after being converted into residential flats. Built in 1878 to house around 700 able-bodied inmates who paid for the roof over their heads by performing hard, physical labour each day. Men had to break stones or chop wood, while the women did laundry, cleaning, or kitchen work. The workhouse was built in the grounds of another building - Nazareth House - which had previously been a convent. Could that have been inspiration for the family fairytale that Gran was dumped on the steps of a nunnery? Image credit: Google Street View

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Children had previously lived in the workhouses, in addition to adult men and women who were segregated in different wings. Families were split up as soon as they entered. But the The Children Act of 1908 (the very year Gran and her family went to the workhouse for the first time) was part of the changing landscape of child welfare, providing legislation to remove children from the harsh workhouse environment.

The following day, after they entered the workhouse, rather than being moved to a home for children the records show that Gran was admitted to Camberwell Workhouse Infirmary. Located just over a mile from the Gordon Road Workhouse where her mother and 17 year old brother remained and attached to another workhouse also run by the same Board of Guardians. That hospital would become Camberwell Parish Infirmary in 1913 and in 1948 it was renamed once more to St Giles’ Hospital, which continued to serve the community on that same site until it closed in 1983.

Gran would remain in hospital until she was discharged on 8th December 1908 and taken out by her mother.

We don’t know why she was in hospital for over two months. Though we are continuing to try and find out. Could it have been something to do with her deafness? Was it scarlet fever which was still running rife in London in 1908? Was it some other childhood ailment?

It’s a strange coincidence that scarlet fever is caused by the bacteria Strep. pyogenes, the same bug that caused my necrotizing fasciitis and tried to kill me by eating its way through the flesh of my left leg and abdomen. If you haven’t read that story then start here:

Within a few days of her release from hospital, on 13th December 1908, Gran is recorded as entering the Newlands home for children - one of many also run by Camberwell Board of Guardians to look after more than 600 children in their care. In the vast majority of cases children who had a (often single or widowed) mother recorded had lost her as she had entered the workhouse and just a handful had a mother in an infirmary or asylum. Only around a quarter of the children in care in Camberwell at that time were in fact orphans.

Gran would stay at Newlands for five months, until 22nd May 1909, when she was admitted to hospital again. Once more she was there for almost two months and was ultimately discharged on 17th July 1909. Could it indeed have been scarlet fever, that had resulted in rhematic fever, which put her back in hospital? Or was it something totally unrelated to the reason for her hospital stay at the end of the previous year? We don’t know, but I definitely want to say ‘yet’.

Once she got out of hospital the second time it seems she then went back to living with her mother at a couple of different addresses. Then almost a year later on 7th June 1910 she went back to the Newlands home for children for a few days.

We don’t know exactly what happened in the next few months. But we do know that on 4th October 1910 she was transferred to the Royal School for Deaf Children in Birmingham. It would have been a little over seven weeks before her seventh birthday. She was just a little girl. Removed from everything and everyone she’d ever know.

Along with her school admission record there’s a note - “no contact with mother to be permitted”.

To be continued.

If you liked this post then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

In case you missed it, I published my book - Hold My Hand: A Journey Back to Life - here on Substack last year. If you’d like to read it then you can find each chapter by clicking HERE and it will take you directly to the webpage dedicated to the book where you can read or listen.

If you would also be kind enough to share it I would be eternally grateful as it will help more people learn about these deadly infections. Maybe one day that knowledge will save a life.

Thank you!

As many of you will have gathered I’m introducing some new themes to my Substack now that I have finished writing and sharing my book. A couple of week ago I launched ‘The Granny Gatehouse Project’. And this week I’m introducing another series of posts called ‘Memory Box Moments’. It’s a very literal tag as each post will focus on a particular moment in my life and be inspired by something that I’ve kept in my memory box.

Before we begin a quick comment about this particular post. Just to be clear, this story relates to my first wedding and first husband. It’s totally unrelated to Kim who is my second, and much beloved, husband. Did I mention that I found his handwritten speech from our wedding in my memory box last week? Something for another post another day.

And don’t forget. You can also listen to this post instead of peering at a screen. I enjoy writing, but I absolutely adore recording my own voiceovers. I hope you enjoy me chuntering away in your ears too.

My first husband asked me to marry him at some point in 1990 - I don’t remember exactly when. I would have been 23 years old that year, he was just 3 months younger than me, and we were already living together.

We’d just been down to visit his parents in Hampshire for the weekend - the first time we’d stayed with them as a couple. In my minds eye I can still see his mother showing me to my tiny bedroom, with a single bed covered in a flowery eiderdown shoved up against the wall. The room was that small. I was totally confused. Apparently he would be sleeping in his old room - on his own. Their house, their rules, and no opportunity for discussion.

Nobody could say that they weren’t old fashioned. As I’d find out later I would continue to develop my persona non grata status over the coming years, even once I was officially their daughter-in-law. They’d have much preferred me to be at home in the kitchen - cleaning and cooking - with a couple of kids running around. Instead I was studying for a degree, then a PhD, developing a career of my own, and generally having a life. At least their dog always loved me and greeted me enthusiastically - much to his mothers annoyance!

But I digress.

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After we got home from that first visit we were lying in bed the following morning. We started talking about what had happened and the ridiculous requirement for us to sleep in separate rooms. Neither of us thought it was reasonable. But discussing it with his parents, and getting them to see reason, wasn’t going to happen. So what to do instead? Well, we swiftly decided that the best way to avoid that happening again was to get married. Yep, I said married!

There was no proposal. No proclamation of love or getting down on one knee. No candlelight and roses. Not even a ring at that point. Just a practical, mutual decision. Is it a surprise that I moved to Denmark (without him) 11 years later?!

Within hours I’d designed my dress. I was so excited to finally make that dress. I’d dreamed of it for years so it was already in my head. It took no time to get it down on paper. Sadly I don’t have that original drawing in my memory box - I wish I’d kept it. I think - like many things - it got thrown out when I moved to Denmark, along with the husband!

I wasn’t a trained designer or seamstress - though we had professionals in the family. But I loved clothes, especially wedding dresses, and was pretty handy with a sewing machine thanks to lessons from Mum and Granny P. I’d even dabbled with making a variety of clothes - suits, evening dresses, bridesmaids dresses, and even a wedding dress, for people to make some extra money. I’d also worked in fashion for a good few years at (the oh so glamorous - not) C&A - remember the rainbow on every high street?!

So of course I was going to design and make my own dress. It never even occurred to me that I wouldn’t or couldn’t do it.

There was no rush to start on actually making my dress as we didn’t plan to marry until spring 1992, more than a year away. At some point Mum and I took a trip into London, to visit John Lewis on Oxford Street, to buy the fabric. A fake (i.e. polyester) raw silk in a beautiful pearly cream. You would’ve had no idea it wasn’t real silk unless you got right up close. We bought meters and meters and meters of fabric for the princely sum of about £100.

In September 1991 I started at university, as a mature student, to study for a degree in Human Physiology. I was the ripe old age of 24 so not really so mature. More a grown up teenager. But I had a flat. A mortgage. A fiancé. And only a student grant to live on - it was back in the day when those still existed. So my main mode of transport was a bicycle. Cheaper than the train. Quicker than a bus. But… a lot more lethal in the busy traffic of East London.

On Thursday 14th November 1991 a car turned through traffic and right across in front of me and my bike. I was just a few feet from his front wing with no chance to hit the brakes until it was too late. The impact folded the front wheel of the bike back into the frame and I sailed over the front of the car, apparently putting out my right arm to save myself. You can read more about that day, and my fascination with ‘blue lights’, in my book.

The short version is that I dislocated my right collar bone, or clavicle to give it it’s proper name. I couldn’t use my right arm. A 5 hour operation was required a few weeks later to try and repair the damage. Then there was weeks of rest followed by physio and rehab. And I hadn’t started to make my dress yet!

By the time I could get going there were only a few weeks left before our April wedding. Amazingly I didn’t panic. I don’t remember even being anxious about it. I knew how fast I could put a dress together. Why would this one be any different? I just got on with it.

A fitted long-line bodice with tiny buttons down the back. Perfectly lined to hide the seams and give it the luxurious feel of real quality as it slid on. A soft ‘meringue’ full skirt, flowing out from my hips with frothy petticoats underneath. Sleeves that came down over the back of my hands in a V-shape with little strings of pearls that went around my middle fingers. Handmade roses and gathered lace adorned the upper edge of the bodice. All designed to sit on top of an amazing, bespoke, white satin and lace corset from the esteemed Rigby and Pellor - the Queens lingerie supplier at that time - hidden on a side street right next Harrods in Knightsbridge.

Just show me the dress I can hear you say! Well, here you go…

Image caption: 18th April 1992 I’m sitting in Mum and Dads lounge - with a big tent right outside the sliding patio doors, set up for our reception after the wedding ceremony at a nearby church. My design was always off-the-shoulder and I had no intention of changing that even after my cycling accident and shoulder surgery. Look carefully and you’ll see that the collar bone on my right side is sticking up. It was repaired a second time, by a surgeon who specialized in rugby injuries (as it’s a common injury in that sport) a couple of years later when the original repair failed. Amazingly my shoulder is fully functional these days and I can prove it by hammering out a couple of kilometers of front crawl in the pool multiple times a week.

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Not only did I make the dress from scratch, but I also made a hair band of fabric roses with pearl centers to match. The picture lacks a bit of detail, but the head band (originally a tartan monstrosity that I got cheap!) was first covered in the same silk and then I made fabric roses, like those around the top of the dress, that were then sewn all over it.

After we decided to get married I got lost in designing, dreaming about, and making that dress. I was absorbed in planning the wedding. Arguing about Amenably agreeing the guest list with our parents. Selecting, ordering, and sending out the ornate, classic 90’s, invitations - including those little formal reply cards for each person to confirm if they were coming on the day. Ordering the tent for the reception in the garden, planning the food, and praying hard for good weather and for the daffodils to still be out.

Did I truly consider if I was marrying the right person? No. Did I think about the fact that I was promising to spend the rest of my life with this person? No. Did I ask myself if we’d made the decision to get married for the right reasons? No. Did I think it was time to get married and that was what was expected of us? Yes. Was I right? No, I don’t think so. And would I do it again? Probably. Otherwise maybe I wouldn’t be right here, right now.

From the get go the dress was far more important to me than the marriage itself. I know, you don’t need to say it. Talk about upside down priorities. But I could only finally see that when I married Kim. Second time around was the charm. And so different. I would have worn an old sack just as long as the end result was guaranteed - that I got to marry him and be with him for the rest of my life. So far (18th wedding anniversary imminent), so good.

I bought that second wedding dress instead of making it. It definitely wasn’t an ornate, flower-adorned, meringue this time. Instead this one was a sophisticated, elegant, bias-cut, Hollywood movie heroine type of dress. I’m sure you’ll see it in all it’s glory in a future post. But for now it hangs in a cupboard right beside the desk where I’m sitting. And I most definitely plan to wear it again one day.

However, I’ll always love my first wedding dress. I’m so proud that I designed it and made it myself. Do I still have it? Sadly, no. Another thing that became part of my past when I left that husband, and the UK, back in 2003. In the end Mum sold it for me - in actual fact I think we gave it away when someone agreed to pay for the postage to send it to them or collected it. I hope it found a good home. Maybe it’s even still out there somewhere.

But I’m happy that I can cherish the pictures of it in my memory box.

Thank you for reading or listening along. If you liked this post then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each and every one of you.

In case you missed it, I published my book - Hold My Hand: A Journey Back to Life - here on Substack last year. If you’d like to read it then you can find each chapter by clicking HERE and it will take you directly to the webpage dedicated to the book.

If you would also be kind enough to share it I would be eternally grateful as it will help more people learn about these deadly infections. Maybe one day that knowledge will save a life.

Thank you!

In my post a couple of weeks ago - A glimpse of sunshine… maybe! - I mentioned Granny G - Dads mum - and my wish to be able to travel back in time to learn more about her life, especially the early years.

Over the coming weeks and months I plan to write more about what Dad (and Mum) and his sister - Aunty Mary - have managed to find out about her. You’ll be able to spot each post as it will always have the sub-title ‘The Granny Gatehouse Project’. Today I thought I’d kick off the series by sharing a couple of the fairytales related to her that fascinated me as a child and as an adult.

I hope that someone out there will find the stories about her life interesting.

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Every family has stories. Some fact and some fiction - whether the people in question realize it or not. Some stories have been consciously changed to sanitize the past. Sometimes to make what happened more palatable or socially acceptable. And to perhaps protect the perceived reputation of the family. Some have gradually evolved unconsciously. Embellished with new supposed ‘details’ - moving farther and farther from the truth over time. Ultimately they become pure fiction, even if nobody realizes it. But true or not these stories continue to be shared and passed down through the generations.

I was lucky enough to grow up with two grandmothers - Granny P and Granny G. And no, I’m not anonymizing their names to protect the innocent - they’re both long gone. Those were literally the names I called them, the letter denoting their last name - P for Phillips and G for Gatehouse. Maybe in the company of just one of them them I’d just call that person Gran.

Our family was small and these days is even smaller. Granny P had one child and Granny G had two - though it would have been three if her first born had survived. For both of them I was their only grandchild. They lived into their 90’s (my 30’s) and survived decades longer than each of their husbands who sadly died just before, and a matter of weeks after, I was born.

Granny P lived a few miles from us so we saw her more. She’d turn up every Tuesday evening to look after me while Mum and Dad went off to play squash. Or come over to help out when I was off school sick. Sometimes when Mum and Dad were going out then I’d go and stay overnight with her as long as I promised Mum that I’d be ‘good as gold’!

But Granny G lived much farther away in Caerphilly, South Wales. It was the days before the M25, and even a complete M4, so I remember the arduous three hour plus drive each way all too well. The dodgy motorway service stops to use the bathroom and stretch our legs. There were no tablets. No mobile phones. No entertainment other than perhaps the radio and Dad singing traditional Welsh songs as we crossed the Severn Bridge into his native Wales.

During my childhood Granny G lived in a ground floor two bedroom flat just around the corner from my god parents and their three sons. It was a reasonable size, but I remember it as dark and the bathroom as exceptionally cold in winter. And then there was the fact that I got to choose to either sleep in the same room as my parents, and lie awake listening to my Dad shake the entire room with his snoring, or sleep on a camp bed in the lounge listening to a whittering budgie all night! Definitely a catch 22 and I learned to sleep with my fingers stuffed in my ears.

In later years Granny G moved to a sheltered flat nearer my Aunt and closer to my parents. I still remember that she had a cleaner who came to help her one day and she wouldn’t even let her in the front door. If Gran didn’t want to do something, or understand what you were trying to say for that matter, she could be a defiant soul!

I already mentioned budgies, but Gran adored all animals and birds. She would shower any animal that she could get hold of with cuddles and big squeaky kisses. Our first cat, Chania, had an early warning system - as soon as she heard Granny G walk in the front door of our house she would rapidly exit out of the back door. Refusing to come in from the garden for multiple days in a row or until she knew Gran had left for home. As a cat she wasn’t that social with the rest of us either, preferring to sit by a door and guard whichever room we were in rather than sit and be stroked on a lap.

Image caption: Granny G in Mum and Dads kitchen circa 1983 - check out those mustard cupboards and patterned tiles! In this case she’s cuddling my little rabbit Sooty. My other rabbit at the time was white, with silver grey ears and bob tail, what was he called? Silver?! Yes, I tend to be a very literal person.

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I knew as a kid that Granny G was different. I watched as she communicated with Dad by doing strange things with her hands and he’d reply by doing equally strange things with his hands. According to Mum, when I was little, I’d sometimes try to join in by doing some random flapping of my own hands and fingers!

As I got a little older I understood that this was sign language and would learn the sign alphabet on a rather (too) snowy ski holiday.

Image caption: I think this was the ski holiday in question where I learned the basic sign alphabet. We took ‘the Grans’ with us a number of times, especially when I was young. In this case it was April 1974 so I had turned 7 years old days before - I just love that look on Granny G’s face! None of us look like we’re having a good time, including me, which is a surprise considering the picture is being taken by Mum with my camera. And what about that matching check lampshade?! The height of 1970’s fashion.

I understood pretty quickly that if Granny G wasn’t looking at me then I couldn’t communicate with her. In fact she was profoundly deaf and only had a small amount of hearing left right at the top of her range. To get her attention, if she wasn’t looking at you, then you’d have to do a high pitched whistle and generally she’d react - if she felt like it!

I don’t remember what questions I asked or precisely when or how I was told the story about her. I think that I knew that she hadn’t grown up with loving parents like me. At some point I was told that she’d been dumped on the steps of a church when she was around two years old. The assumption was that her family couldn’t deal with her deafness. And she was then raised by the vicar of that church and his sister. Right?

I think I just accepted the story. I don’t remember questioning it. Yet I couldn’t imagine it. How would it feel to have been left behind like a bag of old clothes? Then again I’m not sure that I thought it through that far. The story fascinated me. Wasn’t she lucky to have found the vicar and his sister who took her in and cared for her?

But the whole thing couldn’t have been more fictitious. There wasn’t a grain of truth in it - other than that Gran was indeed profoundly deaf and didn’t grow up with her birth parents. We now know that it was our biggest family fairytale, of anything identified thus far, and very different to the true story.

Nobody seems to be sure exactly where this fictional story came from - it may perhaps have been created and shared by her husbands mother. Used to sanitize what must have been a very hard start to her life as an illegitimate child, of a widowed mother, who was living in probably extreme poverty. A child who at almost seven years old was legally removed from her mothers care by a court, who sanctioned that no further contact was to be allowed with her mother. More on that true story in a later post.

My second fairytale was all of my own (childhood) making. And relates to Grans last name - her married name - Gatehouse.

I was and always will be a romantic. I can’t help myself. As a child I dreamed of big houses and castles. Of romances between masters of the manor and female servants. In my mind I created a story about the man that lived in The Gatehouse to a large estate with a drive that went on forever, rolling green lawns, and a spectacular house. A man who took his name from his trade - as many people did at the time. And married the prettiest girl from the neighboring village.

Another dream. Definitely fictional. But I perhaps a possibility?

These days you can go on Google and search for information on the origin of a name to your hearts delight. One website told me that the name Gatehouse comes from the Germanic personal name Godhard, composed of ‘god’, which means good, and ‘hard’, which means brave or strong. Hmmm, I quite like that.

Another site suggested that Gatehouse is derived from geographical locality - OK that’s a little closer to my dream. It could have been 'at the gate-house' of the monastery, church, country house etc. Another similarly described it as a topographic name from Middle English gatehous, taken by someone who lived in the gatehouse at the entrance to a park, city, or other enclosure. Well, that fits with my story, maybe?

But as it turns out, not even close, and definitely no cigar. When Dad delved into our family history he found that our original last name wasn’t Gatehouse at all. In fact we’d been called Gittoes. One ‘t’ or two - I’m not sure.

At some point, well over a hundred years ago, someone thought they’d make it prettier or more attractive and changed it to Gatehouse. Though at the time a whole bunch of people called Gittoes all changed to Gatehouse, so perhaps we were trying to out run the law (!) or were trying to get away from some kind of blemish to the family reputation? Maybe we had a highwayman in the family?! There I go again… Whatever happened, there was definitely no fairytale castle or gatehouse for that matter.

Two family fairytales. Two different sources. And one that I’ll expand upon in future posts. The Granny Gatehouse Project has officially gone for lift off…

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If you liked this post then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

In case you missed it, I published my book - Hold My Hand: A Journey Back to Life - here on Substack last year. If you’d like to read it then you can find each chapter by clicking HERE and it will take you directly to the webpage dedicated to the book where you can read or listen.

If you would also be kind enough to share it I would be eternally grateful as it will help more people learn about these deadly infections. Maybe one day that knowledge will save a life.

Thank you!

We’ve now also had three weeks of living with a dog who is fine one day and then so sick that she’s being rushed to the vet the next day - more than once. Add to that I had to get some work finished for a customer, which took far longer than it could have done, and if I’m honest I should have completed back in December.

Oh yes, and then there’s the arctic temperatures confining us to the house and requiring one too many hours shoveling snow off the drive and path to the front door. As I write it’s bloody snowing again… there will be more delightful shoveling later!

Is it really any surprise that my mojo has up and left comes to writing? I don’t think I’ve posted a full length missive since November, or even maybe October. I haven’t written so little in the past couple of years as I have lately.

This post has been sat open on my computer for weeks. I write a few words. Give up. Go do something else. At least this post has survived. There are a bunch of others that I’ve started, gotten half way through writing, and then in a fit of peak deleted in their entirety. Not even saved as a draft.

Back in November and were kind enough to nominate me for the Sunshine Blogger Award. Very nice of them both considering I’m definitely not particularly known for writing about sunny topics!

In an attempt to get myself moving again, and taking into account that it’s been a while since I introduced myself, I thought it might be a good time to answer some of the questions that Francis and Cherry posed as part of their nominations. Hopefully it will tell you a little more about me, other than the fact that I survived a major tussle with necrotizing fasciitis, aka some little flesh-eating bacterial bastards, back at the end of 2022 and start of 2023 and came way too close to meeting my maker. Anybody who watched THE PITT last week (season 2 episode 5) will know what I’m talking about.

Much as I’ve tried I haven’t been able to put my hand on Cherry’s note with her questions - sorry ! But I did find Francis’ post so here goes with her questions.

As I’m now months behind the wave I won’t be nominating others for the award, but I have shared in previous posts some of the people I most admire and enjoy reading here on Substack.

So before I hit delete again let’s get this going:

Q1. If you could have a superpower for one day, what would it be?

I’m not sure if it counts as a superpower, but I would love to be able to time travel. Why? Because I’m fascinated by people - specifically in this case Granny G who was my Dads Mum and died a bit more than 25 years ago.

As a child I was told she had been left on church steps when she was just 2 years old as she was profoundly deaf - we guess as a result of her mother having rubella during her pregnancy. It was a story that fascinated me. But in reality we now know that she was legally removed from her (single) mother by a court when she was around 7 years old. You can just imagine how that went considering it was the early 1900’s.

Both my Dad and my Aunt have tried to trace her origins and family history, but it’s proved difficult. I’d be fascinated to have the opportunity to go back and ‘see’ her childhood, get to the truth of her story, and ask her (and her family) so many questions. And yes, of course I’d love to write all about it.

Q2. Which celebrity would you swap lives with for a week?

I don’t have a yearning to be famous or to be in the spotlight. Though I do love a bit of performing when I’m doing my day job running training workshops.

When it comes down to it I like my own life too much. So I don’t really want to swap it for anyone else’s even for a week.

However, I would love to get my book (Hold My Hand: A Journey Back to Life) out to a wider audience to help other people who have been through some sort of traumatic life event. If I absolutely had to swap lives then it would have to be with someone who had a platform and could help me do that.

I’m open to suggestions - who do you think it should be?

Q3. What book do you wish you could read again for the first time?

Without doubt it has to be Me Before You by . I adore that book and have so much respect that she took on such a challenging topic.

This time though I wouldn’t read the final chapters on a plane and scare both the airline staff and surrounding passengers (while totally embarrassing myself) by ugly crying all the way from London Heathrow to Copenhagen. Thank goodness it’s only a 90 minute flight!

Q4. If you could have dinner with an author, who would it be?

I could probably pick ten different people, but the one that stuck in my mind when I really thought about this was Dr. Rachel Clarke. Not only is she a phenomenal non-fiction writer, and previously a current affairs journalist, but she is now a doctor specializing in palliative and end of life care.

You may have seen the TV adaptation of her book Breathtaking, based on her own experience caring for people during the COVID-19 pandemic in the UK.

Or perhaps you’ve come across her most recent book The Story of Heart: Two Families, One Heart, and a Medical Miracle that tells the very real story of two children. One who ends up sadly becoming a heart donor - Keira - and the second who becomes the recipient - Max.

Their names are synonymous with organ donation as Max and Keira’s Law came into effect in 2020. It had changed organ donation in England into an ‘opt-out’ system such that people have to explicitly record that they do not want to be an organ donor if they die rather than the reverse. I’m happy to say that Denmark have also made the same change.

The book is both fascinating and heart-breaking all in one. Rachel has a gift when it comes to explaining medical information in a way that is easily understood by everyone while keeping the narrative moving so that you can’t resist but to turn to the next page.

What would I ask her at dinner? I would definitely be quizzing her about what she’s planning to write next…

Q5. Who would you like to be stuck in a lift with?

The whole idea of getting stuck in a lift gives me the horrors. I’m not mega claustrophobic but you’ll never find me crawling into small enclosed spaces by choice. Those people that climb deep into cave systems and start crawling through tiny spaces make my heart race and my palms sweat! Put me into the confined space of a MR scanner and my eyes are tight shut and I’m fighting to control my breathing.

So I’m going to cheat and say I’d like to be with a lift engineer who can fix the darn thing and get me out of there!

Q6. Who is your favourite author?

Oh wow - this one changes depending on my mood, where I am, the type of inspiration that I’m looking for, and often what book I’ve just read. It’s impossible for me to pick just one.

I sometimes say that when I read a book it goes in one eye and out the other. That’s commonly the case for many fiction books, but it’s more likely that a non-fiction book will stick in my mind long after I’ve read it.

In non-fiction I love Rachel Clarke as I already mentioned and people like who broke my heart with Shattered, Michael Rosen who made me feel less alone after I got sick with Getting Better, Matt Haig who connected with my soul with Reasons to Stay Alive and Rob Beckett who had me howling with laughter and who inspired me to believe that I too could write a book with A Class Act. And as you’ve all probably gathered by now I’ve read or listened to more memoirs than you can shake a stick at and and far too many to list here.

Some authors like Matt Haig have also crossed onto my list of favorite fiction authors with books like The Midnight Library and The Life Impossible. He and , are definitely on my ‘buy every new book as soon as it comes out’ list.

When it comes to fiction I want to be entertained. To escape and get lost in a story. And it absolutely has to be a page-turner. It definitely shouldn’t be too descriptive - “get on with it” I’ll be saying in my head. Books I love will not generally be classed as literary or high brow - no offence intended to any of the authors that I’ve mentioned! I’m not looking to be challenged. Enjoyment is paramount. And I never read what other people would call ‘the classics’.

I love a bit of real life, ideally with some romance thrown in for good measure. To name just a few of the authors I enjoy most - Wendy Wax, , , David Nicholls, , Santa Montefiore, Fern Britton, Karen White, Jane Fallon, Jodi Picoult, Shari Low, Lucy Dillon, Colleen Hoover, Nick Alexander, Lucy Score, Sophie Kinsella, Nicholas Sparks, Elin Hilderbrand, Lucy Diamond, and Rebecca Yarros. And before you ask - yes - I get through a LOT of books.

And if I’m in the mood then my other genre has to be crime. Also top of my list of all time favorite authors is Michael Connolly - I have read every book as soon as it’s been published over the past 25 years. And I am fascinated by his new ‘Killer in the Code’ podcast about the Black Dahlia and Zodiac murders. But also add to the list - John Grisham, Robert Crais, Kathy Reichs, Patricia Cornwell, and my latest favorite Robert Galbraith - the Strike books are absolutely brilliant and I can’t wait to see the upcoming TV adaptation of The Running Grave.

OK, that answer is now stupidly long so I think I’d better move on and stop prattling.

Q7. If you could steal anything without ever getting caught, what would it be?

It would have to be a bank vault full of gold and diamonds, but of course nothing anyone would miss or that would hurt anyone else by going missing.

(I’m making up for the previous answer by keeping this one extra short!!!)

Q8. If you could escape and live in the world of any book, which one would you choose?

The one that jumped into my mind first was The Notebook by Nicholas Sparks. Probably not an obvious choice. I’ve read all his books. And seen all of the movie adaptations. But this is the only one I’ve read more than once. And that is an especially rare beast for me. I can count on one hand the number of books that I’ve read more than once. Actually, thinking about it, it might be more like one finger!

It’s not particularly the place I want to live in, but more the feeling of warmth, love, and devotion to another person, that he evokes. And yes, I am a total romantic softie at heart.

I also adored the movie adaptation with James Garner. I ‘met’ him (aka he walked close enough to me for me to shove my autograph book at him) at a celebrity golf tournament when I was fifteen - on the 26th September 1982 to be exact, at Moor Park Golf Club in Rickmansworth, Herts (UK).

I still have his autograph in my little yellow Snoopy book, along with the likes of Telly Savales (without the lollipop!), Howard Keel, Neris Hughes, Ronnie Corbett, Greg Norman, Henry Cooper, Bobby Charlton, and Daley Thompson, carefully stored away in my treasured memory box.

I know that many of those names will mean nothing to those who didn’t grow up in the UK in the 1980’s. But it makes me smile to think about a few of you out there who will remember them just like me.

Mum adores James Garner (who is sadly departed now) and who can forget him in the Rockford Files - I can still sing the theme tune! And no, you definitely don’t want to here me do that. If you’d like a bit of nostalgia then you can listen to a much better version via this YouTube link: Rockford Files theme tune.

Q9. Do you have any regrets?

I had to chew a bit on this one. I used to regret a lot. Things used to get stuck in my head and go round and round for weeks, if not months. But I don’t allow that to happen these days. As I found out - life is too bloody short. Now I take on board I could have done better and move on. Well, most of the time - I’m human after all.

I believe that when it comes down to it every decision I’ve made (right or wrong) has led me to who I am and where I am now. And I wouldn’t want to change that for anything. I’m living in lovely (most of the time) Denmark. With a husband that I love to the moon and back. And enjoy a very comfortable life that many people would envy.

So do I have any regrets that haunt me? Most definitely not.

Q10. Do you believe in karma?

Hmmmm … I do and I don’t. On one hand I really want to believe in it - what goes around comes around. That’s the way it should be in my mind.

My all time favorite movie is Serendipity starring John Cusack and Kate Beckinsale. Not a well known one by any means. I have yet to find anyone else who has watched it. If you haven’t seen it then you can check out the trailer here on YouTube: Serendipity Trailer and I’m sure you can find the movie itself on one of the streamers.

It wasn’t a big splashy hit back in 2001. I tripped over it on a plane and watched it on one of those awful miniature seat-back screens. And yes I did ugly cry on that plane too! At least it was an overnight transatlantic flight from the US back to the UK so nobody noticed in the dark cabin. Phew!

I guess it shows that in my book I want to believe in karma in the way that things will work themselves out for the best even if it takes a while.

On the other hand I’ve lived in this world too long, seen a lot of things I wish I hadn’t, and worked in both healthy and toxic corporate environments. As a result I’ve seen one too many people get promoted who most definitely didn’t deserve it or put in roles that they were clearly weren’t suitable for. And karma certainly doesn’t seem to have stumped up and bitten them on their proverbial butts. Shame!

So I guess my jaded self has given up on karma in real life. But it likes to dream occasionally when I’m watching a movie.

Q11. If you could give your younger self one piece of advice, what would it be?

That’s an easy one - I would tell her to stop over-thinking and say “fuck off to fear”!!! (Sorry Mum I know you hate the ‘f’ word, but I’m 58 so I think at this point I’ll say it if I want!)

I’m well aware that fear has stopped me doing a lot of things. I don’t regret it, but I do recognize that it’s a fact. I’ve often played things safe. Probably too safe. I’ve let fear change my decision. I’ve made the most of my patience and endurance but never really pushed myself. I’ve lived in my safe zone in so many ways. I’ve been very risk averse. And I have often consciously not pushed boundaries - mine or other peoples.

I’m lucky that I’ve ended up in a good place, but I can’t help but wonder what would have happened if I’d been braver much earlier. Imagine all those sliding door moments…

And that’s all for today folks. I hate to think how many days this post has taken me to write. Far too many. But thanks again to for the nomination and for the questions that have helped me get back to at least writing something again.

Now I’m hitting publish before the delete button starts calling again!

Have a wonderful day.

If you liked this post then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

In case you missed it, I published my book - Hold My Hand: A Journey Back to Life - here on Substack last year. If you’d like to read it then you can find each chapter by clicking HERE and it will take you directly to the webpage dedicated to the book where you can read or listen.

If you would also be kind enough to share it I would be eternally grateful as it will help more people learn about these deadly infections. Maybe one day that knowledge will save a life.

Thank you!

Image caption: Ringkøbing Marina (Denmark) at sunrise, 17 August 2025.

This post includes the chapters from Part II: A Journey Back to Life and the Epilogue: Hopes and Dreams. If you haven’t listened to it yet then you can listen to Part I of the audio book by clicking here Prologue and Part I: My Story.

As always - thank you for reading or in this case I should say listening!

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If you’d like to know a little more about me then head here… Oops! I forgot to introduce myself…

If you have never heard of necrotizing fasciitis aka flesh eating bacteria then please do go and read this post - it may help save your life or someone else’s one day… NECK-re-tie-zing FASH-e-i-tis... Say what?!

Part II: A Journey Back to Life

Chapter 12: Alien World

Chapter 13: It’s OK That I’m Not OK

Chapter 14: Hold My Hand

Chapter 15: Crowning Glory

Chapter 16: Corporate Detox

Chapter 17: Fighting Fires

Chapter 18: Better Than Before

Chapter 19: Nearest and Dearest

Chapter 20: The Illusion of Tomorrow

Chapter 21: Science & Statistics

Chapter 22: A Trip to the Deep

Chapter 23: A Life Changed

Epilogue: Hopes and Dreams

If listening to the content of this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.

Thank you!

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As always - thank you for reading or listening!

It’s THE END.

Well, it sort of is … And it’s not.

Definitely not the end of me writing. Not the end of me being on Substack. Not the end of my mission to continue sharing my story in the hope of helping others.

But it is the end of my ‘book in parts’. Draft 5 of the book is complete - every chapter revised and posted here on Substack. For now I think I’ve made it as good as I can - with help from my early readers (you know who you are and thank you again!) and of course Kim - so it’s time to decide what to do with it next. Put it in a draw. Self-publish. Try to find a publisher. Who knows. We’ll see what 2026 brings.

Whatever happens I’ve loved writing a book - something I’d also promised myself I would do one day. I’ve appreciated (probably more than you can imagine) every like, comment, and restack that I’ve received. And I know many people say it, but I just love the whole Substack community thing.

I have to send a special thank you to who joined as one of my early subscribers back in March and has been amazing in terms of liking and commenting on so many chapters. Then there’s the lovely - finally someone who understood what having sepsis does to you and she’s been kind enough to restack some of my posts. There’s not only adds great comments, but who was also the first person to add Hold My Hand as one of her Substack recommendations - thank you! And there are so many more people that I could, and probably should, mention from all around the world like and a multitude of friends, family, and old colleagues who have supported me.

I went looking for a suitable picture to share with this post got totally distracted. As I looked at photos of myself over the years it got me thinking about how we all evolve. We can’t help it and we certainly can’t stop it. We can embrace change or we can fight it. Getting sick drove my evolution in a certain direction, but relatively the actual time that lasted was such a tiny part of my 58 and a bit years on this planet.

Nothing stays the same for long. However much we want it to. However hard we try to hang on to it. However white your knuckles go. The world keeps turning.

I guess I wrote the book that I wish I could have read early in my recovery. The whole process of writing has given me so much. But I can also recognize that my evolution needs to continue and I can’t allow myself to remain stuck, or even wallow, in what happened almost three years ago.

So I though I’d share a few pictures of how I’ve changed throughout my life. Some you may have seen before, but the captions may well be different. Others I found in my photo archives today. But each says something about the experiences that have shaped me into the person I am today.

Image caption: September 1972 - age 5 - my first day at Eastbury Farm School in Northwood (UK). Those bunches, pig tails to some of you, are currently in evidence again while I’m growing my hair out, but maybe they’re a little less cute on a 58 yr old!

Image caption: 1975 - I’m guessing, but that’s probably around the right year. (Mum - maybe you can correct me?!) And of course Dads favorite pass time i.e. planks stuck on our feet. Can you see why so many people assumed I was a boy when I was a kid?!

Image caption: 2003 - jumping forwards to just days before I left the UK to live in Denmark. The decision was already made, hence the broad smile. I couldn’t leave fast enough. And my first proper (professional) work profile picture. I used it for over a decade!

Image caption: 2005 - back in the UK for a few days and at Silverstone for an amazing ‘Ferrari Experience’ track day. A birthday gift from Mum and Dad. Needless to say I preferred driving the peppy little Lotus Elise (that I spun 360 off the track - oops!) rather than the bag of nails otherwise known as the Ferrari 355. Probably my all time favorite picture of me and Dad. I have a similar one with Mum from that day, but if I post it she will probably come after me. Only joking - maybe …

Image caption: 2007 (23rd December) - ‘that’ picture of when we got engaged at Homewood, overlooking Lake Tahoe (USA), with Dad in miniature in my sunglasses as he takes the picture. Another day where we all had planks strapped to our feet!

Image caption: 2008 (22nd March) - just 3 months after we got engaged. We’d planned to get married in the August of that year, but Kim caught a nasty virus in January that affected his balance and couldn’t even stand up for over a week. It made us ask ourselves ‘why wait’? So we didn’t and arranged the wedding, from soup to nuts, in the space of just two weeks. As we found out at the eleventh hour Kim forgot to confirm the church until it was almost too late!

Image caption: 2015 (August) - me looking windswept at a friends wedding near Glasgow and a (silk) dress with some history. It was from Austin Reed on Regent Street - bought for me by Mum for my Grans funeral well over a decade earlier. As you gather Gran didn’t believe in us wearing black for her final celebration. You can tell that we’re related.

Image caption: 2016 (January) - oh boy, just look at that forced smile. Another ‘corporate’ profile picture taken just a week after I’d started a new job and was wondering what I’d let myself in for! As it turned out - a lot of hours and a hell of a lot of stress. But would I change anything - most definitely not.

Image caption: 2023 (August) - just eight months after I was lying on a ventilator in intensive care I completed one of the toughest challenges of my life - the 2km open water Copenhagen Swim. But FFS - look at those side boobs trying to escape my wetsuit!

Image caption: 2025 (July) - my happy place i.e. in my ‘recording studio’. You can tell from that smile just how much fun I was having recording the voiceovers for each chapter of the book. Imagine if someone let’s me into a real studio one day!

So that’s it folks. For today anyways. I haven’t decided on what my posting schedule will be going forwards so watch this space.

And a quick apology to those that have been enjoying listening to my posts as there’s no voiceover today. It was simply too visual with all the pictures and my sound studio (aka duvet) was busy keeping a friend warm in our guest room! That’s my excuse and I’m sticking to it - it might also be due to the fact that I couldn’t bring myself to listen to my own voice echoing from Kim’s office again!

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If this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.

Thank you!

If you missed any chapters from the book then you can find them easily by clicking HERE and it will take you directly to the webpage dedicated to the book where you can read or listen to any previous chapters that you might have missed.

As always - thank you for reading or listening!

“You will one day experience joy that matches this pain. You will cry euphoric tears at the Beach Boys, you will stare down at a baby’s face as she lies asleep in your lap, you will make great friends, you will eat delicious foods you haven’t tried yet, you will be able to look at a view from a high place and not assess the likelihood of dying from falling. There are books you haven’t read yet that will enrich you, films you will watch while eating extra-large buckets of popcorn, and you will dance and laugh and have sex and go for runs by the river and have late-night conversations and laugh until it hurts. Life is waiting for you. You might be stuck here for a while, but the world isn’t going anywhere. Hang on in there if you can. Life is always worth it.”

Matt Haig, Reasons to Stay Alive

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A LETTER TO ME IN TEN YEARS

Dear Jacqui,

It’s strange – as I type this, I have the strongest sense of déjà vu. I feel like I’ve been in this exact spot before. Yet I’ve never thought to write a letter to my future self until now. Do you still love listening to the radio? I remember that the inspiration for this letter came from a favorite show. I wonder if you still listen to the same stations – perhaps most of those hosts have retired by now. The world keeps on turning.

The events of these past two years are a distant memory by now. I’m sure that you’ve got to the stage where you don’t need to say to every person you meet that “I’m an NF survivor” – I know that I’m already more selective about who I tell. Of course it’s an important part of your story, but there’s so much more to you. Your NF journey doesn’t define you. But it has made you a better person in so many ways.

When I look back, I can see how much I’ve changed compared to the version of ‘me’ that existed before I got sick. My short fuse and hot temper are (almost) a thing of the past. I have more patience. I’m less judgmental. I’m far better at admitting that I’m wrong. On a good day I’m much more flexible when plans need to change.

I’m kinder. I have more compassion and empathy. And I’m more accepting of others. I’m less critical and better at forgiveness. I’m calmer. I’m less selfish and more considerate. ‘Hate’ rarely, if ever, features in my vocabulary. I appreciate the small things. And I definitely have far greater clarity on what I want out of life.

I know though that I’m nowhere near perfect and there’s still plenty of work to do. Continue to build on those changes and make the effort each and every day to be a better person.

Is it reasonable to assume that you’ve ‘grown whole’ over these past ten years? I believe that you’ll have processed all that’s happened and fully integrated the old and new you. I have a picture in my head of a tree trunk and at the top is another type of tree that has been grafted onto it. The trunk providing all the sustenance that the other tree needs. Helping it grow and expand into a beautiful, luscious canopy.

For a time, I was haunted by the research that suggested NF survivors had a median lifespan, after the infection, of just ten years. It’s fantastic that you’re already on the other side of that. I hope that you’re living life to the full and not looking over your shoulder – the grim reaper is not lurking and waiting to get you.

I wholeheartedly believe that the darkness I saw before that fourth operation wasn’t necessarily a hallucination, but perhaps a precursor to my life potentially ending. My heart was already failing. But you came back from that – you’re a fighter, whether you know it or not. Yet it’s important that you find peace and accept that there’s one certainty in life: we’re all going to die one day.

How’s Kim? Are you enjoying growing old together? He must have retired by now, so you have more free time to do as you wish. I assume you’re still living in your ‘grand design’ house? And have gently molded that wild garden into the haven you dream of? Have you managed to tick a bunch of travel wishes off your bucket list?

And what about Mum? Is she still around? I guess that’s less likely as she’d be hitting 100 by now. But you never know. If she’s gone then I expect that you’ve been wise enough to ask for any help that you needed to process her loss.

How’s Evie doing? She’ll be an old lady by now, but I bet that she’s still bouncing around like the puppy she thinks she is in her head. Just the thought that you’ve had another ten years of her unconditional love gives me such a warm feeling and makes me so happy.

Is she still up for her long walk every morning or has she slowed down a bit? I’m sure she’s still staring at you at 7.30am (yes, she can definitely tell the time), ears pricked every time you use words like ‘so’ and ‘go’ or when you just take a deep breath that might be a signal that you’re about to get out of bed. She’ll be willing you to get up and out in the fresh air with her.

Have you managed to continue starting every day with a smile – especially on those dog walks as you meet other people (and dogs)? Those morning smiles make such a difference to your mood all day. It starts the day on the right foot.

I have no doubt that all the investment you’ve put into both your physical and mental health has been worth it. Are you still going to see Violet? I would take a big bet that you’re swimming, walking, cycling, and spending time on your yoga mat. Don’t forget that sometimes it’s time for a change – don’t just keep doing the same things.

You’ll remember that in summer 2024 you decided that you’d do the Copenhagen open water swim, around the parliament building in the city, once more. A last hoorah. Then it was time to find something new and let it go. I’m sure that you still think about it though on the last Saturday in August each year. Have you found new challenges to keep you fit and active?

I could go on asking questions all day – I’m fascinated to know how the last ten years have turned out. But let’s move on. I’ve learned a lot since getting sick and on my journey back to life. So much has changed. I thought I’d remind you of the five biggest things that I’ve learned – just to make sure you haven’t forgotten.

Here goes.

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#1 KEEP DREAMING

“You have to dream before your dreams can come true.”

A. P. J. Abdul Kalam

I realized that I’d lost the ability to dream. It had slipped quietly away without me even noticing. I’m not sure whether I had any personal dreams for a decade before I got sick. I forgot about the power of dreaming. The passion associated with chasing a dream. The feeling of being truly lost in something – that you love so much – that you have no sense of time.

Before I got sick my life was bleak. It lacked any vibrancy or color. I had no vision of the future – no hopes or dreams. It was incredibly stressful. I was permanently anxious and always exhausted. I felt like I was faking it every day just to survive. My direction wasn’t decided by my dreams, but rather by money, the desire for status, and day in, day out work.

As part of this journey, I’ve allowed myself to start dreaming again. I now appreciate the value of having and nurturing a dream. The sense of purpose it can give you. And I’m loving it. I’ve found inspiration and renewed energy in places I would never have expected.

You’re still coming up with big, beautiful, inspiring dreams – right? Who cares if you think they’re realistic or not. The whole point of a dream is the bigger, the better. Continue to harness that joyful feeling of finding a new dream.

And now you have the evidence that dreams can and do come true. You had a dream of writing a book and look at what you achieved. It gives me goosebumps. You managed to tell your story for all the people that couldn’t.

All the people who have been so damaged and distressed by the experience of surviving NF that they couldn’t revisit it, let alone talk publicly about it. All the people that sadly died as a result not only of NF itself, but also sepsis, septic shock, and all the other problems that can come along with it. This has all been for them.

I don’t know what the future holds, and I don’t need to know. But I believe that dreams will keep me (and you) on the right track to keep learning, growing, and always looking for fresh inspiration.

#2 YOU ARE ENOUGH

You are. You have enough. You are valued. You are worthy of love. You are loved. You are appreciated. You need nothing more. You are enough.

I know this has probably been one of the toughest for you. I felt like an imposter in my own life for such a long time – before I got sick and even for a time afterwards. Using a fake persona like body armor to get through each day. Saying that I was OK, when I was anything but.

But I’ve found out that it’s safe to come out of hiding. To just be me. People don’t run away screaming. They don’t expect anything I’m not. I can be my authentic self – finally. And it feels right.

It’s not easy. That desire to hide isn’t entirely gone. It takes work each day. Are you comfortable now with ‘just’ being ‘Jacqui’ again? Have you gotten better at just being you?

You have everything you need and I have faith that not only are you ‘living lighter’ (mentally and physically), but you’ve also adjusted to a mindset of abundance instead of scarcity. Can you appreciate that life’s possibilities are totally limitless? The future, whatever it will be, is full of new opportunities. Fresh challenges that you can approach with plenty of optimism and a good dose of generosity.

I thought that my purpose after this experience was to be happy. It was an impossible quest. It made me miserable and anxious. It dragged me down, because I couldn’t find it. I was trying too hard.

In the past few months, I’ve found my purpose and tapped into my creativity. Sharing stories and information to help others. Creating something that inspires people. Something that makes them feel something. Something that moves them. I jump out of bed in the morning and can’t wait to get started. I feel valuable again. I’m contributing to the world. And I feel less alone.

Over the past ten years I’m sure your purpose has continued to evolve. What is it now? I’m almost certain that you’re still writing. I wonder what you wrote next?

#3 KEEP WALKING ON RAINBOWS

“The only moment in which you can be truly alive is the present moment.”

Thich Nhat Hanh (Buddhist monk)

I have that old Katrina and the Waves song in my head – whatever the weather I hope that you’re still ‘walking on sunshine’. Experiencing the joy of seeing the blue sky that is such a special color over Denmark. Or perhaps it’s more about walking on rainbows with your love of colorful shoes?!

I believe that we can’t fight the universe, but I don’t believe in us each having a pre-defined destiny. I expect that you’ve continued to learn how to lean into the flow. To stop fighting the current. To trust the process. The future will be whatever it will be.

Today I still find it challenging. Ten years on I’m sure that you’ve become an expert. I have an image in my mind of you floating like a starfish, on your back, in a quiet, gently drifting stream. Letting yourself bob along. Totally relaxed. Curious to see where life takes you next.

I hope that you’ve continued to find more ways to get into your state of flow. Just like you’ve found with the process of writing. And that you’ve found ways to channel that energy into letting yourself be happy, and into recharging and healing both your mind and your body. Don’t forget – happiness comes when you try the least.

Have you managed to find a ‘lightness of being’? Not the unbearable kind made famous in the book by Milan Kundera, but the pleasurable kind. The ability to relax and go where the energy takes you. Instead of trying to drive, control, and hold too tight – choking the life out of any enjoyment.

I’m very much aware that I still have a challenge when it comes to doing nothing. To letting myself just ‘be’. I fret. I get anxious. That little voice in my head tells me over and over that I should be doing something.

But realizing that’s the case is half the battle. I hope you’ve been able to make progress. If you didn’t manage it today then there is always tomorrow to have another go. Don’t beat yourself up. Worry less.

Remember. Let it be. Just let go.

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#4 GIVE YOURSELF PERMISSION

Nobody else can give you permission to eat that delicious slice of cake. It’s up to you to make that decision. Don’t go looking for permission from others – you’ll never find it. Remember to let yourself enjoy that sweet treat sometimes.

I still have a hard time being kind to myself – I’ll gladly admit that. I’m a strict task master. I’m stubborn as hell. Once I get it in my head to do something it’s difficult to change direction. I bet you’ve continued to fight that good fight.

I’m optimistic, that if you’ve done nothing else, that you’ve learned to be nicer to yourself. Being kind doesn’t mean lazy. It means giving yourself permission to take a beat – maybe take a day off your exercise regimen once in a while. Or give yourself a cozy afternoon sat on the sofa reading a good book. Or just let yourself write, to recharge your batteries, when you should be doing something else.

Give yourself permission to be happy. And to feel whatever you need to feel at a given moment – feelings always pass. Permission to have a good day. To have a bad day. To be yourself. To dance whenever you fancy to a song you love on the radio. Don’t take yourself too seriously.

Don’t keep waiting for a day, that may never come, to be happy or be whatever it is you’re waiting for. Today is the best day to enjoy life. The only day. Don’t wait until you ‘retire’ – for that matter, don’t ever retire. You still have plenty to give and share with others.

Revel like a pig in muck in joy. It’s the most wonderful feeling. We talk so much about happiness, but joy is next level. It fizzes in your veins. You can’t help but smile. And you infect everyone around you!

And most definitely give yourself permission to simply get on with living your life.

Let yourself just be you.

#5 LOVE!

It’s a fact – nothing else matters. All that will remain when you’re gone is love.

Has the fascination with listening to memoirs – particularly those read by the authors – continued? Or was it a transitional thing because of writing this book? I have a feeling that it’s still something you enjoy.

Maybe by now you’ve worked out what you’re really looking for in those books? I think I know. It’s help. Help to understand how to love yourself. Even to just like yourself a little bit. That would be a start. That’s always been the thing that you’ve found the hardest. It will have been your biggest challenge over the past ten years. There’s no easy solution, but I’m sure that you’ve been working on it.

In one of those memoirs, I came across a quote that resonated so much for me. It’s usually given as “when one door closes another door opens”. However, the real quote by Helen Keller is:

"When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us."

Are you still looking at closed doors? I think not. I’m sure that you’re enthusiastically walking through plenty of newly opened ones.

Go get on with living your life.

Keep holding hands with Kim.

Cuddle Evie.

And show those you care about just how much you love them.

Nothing else is more important.

My experience over these past couple of years has become part of your past. It may sound weird, but I’m grateful for what happened to me. I wouldn’t be who I am now, or who you are in ten years, without this experience. It’s part of my history. Part of what makes you special. Never to be forgotten.

Embrace the gift of life. I’m not asking you to be grateful as I know that’s not something that sits well with you and I can’t imagine that’s changed. But I have confidence that you look forward to the future with not only hope, but also excitement.

Remember to smile EVERY morning. It’s a new day full of wonderful opportunities – just open your eyes and they’ll be right there in front of you.

Be present. Yesterday is gone. The future beckons.

Loads of love,

Jacqui

4^th October 2024

Image caption: a beautiful peony from the garden at our old house. I have yet to add these to our current garden - another autumn job to add to the list. I picked it for this post as I recently found out that it’s the flower of ‘healing’. Why is it associated with healing? Well apparently it relates to Greek mythology as the the peony is named after ‘Paeon’, the physician of the gods, who used it to heal wounds. Whatever the association I just adore these beautiful, big, blousy flowers.

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If this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.

Thank you!

If you missed any previous chapters from the book then you can find them easily on my website – click HERE and it will take you directly to the webpage dedicated to the book where you can read or listen to any previous chapters that you might have missed.

As always - thank you for reading or listening!

YOU’LL NEVER BE THE SAME AGAIN

Even if you survive NF, your life will never be the same again. It will be irrevocable changed. These infections leave many thousands of people all around the world with life changing consequences – be they physical and/or mental.

NF wounds can be longer and larger than you can almost imagine. If you measured mine, then they totaled maybe 50 to 60 centimeters (approx. 24 inches) – relatively small compared to what some other NF patients wake up to. But still it felt like it took forever for my wounds to heal - the three months it took was, by NF standards, pretty fast. Other people have wounds that take years to heal or never fully heal in their lifetime.

And then there are skin grafts which can be essential to close some of those large wounds that have no chance of closing without additional intervention. I was told initially that I would need a skin graft with the donor skin taken from my right thigh to be transferred over to my left inner thigh. I was incredibly fortunate that in the end the plastic surgeons worked their magic to close my wounds without a graft. But it was a near miss.

As many as 60% of NF patients need a skin graft ⁽¹⁴⁾. Skin grafts don’t act like normal skin, and they are never attached to your body in the same way as they were in their original location. They still take ages to heal and up to two years to mature. You now have two wounds to heal when your body was having a hard enough time with one.

Skin grafts get dry. They don’t sweat. They can be more sensitive to pain even after they’ve healed. They can look discolored, patchy or uneven. They never have the same sensation when you touch them as normal skin. They can break down especially when they’re still new. And over time they can build up scar tissue around the edges. My heart goes out to all the NF patients who had no other option and had to have a skin graft.

Then there’s all the tissue that has been removed in the surgeries and the nerves that have been cut. In some instances that leaves the NF patient with areas of skin with little or no sensation. I know from experience that some of the sensation will come back over the years, but it will never be the same.

Then there’s the unexplained pain in the affected area – burning sensations, tingling or shooting pains, and sometimes unbearable itching ⁽¹⁸⁾. For some patient’s reconstructive surgery or scar revision surgeries may be required. I only had two of these procedures, but for other NF patients these surgeries can go on over many years and the number of them can get into double digits ⁽¹⁸⁾.

Other NF patients have had limbs amputated to stop the spread of the infection and deal with the destruction of tissue. The estimates of how many NF patients lose a limb vary widely – again because every infection story is unique. In a Danish study this affected only 7% of NF patients ⁽⁸⁾, but in other studies it’s been much higher – for example it was almost 20% of patients in a German study ⁽¹⁴⁾.

Patients that have been in septic shock may experience some level of organ failure. For some, like me, we’re lucky that the shock reversal treatments were implemented quickly enough, along with all the other treatments, to spare us from permanent damage. But others are not so lucky and have to deal with conditions such as kidney or liver failure that can require transplant surgery if they are fortunate enough to find a donor.

Of course, all these things also affect your overall quality of life. Things you used to be able to do may no longer be possible. Or it may take many months or even years to be able to do them again.

A recent study found that only 50% of NF patients reported making a ‘full recovery’ two years after they were discharged from intensive care ⁽¹⁾. While you’re in the acute stages of the illness you receive state-of the-art treatment and care, but as time passes rehabilitation support becomes less readily available and less patient-centric. In many cases long-term follow-up simply isn’t available. It’s left up to you to fight your way back. And that’s a heavy weight to carry when you’ve already been hit so damn hard.

NF is very different to other diseases when it comes to medical specialty ownership which also affects the follow up that you can expect – at least here in Denmark. Cancer patients are supported by well-established multidisciplinary teams. Professionals that wrap around each patient, for the long run, until they are hopefully cured. But just as I found out, once you are no longer acutely ill and your NF wounds have healed there is often nobody left to hold your hand from the medical perspective. It’s up to you.

If that’s not enough you may also not live for as long after the infection as if you hadn’t had it. As I mentioned in an earlier chapter data from a US study suggested that median survival post NF may be just ten years ⁽¹⁹⁾. They also found an increased risk of dying from other infections compared to the wider population - such as pneumonia, cholecystitis (an infection of the gall bladder), urinary tract infections and sepsis ⁽¹⁹⁾. But the data is confounded by so many factors, including the unique nature of every NF case and other health factors. So maybe it’s right or maybe it’s not.

And that’s just the physical stuff. On top there are the mental scars of living through this type of often highly traumatic experience. There’s no question in my mind, and the research data supports it, that the psychological recovery takes longer than the physical recovery ⁽¹⁾. NF patients are rarely offered psychological counselling and a patient in one study said it was much easier to get treatment for anger management than the psychological impact of having been through NF ⁽¹⁾.

Once again you must take on the challenge to get the support that you need and, in some instances, you also have no option but to pay for therapy yourself, if you even can. I was relieved to find out that I wasn’t the only patient to store up morphine to end it all if it all became too much ⁽¹⁾.

At least one study has suggested that a return visit(s) to the intensive care unit, offering both physical and psychological assessment and other support, can help NF patients in their recovery ⁽¹⁾. I was offered a visit to the unit where I was treated, but the purpose of the visit wasn’t clear and in the end I cancelled a couple of days beforehand.

I can’t blame anyone for that as at the time when I took the phone call about the invite I was not long out of hospital, my memory was patchy, and I was still easily confused. I said yes to the visit initially, but when it came to it, I just couldn’t face returning to that environment less than two months after I was discharged. I wish someone had provided something in writing about what the visit was for, what I could have expected, and what was in it for me.

And then of course it’s not just you that’s been affected by the experience – you have to think of those around you - your family and other loved ones – and what they’ve been through. They need to recover too. And will likely also be affected forever by the experience.

When you get sick with NF the last thing on your mind is when you’ll be able to go back to work. However, for many people that question arises quickly as they start to recover because of the financial consequences of being away from work for an extended period.

Data suggests that on average it takes an NF survivor almost eight months before they can return to work, with that period ranging from between two months to two years ⁽¹³⁾. And that’s IF you can return at all. Most employers simply don’t understand this disease, it’s severity, or the long-term impact ⁽¹⁸⁾.

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NF RESEARCH

I’ve worked in clinical research for almost thirty years and my roles have touched a variety of diseases, medical conditions, and the development of a wide range of new medicines. Clinical trials are a type of research study that evaluates novel tests and treatments and their effects on human health outcomes.

For example, they may test a potential new medicine or novel combinations of medicines to see if they work. These trials may also evaluate the effectiveness of medical devices (machines) that may help things like wound healing. And they may also test new markers – for example in your blood - that may help diagnose a disease or measure its progress.

Clinicaltrials.gov is an online database of clinical trials that was established by the National Institute of Health (NIH) as a central global resource to provide current information on clinical trials to members of the public and health providers. Anyone can type in the web address and access the information.

As of November 2024, there were just 25 entries (clinical trials) in the database for NF – of those 16 were completed/terminated, five had an ‘unknown’ status and just four were active. Those numbers are tiny. Compare them to the results when you search for ‘lung cancer’ clinical trials and you’ll find 12,543 entries i.e. trials.

There’s a similar pattern if you look at the number of scientific papers published on NF via PubMed – another online database set up by the NIH that is publicly accessible. The search term of NF produces a little over 6,000 papers, with 316 published in 2023. That number has increased somewhat over time as if we look back twenty years to 2003 just 116 papers were published on NF that year. Again let’s compare to lung cancer and you’ll find over 450,000 papers, of which 26,000 were published in 2023 alone.

Why is there comparatively little research being done in NF? I believe that there are a number of reasons. NF is a relatively rare disease with a treatment protocol of surgery, antibiotics and intensive care support. Of course there is research into novel antibiotics, but that is more generalized and not specific to NF. Plus, the pharmaceutical companies have no big blockbuster drug for NF that they can develop that will make them gazillions of dollars.

Then add to that the difficulty in doing randomized trials to get more conclusive results – these are studies in which the participants are divided by chance into separate groups that compare different treatments or other interventions. The ‘chance’ element means that the groups will be similar and so the effects of the treatments they receive can be compared more fairly.

But in such a fast-moving, life-threatening situation there are also ethical considerations of doing such studies plus extremely high levels of variation in the patients and their individual situations - diversity of disease progress, diverse nature of patients’ comorbidities, varying treatment regimes, different lengths of time to diagnosis and from diagnosis to first surgery etc.

There is also the challenge that some NF patients are simply too distressed and traumatized to participate in any research, talk about their experience, or complete any questionnaires about their recovery ⁽¹⁴⁾.

The biggest possible gamechanger in terms of NF treatment would be not to have to treat it at all and instead have a vaccine against the bacteria that cause these awful invasive infections.

There is a long history of work to try to develop a vaccine specifically again Streptococcus pyogenes – the bacteria that caused my sickness and that is the most common culprit in NF ⁽²⁰⁾. Initial interest in the early 20^th century focused on a vaccine as this particular bacterium also causes other illnesses such as scarlet fever and rheumatic fever. However, as the incidence (and seriousness) of those diseases declined the interest in developing a vaccine also waned.

Since 2016 interest has been revived and bolstered by World Health Organisation (WHO) support. Research is ongoing. At least one team have started work on a Group A Streptococci vaccine here in Denmark and they aim to have a vaccine ready to start clinical trials by 2027 ⁽²¹⁾.

I have real hope that it could save others from going through what I did.

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FINDING A COMMUNITY

The nature of NF is that many patients feel very much alone. Finding a community that you can relate to is so important during the recovery process and yet it’s incredibly hard. It’s very unlikely that you’ll happen to trip over another NF patient in daily life – I’ve only talked to one person who happened to know someone else (on the other side of the world) who had NF.

There are a relatively small number of Facebook groups. The largest global group has around 2000 members (composed of both survivors and their loved ones) and spends more time wishing people happy birthday or happy re-birthday than sharing anything useful. Then there are smaller local or country-specific groups like the one for Danish patients with less than 175 members and zero posts in the past eight months.

Even if you can find another NF patient it’s often difficult to relate as everyone’s experience is so unique and it can feel as if they have had a totally different illness. Rarely have comments in any of these groups resonated for me. But occasionally something useful does pop up. I remember that the first clue I had that my hair falling out was a direct result of my illness came from a Facebook post where someone else was asking about a similar issue. I was flooded with a sense of relief that my hair loss was a common experience and then I went off to good old Google to find out more.

Gradually I have become addicted to listening to memoirs. I don’t know why listening rather than reading, but somehow hearing the persons own voice creates a much stronger connection to their story than just seeing the words on a page. But it must be the author themselves narrating the book – anyone else simply doesn’t work. The speed at which they speak, the tone and timbre of their voice, conveys their feelings and the emotions attached to those words. It’s as if you can absorb the story in 3D instead of 1D.

I’m particularly partial as you may be able to guess, to books that tell stories related to some kind of medical diagnosis and recovery (or not) or near-death experience. I relate to the struggle and fighting back from the brink. The dramatic alterations to your personal perspective on life. It’s all about just how delicate the balance between life and death really is …

I thought that my need to listen to these books was related to learning about how other people had written their memoirs and to me working out how I wanted to write this book. However, its only writing this chapter of the book that the penny has dropped, and I’ve realized that this was my way of finding my tribe and finding people whose experience I could relate to so that I felt less unique and less alone.

I’ve concluded that it wasn’t actually necessary to confine myself to looking for my community in such literal places as with other NF patients. Surviving NF is a traumatic life event, but there are many different types of those. All of which turn your life upside down. And there are more commonalities across them than you may think. These days I keep a more open mind about whose story will resonate for me and also who will connect with mine.

OTHER RESOURCES FOR NECROTISING FASCIITIS

The Lee Spark NF Foundation

National Organization for Rare Disease (NORD) – NF Page

U.S Centers for Disease Control and Prevention – About NF Page

REFERENCES

1. Patient and family experience 2 years after necrotizing soft-tissue infection: A longitudinal qualitative investigation – J Adv Nurs 2023 – Ingrid Egerod et al.

2. Prognostic Aspects, Survival Rate, and Predisposing Risk Factors in Patients with Fourniers’ Gangrene and Necrotizing Soft Tissue Infections: Evaluation of Clinical Outcome of 55 Patients – Urol Int 2012 – A. Martinschek et al.

3. Emergent Management of Necrotizing Soft-Tissue Infections – Medscape 2024 – Brit J Long

4. Bacteria – National Human Genome Research Institute

5. Invasive Group A Streptococcal Disease – Drugs 2012 – Andrew C. Steer et al.

6. What we know so far about strep A child deaths in the UK – New Scientist - Michael Le Page – 07 December 2022

7. Signs, symptoms and diagnosis of necrotizing fasciitis experienced by survivors and family: a qualitative Nordic multi-center study – BMS Inf Dis 2018 – Annette Erichsen Andersson et al.

8. Incidence, comorbidity and mortality in patients with necrotising soft-tissue infections, 2005-2018: a Danish nationwide register-based cohort study - BMJ 2020 – Morten Hedetoft et al.

9. Severe Strep Infections Rebound After Pandemic Lull – Medscape 2023 – Brian Owens

10. (In Danish) Invasive streptococcal infections have claimed the lives of 35 Danes in a few months - Invasiv streptokokinfektion har kostet 35 danskere livet på få måneder – TV2 03 March 2023

11. (In Danish) A Danish professor has found a new method – using buttermilk against flesh-eating bacteria - Dansk professor har fundet ny metode – bruger kærnemælk mod kødædende bakterier – TV2 06 October 2023

12. Flesh-eating disease linked to gene differences – New Scientist - Emma Young – 17 November 2002

13. Impact of severe necrotizing fasciitis on quality of life in the Netherlands – EJTES 2022 – Sander F. L. van Stigt et al.

14. Necrotizing fasciitis and the midterm outcomes after survival – SAGE Open Medicine 2019 – Christiane Kruppa et al.

15. Key pathways and genes that are altered during treatment with hyperbaric oxygen in patients with sepsis due to necrotising soft tissue infection (HBOmic study) – European Journal of Medical Research 2023 – Julie Vinkel et al.

16. The history and development of hyperbaric oxygenation (HBO) in thermal burn injury – medicina 2021 – Christian Smolle et al.

17. Hyperbaric oxygen treatment in the management of necrotising soft-tissue infections: results from a Danish nationwide registry study – BMJ 2023 – Morten Hedetoft et al.

18. The impact of necrotizing soft tissue infections on the lives of survivors: a qualitative study – QoLR 2023 – Jaco Suijker et al.

19. Long-term outcomes of patients with necrotizing fasciitis – J Burn Care Res 2010 – Timothy D Light et al.

20. A controlled human infection model of Streptococcus pyogenes pharyngitis (CHIVAS-M75): an observational, dose-finding study – The Lancet Microbe 2021 -. Joshua Osowicki et al.

21. (In Danish) Scientists to develop a vaccine against streptococci - Forskere skal udvikle en vaccine mod streptokokker – Statens Serum Institut - 14 Sept 2023

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If this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.

Thank you!

If you missed any previous chapters from the book then you can find them easily on my website – click HERE and it will take you directly to the webpage dedicated to the book where you can read or listen to any previous chapters that you might have missed.

Next THURSDAY I’ll share the final chapter of my ‘book in parts’ - Hold My Hand: A Journey Back to Life. I can’t believe we’re almost at THE END. Then again there is no ‘end’ as my journey continues…

Image caption: morning meditation walking Evie.

As always - thank you for reading or listening!

HOW IS NF TREATED?

Just like so many things with NF there’s no definitive rule book when it comes to treatment.

You can be sure that there will be repeated aggressive surgeries to remove the dead, infected tissue. A NF patient will go through on average four operations, but depending on the scale of the infection it can be many more and in fact well into double digits ^(13,14). Surgeries are more frequent initially – at least daily – and then become more spaced out - every other day – and finally move out to longer intervals in-between. For once I feel I was almost ‘normal’ with my five surgeries over those first ten days.

You’ll also certainly have gallons of i.v. antibiotics pumped into your veins – selected to attack the specific bacteria involved.

And in many cases, you’ll be admitted to some kind of intensive care department in a hospital while they work hard to keep you alive – pumping other drugs into your system to keep you sedated and opioids to ensure that you’re pain-free.

Treatment protocols for NF haven’t really changed for decades ⁽¹⁵⁾.

THE HEALING POWER OF OXYGEN

I think most of us, including me, would think of diving accidents when someone mentions a hyperbaric chamber. These specialist pressurized chambers are best known for their use in the treatment of decompression sickness, sometimes known as ‘the bends’. It’s caused by gas, previously dissolved in blood or tissues, forming bubbles in blood vessels when a diver comes up from deep water too quickly. However, these chambers also play a role in the treatment of a wide range of illnesses and injuries, including serious infections such as NF.

We may think of this as a ‘modern’ treatment, but when I researched this section of the book, I was stunned to find out that hyperbaric therapy, initially with just pressurized air in a metal container, was first utilized as early as 1662 by a British physician called Henshaw ⁽¹⁶⁾. Though it was only in 1937 that hyperbaric oxygen therapy (HBO₂T) was first used successfully to treat decompression sickness.

By 1955 HBO₂T was being applied to treat the effects of radiation therapy in cancer patients. Soon after they also started to treat patients with burns and other conditions.

HBO₂T is now known to potentially benefit a wide range of patients with:

• Bubbles of air in blood vessels, such as decompression sickness.

• Serious, life-threatening infections, like NF.

• Wounds that have problems healing, like diabetic foot ulcers.

• Radiation injury related to cancer treatment.

Accessibility to these chambers is limited as there are only a small number of them in each country relative to the size of the population.

Whether they are used as standard of care – in other words as part of the accepted medical practice for a particular condition or illness – also varies widely. In many cases it isn’t even standardized at the country level.

Though HBO₂T is a well-established treatment for decompression sickness, it is far more controversial when it comes to NF. In the US it’s estimated that only 1% of patients with a NSTI receive HBO₂T treatment as it is not a recommended by the relevant medical associations ⁽¹⁷⁾. But that doesn’t mean it doesn’t work.

In Europe we’ve taken a different position, and it is used more widely for NF patients as it is seen as a useful addition, if available, to the standard treatment of surgery, antibiotics, and intensive care.

In general, there are two types of HBO₂T chamber. There’s a ‘mono’ unit designed for one patient where you lie on a table that slides into a clear plastic tube-shaped chamber. Or there’s a ‘multi-person’ unit – like the one where I was treated - designed to accommodate a number of seated patients or a single patient lying on a bed or trolley. These can look ‘submarine-like’ or larger chambers can be hard to distinguish from a large hospital room – only the small circular windows give it away.

Oxygen is delivered to the patients in a variety of different ways – in my case my ventilator was flipped over to pure oxygen. But for those not on a ventilator oxygen can be delivered through a mask over the face, or for seated patients, via a lightweight, clear hood that is placed over the head and sealed around the neck.

Image caption: from the outside the hyperbaric chamber looks like a small submarine with a lot of pipes around it. The entrance is at the far end via an airlock that then leads into the main patient chamber. My own picture.

Image caption: around the back side of the chamber is massive control panel, including video surveillance of the inside, that looks like something out of a movie! My own picture.

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HOW DOES HBO₂T WORK?

HBO₂T involves breathing pure oxygen in a pressurized environment – usually two to three times the normal atmospheric pressure that surrounds us every day. That’s equivalent to being fourteen meters or eighteen meters below sea level. In these conditions, your lungs can absorb more oxygen than would be possible breathing pure oxygen at normal air pressure.

Many patients need multiple HBO₂T sessions in the chamber – with the number depending on the specific illness or medical condition. Some conditions, like NF, may be treated in three ninety-minute sessions on three consecutive days – just as I was. Other conditions, such as wounds that have difficulty healing or radiation injuries from cancer treatment, may require as many as forty daily sessions.

Hyperbaric oxygen is a highly potent drug in its own right ⁽¹⁶⁾. Did you know that every cell in the body has an oxygen receptor? Your body’s tissues need an adequate supply of oxygen to function and when tissue is injured, it requires even more oxygen to survive.

Usually, oxygen is transported around the body by red blood cells, but during HBO₂T a greater amount of oxygen can dissolve directly in the blood itself because of the pressure. As a result, the dissolved oxygen in the blood can reach areas of tissue with damaged or constricted blood vessels that are too small for red blood cells to be able to pass through.

Initially it was thought that the treatment effect of HBO₂T in NF was primarily via its impact on the bacteria themselves, but it’s now known that the picture is far more complex. The additional oxygen is not only anti-bacterial – i.e. negatively affecting the bacteria and slowing their spread – but in addition it enhances the efficiency of the antibiotic treatment ⁽¹⁶⁾. On top of that it seems to also have a range of positive immune-modulating effects – in other words it directly affects how your immune system responds to the infection and the toxins released by the bacteria ⁽¹⁵⁾.

DOES HBO₂T REALLY WORK FOR NF?

That’s a question that has been hotly debated for decades and it’s still difficult to be absolutely sure. There has been a lack of well conducted research studies and the results from those that have been done are frequently hard to clearly interpret as there are so many other factors at play that affect the chances of NF patients surviving.

For example, there have been different HBO₂T treatment protocols – in other words when the patient is treated, for how long, and for how many sessions. Add to that there’s always variation in how long the patient has been sick for and how far the infection has progressed – for example it may be a single day and sepsis for one patient and three days and septic shock for another. If they’ve been transported from another hospital to the chamber location that can also affect their chances of survival.

And of course, it doesn’t stop there - patients have other things wrong with them (co-morbidities that I mentioned previously) which also affect how they respond to this type of treatment. Plus, these infections can be anywhere in the body and their scale and location will affect the severity and the bodies’ reaction to them.

After saying all that the data available does suggest that we now probably have the best indication that HBO₂T does indeed help. It seems to reduce the chances of patients dying from NSTIs (of which NF is a subset) in the first 30 days, with a more pronounced effect for the more severely sick patients ⁽¹⁷⁾.

WHAT ARE THE RISKS OF HBO₂T?

Generally, it’s a safe procedure and serious complications are rare. But it does carry some risk. For example, patients can sustain middle ear injuries, including leaking fluid and eardrum rupture, due to changes in pressure.

I have heard mention of at least one hospital in Australia where grommets (tiny ventilation tubes that are put inside the eardrum) are inserted in NF patients’ ears before HBO₂T to reduce the risk of ear injuries. It’s a nice idea, but I would guess it’s not done as standard as the focus is on keeping you alive and treating the infection.

It can also cause temporary near-sightedness – a collapsed lung – and in rare cases seizures as a result of too much oxygen in your central nervous system.

The true risk of these chambers is not really related to its effects on the human body, nor the pressurization of the chamber, but rather comes from the flammability of the pure oxygen. So, safety is very carefully controlled and maintained.

THE REAL DEAL

By some strange twists of fate and more than a few lucky coincidences – and probably a little bit of serendipity – I had the opportunity to visit the hyperbaric chamber in which I was treated in October 2023.

They were running tours of the unit as part of ‘Culture Night’ – an annual event in Copenhagen. Each tour was meant to be for a group of twelve interested people. But in the end it was just a good friend, who happened to be over from the UK, and me. Not only that, but we had the privilege to meet and hear from the professor that runs the entire unit. It felt like it was meant to be.

The whole thing gave me goosebumps. I was fascinated, awe-struck, moved, and acted like an overwhelmingly enthusiastic fangirl. Obviously, I have no memory of the treatments in the chamber – I was in my induced coma – so it was incredibly special for me to see it and meet some of the team that had contributed to my survival.

Image caption: I didn’t intend to include this picture, but in the end I felt that it just had to be done. I wanted you to see that smile. I loved visiting the unit so much. My arms wouldn’t wrap all the way around it, but this was me doing my best to give the chamber a hug to say thank you! The picture was kindly taken by one of the divers on duty that day and yes, I definitely said thank you to the chambers human operators too.

The chamber is run not only by the medical team associated with it, but it is also manned each day by two professional divers who keep the chamber itself functioning. They operate 24/7 and have a one hour ‘scramble’ time at any time of the day or night for urgent (i.e. acute) patients like me. That’s the time it takes for them to be onsite and ready for a patient. I felt like I had been rescued by an underwater team from Top Gun! (See what I mean about the over-enthusiastic fangirl?!)

This chamber is the only one in Denmark that can take intensive care patients. I was lucky the hospital where I was initially admitted was only a relatively short drive away. Other NF patients in more remote areas have to be driven, or in some cases flown by helicopter, to the hospital with the chamber. That transport is a risk for any critically ill patient, another stress they don’t need, another delay to treatment, and sadly some have died on the way.

The chamber itself has eight seats – their design a bit little like those on a plane – that face each other down each side of the chamber. They have up to seven seated patients in there, with a diver to help with their oxygen hoods. Or alternatively they flip the seats up to make space and have a patient, in a bed, lying down the center of the chamber. Entirely alone.

Though they can do it much faster it usually takes ten minutes to take it ‘down’ and pressurize the chamber. It remains under pressure for some ninety minutes. And it then takes fifteen minutes to gradually release the pressure and come back ‘up’. It’s not that it needs to take that long, but as I was told, that’s the most comfortable way to do it.

Once you’ve been connected to the oxygen supply, in whatever form, then a doctor monitors the patient(s) vital signs on monitors on the outside of the chamber. I was surprised there was no doctor or nurse in with me as I’m convinced somebody had told me there was someone. But who knows where I got that from.

The chamber has two sections. A larger patient section that is sealed off from an airlock on one end. If a doctor needs to get to a patient once the chamber has been pressurized, then it takes just 25 seconds to get them into the chamber via that airlock.

I know that the team that run the chamber are very proud that in 2025 they will open a whole new HBO₂T unit with two chambers, each seating twelve people, plus two single person mono units. It will be the largest unit of its type in Europe and has been made possible by a large donation from a foundation.

I am incredibly grateful for their efforts to help save my life and hope they’ll be able to treat many more patients with their new facilities.

COMING SOON

Chapter 23. A Life Changed - next Thursday (23rd October)

If you are unlucky enough to get NF what are the possible medical consequences - including skin grafts, amputations, and even transplants. What is going on in terms of NF research, including possible new treatments on the horizon. And finally, how can you find your community and people that you can relate to…

References

Many of the same references are used repeatedly across these three chapters of the book so if you’re interested in getting back to some of the source data I’ll be publishing a list at the end of Chapter 23 along with a few useful websites.

Subscribe now

If this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.

Thank you!

If you missed any previous chapters from the book then you can find them easily on my website – click HERE and it will take you directly to the webpage dedicated to the book where you can read or listen to any previous chapters that you might have missed.

Every THURSDAY I’ll continue to share my ‘book in parts’ - Hold My Hand: A Journey Back to Life - chapter by chapter.

As always - thank you for reading or listening!

necrotizing fasciitis (noun)

: a severe soft tissue infection that is caused by bacteria (such as Group A streptococci or MRSA) and is marked by oedema and necrosis of subcutaneous tissues with involvement of adjacent fascia and by painful red swollen skin over affected areas

Merriam-Webster Dictionary

It’s time to talk science. Not only is NF rare, but it’s hard to generalize as there’s such wide variation in terms of how the illness presents itself and how it progresses, making every patients journey unique. No two cases are the same. A minor case contained quickly, can involve nothing more than a tiny spot on a fingertip. But a more significant case, that takes longer to be correctly diagnosed, can spread quickly through an entire limb or large sections of the body and kill in a matter of hours.

There are a multitude of common misconceptions about NF.

Healthy people don’t get it – they do.

You must have an obvious open wound for the bacteria to get in – you don’t.

These bacteria eat your flesh – close, but no cigar on that one either.

You only get it if you have poor personal hygiene – no, we don’t need to inflict that stigma on NF patients as it’s also not true.

NF is contagious like the flu – also not true.

And sensationalist news headlines and storylines in fictional medical dramas have also contributed to the confusion.

As you read this chapter, please remember that I’m not a medical doctor, but I am educated as a scientist and researcher. This chapter contains my personal interpretation of the scientific research papers and information that I have tracked down on NF over the past couple of years.

I’ve done my best to make this as easy to read and understand as possible and included references to the sources for important data. You’ll also find links to some additional sources of information on NF at the end of Chapter 23.

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WHAT IS NF?

Taken literally ‘necrotizing’ means the death of some sort of tissue in your body and ‘fasciitis’ refers to an inflammation of the fascia - the tissue under our skin that surrounds muscles, nerves, fat, and blood vessels. Though the term NF was only coined in the 1950’s it is believed that the same disease was mentioned more than 2,000 years ago by Hippocrates.

NF is one of a group of life-threatening bacterial infections called necrotizing soft tissue infections (NSTIs) which involve the necrosis of fat under the skin (subcutaneous fat), fascia, or muscle. NF can affect any area of the body from your head to your feet ⁽¹⁾. No part of the body is safe – except maybe your teeth and bones!

NSTIs like NF are the most serious and potentially life-threatening of all skin and soft tissue infections. Without prompt diagnosis and aggressive treatment NF will in most cases ultimately kill ⁽²⁾. It’s estimated that between 15 and 35% of patients will die even if diagnosed and treated ⁽³⁾.

Your chances of survival are diminished the longer it takes to correctly diagnose what’s wrong with you and the longer it takes for them to get you into the operating theatre. That surgery involves a technique called debridement – a process whereby they cut away the dead, damaged and infected tissue to try and stop the infection spreading further.

If you’re already in septic shock and your blood pressure has tanked (as it had in my case) before that first surgery your chances of survival drop even further.

The time people spend in hospital because of NF can range widely - from a couple of days for a milder case up to many months for more serious cases ⁽²⁾. But just like everything in the NF world it also depends on how fit and healthy you were before the infection, how you react to treatment, and a host of other factors. Once again there is no ‘norm’ when it comes to NF.

WHAT CAUSES NF?

NF is the result of an infection by several different kinds of bacteria. In each case it may be caused by a single type of bacteria or may involve multiple types (referred to as poly-microbial).

Bacteria are small single-celled organisms that are not only found all around us in the environment, but that also flourish both on and within our bodies. It’s estimated that our bodies may contain more bacterial cells than human cells ⁽⁴⁾.

In most instances these bacteria live happily on the outside of our bodies, or even in our mouth or throat, and never cause a problem – even the ones that cause horrible infections like NF. Nobody really understands why they suddenly (occasionally) turn deadly.

When things go wrong the bacteria have most frequently entered the human body via some kind of break in the skin. That break may be large and obvious or in some cases it may be almost impossible to see with the naked eye. It could be a cut or a scrape, a graze, a burn, an insect bite, a puncture of some kind (like an injection site or the prick of a thorn on a rose bush), a spot or a boil, or a surgical wound.

They can also enter via any small injury that could have occurred during daily life or even during childbirth. People can also get NF after blunt trauma - an injury that doesn’t even break the skin. And in many cases, like mine, there’s no obvious way that the bacteria found their way into the body. Yet somehow, they did.

The bacteria that most commonly causes NF are group A streptococcus (GAS or ‘Strep A’). In my case it was both Streptococcus pyogenes and also a bacteria from another group called Staphylococcus epidermis.

Image caption: a visual representation of the bacteria known as Streptococcus pyogenes. Credit - Adobe Stock.

GAS contains over a hundred sub-types of bacteria - commonly carried around in our noses, throats, and on our skin with no ill effects. However, they can also cause a range of diseases such as ‘strep throat’ (pharyngitis) and more serious conditions such as scarlet fever, of which there were epidemics in the 19^th and early 20^th century in many European countries that resulted in a large number of deaths ⁽⁵⁾.

Although NF is sometimes referred to as “flesh eating bacteria” or a “flesh-eating disease”, the bacteria(s) that cause it don’t literally chomp away on your flesh. In fact, the bacteria produce toxins that damage the blood supply to the fascia and as a result the tissue dies. However, GAS bacteria do also produce enzymes which also digest or dissolve the tissue.

Once the blood supply to the affected area is damaged it prevents i.v. antibiotics reaching it. So, the only solution to stop the infection spreading further is surgery to cut away the affected tissue – in this case the fascia.

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HOW MANY PEOPLE GET NF?

NF may be classified as ‘rare’ yet it kills an estimated 150,000 people globally each year and leaves thousands with life changing consequences ⁽⁶⁾. The numbers likely underestimate the scale of the problem due to under-reporting and misdiagnosis.

The number of NF cases varies around the world - from as little as 4 cases per million people per year to over 150 cases per million ^(3,7). There is remarkable consistency in rates seen in industrialized countries (such as Australia, UK, USA, Canada, Denmark, Sweden, Netherlands, and Finland) with rates between 20 and 40 cases per million per year ⁽⁵⁾.

Here in Denmark, it has been estimated that there are around 120 cases per year in our little population of just around 6,000,000 people ⁽⁸⁾. Even though we have a well-functioning public health system, this horrible infection will take the lives of 20% of patients in the first few days and up to 30% within a year of the infection ⁽⁸⁾. The number of cases is many times higher in countries with less advanced healthcare and there up to half of the NF patients will die.

NF infections decreased during the COVID-19 pandemic ⁽⁹⁾. However, not only have they rebounded to higher than pre-pandemic levels - in Denmark and other countries such as the US, Canada, UK and France – but data suggests that overall, the number of these infections has been trending upwards for some years ⁽⁸⁾. In addition, there have been periodic spikes in these infections in industrialized countries from the 1980s onwards ⁽⁵⁾.

Recent increases in cases are thought to be related to microbial virulence i.e. the bacteria are getting better at damaging our bodies and they are becoming more resistant to the antibiotics that we have available to treat these infections ⁽³⁾.

Right around the time that I got sick in late 2022 alarm bells started to ring, not only in Denmark, but also in other countries like the UK and US as the result of a dramatic increase in ‘strep A’ cases.

NF hit the news in early March 2023 as there had been 35 deaths in Denmark from December 2022 to February 2023. A major jump in both incidence (the number of people infected) and number of deaths ⁽¹⁰⁾. By July 2023 the number of deaths attributed to NF was already 76 – drastically higher than anything that has been seen previously ⁽¹¹⁾.

ARE SOME PEOPLE MORE AT RISK OF GETTING NF?

The simple answer is yes, but I can’t find any evidence that I was one of them. Fit and healthy people with no known risk factors get it too. I say ‘known’ as there is a suspicion that some may people have a kind of genetic susceptibility to these infections by GAS bacteria. Genetic differences between people could perhaps explain why some of us develop a potentially fatal infection, while others, infected by the same type of bacteria, experience nothing more than an irritating sore throat ⁽¹²⁾.

Around 75% of people who get NF have other health problems (so-called co-morbidities) that may lower their body’s ability to fight infections and so put them at higher risk of NF ⁽⁸⁾. Most frequently that seems to be diabetes and obesity (around 40%), vascular disease (around 30%), and in some instances previously undiagnosed cases of cancer (around 20%) ^(8,13). But one in four NF patients are like me and don’t have any other co-morbidities ⁽⁸⁾.

There is also evidence to suggest that some other diseases, such as influenza, may also affect our bodies in such a way that we are more at risk of infections such as NF ⁽⁵⁾.

HOW DO YOU KNOW IF YOU (OR SOMEONE ELSE) HAVE NF?

As I’ve said, probably too many times by now, every NF patient’s story is unique. That relates not only to which part of the body is affected, but also to how the body reacts to the infection, and the symptoms that they experience as they first become aware that something is wrong with them.

My first symptom was vomiting and an unexplained (but not yet excruciating) pain in my groin – right in that crease where your leg joins your body. Eighteen hours later when the diarrhea started, the pain had become intolerable (even after multiple doses of morphine), and I was showing signs of sepsis. Less than twenty-four hours after my symptoms started my blood pressure was dangerously low, and I was going into septic shock. It was only then that my leg started to swell and go red - hinting at something going on in that area of my body.

Diagnosing NF early and acting quickly is critical yet misdiagnosis is common. Many doctors will never see a NF case so it’s not the first disease that would jump to mind. As you’ve heard my own medical journal outlines the doctors investigative process as they went through various possible causes for my sickness, trying to work out what was wrong with me. They suspected a deep vein thrombosis, then diverticulitis, then kidney stones, back to diverticulitis, and then a fallopian tube infection, before finally thinking that it could be NF.

The problem is simple. The symptoms of NF are frequently non-specific and commonly associated with other diseases. They can develop incredibly quickly. And to add to the confusion symptoms vary widely between patients. I found frequent references to early symptoms being ‘flu-like’ yet I was too busy vomiting to even consider if I felt like that. Certainly not as far as I remember.

Other sources split symptoms into ‘early’ and ‘later’. ‘Early’ symptoms - mostly caused by the toxins released by the bacteria - can include a red, warm, or swollen area of skin that spreads quickly – yep, I had that, but later. They also mention severe pain, including pain beyond the area of the skin that is red, warm, or swollen.

Pain related to necrotizing soft tissue infections is particularly excruciating and unresponsive to pain medication – patients have described it as being ‘far worse’ than being in labor ⁽⁷⁾. I definitely had the pain, and it got worse and worse over the first 20 hours, but initially there was absolutely nothing to see on the surface of the skin.

Last but not least they mention fever – well I had a little fever, but nothing compared to what I’ve experienced with other common minor illnesses.

Then there’s what are categorized as ‘later’ possible symptoms of NF. Ulcers, blisters, or black spots on the skin – nope didn’t have those. Changes in the color of the skin – yep it went red, but nothing else before that first surgery. Pus or oozing from the infected area – nope, another strike.

Dizziness – oh most definitely yes once the septic shock set in and my blood pressure plummeted. Anyone is going to be dizzy when that happens. Fatigue (tiredness) – yep, but I had that the afternoon before it all started at 4am the next morning.

And last, but most definitely not least - diarrhea or nausea. Well that I had in abundance, but only after I’d already been vomiting for twelve plus hours.

So ‘later’ can be ‘earlier’, ‘earlier’ can be ‘later’, and some symptoms may never appear at all. And so many of the symptoms I’ve mentioned can be associated with a simple stomach bug or another common, and most certainly not life threatening, illness. All of that makes it even harder to know that NF is the culprit.

So far, I’ve talked a lot about how fast these infections can progress and how quickly symptoms develop. But results from a Nordic research study suggest that it isn’t the same for everyone even though other studies have claimed it is always quick onset – it’s yet another variation in the NF story ⁽⁷⁾.

The researchers described three speeds of disease onset.

• A ‘short inception’ version where symptoms started and rapidly progressed to life-threatening in a matter of one to two days. That was my experience.

• But they also described a ‘medium inception’ version where symptoms developed over three to seven days.

• And finally, a ‘long inception’ version where symptoms developed over more than seven days, with the person feeling under the weather and perhaps having recurrent throat infections for a month or having flu-like symptoms before things became life threatening.

The study was small, like so many when it comes to NF, so it’s hard to know how much we can trust the data, but it seems possible that NF can develop more slowly. Though the short and medium inception versions were still the most common.

Of course, a diagnosis isn’t made purely based on the physical symptoms that we can see or touch. There are extensive blood tests that will be done looking at markers of infection and inflammation. Though none of them are specific to NF. Blood can also be cultured to find out exactly which bacteria is involved, but that takes time.

Then there’s imaging that can help us see what is going on inside the body. Computed tomography (aka CT) scanners are often readily available (at least in the developed world) and can help doctors diagnose NF. The scans show inflammatory changes, such as accumulation of fluid (oedema), thickening or collection of pus (abscesses) in the fascia, in addition to gas formation.

But these scans are often difficult to read and interpret. I was scanned almost as soon as I got to the hospital and though they could see something was wrong in my abdomen, they really couldn’t be sure what it was that they were actually seeing or what it meant.

When all is said and done NF is frequently only confirmed on the operating table once the doctors have the chance to open the affected area. If it’s NF then they will find foul-smelling ‘dishwater’ pus and grey, friable (breaks easily into smaller pieces) necrotic fascia and a lack of bleeding ⁽³⁾. I’m glad I wasn’t standing in that operating theatre when they opened me up!

COMING SOON

Chapter 22. A Trip to the Deep - next Thursday (16th October)

How is NF treated? What are the options? And why is there a photo of me hugging what looks like a small white submarine contraption that has some kind of space age control panel?

Chapter 23. A Life Changed - landing 23rd October

If you are unlucky enough to get NF what are the possible medical consequences - including skin grafts, amputations, and even transplants. What is going on in terms of NF research, including possible new treatments on the horizon. And finally, how can you find your community and people that you can relate to…

References

Many of the same references are used repeatedly across these three chapters of the book so if you’re interested in getting back to some of the source data I’ll be publishing a list at the end of Chapter 23 along with a few useful websites.

Subscribe now

If this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.

Thank you!

If you missed any previous chapters from the book then you can find them easily on my website – click HERE and it will take you directly to the webpage dedicated to the book where you can read or listen to any previous chapters that you might have missed.

Every THURSDAY I’ll continue to share my ‘book in parts’ - Hold My Hand: A Journey Back to Life - chapter by chapter.

As always - thank you for reading or listening!

You can breathe a sigh of relief this week - I’m taking a mini break and not posting a new chapter. You get a pass. A week to recover from some of the hard stuff that I’ve been sharing about my necrotizing fasciitis journey. Though there has been at least a bit more positivity lately. So why is there no chapter this week when there are still more to come? Let me bend your ear and explain.

Since May 1st I’ve been consistently publishing a chapter a week. And last month before we set off on ‘the big UK camper van trip’ I had (I thought) finished draft 5 of the book. All the remaining chapters were in Substack and scheduled to publish.

We started out, back at the very beginning, with the opening Prologue: Life is a Game of Chance.

Then we went into Part I: My Story - covering those first two weeks after the tornado hit i.e. after I got sick. If you haven’t read it yet then start with Chapter 1. Out of Nowhere where it all kicks off on 22nd December 2022. Or catch up on the audio recording of each chapter which are published together here.

And then last week we finished Part II: A Journey Back to Life - stories from the subsequent two years as I fought to recover both mentally and physically. That section starts with Chapter 12. Alien World which is the most read chapter of the book thus far. I wish I knew the magic sauce that has made it so popular.

Today we should have been moving on to Part III: NECK-re-tie-zing FASH-e-i-tis. But sometimes even the best laid plans go awry.

I always envisaged having a specific part of the book dedicated to the science and that was more educational. Of course it also includes more of my own story from the medical perspective. That goliath of a single chapter about NF was way too big to handle. So initially it was split into two posts when I made my last revisions, copied it into Substack, and recorded the voiceovers last month.

But… as of earlier this week my brain kinda exploded. It happens sometimes when my emotions (and all those memories) suddenly get the better of me for a little while. In a weird way these episodes always lead to a breakthrough of some kind. It’s a bit like unblocking a drain. Once again I could see things more clearly. And there was a distinct light bulb moment while I was swimming up and down my beloved pool.

What was that idea? Well, what started originally as a single chapter, that then split into two, morphed again and I’m now convinced that it needs to be split into three chapters. Why? Simply because I think it will be so much easier to absorb. And secondly because there was a personal story in there that was drowning in the other material and which needed to be able to breathe and stand on it’s own.

Below you’ll find out more about what’s ‘coming soon’ and a summary of the upcoming chapters in this part of the book.

Have no fear the science and medical stuff isn’t quite the end. There will be a closing chapter - Epilogue: Hopes & Dreams - that will be published at the end of October.

As always thank you for reading (or listening). I live in hope that this more informative section of the book will perhaps help save a life in the future.

Now I’m off to finish editing those revised chapters and do the voiceovers all over again! Now where’s that duvet gone?

Have a wonderful day,

Jacqui

COMING SOON

Chapter 21. Science & Statistics - next Thursday (9th October)

What is (and isn’t) necrotizing fasciitis? What causes it? How many people get it? What are the risk factors? How can you recognize the symptoms? Aka the bloody hard, but so important bit.

Chapter 22. A Trip to the Deep - landing 16th October

How is NF treated? What are the options? And why is there a photo of me hugging what looks like a small white submarine contraption that has some kind of 1970’s space age control panel?

Chapter 23. A Life Changed - landing 23rd October

If you are unlucky enough to get NF what are the possible medical consequences - including skin grafts, amputations, and even transplants. What is going on in terms of NF research, including possible new treatments on the horizon. And finally, how can you find your community and people that you can relate to…

References

Many of the same references are used repeatedly across these three chapters of the book so if you’re interested in getting back to some of the source data I’ll be publishing the list at the end of Chapter 23 along with a few useful websites.

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If this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.

Thank you!

If you missed any previous chapters from the book then you can find them easily on my website – click HERE and it will take you directly to the webpage dedicated to the book where you can read or listen to any previous chapters that you might have missed.

Every THURSDAY I’ll continue to share my ‘book in parts’ - Hold My Hand: A Journey Back to Life - chapter by chapter.

Image caption: a totally gratuitous picture of Evie in ‘gimme gimme gimme’ that treat mode! I can hope that’s the look on the faces of my Substack audience when they read about the upcoming new chapters, right?! LOL

As always - thank you for reading or listening!

“…if we are full of enthusiasm for life, then the unknown reveals itself,

and our universe changes direction.”

Paulo Coelho, Eleven Minutes

Much has happened as a result of what I went through. My life is unrecognizable in so many ways to the one I had before I got sick. Some of those changes have been my choice. Some of them haven’t but have turned out to be positive. Some changes have been forced on me and I’m not so enthusiastic about them. And realistically some of the changes would have happened whether I got sick or not – that’s life.

Some of the changes lasted only a short time and I’ve reverted to where I was before. Others have stuck and in some cases evolved further. Some changes actually started before I got sick but were accelerated afterwards.

I appreciate just how fortunate I am that I have been able to embrace change and wasn’t financially forced ‘back’ to things that I did before that no longer work for me – like my job. I’m well aware that many others don’t have that luxury.

I feel as if all of my senses have been turned up five notches. I look at the world through different eyes. I stop and take the time to look around me more frequently. It’s more colorful – and those colors are much more vivid. I notice the birds singing. I feel the breeze on my skin.

My pace of life has changed. My expectations have changed. I no longer feel the need to be rushing forwards. I’m more settled in the here and now. Life is simpler.

I’m not saying that everything is perfect. Who can say that? But I can ‘see’ myself a little more clearly. And I’m quicker to catch myself and change course when anxiety or fear starts to impact on my mood or behavior.

There’s still plenty for me to work on.

LIVING LIGHTER

I used to believe that ‘more’ was always better. More clothes, more shoes, more bags, more sunglasses, more jewelry, more everything. If I liked something then I needed to have it in multiple colors. If I had one of something then having three must be better, right?

I also kept things forever without using them. Not only because I had too many things, but also because I wanted to keep them perfect until the right time. When was that right time? In many instances it would never arrive.

I even bought more than one of something when I liked it so much that I couldn’t bear the thought of it wearing out. I had cupboards full of things that I never used and that I most definitely didn’t need. How many dresses can one person wear?

I can recognize now that I used material things to soothe my soul. My life was centered around things that are probably better referred to as ‘stuff’. Buying stuff gave me fuel. It helped me get through hard times and kept me going.

I would shop to distract my frazzled brain when I was on yet another business trip. Running on pure adrenalin. I shopped to treat myself. To make myself feel better. Trying to put balm on the painful wound of being away from home (and Kim) yet again. And made worse by a whole heap of work stress.

It would help for a few hours, but the effect quickly wore off. And my wardrobe continued to grow with stuff that I simply didn’t need. But I kept doing it because I couldn’t find comfort any other way.

Instead of dealing with the root cause I continued to try and treat the symptoms. The loneliness. The stress. The effects of imposter syndrome. The feelings of never being good enough. The anxiety that one day I’d be found out.

On top of that I was like a squirrel building its stash of nuts. I couldn’t take anything else on top of all that stress. As a result, I was terrified of running out of anything – be it shampoo, conditioner, my preferred deodorant, toothpaste, perfume, etc. So I bought multiples of everything. The outcome was more cupboards full of stuff that would in some cases last me for (many) years. If it didn’t go off first.

But on the other hand, I didn’t keep stuff for the sake of it. I didn’t inherit the sentimental attachment gene that Mum was born with. I don’t feel a duty to keep stuff that people have given me except in rare instances. I don’t feel an attachment to stuff I bought just because it was in a certain place, at a certain time, or perhaps with a certain person.

After I got sick my priorities and values changed. Suddenly I started to see just how much ‘stuff’ I had, and it felt like a weight around my neck dragging me down.

As my recovery progressed my aversion to ‘stuff’ accelerated. Over the past year, I’ve already started the process to live with less. I’ve sold (a lot) of stuff. I’ve donated stuff. I’ve thrown out stuff.

There’s also been a change in the kind of stuff that I need as the nature of my daily life and work has changed. I rarely go to a business meeting that’s face to face. Online meetings are no longer a daily occurrence and even on video I’m only seen from the chest up.

My working (and non-work for that matter) wardrobe for many years focused almost exclusively on black. It was easy to match. Quick for packing as I never had to consider if one thing went with another. Practical. Classic. And typical for me – it meant that I didn’t stand out from the crowd. I could fade into the background.

Nowadays I can’t stand black. It reminds me of the darkness, the delusions, and the terrifying hallucinations. It sucks energy from a room and from me. All black from head-to-toe is a thing of the past. It’s too miserable. Too boring. Too morose.

Now I dress in, what is frequently, a riot of color. Clashing or matching – I don’t care as long as it’s bright. I can stretch myself (maybe) to a black pair of shorts or a pair of leggings, but only if they’re teamed with something colorful.

Image caption: one of my rainbow draws of T-shirts. Not a bit of black in sight!

I don’t care what other people think. They’re wasting their energy if they want to use time judging me. I’m too busy having fun wearing a real-life rainbow. Color and comfort have vanquished expectations.

I only buy things that I really need and if they’re not absolutely essential then they must bring me joy. I have no need to spend money to soothe my battered soul any longer.

I know that I could walk out of this house tomorrow with Kim, Evie, a small rucksack of ‘stuff’ that’s special to me and never look back.

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GOOD VIBRATIONS

How infectious are you? Don’t worry I’m not talking about you passing on some kind of disease. Since I got sick I’ve become so much more sensitive to the energy that we each radiate. Affecting, or perhaps I should say infecting, all those around us and reflecting back to us like a mirror.

When we were going to Dr Handsome’s wound clinic each week I was treated by the same nurse at every appointment. She always had a smile for me. She exuded calm, kind, competent, professionalism to her patients – I’m sure it wasn’t just me. I felt so safe. I trusted her. It made such a difference, not only to be seen by the same person each time and have that continuity of care, but also to bask in the positive, healing energy that she radiated.

I have friends who radiate infectious positive energy when I’m with them and I know I can do the same thing. But I also know people (not friends) who drain every ounce of energy from a room and from everyone in it.

They radiate negativity – resentment, anxiety, distrust, fear, anger, and uncertainty. I now avoid those people like the plague. Whatever they can offer isn’t worth absorbing all that negative energy.

Some years ago, when I was leading business development for a significant customer account, I was running team meetings to prepare our case to win new work (worth many millions of dollars) with that company.

I remember one of my colleagues walking in – as she entered the room she greeted everyone with a smile and said that she was happy that it was time to get ‘a little bit of Jacqui’. Apparently just being with me could boost her enthusiasm, re-energize, and inspire her. It blew me away. More than a decade later I’ll never forget her saying that.

I want to be positively infectious. Infectiously enthusiastic. Infectiously curious. Infectiously energetic. Infectiously empathetic. And maybe infectiously something else wonderful.

HAPPINESS COMES WHEN YOU TRY THE LEAST

When I look back on my life, before I got sick, I can see that I spent a lot of time looking backwards and living in the past. I’d ruminate about things that had happened, and what I’d said. So maybe I wasn’t so much ‘living’ in the past, but in reality constantly wasting valuable time, energy, and head space gratuitously beating myself up.

I drowned myself in guilt, shame, fear, anxiety, and any other negative emotion I could rustle up. Sinking, without trace, any self-confidence I’d managed to build up. Putting up a fake façade and acting as the imposter in my own life that I believed I was.

Looking forwards can be positive, but I took that too far too. I spent even more time thinking that ‘if’ or ‘when’ X happens then I’ll be happy. Cause and effect. When the next promotion happens then I’ll feel successful. When I’ve earned X amount of money then we’ll be secure. When I get past X meeting or X milestone with a customer then I’ll be able to take a break. I was very rarely, if ever, truly happy.

In between spending all that time in my head thinking about the past and the future there was almost no space left for me to be present and to live in the now.

In Bronnie Ware’s fascinating book Top Five Regrets of the Dying she lays out what she learned spending time with people close to the end of their lives. I wish I’d had the courage to live a life true to myself, not the life others expected of me. I wish I hadn’t worked so hard. I wish I’d had the courage to express my feelings. I wish I’d stayed in touch with my friends. I wish I had let myself be happier.

One that really resonated for me – I wish I hadn’t worked so hard. That’s definitely something I could regret. And yet I can’t regret it as it has put us in the financial position that has given me freedom to leave the corporate drudgery, the opportunity to have my own small business, and the head space to write this book.

The other one that stands out for me – I wish I’d let myself be happier. I just couldn’t. I can’t blame anyone but myself. I could regret that I simply couldn’t give myself permission. There was always something else to chase before I could reach that point. Happiness felt like it was for other people. I drove myself so damn hard. I didn’t have time to be happy. It felt like I was being lazy if I allowed myself even a little breathing space.

Since I got sick, I’ve spent a lot of time during my recovery actively ‘trying’ to be happy. Happy that I was alive. Happy I still had all my limbs. Happy I still had Kim. But as I found out if you try to hang on to happiness too tight then you strangle any possibility of actually being happy.

You can’t force it. It just happens. But it’s about not stopping it. Not avoiding it. Happiness comes when you try the least.

“…nothing pollutes and clogs a mind as thoroughly as guilt…”

Matt Haig, A Life Impossible

In the months after I came out of hospital, I was engulfed by huge waves of guilt. Guilt that I’d put my family through such a horrible experience that would scar them forever. Overwhelming, crushing, paralyzing levels of guilt that swamped my mind. Guilt weighed heavy on my shoulders. It created a fog through which I couldn’t navigate.

It took time to work all that through in the therapy sessions with Violet. I don’t think I could have done it alone. I was too lost.

I’ve accepted that it wasn’t my fault that I got sick. I can also accept that I’m not responsible for other people’s feelings and reactions – it’s up to them how they deal, or not, with what they’ve been through.

I no longer blame myself. I know now that it was a random set of chance events that led to me getting sick. I didn’t get sick because of anything I did. I couldn’t help what happened to me and the impact that had on those around me. It was all outside of my control.

These days I regret (almost) nothing. Most days. And I no longer feel any much guilt. Occasionally something creeps up on me, but I catch it quickly and put it back in its box.

I could regret a lot of things. I could wish things had been different. But in almost every case it would mean that my life would have travelled along a different path that wouldn’t have led to me moving to Denmark and meeting Kim. To where I am. To being the person I am now. I wouldn’t change that for the world.

I can’t change my past, but I can accept all the things that have happened to me. I believe I can find contentment by caring a little less and worrying a lot less.

If today were to be my last I could depart with no regrets, no guilt, no shame. Like everyone I have bad days, but now I know that no feeling lasts forever. Let it be and then let it go.

On the days when I glimpse true happiness it feels like sunshine on my skin and a joyful warmth in my stomach. I love my life and embrace every element of the experience that has brought me to where I am today.

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TOMORROW

“The truth is you don’t know what is going to happen tomorrow.

Life is a crazy ride, and nothing is guaranteed.”

Eminem

Like just about everyone else I have a challenge processing the concept of my own mortality. It feels like we’re each immortal and that we’ll live forever. It’s impossible to imagine not being alive.

Yesterday is in the past. Tomorrow could just be a hopeful illusion and might never dawn. There is only today – right now.

My expectation, as I shared earlier, was always I would live to a ripe old age. I based that assumption on solid evidence of the longevity of women in my close family. My grandmothers lived to 91 and 95 years old respectively. Mum is heading for 90. And Aunty Mary is rebelliously energetic (and still auburn haired!) and also in her late 80’s.

But whether we like it or not our time on this earth is finite. Our days are numbered. And we will all die one day – in most cases we just don’t know exactly when.

But how much time do we have left? Check life expectancy data in Denmark and a 55-year-old woman can, on average, expect to live another 30 years to the ripe old age of 85 ⁽¹⁾. That’s similar to the UK average of 87 years ⁽²⁾. And a little more than the US average of 80 years for a white female ⁽³⁾.

So maybe, if I’m lucky, I may have another 30 years. It sounds like a long time, but more than half of my life has been and gone. And what really is another 30 years? It’s only 1,560 weeks. That’s 10,920 days. That’s another 30 Christmases, another 30 summers, and the clock is ticking. But what if it’s only five years or ten years or perhaps only months that you have left? Depending on your health and fitness how much will you be able to get out of those years?

I’ve thought a lot – what if my life had ended back in December 2022? Would I have felt satisfied with the life that I’d lived? Had I accomplished everything I wanted? Had I loved life? What would people have remembered about me?

Data on NF patient survival does seem to suggest a shorter life expectancy compared to the wider population ⁽⁴⁾. But scientific data can only tell us so much. It’s dangerous to see something as fact when it’s a case of probability and not certainty.

That’s true especially when the journey for each NF patient is so unique and there are many other factors such as obesity, diabetes, smoking and heart disease that can complicate the numbers. All you can take from this data is that perhaps there’s a higher likelihood that you won’t make it into the depths of old age. But then again, you might.

I could tell you that I live every day as if it was my last – but I’d be lying. Since I got sick, I better appreciate that my number of tomorrows is not infinite. I recognize that there’s no time to waste. I want to live in the NOW. I’m doing my best to not wish time away – not always successfully!

Sometimes I’ve been aware when I’ve done something for the last time, and had the opportunity to appreciate it. To say a fond farewell or let out a sigh of relief. But frequently I’ve had no idea.

Little things, that you do for the last time, can have a huge impact on your life – something as small as leaving your house. When we left to drive to the ER that night, I didn’t have even an inkling that I might never come home again.

Or what about something bigger like telling someone you love them. I’m sure I told Kim before I went down for that first surgery, but I have no memory of it. And I certainly had no idea that I might never speak to him again if things had gone the other way.

And of course, I had no idea when I slipped into that drug-induced oblivion that it might be the last time that I’d be conscious.

I remember our last ski trip with Dad when he was in his late 70’s. He knew his fitness was waning. His legs looked like they had the strength of some rather over-cooked spaghetti when it came to controlling his skis. Add to that the numerous time that we, and unsuspecting French skiers, had to pick him up after he’d slid to a halt and gently keeled over into the snow.

He used the trip to say goodbye to a sport that he had loved since his early 20’s. We could see just how hard it was for him to say farewell. But he knew in his heart that it was time. And it was wonderful that he got the chance to do that one last trip with Mum, Kim, me, and the kids.

What I didn’t know was that trip would also be the last time I would ski. My back would soon be too painful for me to even entertain the idea of skiing again. And there’s no chance on this earth that I’ll risk skiing with all that beautiful titanium holding my back together these days.

We can never always know when it’s the last time and thinking about it too much may create a whole heap of anxiety.

But I know that perhaps, just perhaps, today might be the last time I’ll experience a certain something in my life.

Image caption: sunrise over one of our favorite parks where we walk Evie in the mornings. The dawn of a new tomorrow.

REFERENCES

1. Danish Government - Statistics Denmark – Life Expectancy Statistics

2. UK Government – Office for National Statistics - Life Expectancy Calculator

3. Data Commons – Demographics - US Life Expectancy

4. Long-term outcomes of patients with necrotizing fasciitis – J Burn Care Res 2010 – Timothy D Light et al.

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If this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.

Thank you!

If you missed any previous chapters from the book then you can find them easily on my website – click HERE and it will take you directly to the webpage dedicated to the book where you can read or listen to any previous chapters that you might have missed.

Every THURSDAY I’ll continue to share my ‘book in parts’ - Hold My Hand: A Journey Back to Life - chapter by chapter.

As always - thank you for reading or listening!

FAMILY

I didn’t get sick in a vacuum. I couldn’t help the fact that my sickness impacted my family. They were whisked into that chaotic tornado, flung around in its vortex, and spat out. Confused. Disorientated. Discombobulated. Disbelieving. Horrified at what had happened.

How would they have reacted if I’d vanished from their lives in the space of just a couple of days? Leaving them to live in a world where I no longer existed.

How would Kim have dealt with suddenly being alone? How would Mum have come to terms with losing me so soon after Dad?

And what about friends and work colleagues? I don’t have a huge number of friends and many of them are outside Denmark. Most didn’t even know I was sick until I told them, in some cases, weeks later. I guess Kim would have told them sooner if I hadn’t made it. With the distance between us they perhaps could have just let themselves believe that I was still out there somewhere.

I’ve thought about the message being sent out at work to let people know that I’d ‘passed’. I hate that term. I’d have died. Why avoid stating fact? I imagine peoples’ surprise. Their confusion. For a few days I’d have been the hot topic of conversation before I was consigned to history and everyone moved on. What would they have remembered about me?

It’s not just those that you’re close to that are affected. For months I couldn’t help but blurt out to everyone I met what had happened to me, often including far too many gory details.

I would see the other person’s face move through shock, horror, and often sorrow. They had frequently never heard anything like it. They had no idea what to say.

I was still trying to understand what had happened to me and felt such a visceral need to share. I think it was all part of my own process of coming to terms with it.

As time has passed that need to share has decreased and I can now tell my story in just a few words. In many instances, I don’t mention it at all unless it’s relevant in some way.

I’ve wondered sometimes if getting sick at Christmas – such a special time of year – made the whole thing worse for all of us. We’d normally have been celebrating and spending time together. Instead, my family had an empty chair at the dining table. A stark reminder of what was going on.

What if I’d become sick on a different day at a different time of year? A date without any other associations. A random day like July 15^th for example. Would the anniversary have had the same impact as it still does now? Or perhaps it would just slide by each year.

My family, with the best will in the world, attempted to give me a replacement Christmas a couple of weeks after I made it out of hospital. A full Christmas dinner and more presents for me. I felt sick. It was impossible to be jolly. The stress was still radiating from Kim that he still felt he could lose me at any moment. Sadly, their good intentions fell flat.

One year on it was like déjà vu. We had Mum and Aunty Mary coming over again – pushing me to promise that I’d be there with them this time.

I had a hard time putting up festive decorations. It made me feel as if it was going to be Groundhog Day and the whole thing would start over with me getting sick again as soon as they arrived.

Those decorations were glaring reminders to me of what happened the year before. It all made me want to vomit. I made Kim agree to a specific date, as soon as Christmas itself was over, when I could take them down again.

I used to love Christmas. Not so much the event itself, but the month before. All those sparkling lights, pretty decorations, festive songs, lovely food, and plenty of good cheer. Watching silly Christmas movies like Love Actually for the 400^th time.

Back at the start of my working life I worked in a large department store that sold a wide range of clothing for adults and kids. I loved the hustle and bustle as Christmas approached. Helping people pick gifts. Listening to the Christmas music playing all day over the sound system.

Now I’d cheerfully cancel Christmas each year and jet off to some sunshine and ignore the big guy in the red suit. Over the coming years I hope that things will get easier.

Yet there were some positives that came out of all this. Three friends have stood out. Their unwavering support and friendship has meant everything to me.

They were the friends that exchanged messages with me on December 24^th and 25^th. When I went silent they both tracked down Kim to find out what was going on. They stuck with him through the various updates as I lay unconscious. The other friend joined me on that memorable trip to visit the hyperbaric chamber where I was treated.

My tiny family has been extended with my ‘chosen’ family – I’m certain that we’ll be there for each other through all of the ups and downs of life.

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KIM

Dying would have been easy for me. Once I was unconscious, I wouldn’t have known anything about it. I imagine that I’d have just floated away.

Kim was the one who was conscious throughout. He had to live through it. He carried the stress, the pain, the worry, the anxiety, the terrifying fear of the unknown, and the very real possibility that his life was going to be changed forever. The future we’d planned, and looked forward to, wiped out in a matter of days.

Multiple times he had to face the fact that he might not bring me home from the hospital alive. Emotionally it was a crushingly heavy load to carry. One that afterwards gave him physical symptoms from the stress and led him into therapy to help process what had happened and try to make sense of it.

I’ve looked around the house at my possessions and imagined Kim having to clear it all out. Things that may have been important to me, but not necessarily to him. Things that were no longer connected to a living person. How long would it have taken him I wonder? A while I think. He’d have wanted to keep ‘me’ around him. He wouldn’t have wanted to relegate me to his past too quickly.

I imagine that he would have tried to tell himself that I was just away on one of my frequent work trips. That one day I’d be back.

I wonder if over time he’d have needed to leave this house. The house of our dreams that we built together a couple of years earlier. Our own ‘grand design’. Whether he would have needed to get some distance from all the memories we’ve made here? This house is special. It’s more than just a house. It’s the physical manifestation of a joint dream.

Kim worries about me. It’s not that he didn’t worry about me before I got sick, but now he’s experienced coming so close to losing me he desperately doesn’t want to revisit those feelings.

Whether it’s just that I don’t feel the best one day – I’ll see the worry in his eyes. Or when he thinks I’ve been out on my bike for too long – I’ll get little WhatsApp messages asking where I am and when I’ll be back. Nothing suffocating or controlling, just a little bubbling anxiety.

The whole experience has brought us closer – something I didn’t even think was possible. It’s made us more honest with each other. More transparent about how we’re feeling and less concerned that we might hurt the other person simply by being truthful.

He’s held my hand throughout this journey and will continue to do so, for always, I hope.

MEMORIES AREN’T ALWAYS FOREVER

To many of the ‘what’, ‘when’, ‘how’ questions that I asked when Kim and I talked about what happened to me, especially those first two weeks when I was in hospital, I was surprised when he said:

“Uh. I can’t remember. I can’t remember what happened.”

The intensity of the experience wiped a lot of things from his memory.

I’m sad that the doctors didn’t take more time to talk to Kim. To prepare him for what was coming in terms of treatment or the possibility that they’d suddenly throw me in an ambulance and send me off to another hospital without telling him. Can you even imagine what it would be like to have your partner critically ill and not even know which hospital they’re in? Then again perhaps he just doesn’t remember.

He thinks that he only found out afterwards that they’d moved me and he can’t remember how he received that information. It was probably a phone call, but he’s not sure.

Yet he has other memories that are as clear as day. It broke my heart when he said:

“There was one day when I parked the car in our garage.” He’s crying at this point. “I sat there and thought that I was going to live in this house alone. Because you weren’t waking up.”

And it’s not just Kim. Mum is also missing a lot of memories from those days. Considering her age and the recent loss of Dad I wasn’t so surprised. But I thought she’d remember the big stuff. However, I talked to her recently and found out that she had no memory at all that I’d had any problems with my hands. Perhaps it’s the way our brains protect us from some of the most distressing elements of this type of experience.

OUT OF TOUCH

Probably the most vivid memories that Kim has shared with me related to the period while I was lying unconscious in ICU. I asked him to describe it to me.

“I held your hand. And I talked to you. Not all the time, but I sat next to you - on your right side. And your mum sat by the window on the other side. It’s quite shocking to see a person you love with all those tubes - being kept alive by a machine.”

“And not being able to talk to you or get any response from you – it was so hard. You were just out cold. Completely. You didn’t even move.”

Kim and Mum watched so many people come and go in the ICU. Many died. Have you ever seen a dead person? Mum and Kim didn’t get a choice. It was traumatic for them just being there.

“We were thrown out every time that something had to be changed, or somebody had to be cleaned or if there was a lot of people coming in to visit the other guy that was dead in the bed next to you, there was a queue of people coming to see him but only two allowed in at a time. There were hours of crying, wailing, and chanting from whatever religious book they believed in.”

“So, we found a room just outside and then we found out that that was not a room we could use because that was for personnel. The nurse’s lunchroom or something. Nobody was using it, but we couldn’t sit in it, so we had to go all the way outside the ICU and sit in the waiting room out at the front. Nobody would get us when we could go back in and we had to wait for someone to open the door to get in as it was always locked.”

This time I saw him aggrieved and angry. Annoyed at being thrown out. Annoyed at not being treated as if they belonged there with me. Annoyed as they felt forgotten on multiple occasions by the staff.

I was shocked by Kim’s description of the ICU – it sounds like a chaotic, noisy, overcrowded place. Kim and Mum didn’t feel welcome – they felt like they were seen as more of a nuisance. Of course, the priority was saving lives, yet it was obvious that it was the end of the line for most people in there and few would make it out.

A full-size harp was wheeled in to serenade one person that had died. In another case they listened to someone reading from a religious book of some kind for over an hour.

Can you even imagine the impact that seeing and listening to all that must have had on Kim and Mum when they didn’t know if I would survive? No wonder these experiences are seared into his memory.

COINCIDENCES

While I was lying in hospital Kim had to call the local car dealership as our car had a recall and we needed to book it in to be repaired – I asked him to tell the story:

“Yeah. I think I called the garage because we had an appointment to take the car in and I wanted to move that date as you were sick in the hospital. I talked to the guy, who was also named Kim, at the garage. And to explain why finding a new date was a little difficult I told him what had happened to you, and he said that happened to his wife ten years ago.”

“I didn’t know what to say. I just wanted to cry. It was almost the same day - she also got sick at Christmas. She just wasn’t so lucky. She died within a couple of days. He talked about having to go home from the hospital and have Christmas with his small kids when they’d lost their mother. He’s been alone with his kids for so many years now without her.”

I remember lying in my bed watching him as he made that call. Seeing his face crumple and tears start to roll down his cheeks.

Needless to say, that story blew our minds. We’d never met or even heard of another NF patient in our extended family and friends. At first, when we talked about it, we assumed that I’d had a better chance of surviving than this poor man’s wife as treatment of NF must have advanced in the ten years since she died. But it hasn’t.

She was a healthy woman, significantly younger than me, and NF took her life incredibly quickly. It still gives me goosebumps. I could so easily have gone the same way and Kim knows that he could have been telling a similar story to that guy from the garage.

“So when I went to the garage some days later to hand the car for the repair I met him and I shook his hand. It was just another wake-up call. That it was close. It was very close with you.”

Image caption: our wedding - sorry I couldn’t resist including one more picture from that wonderful day! I am so lucky to be married to what I think is the best man in the world.

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EVIE

This section of the book wouldn’t be complete without me talking about the smallest member of our family and my rehab team. Her boundless enthusiasm for walkies has forced me out of the house even on days when it was the last thing that I wanted to do. As soon as she wags her tail and fixes those big brown eyes on me then I’m a sucker for whatever she wants.

She’s a fantastic companion – happy to just be with us, ideally all sat on the sofa where she’ll insist on positioning herself so that she can watch the TV – just in case one of those animals on the screen thinks it can get into her house! As far as she’s concerned this house and garden are most definitely hers to defend.

If we’re in separate rooms, she’ll start by trying to herd one of us towards the other, offering a teddy as enticement. If that strategy fails then she’ll often find somewhere to lie in-between us as our offices are at opposite ends of the house. In her little brain I guess she wants to be as close as she can be to both of us or perhaps she’s just trying to be fair and divide herself equally.

Kim though is her ‘alpha’, what he says goes. In contrast I’m her safety blanket, always trusted to save her from whatever frightens her, even if it’s just a leaf stuck to her tail that is suddenly the scariest thing in her world!

Her funny mannerisms, desperate efforts to try and understand what we’re saying (head tilted to one side for maximum cuteness), mad tail wagging that gets her whole body in on the act, chasing after a ball in totally in the wrong direction, and sometimes epic fails when trying to jump on various pieces of furniture, have made us laugh more than we have in a very long time.

I was the classic kid who harassed her parents for years about getting a dog. Mum could be swayed, but Dad was dead against the idea – he knew we didn’t have the lifestyle, and simply weren’t home enough, to give a dog a good life. These days I can appreciate his point of view, but at the time I most definitely didn’t.

Instead, I got permission to have a succession of other pets. There were goldfish brought home from the school fair – one I remember was called Sooty. Was he black? Nope, he was actually a pinkish off-white!

He was followed by guinea pigs, a couple of rabbits, and a succession of (escapologist) hamsters of various sizes who would turn up regularly in strange places like the bath. How it got in there we had no idea. And then finally in my mid-teens we gained a tortoiseshell kitten from a rescue center, who I absolutely adored, and called Hania.

They’re all long gone now, but each one was much loved, and every death brought me to tears, sometimes for days at a time. I wonder sometimes if the people who now live in my parent’s old house have found the (unmarked) pet graveyard that was under the vegetable patch.

Kim and I talked about having a dog for years – he grew up with a dog and loved the idea of having one again. To give it the best life we’d planned to wait until we retired and had more free time. But with us both working the majority of our time at home post-pandemic we decided the time was now. We had no idea that my life was about to change so dramatically.

After my back operation we started to look around and think more seriously about what type of dog would fit us. The more we talked the more we realized that we wanted something along the lines of my stepdaughter’s lovely little dog. A tiny darling, at just under 2.5 kg, who is a ‘papchi’ (i.e. a chihuahua and papillon/miniature spaniel mix).

After a lot of looking – in what I’m now aware were very much the wrong places – I spotted a puppy. A ball of black and white fluff with the cheekiest face you could imagine.

But then Dad died. After all it wasn’t the right time to get a puppy. Plans were shelved and we headed over to the UK to support Mum and to say goodbye to Dad.

I remember saying to Kim “If she’s still available when we get back from the UK then it’s meant to be”. “If not, then it wasn’t.” I wouldn’t even let Kim contact the owner to talk to her. I was convinced the universe would make the decision for us.

Needless to say – we got home, and she was still there. Waiting for us. Within a couple of days this little bundle of joy came to live with us. Gorgeous, funny, bouncy, sassy, strong willed, and totally averse to listening to any human.

The night after she arrived it snowed. Anyone who has had a puppy will tell you that it’s best to get them during the warmer months of the year when house training is much less painful in terms of the outdoor temperature.

Standing out in the garden for what seems like hours, waiting for them to do whatever they need to do is no fun. On top of that she was permanently distracted as she was fascinated by the snow – so it took even longer.

I was so excited when we got Evie. But we didn’t get off to a good start. Never having had a dog before, I was overwhelmed by the way she took over our house and rode roughshod over all our routines. So much so that I spent the first two weeks trying (very hard) to give her back! Luckily Kim and I never felt the same way at the same time, so she managed to hang on.

We’d had her for just four weeks when I got sick. No time at all.

As I’ve already mentioned, I was terrified of Evie when I first came home from the hospital. She had all this energy and was dying to just be with me, on me, beside me, whatever bit of me she could get at. Trying to lick me to death. It freaked me out and it took time for me to gain my confidence back to enjoy her company again.

But my recovery would have looked very different if I hadn’t had the benefit of her endless love. She’s glued herself to my side and snuggled up when she knew I was sad. She’s made me smile a million times even when I haven’t felt like it.

She warms my heart every time I’m greeted by her wagging tail or another lick attack when she just has to let me know how much she loves me. And if I start to laugh then the wagging goes up to super speed and the licking gets even more determined.

Whether I’ve been out of the room for a whole five minutes, or been out of the house for a few hours, she’s always there waiting to give me a wonderful welcome home. Literally bouncing up and down in ecstasy.

From the beginning we started to teach her to ring a bell by the garden door to ask to go out when she needs a pee or poo. It’s been so useful, especially when Kim and I are working at opposite ends of the house and can’t keep an eye on her all the time. Guests are always amazed every time she does it, but it wasn’t difficult for her to learn.

Now she uses that bell to throw orders at her humans. Whether it’s a ball stuck under the sofa that she can’t get at and she needs you to face plant on the floor and stretch an arm into the dust bunnies to retrieve it.

Or using it to get me out of bed to take her for a walk – when I open the garden door to let her out (as the stupid human assumed that was what she wanted), she’ll just stand in the middle of the living room wagging her tail and obviously thinking ‘gotcha’.

That may make her sound overly intelligent. At other times I’ll ask her to ‘sit’ and she’ll look at me as if her one brain cell has never heard that word before in her life!

I cherish every moment that I’ve spent with her during my recovery and hope she’ll be with us for many, many, many more years.

Image caption: Evie in ‘ultimate cuteness overload’ mode!

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If this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.

Thank you!

If you missed any previous chapters from the book then you can find them easily on my website – click HERE and it will take you directly to the webpage dedicated to the book where you can read or listen to any previous chapters that you might have missed.

Every THURSDAY I’ll continue to share my ‘book in parts’ - Hold My Hand: A Journey Back to Life - chapter by chapter.

As always - thank you for reading or listening!

“I am better than I was yesterday but not as good as I will be tomorrow.”

Unknown

TOUGH vs STRONG

The whole NF experience left me feeling betrayed by my body. The work I’d put in over the years to invest in my physical health and to be ‘fit’ seemed to have been for nothing. Yet my gut told me that all that effort may well have played a significant role in my survival.

So I went hunting for data and evidence and my suspicions were confirmed that my level of fitness really would have an impact in this type of situation. Not only in terms of contracting an infection like this in the first place, but also in terms of my chances of living to tell the tale.

It’s always hard to find data specific to NF as it is so special. But a long-term Swedish study looked at a group of patients that had experienced a wide variety of infections – including soft tissue infections such as NF ⁽¹⁾. They showed that exercise did seem to reduce the chances of getting a major infection and sepsis, being admitted to ICU, and death.

The exercise effect was shown to be “dose-dependent”. In other words, the more you exercised, the lower the risk of getting and dying from one of these infections. As little as an hour of walking or exercising a week made a positive difference. Yes, I really said that, as little as 60 minutes over the course of seven days. But take that up to five hours a week and they saw an even greater positive effect.

Another study suggested a similar pattern for patients with COVID infections ⁽²⁾. Physical activity before infection seemed to reduce both the disease severity and the risk of dying for these patients. This was especially true when the person had been doing more than 150 minutes per week of moderate physical activity or more than 75 minutes per week of vigorous activity.

Yet it’s not just about surviving – it’s also about how long it takes you to recover. None of my recovery from NF felt particularly fast to me as it was longer than anything else I’d experienced previously. But I’m very much aware that my physical recovery was significantly shorter and much more complete than many other NF patients. I’m one of the lucky ones.

One of the words that several people have used to describe me during my recovery – including Kim – is ‘strong’. According to the Collins English Dictionary someone who’s ‘strong’ is healthy, with good muscles. They can move or carry heavy things or do hard physical work. They’re confident and determined – not easily influenced or worried by other people.

But being strong is just one perspective of how I have handled what happened to me. I didn’t feel that particular word said enough. Instead, I tried looking up the definition of ‘tough’. A person who is tough is so much more than just strong. They can also tolerate hardship, difficulty or suffering. They’re feisty, self-confident, unyielding, hard as nails, resilient and even badass. I love that description. Now all I needed to do was live up to it!

As part of my physical recovery I needed a goal. Something to work towards. In recent years Kim and I completed the annual Copenhagen Swim – a 2km (a mile and a quarter) open-water event that happens in the city on the last Saturday in August – a total of four times. As soon as I was back in the pool I knew that participating in that swim again was my target. It would be almost exactly eight months after they’d woken me up from my coma. In my head the swim would be proof that I was physically ‘better’ and that my body was no longer letting me down.

I put in the laps. I did my best to build my stamina. But by the time that August rolled around I knew in my heart that I wasn’t where I needed to be. My body just wasn’t there yet. Previous experience reminded me of just how hard it was to swim that distance in choppy open water, with hundreds of other swimmers, compared to the placid calm of the local pool. And that was when I was truly ‘swim fit’. Add to that I’d have to do it alone as Kim wasn’t up for it this time around. But I wasn’t about to give up. Did I mention that I can be stubborn past the point of reason?!

On the day I’m still not sure how I managed it. My courage and bravery were stretched to their limits just getting in the water at the start. I almost gave up 100 times. Even in the first 200 meters I remember looking longingly at the lifeguards on their paddle boards and imagined swimming over to take a break and to admit I was done before I’d even really started.

As I swam out of the main waterway and into the canals around our parliament building I kept looking at the various sets of steps that led out up the canal wall and imagined my feet taking me out of the water.

As Kim walked the course on the path above me his unwavering support kept me going. Calling encouragement and kind words to me. I could not give up. I would not fail. It was not an option.

I’m still not sure how I got through it. But I did. I’ve never done anything so physically hard in my life. It took guts. It took perseverance. I had to dig deep in my soul. It took every ounce of my resilience. It took everything (and I mean everything) I had to complete it. After all that I know without question that I’m bloody ‘tough’.

Image caption: my beaming grin on Saturday 26th August 2023. Just eight months after waking up in intensive care I swam (for the 5th time) the 2km Copenhagen Swim. Just check out that smile of victory! I completed it once more in August 2024 and have now hung up my wetsuit. I’ll stick to the pool for the foreseeable future. But I’ll never say never again!

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PHYSICAL IMPERFECTIONS

“Scars are a truly beautiful thing. Yes, they can be a little ugly on the outside, but scars show that you’re a survivor, that you made it through something, and not only did you make it through, but now you’re stronger and wiser …”

Kyle Carpenter

A snapshot in time in my minds eye. The moment I stood in our bathroom on the day I came home from hospital. The shock of seeing my ‘new’ self in my ‘old’ world. Unable to process that the person looking back at me was indeed me. It’s impossible to comprehend how much your body and physical image can change in the space of only two weeks until you experience it.

It took around three months for my open wounds to heal and become scars. The impact of the infection slowed my body’s healing abilities. And so much tissue had been removed that what was left was stretched thin in some places and the local blood supply wasn’t great which also contributed to delaying the healing process.

Kim became a master at redressing my wounds and each time would take a picture so that he could compare if they had healed a bit in the few days since we last looked at them. You can imagine that they’re not pictures we particularly want to look at again.

I hated looking at my open wounds – terrified every time that we had to remove the dressings that I would see some sign of an infection starting again. And equally desperate for them to look like they were healing so that I could get back to some version of normal life and the luxury of a shower.

Each day seemed longer than the last as the healing process moved so slowly. Every minute dragged past. Now looking back if feels like such a short time that went in a flash. Yet it felt like forever when I was going through it.

Now the scars on my body tell my story. Not only the story of my journey with NF, but also of many other events in my life. The knee scar after falling in the garden playing chase with family friends when I was five years old. The scar on my lower back from that surgery. The scar on my shoulder that looks as if someone tried to cut my arm off but relates to three surgeries after my cycling accident at university. And a variety of scars from the suspect moles that I’ve had removed over the years. To name only some of them.

My scars are rarely invisible as I’m ‘keloid’. When I’m cut open I have a genetic predisposition to sometimes produce thick raised scars. Dad was the same. Definitely not pretty. They’re not harmful to your physical health. But they look gnarly.

I remember the first time that I went back to the pool – my wounds finally sealed enough for it to be safe. Undressing in the changing room I felt like all eyes were on me. In Denmark we don’t have individual cubicles to hide in. I was out in the open in one large (women’s) changing room. I was convinced that everybody was looking at my scars and wondering what on earth had happened to me.

I knew that in reality people were too busy living their own lives, too lost in their own thoughts, to even look at other people in that changing room. But there’s a few. There’s a few who I caught staring at me. As soon as I looked at them, they looked away. Embarrassed at being spotted.

I told myself that I wasn’t bothered about other people seeing my scars. And as the months have passed that’s become closer to the truth. It’s taken time (and more plastic surgery) to improve how they look.

But when I was first back in the pool and back out ‘in public’ I think I was relieved to hide them away under cycling shorts as well as a swimsuit. It was just another way that I tried to force what had happened to me into the past.

There’s also the issue of the sensations when the scars and the surrounding skin are touched. I have areas that are totally numb – they still have no sensation as the relevant nerves have been cut. Some areas have some sensation, but it’s not normal and verges on unpleasant when they’re touched. Then there are also areas that are now hyper-sensitive. I know over time they’ll gradually settle down in different ways, but it takes yet more months and more likely years.

“They call it kintsugi. The pot is shattered, then carefully reassembled with a resin mixed with gold. It symbolizes how we must incorporate our wounds into who we are, rather than try to merely repair and forget them.”

David Wong

Kintsugi is the Japanese art of ‘golden joinery’. Think of a shattered bowl, broken into a multitude of pieces, that is then repaired with care, thoughtfulness, compassion, and sensitivity. It’s put back together (fixed) with a resin that is dusted or mixed with powdered gold, silver, or even platinum.

The philosophy of kintsugi is that the value of an object lies not in its beauty, but in its imperfections and its history. These should be celebrated, not hidden. Its new form is even more beautiful than the ‘perfect’ original.

It’s a wonderful metaphor – I am that bowl. Having been thrown up in the air and shattered into a million pieces as I hit the floor. My recovery has been the process of putting myself back together, with a lot of help from those around me. Every day I see glimpses of those golden repairs – my scars – when I look at my leg or at my abdomen.

THE MISSING TATTOO

I never realized that my abdomen was my favorite part of my body. Weird I know – I’ve heard other people talk about many different parts of the body that they’d class as their favorite, but never that one.

About 25 years ago, when I gave up on IVF and acknowledged that I wasn’t going to be able to have children of my own, I had a tattoo etched into my skin just below my navel. A ‘v’-shaped, abstract, branching design that was probably 12cm (4 or 5 inches) across and 5cm (2 inches) high.

It wasn’t particularly beautiful or refined – no surprise there as it was done by a skinhead with three and a half fingers on his right hand, in a little tattoo shop under some railway arches. There was a baseball bat behind the door and brass knuckles lying on the desk. I kid you not! But I loved that tattoo. It was a symbol for me that I was ready to look to the future after a challenging period in my life.

When they cut into my abdomen in that first operation, they opened up a wound that ran about 15 cm, so six inches, from my navel and down – right through the middle of my beloved tattoo. When they closed it up two days later they clipped it back together with vicious-looking metal clips. But the surgeons took the time to realign the two segments of the tattoo so at least it didn’t all look wonky!

I hated those metal clips. The skin around them always looked irritated. One area kept weeping a yellow fluid. And when the clips were removed the wound hadn’t healed as it should. Some areas were OK, but another part hung open. The nurse tried to tape it together. The tape fell off within an hour or two. It simply didn’t heal.

The hole grew. I ended up with what’s called a fistula – a hole into my abdomen that was three centimeters, over an inch, deep at its worst. It was sore. It continued to weep. It scared me to death that some other bacteria would get in through this little cave. It took months, and lots of trips to the GI wound clinic, to heal.

That little area took as long to close and seal over as the much larger wounds on my leg. And the nasty looking scar was made worse by a big dip, where the fistula had been, that looked horrible.

Our first little break away from home was four months after I came out of hospital. A few relaxing days away in the sunshine. An opportunity to get away from our real lives.

I remember arriving at the hotel and looking around at all of the women by the pool in their bikinis. I was devastated. It hit home that I was never going to physically look that good again.

It wasn’t just the scar down the center of my abdomen. From the front I looked relatively normal - slim waist and slim hips. But when I turned side on it was another story entirely. I had this weird pot belly that stuck out and it wasn’t just a little bit. I looked like I had half a basketball protruding from my stomach.

At first, when I came home from hospital, I’d assumed that it was related to all the fluid that they’d pumped into me in the ICU. I thought over time it would go away. It didn’t.

I became fixated on exercising my stomach muscles every day to try and flatten them out. But nothing changed. If anything, it got worse.

It got me down. Really down. Much worse than the deformities and lumps and bumps I had on my leg. It changed how I dressed. It meant that I wouldn’t wear anything that was too fitted. Nothing that showed off my belly anymore. I had to wear loose clothes – anything that hid that ugly protrusion.

It took me almost a year to work out what was going on. I came close to going to see our family doctor about it, but once again Google was my best friend. It seemed that when they’d closed up my abdomen they stitched the skin together, but they hadn’t stitched my abdominal muscles back together that they’d also cut through. So the central muscles just flopped – pushed out further by my guts and everything else in my abdomen.

Lying on my back on the floor, I could push the skin down and stick three fingers into that vertical space between my muscles. It felt like I was putting a hand into my insides. Well, I was basically doing just that.

Medically it’s called ‘diastasis recti’ and it literally means a split in the centre of those abdominal muscles. It affects some women after pregnancy and in cases like mine it also affects people after abdominal surgery when the muscle layer isn’t sewn back together.

I found out that I didn’t need to live with it. It needed to be repaired not purely for the sake of my vanity, but also because my back needed the support of those same muscles. That’s how Dr Lovely, my plastic surgeon, became part of my medical team.

Going through additional surgeries by choice wasn’t easy. The thought of someone cutting me open yet again filled me with equal measures of dread about the pain and infection risk. But it also gave me a rush of excitement at the possibility of being able to have my body look better, and also feel better about it too.

I was so focused on her repairing my abdominal muscles, and reducing the risk to my back, that I totally missed what the rest of the operation would entail. I knew she would open me up horizontally from hip to hip and go under the skin up to my ribs and then work her way back down stitching the muscles back together on multiple levels.

But I totally missed that they’d also do a tummy tuck. That means that they’d pull the loose skin downwards and cut away any excess before they sewed up that hip-to-hip incision. They’d cut around my navel and reposition it in that new taut skin.

When I woke up from the surgery I had never expected to be as sore. When I got out of bed I could only walk hunched over like a little old lady. A slow shuffle and a lot of praying that I wouldn’t sneeze any time soon.

The new wounds were covered by an elastic corset holding everything in place that I’d be wearing for the next three months. Multiple times the nurses came to open the corset and check that the wounds looked OK. I saw nothing amiss. Ecstatic that the basketball was gone for good.

But it was only the following morning when Dr Lovely came to see me and opened the corset again that finally the penny dropped. My tattoo was gone except for a tiny little line (just a few millimeters long) that now disappeared into the new wound that was so neatly sewn up.

But that wasn’t all … My gnarly 15cm scar from my navel downwards was entirely gone! It was as if it had never existed. They’d pulled the skin down so much that all traces of that scar had disappeared along with that excess skin.

One part of my history had been erased and replaced with a new story.

Though my abdomen was on the right path my left thigh still looked like a shark had taken a chunk out of it. It was lumpy and bumpy with three pieces sticking out – the worst, known affectionately (not) as Mount Fuji as it was a similar shape, stuck out at least 4cm (almost 2 inches).

Not only did it not look pretty, it was also sore, sensitive, and achy. The only way I could get relief was to continue wearing a compression bandage 24/7. The only time it came off was when it was replaced by the tight cycling shorts that I wore in the pool and for the short time it took for me to shower.

As soon as Dr Lovely saw my leg during my abdominal surgery, she was already focused on that being our next project. She was on a mission to work more of her magic.

A few months after my abdominal surgery I was back in the hospital to quietly have what I hoped was my seventh and final surgery of this NF journey.

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TIME TO LET GO

It’s natural after an experience like mine to want to hug things to your chest. Hang on tight to the things you know and that bring you some kind of comfort. There’s been so much thrown at you that you just need to feel safe with things around you, that you know and feel you can rely on.

But as time has passed, I’ve learned that sometimes you have to let things go that no longer serve you. Let them be part of your past. It’s time to move on.

As I’ve said, before my left leg was ‘fixed’, it was lumpy, bumpy and needed 24/7 support to hold it together and minimize the aching and weird sensations. As a result, I’d swum either in a swimsuit with legs (think of a less compressed version of the suits the female competitive swimmers wear) or I’d paired cycling shorts with a swimsuit over the top. Neither gives me the physique of those Olympic swimmers, but they did the job.

I was so acclimatized to swimming in shorts. And after swimming outdoors over the summer, I had an interesting two-tone tan – with the brownest knees and the whitest thighs. Not particularly fetching or flattering. Even after the wounds from the final plastic surgery to tidy up my leg had healed, I was still swimming in my shorts. They felt safe. But after a few weeks I knew they had to go. There was no reason to continue wearing them.

It was one thing to focus on my recovery or getting better, but one of the scariest things I have encountered in this journey is simply living. It terrified me that people expected me to now embrace life again. I still didn’t feel ready to stop hiding behind ‘being sick’ and accept that I no longer had an excuse to avoid living. Somehow letting those shorts go was a message to the universe that I was indeed ready to live again.

Finally the day came – I knew I had to push myself. If the shorts came home with me from the pool then they’d be back on the next time I went. It was time. The shorts were ceremonially dropped in the rubbish bin in the changing room. I said a fond farewell and thanked them for their service. I’d love to say that I didn’t think that I’d miss them one little bit, but if I’m truthful at the time I felt as if somebody had stolen my favorite comfort blanket.

The next time I went to the pool it was my first swim since 22^nd December 2022 in just a normal swimsuit – more than 18 months. I had meant to go three days before but I kept avoiding it. Finding excuses. When I got there, I felt naked and vulnerable. It wasn’t as if people hadn’t seen my scars in the changing rooms and showers. But this was different. I was going out ‘in public’.

I slogged my way up and down the pool. Hyper-aware of the sensation of the water on my scarred leg – it felt strange having the water directly on my skin. Not unpleasant, but not particularly nice either. Even the scars on my abdomen seemed to tingle more than they had previously when they’d been covered by both my shorts and swimsuit. All the time I was thinking about people looking at me and all those scars.

As I finished my swim a woman in her twenties and her mother had just climbed the ladder out of the pool before me. Nobody usually talks to anyone that they don’t know at our pool. Most people even avoid eye contact. If you’re lucky, maybe you’ll manage to get a smile from one of the lifeguards and a “have a nice day”. But today was different. It was one of those (special) coincidences when the universe decides to help you in a time of need.

The young woman turned to me as I got out. “You’re such a great swimmer,” she said. I looked at her, taken aback. Not only does nobody normally speak to you, but they certainly don’t say anything like that. I didn’t know what to say. But I managed to blurt out my thanks and told her how much I loved to swim.

We walked over towards the changing rooms together. “How frequently do you come to the pool,” she asked. “I guess you do other sport too – what else do you do?” She gestured at my body. “You must do a lot as you look so amazingly fit.”

I couldn’t believe my ears. I was totally blown away. Tears pooled in my eyes. Her words meant so much to me. What were the chances of someone saying something like that to me on a day when I felt so utterly vulnerable? A day that felt momentous for me – a landmark in my recovery.

As I walked out of the pool into the sunshine I let tears run down my face. But I couldn’t help but smile as I took another little step forward in my journey back to life.

I’ll never be ashamed of my scars. I wouldn’t be the same person without them. I carry them with me as part of my story – they’re a map in their own way. I’d even say that I’m proud of them. They’re physical evidence of the battles that I’ve fought, and they prove that I won.

Over time they’ll fade, but they’ll never go away. And I don’t want them to. They’ll always be there to remind me that what happened was real and not a dream. They’ll remind me to live life to the full. Make the most of every day. And to be kind to myself.

WHAT IS ‘BETTER’?

Sometimes I ask myself: am I better? Is there any such thing as truly recovered? These questions run around in my head on a regular basis.

I feel as if I’ve had to ‘get better’ multiple times over the past two years. I’ve had to rebuild myself each time – each one giving me unique challenges.

First, there was my back operation and recovering from having four big titanium screws and a couple of metal plates inserted in my back.

Then I got NF and had the double challenge of recovering both mentally and physically.

Then there was the first of the follow-up operations to repair my abdominal muscles – some additional (planned) pain to take another significant step forwards. Even if it felt as if it took six months afterwards for me to be able to stand up straight again!

And finally, one more time – the recovery from the work done on my leg. I ended up with some extra inches of scars, but darn they’re neat. And the recovery was the quickest and easiest of the lot.

My recovery each time has never followed a straight line, but rather a twisting, bumpy path. There have been lots of ups and downs – little setbacks that have required me to work even harder.

But what does it mean to be ‘recovered’? Perhaps it means to return to a normal state of body and/or mind? Then again, I’d challenge you to define ‘normal’.

Perhaps it means becoming completely well again after an illness or injury. But what is ‘completely’? How do you know that you’ve reached that point? Do I say to people that I’m in recovery, that I’m recovering, or that I’ve recovered? Am I still getting better? But better than what? Am I ever going to be better?

In many ways I no longer care. I don’t mean that flippantly. I know that I’m permanently changed. Both physically and mentally, for better or worse. For me I think that recovery is based on achieving a state of balance between old and new. Everything I was before is still there in some form. It’s not gone. It’s not disappeared. It’s just a question of how I integrate the two together to become one again.

I’m still working on it, but I know that in the end I’ll be even better than before.

REFERENCES

1. Physical activity is associated with a lower risk of contracting and dying in infection and sepsis: a Swedish population-based cohort study – Critical Care 2024 – Karl Stattin et al.

2. Effects of physical activity on the severity of illness and mortality in COVID-19 patients: A systematic review and meta-analysis – Frontiers in Physiology, Exercise Physiology 2022 – Nuttawut Sittichai et al.

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If this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.

Thank you!

If you missed any previous chapters from the book then you can find them easily on my website – click HERE and it will take you directly to the webpage dedicated to the book where you can read or listen to any previous chapters that you might have missed.

Every THURSDAY I’ll continue to share my ‘book in parts’ - Hold My Hand: A Journey Back to Life - chapter by chapter.

As always - thank you for reading or listening!

CONTENT / TRIGGER WARNING – this chapter covers topics that some people may find difficult to read, including frank stories about mental health and suicidal ideation. Feel free to skip on to Chapter 18 if those topics aren’t for you.

“To other people, it sometimes seems like nothing at all.

You are walking around with your head on fire and no one can see the flames.”

Matt Haig, Reasons to Stay Alive

FAKING IT

“I’m OK, right?” “I’m OK.” How often have I said that to myself or to other people since I got sick? Too many times. Recovering from a life-changing traumatic event is not a short process. It takes time. It can’t be rushed. You can’t make it happen. But I was desperate to force what happened to me into being a thing of the past. Something that was over. Finished. I thought I could make myself OK if I said it over and over and over again.

As the months passed, in that first year of my recovery, I said I was “OK” a million times. “Yes, it happened, but I’m OK now.” Sometimes I actually believed it. I felt so much better some days that I thought I must be recovered. Other times I was covering up yet another bad day. Initially each month I felt a little better than the last.

It was only as time passed that I had a point of comparison and realized I wasn’t OK, not better, nor recovered. Things started to go awry. The balance gradually shifted until there were more bad days than good. The fake “I’m OK.” became the norm. I no longer felt better than the week or the month before. I was actively trying to convince everyone that I was through this journey. That I was OK. But I was deluding myself.

When I was in hospital, and in the months afterwards while my physical scars were still healing, it was obvious that I wasn’t OK whatever answer I gave when asked. Those around me could see the signs. People knew I was faking it. Just like when I was sitting there in hospital, incredibly ill – with no recognition of how ill I actually was – laughing and joking, as if I was half drunk. I was still telling everyone I was OK, when I could have died within a matter of hours.

There’s also another element to it when it comes to your nearest and dearest – I’ll talk more about them in a later chapter. Your friends and family are part of your journey whether they (or you) like it or not. You can’t detach yourself from them.

You can’t help but want to do your best to try and protect them. So, you keep saying to them “I’m OK”. Simply because you can’t bear to inflict more pain on them, or to have them worry even more than they do already. You become focused on being strong for others yet crucify yourself in the process.

Friends started to assume that I was OK because I looked OK on the outside. So, when I said “I’m OK”, they believed me. Well maybe they didn’t really believe me, but perhaps they didn’t want to think about the fact that maybe I wasn’t OK. They didn’t want to press and find out the real answer. They didn’t know how to deal with that. They just wanted to believe me. It’s a natural reaction. I certainly don’t blame anyone.

Once I’d told people that I was ‘OK’ I felt that I couldn’t backtrack and then say I wasn’t. On top of that, I have never been able to bear people feeling sorry for me. Even a hint of sympathy makes me unreasonably annoyed. I didn’t want to see their sad faces. I didn’t want their pity. I couldn’t bear it. As a result, I hid what was going all the more.

I wasn’t OK. The more I tried to force everything into my past, the more I suppressed how I was really feeling and the more the pressure built. It wasn’t just related to getting so sick. There was also baggage from the past – previous incidents, experiences, and emotions, that I’d not dealt with.

The result was that I was carrying a huge burden. Each suppressed, unprocessed psychological event was like a stone dropped into a rucksack on my back - it was getting harder and harder to carry, and as my knees started to tremble from lifting such a heavy weight, it became impossible to keep faking it.

The wounds on my body had healed, but the psychological wounds were still bleeding profusely in my mind. Faking it, trying to hide from my own thoughts, and pushing down the truth allowed those thoughts to fester and multiply. Invading every part of my psyche. Like a volcano building up to an eruption. Biding its time. Just waiting to explode.

THE DARKNESS

Over the space of six months – which included getting past the first anniversary of my getting sick in the middle – the pressure gradually ramped up in my head. My mind swirling like thick, black, noxious smoke. I couldn’t think. My short-term memory was awful.

I couldn’t concentrate on anything – I was back to not being able to read and enjoy a good book. I couldn’t watch TV. I scrolled incessantly on my phone – it hardly left my hand – not even seeing what I was looking at. The more I tried to distract myself the more I failed.

I couldn’t relax – I felt permanently on edge. I was sleeping badly – lying awake for hours in the middle of the night. Time seemed to slow down. Every minute lasted an hour.

Nothing could calm my mind. I had no chance of focusing on anything. My world felt dark and overwhelming. I couldn’t appreciate anything good – everything seemed meaningless.

There was an almost imperceptible increase in the pressure – day after day after day. I was hiding from myself – self-medicating with alcohol just to make the thoughts in my head go away for a short time – then mentally beating myself up afterwards.

I was utterly desperate to convince myself and others that I was healed and ‘back to my old self’.

And yet I couldn’t see any future and certainly not a future that I wanted to be part of… I kept thinking how much easier it would have been if I’d died. Everyone would have gotten over it by now and moved on, right? I wouldn’t have had to go through this struggle. It was all simply too hard.

At the same time, I continued to panic about what other damage the infection might have done to my body that I wasn’t even aware of yet. I’d expected to live to a ripe old age in my 90’s, but now I knew that it was possible that I might not even make 60. I’d read a scientific paper about NF that found the median survival for NF suffers was just ten years post-infection.

Even though as a scientist I understood just how dubious that number really was likely to be, confounded by a host of other factors, it still haunted me. A median is just the number in the middle of a wide range which includes numbers a lot smaller, but and also numbers a hell of a lot bigger. Still the grim reaper was sat on my shoulder. I couldn’t get it out of my mind.

The clock was ticking, and that sound was deafening in my head. I couldn’t see the point. I thought I might as well end my life now if that was all I had left. Why stick around any longer?

This wasn’t the first time that I’ve experienced this kind of depression, but it was the worst (so far). I’ve been engulfed by it a number of times in the past and survived it each time. I say survived as the wounds never really healed – I just found a way to cope each time and popped another stone in that rucksack I was carrying around on my back. The wounds continued to accumulate over the years.

My memory of every instance includes what I call ‘the darkness’ – a feeling that everything is dark and threatening. I can see no rays of light, even on the sunniest day. It has nightmarish quality that has haunted my dreams. Always there in the back of my mind. Ready to run riot without warning and engulf me.

As a child I would lie in bed at night and listen to my parents’ fight. They probably argued in the daylight too, but I only remember it happening in the dark. When I should have felt safe in bed, I was stretching to hear what was happening. Hear if they were going to make up. Or if my mother was going to leave – taking me and my carefully pre-packed collection of my most loved cuddy toys with me. Even as an atheist I used to pray from the moment I came home from school that tonight they wouldn’t fight again.

In my late teens and early 20’s I felt the need to take control of my world as everything in my life seemed so uncertain and I couldn’t see where my life was going. But that need for control went into overdrive and led to a battle with anorexia which accelerated over a five-year period. At my worst I was skeletal – able to take tiny UK size 8 jeans on and off without undoing the zip or buttons. I was banned from my favorite aerobics classes if I didn’t have a doctor’s note to say I was healthy.

During that time I plotted how to end my life. Working out when I’d be alone in the house. Thinking about the best way to do it. I made plans. I had dates. The only thing that stopped me was the thought of my parents finding me.

I went for numerous doctor’s visits and a host of tests – always allowing people to think that there was something wrong with me physically, creating the weight loss, rather than admit the illness was in my head.

Finally, one evening (on a dark winter night) our family doctor sat me down. “You have a choice,” he said. “You can decide to eat and live, or you can keep not eating and die.” I remember sitting in his office so clearly. There was no offer of therapy. No offer of any drugs. It was just black and white: live or die. You decide.

Something changed that night – I went home and ate like my life depended on it. It was an uphill struggle. There were a lot more downs in the subsequent years than I probably even remember. I had the support of my parents, but no other help. Not even anyone to talk to who understood or who had been through something similar. It was up to me.

For years I told people that anorexia was like alcoholism – it never left you. (Authors Note. Something I no longer believe.) It was just waiting in the wings to step out and take center stage again at a suitably stressful moment. But somehow, I managed to push it all down and find a way to survive. I was hanging on by my fingernails most days. I didn’t process what I’d gone though. More stones went in that rucksack.

Then I moved to Denmark in my mid-30s. Walking out on a husband and an 11-year marriage literally overnight. In the space of three weeks I had made the decision to move, packed my stuff, and relocated to a rented apartment in Copenhagen. Six months later my world fell apart. I would find myself sobbing for hours at my desk in the office. Hoping that nobody would walk by and see me through the glass wall.

This time I did ask for medical help and took anti-depressant medication for a year. A year of humdrum. Of missing out on all the highs and lows. Just feeling nothing. But it gave me a chance to recover. Time to work out how to stand on my own two feet again.

So, I knew the darkness. It wasn’t foreign to me.

Almost 14 months after I’d been released from hospital, I went in for plastic surgery to repair my stomach muscles. When they closed the large wound in my abdomen, they closed up what they needed to, but they didn’t sew my stomach muscles back together – more on that later.

But not only did it look unsightly, but it was also a physical issue for my back. After my surgery to fuse together two lumbar vertebrae my back needed all the help it could get from my core, including those stomach muscles which right now were doing nothing. After a year without the support it needed my back was already starting to grumble (again) – it was time to act.

Once I knew I needed the surgery to stitch my stomach muscles back together I was lucky enough to be able to pick where to have that done. I actively chose a solution whereby I didn’t have to return to one of the two hospitals where I’d been treated for NF. I could go somewhere different.

I hand-picked my plastic surgeon, ensuring I picked someone with broad experience. I’ll forever be grateful that I found Dr Lovely. I had the opportunity to meet her and get to know her. And I knew immediately that I could trust her wholeheartedly. She was on my side and genuinely wanted to help me.

The surgery went smoothly. Everything went exactly to plan. Physically it was a huge success. I could finally look at my stomach in a mirror again rather than looking anywhere else.

I should have been ecstatic. And yet the downward mental spiral that has already begun accelerated. Really accelerated. Things got even darker.

I saw no future. No hope. No joy. No nothing. I couldn’t see the point of living the rest of my life. I was empty and numb.

As the darkness took over every corner of my mind, I started to think more and more about the morphine pills we had in our safe at home. Spare pills from my various operations that I hadn’t needed, but that I’d saved ‘just in case’.

I tried to calculate if there was enough to end my misery. I looked up how much I needed to make everything go away for good. To let me find oblivion forever.

A month after that surgery I did nothing but sit on the sofa and cry for an entire weekend. I could see my pain reflected in Kim’s eyes. His overwhelming worry and concern that there was something desperately wrong. His bravery to ask a question that nobody ever wants to ask changed everything.

“Have you thought about killing yourself?” he asked. I remember just looking at him. Trying to concoct yet another fake answer in my head. Another lie that I was OK.

Nobody, and I mean nobody, outside of our house knew that I was as terribly depressed as I was – maybe they saw an odd bad day or two, but that was all. Not Mum. Not even my closest friends. Nobody knew of the darkness that had gradually engulfed me over the previous six months.

“Yes,” I said.

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GIVING YOURSELF PERMISSION

The need to be ‘better’ can be overwhelming. But sometimes you need to give yourself permission to not be better. You need to challenge yourself and ask: so what if I’m not better? Does it actually matter? What does it really mean? What in reality would the consequences be if I just let it go?

Recognizing you need help again is hard. It felt like a huge step in the wrong direction. It took a ton of courage to admit to myself that I couldn’t process this alone. I needed professional help once more. I just wanted everything to be in the past. Part of yesterday and not tomorrow.

Kim knew things were bad, so the weekend when he’d asked ‘that’ question he wasn’t letting me go until I’d taken action, and he pushed me to get the help I so obviously needed. I couldn’t make the decision for myself at that point – I was too far gone.

It was at his insistence that I headed to my computer and sent a message to Violet – the psychologist that I’d seen previously. Hoping that I could go back and see her again. Hoping even harder that she had the time to see me quickly. The whirlpool of darkness in my head was terrifying. Thankfully she fitted me in within a couple of days.

Violet was phenomenal, and every session brought some kind of light bulb moment or enlightenment. Every time I learned something. I could often be spotted, after a session, loitering outside her building tapping notes into my phone. I wanted to make sure that I remembered all the good things she’d taught me and the things I’d learned about myself while talking to her.

She wasn’t surprised to see me again. She knew that we’d worked through the initial trauma in our previous sessions. But she could see that we weren’t done. We’d just dealt with one fire that had been burning. Now the fires had multiplied, fanned by the breeze of me faking “I’m OK” for too long.

She was well aware that I’d been through so much in the recent past – Dad’s death, my sickness, and leaving my ‘safe’ corporate job. In her mind it wasn’t a question of if I would fall apart, but when.

That initial session was hard, but it was also a huge relief. A liberation gained by giving myself permission to not be OK again. To admit everything that had been going on in my head. A torrent of emotion flooded out.

We process trauma like chapters – in bite-size pieces. We simply can’t do it all at once as it would totally overwhelm us. Our minds spiral around and around. Revisiting events and the emotions attached to them. Each time we visit them a little more of the associated emotion dissipates as we continue processing. I’m not a psychologist, so this is my layman’s interpretation.

It’s a step-by-step process that can’t be rushed and can’t be forced. I had to give myself permission to go through it. To let it happen.

It was (and still is) up to me to give myself permission – to have a down day, to not yet feel recovered, to just be myself. But it’s incredibly hard to allow yourself to be that vulnerable. To stop relying on others to give you that permission.

Violet helped me to understand that it’s only you who can give you permission. Nobody else. The sense of freedom that realization gave me was huge. I came out of the initial session with Violet feeling like so many things had fallen into place. That night I slept almost ten hours straight. It was as if something had been uncorked in my brain that then allowed my body to relax.

After a couple of sessions, we went away on vacation for a week. Kim and I were so looking forward to the break – we’d booked it months before and had counted down the weeks and the days until we would leave. Time in the sunshine to relax, walk, swim and enjoy.

I was feeling like I was doing better, and the darkness had started receding. But out of the blue, almost as soon as we arrived at the hotel, I was hit by overwhelming misery and grief. I have no idea where it came from. There was no obvious trigger. I couldn’t put words to it. I couldn’t explain it.

Kim only had to look at me with concern and I was sobbing for the third time that day. I scared waiters as I sat with tears pouring down my face all through dinner. Another day I avoided dinner all together as I couldn’t bear to see the sympathetic faces of the waiters. I was embarrassed.

It was as if a huge bubble of misery had worked its way to the surface of the volcano and burst. Once again I couldn’t control it. It wasn’t the week we’d hoped for.

I came back from that trip wondering what had hit me. Unable to work out what had happened, or why for that matter. I went to see Violet just a few days after our return. And guess what – I walked into her office and fell apart all over again.

That session was cathartic. I hesitate to say life-changing, but it was. It was almost as if some kind of huge, ugly, blocked drain had been released in my head letting out the negative emotions that I’d carried around from a succession of different traumatic events throughout my life. It was positively spiritual. Even an enlightenment.

At the heart of everything the blockage in that drain came from a deep-rooted fear of being alone. And from not seeing myself as valuable enough for people to want to love me or care about me. Suddenly everything started to make sense.

I walked out of her office a different person. All those negative emotions that I’d pushed down, hidden from those around me, and doggedly continued to carry around for decades were released. The trauma of my sickness had tipped me over the edge. Pushed me past the point of what I could carry alone. It had to come out.

“The most powerful stories may be the ones we tell ourselves”, says Brené Brown. “But beware—they’re usually fiction.”

Like every other human I can’t help but try to rationalize and explain things. Trying to find reasons. Finding a why. Something to explain whatever it is that has happened to me or in my life. Trying to find answers. Making up a story if needs be. Instead of letting whatever it is go and just accepting what’s happened.

I’ve been a master at coming up with good logical reasons for things that have happened even though those reasons are utter rubbish! I try to ‘explain it away’ – convinced that if I can do that then whatever it is can’t hurt me. Convincing myself that it won’t fester. Trying to assure myself it’s happened due to some other reason and not because of something I’ve done.

We all tell ourselves stories. It’s basic human nature. If we don’t have the background or we’re not given an explanation, then we’ll make one up. But we need to be aware that we are just making it up. It’s most likely a work of fiction.

LEARNING TO FLOAT

I don’t have all the answers – nobody does. But with Violet’s help I’m learning to accept that I don’t need them. There’s plenty I can do myself to soothe my soul. To relieve stress. To spend more time in the here and now.

Maybe you’ve wondered why I call my psychologist Violet. You don’t need to make up a story – here’s the explanation.

Some of my sessions with Violet have included meditative breathing. Especially when I’ve walked in almost combusting with anxiety and fear – shoulders up around my ears from the physical stress in my body – words falling over each other as I try and express the riot of chaotic thoughts flying around in my head.

Just reconnecting to my breath. Sitting and being aware of breathing: in – out – in – out – in – out. Just a couple of minutes and I can start to calm my mind and my body.

We’ve done a few of these sessions, but a couple were especially memorable. The first was in that session after I’d imploded on vacation. I don’t remember the exact content of the meditation, but I know it involved colors – I can’t tell you if Violet told me to think of a color or whether it just happened. She described a flame for me to focus on. In my mind that flame was such a vivid purple. The most beautiful color.

After we’d finished the session Violet asked about my experience, and I couldn’t help but tell her about this amazing color that had appeared around that flame and enveloped me.

I remember that she smiled – she explained that in her version of the world purple is the color of transformation. That gave me such a strong hope that I was indeed moving forwards in terms of processing everything that has happened to me.

‘Purple’ seemed like a weird name to give her, so I picked Violet instead.

The other memorable session was a few weeks later. Once again I arrived all of a jabber. Emotion spilling out of my body totally unexpectedly. Triggered, I think, by a small change a couple of days before when I had swum for the first time in a swimsuit without cycling shorts – showing my scars on my leg to the world for the first time. See there I go, rationalizing again instead of just accepting it happened!

We did a mediation/breathing exercise and Violet led me down into the deep blue something – water and yet not water as there was no sense of the possibility of drowning. Just this beautiful blue that got deeper and deeper. As we went deeper the calmer my mind and body became. The emotion ebbing away. I felt totally serene as I watched the rays of sunshine cutting through the water above me.

Blissful.

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Like most people in my situation, I have struggled. Struggled to get better. Struggled to keep up a front so that people think I’m better. Struggled to not inflict more pain on loved ones around me. Struggled to try and force things to happen faster. Struggled with the overwhelming desire to put this all behind me. Struggled to meet what I thought others expected of me.

I’ve struggled to control every element of the world around me. Struggled to rationalize and explain away what has happened to me. Struggled to avoid looking weak or incapable. Struggled against the obstacles that lay in my path. Struggled to acknowledge and appreciate the progress and the good things. Struggled simply to be alive.

But now I’m aware that the struggling has to stop. It takes a toll. A huge toll. It drags me down into a negative whirlpool that drowns my mind. The more I have struggled to make my recovery happen faster the more my progress has actually slowed.

I must be brave enough to let things go. To accept what has happened without needing any explanation. To let things be as they will be. To stop fighting. To find happiness in the moments where I’m trying the least. And to refocus on being my best self – in this very moment. Not yesterday. Not tomorrow. Right now.

Recently I heard Rowdy Gaines (American Olympic swimmer and gold medalist - 1984 LA) being interviewed on the Rich Roll podcast. Water safety is so close to his heart. He talked about supporting efforts not only to teach kids to swim, but also to teach little ones to simply float on their backs to save them from drowning.

The image of that small child stuck in my mind. It’s the perfect metaphor for a technique that so many adults – including me – need to learn. A strategy to save our own mental health. To save our minds from drowning. To stop struggling against life.

Instead, we need to learn how to float. Imagine laying on your back, arms wide, legs relaxed, staring up at the blue sky. Serene. Safe. Still. Calm. Peaceful. Listening to your breathing. Letting things flow.

MOVING FORWARD

I’m convinced that I’m moving in the right direction, but my mental recovery is still very much a work in progress. I can’t tell you that I’m not, at times, still fighting those fires in my head – I am. Some days I can still be anxious when it comes to finding out how to live again. And I can still find it hard to let go of what has happened to me.

I’ve worked with Violet to improve my firefighting skills. The fires are smaller and occasionally just smoldering a little these days. They’re easier to extinguish. Less likely to explode into roaring forest fires devouring everything in their path – out of control.

Violet always tells me that we never go backwards when processing traumatic events even if it feels like it. I believe she’s right. However, when you’re in the midst of a fire it can be hard not to feel that you’ve regressed.

Acceptance is vital. To allow what will be to be. To allow those emotions to wash through you. I say ‘through’ on purpose as saying ‘wash over’ feels wrong – they’re part of you, not something outside of you. They need to pass through your existence. Then those emotions are free to come and to go. Remember, no feeling lasts forever.

I can now see a future. A future that I very much want to be a part of …

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If this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.

Thank you!

If you missed any previous chapters from the book then you can find them easily on my website – click HERE and it will take you directly to the webpage dedicated to the book where you can read or listen to any previous chapters that you might have missed.

Every THURSDAY I’ll continue to share my ‘book in parts’ - Hold My Hand: A Journey Back to Life - chapter by chapter.

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As always - thank you for reading or listening!

“For ten years I was a journalist, mostly on The Independent, when it existed in paper form. I definitely considered myself a journalist, so much so that when I left the newspaper in 2001, I didn’t know who I was without that title; the routine, the deadlines, the camaraderie, the bleak jokes, the overwhelmed liver. My whole self was tied up with my journalistic identity and, oddly untethered without it, I had to have therapy (this isn’t a joke) and reconsider myself.

Basically, I had to detach who I was gently from what I did.”

, Substack 22 Jul 2024

WORK

When I got sick the last thing on my mind was work. That was partly because I was already on medical leave as a result of my back surgery a few months before. Plus, it was Christmas, so everyone was off. But even without those two factors I wouldn’t have been thinking about was my job. I was too busy trying to stay alive.

Once I was more awake in hospital of course we recognized that we needed to let my employer know that I wasn’t going to be back at work, and returning to my old role, in early January as planned. But what should we say? Who should we contact?

I’d heard nothing, not a text, email, or call, from my own manager since I departed for my back surgery. Nothing. No flowers. No good wishes. Just silence. It’s an interesting comparison when you consider that Kim’s manager sent me flowers and kind wishes when I came home after that back surgery. Sent me flowers again when we returned home after Dad’s funeral. And sent me flowers again when I came out of hospital after the NF infection. My own boss was completely silent.

We’d messaged a couple of people to let them know I was in hospital, including [COLLEAGUE #1] who was covering my role while I was on leave. But everything was so confused. We had no idea how to explain what had happened.

Kim helped me write an email to my Human Resources (HR) contact, who I knew fairly well, while I was still in hospital. We kept it simple and stuck with the facts that we knew and understood at that time. I can only imagine the impact when they read that email.

From: Gatehouse, Jacqui <work email>

Sent: Monday, January 2, 2023 12:05 PM

To: [HR #1]

Cc: Jacqui Gatehouse <private email>

Subject: In hospital with sepsis.

Hi [HR #1] - hope you had a lovely Christmas and new year.

I wanted to let you know that I was admitted to hospital on Dec 23rd and spent five days in ICU on a ventilator. I have had a good go at dying twice in the past ten days but have been so lucky to have an amazing medical team. I have had three operations on the area of my left leg and so need more operations with one tomorrow and then skin grafts too. Best guess is I will be in hospital another two weeks and then the doctors expect two to three months rehab… …I have had 300+ blood tests and liters of i.v. penicillin so far.

[COLLEAGUE #1] and [EXEC #1] are aware but not sure who else as I know [EXEC #1] only found out a couple of days ago. Please can you advise [MY BOSS] and [HR #2]? I’m fine they know the info above.

So I won’t be back on 9th January and don’t know right now when I will. But I will update once I am out of hospital.

What have I done wrong to have to go through the past four months with the back surgery, my Dad dying and now this?!

I won’t check this email so pls reply to my private email that I have on cc.

Take care. JG

BUSY BUSY BUSY

I love working. Well, that’s what I’d always told myself before I got sick. I’d immersed myself in work to the detriment of everything else in my life. It was easy and absorbing to be ‘on’ all the time – checking email, taking calls out of hours, travelling like a maniac, and generally running myself into the ground.

If I was busy, busy, busy then I didn’t have to think of some of the less pleasant things that tended to slosh around on my head. Sound familiar? I know I wasn’t unusual.

I was working as Senior Vice President (SVP) of Commercial, leading a global sales team, in a company of 40,000 people when in September 2022 I departed on my medical leave to get my back fixed. I knew I’d likely be off work for three to four months while I recovered. Well, you already know how that worked out.

I’ve had what I’d call ‘corporate’ jobs since I was 15 years old when I started working Saturdays in a small pharmacy that was part of a nationwide chain. When I say ‘corporate’ I mean working in a company owned and run by other people. Companies I’ve worked for have ranged from as small as 120 people to many thousands of people spread around the world.

I’ve always worked within defined, structured, company frameworks. Most of my jobs in recent years have related to sales, account management and business development. Each one has had a clear job description – requiring me to do specific tasks to achieve particular (usually financially focused) goals.

I worked hard. Perhaps too hard. But I always wanted to achieve a little more. Make a bit more money. Show I was of value to the company so that I felt I had some job security. Over the years the roles I took on got bigger. The teams that I managed expanded. And of course, the sales targets had more and more zeros at the end until they went into the billions.

Every day was fully booked. Back-to-back online meetings. I was tied to my desk for hours on end. No gap to even go to the bathroom or empty the dishwasher. Let alone actually do any work. Real work had to be done in early mornings or late evenings when meetings were finally finished.

I was lucky that I worked from home when I wasn’t travelling, but frequently Kim had to deliver my dinner to my desk as I didn’t even have time to stop and eat. Was it a surprise that I had almost permanent indigestion?

Evenings, what was left of them, were spent crashed out on the sofa. Trying to calm my fried brain. Staring blankly at the TV. Still watching my phone for new emails from the US.

Weekends were protected like ‘my precious’. I was fearful of doing anything in case it meant I had less time to recover from the working week. I was so desperate to try and recharge my sapped batteries.

When things were extra busy then Saturday and Sunday became working days too. So by the time Monday morning rolled around again, I never actually felt refreshed, and I dragged myself out of bed to start yet another week of stress.

I was also travelling around the world. Often flying to the US at least once if not twice a month. Coming home and trying to deal with the jetlag before I had to leave again. My suitcase was never empty and rarely, if ever, went back in the cupboard. I could pack and leave in a matter of minutes.

Even the travel itself was stressful as for much of my career the companies I worked for wouldn’t pay for business class travel. So, I was flying across the Atlantic in a cramped economy class seat – trying to work, trying to rest, trying to ignore all those people stuffed in around me.

I was used to feeling exhausted all the time.

Travel declined with the COVID pandemic, which was a relief for about five minutes until the number of online meetings, sometimes lasting for hours on end, exploded.

The higher I went the less vacation I took. Even when I took vacation days they were never truly time off. I was always checking my phone. Taking calls. Work problems swirling in my head.

I wore my corporate persona like a suit of armor – afraid someone might see behind the façade. I saw stress and busy-ness as a of badge of honor. It had crept up on me over the years to become my norm. I must be doing the right things as I’m busy all the time – right?

I kept going, afraid to stop and anxious to not even think about it too much. I was driven to keep going. Driven to try and feel safe, secure, valued, included, appreciated, and even important.

My values shifted and my priorities became confused. I worked for my family’s benefit, so they were fine (in my mind) that I used more time on work and always prioritized that instead of spending time with them. I was a persistent workaholic who had lost all sense of reality. There was zero joy in my life.

Consciously or unconsciously, I can see now that much of my working life was motivated by fear. Fear of not being good enough. Fear of being judged. Fear of being fired. Fear of being found out as the imposter I believed I was. Fear of not earning enough or even having no income at all. Fear of losing the roof over my head. Fear of having to ask for help.

I wasn’t driven by ambition. Nor the desire for promotion. As I got increasingly senior roles and moved higher in the organization the bigger my salary became. Our lifestyle and expectations adjusted to that new cash with expensive holidays and nice things. It just meant that I had even more to lose. And the fear increased exponentially.

My identity became defined by my job. Without it I felt like I would be nothing. That I’d disappear. I wasn’t a wife. I wasn’t Jacqui. I wasn’t even a woman. I was SVP. Though I was still passionate about ‘making a sale’ I was now so distant from that, as I’d moved higher up the food chain, that I very rarely got to experience that excitement anymore.

But the cracks were starting to show. I was now reporting to the Chief Commercial Officer, one step down from the CEO. He was talking to all those that reported to him, starting to look for his successor as he would retire in a couple of years. I remember the utter consternation on his face when I told him point blank that I wasn’t interested in his role. I wasn’t interested in further promotion, not for anything.

Even before my planned medical leave I knew that the clock was ticking. I was rapidly running out of patience with corporate politics. Tired of dealing with people that I couldn’t respect. Sick of having to tow the line when I didn’t agree with whatever company policy was being implemented.

I’d had enough of travelling and being away from home. Missing out on time with my family and friends. And I hated the long working hours that I couldn’t control. There was never any time for me.

I was getting ill from the stress of trying to ignore all those things every single day.

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UPHILL STRUGGLES

As I mentioned before I remember that a doctor came to see me just before I left the hospital. He explained what I was allowed to do and what I wasn’t allowed to do to minimize the risk of rupturing the stitches in my leg.

I asked him how long it would be before I could go back to work. “Oh maybe in about a week,” he said. I have no idea who this guy was, but that was the most unrealistic advice I’ve ever received. “And don’t plan any travel for a couple of weeks.”

Even in my discombobulated state I knew this was absolute garbage. I mean TOTAL garbage. It wasn’t as if I’d just happened to have a single surgery. His answers were so ridiculously out of whack and took no account of what I had been through physically, what I still had to go through, and of course how I was affected mentally.

I didn’t question him, nor did I push back. I just nodded and knew with certainty that he was utterly wrong. Whoever he was…

It’s not like the flu where you know you’ll be back at your desk in a week or two. It took over three months just for the wounds on my stomach and leg to heal. The infection had stressed my body so much that it had a hard time healing itself.

Not only was I not well enough to go back to work – my recovery was a full-time job. There were weekly or twice weekly visits to the clinics at the hospital to have my wounds checked and redressed. Plus, a multitude of other medical appointments to follow up on the aftereffects of the infection. Tests to ensure my heart was functioning properly. Scans to look for the source of the infection. Yet more scans to check the results of those scans and try to work out what was healing or not healing.

Attending all those hospital appointments, following up when there was action missing, and managing it all, took up all of my time and left no space to even consider working. Even if I had had the energy.

GOING BACK?

I had no idea when I’d be ready to return to work. How long is a piece of string would have been easier to answer. My employer threw in the towel, not long after I made it out of hospital, and because of ‘customer pressure’ they replaced me permanently in my previous role.

It wasn’t a big surprise when I’d already been out for four months. I didn’t blame them. They were running a business after all. I was still employed. And miracle of miracles, after all this time they were still paying my salary. But their decision left me drowning in a sea of unknowns.

They remained in touch. They’d repeatedly made all the right noises. “We want you back.” “You can start back part-time.” “We’ll find projects for you.” But what did that all mean? Where would I end up? I was at such a senior level by this stage in my career that their options would be limited. Yet I was naïve enough to trust them.

By the time my physical wounds had healed, three months on, I was feeling like I was ready to start easing myself back into work.

I wanted to go back to an environment that I understood. A corporate structure that I recognized. People that I knew and that knew me – a sense of community. I needed stability and predictability. I wanted to be distracted – to think about something other than having been sick and what had happened to me.

But it wasn’t going to happen. The operational role they finally (weeks later) offered didn’t work for me. It didn’t fit my skills. It most definitely wasn’t at the same level. It wasn’t even in sales. There was no opportunity for discussion. No other options. I felt like I was cast aside. I was disappointed and became even more disenchanted with the corporate world.

It was time for me to take back control. Time to choose to leave. There were still unknowns, but it was up to me to find the solutions.

It was a huge step and a big change considering I was still in the early stages of my recovery. Only once before in my career have I left a job without a new one already lined up. It felt like stepping off a cliff and free-falling into an uncertain world.

I was very much aware that I now saw the world through new eyes. I was a different person. My perceptions had changed, as had my willingness to compromise, to accept being a corporate soldier, to travel like a maniac, or keep working myself to death.

I had no patience for anything that didn’t fit with my own personal values anymore. And I mean zero. Those values had been turned on their head – money and status replaced by family and joy. I couldn’t just sit by and ignore people that I couldn’t respect – let alone report to someone at work like that. I saw no reason to even pay lip service to stupid ideas or idiotic corporate rubbish.

Even if my old role had still been there for me could I have gone back? I’m not sure. Maybe? But it’s a big maybe. I’d finally seen the light – not in the near-death experience kind of way! I’d tasted freedom from the corporate world. Seen the possibilities for a different life. I might have managed to survive a month or two, but it was time for change.

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I ≠ A JOB TITLE

Did leaving my corporate job help with my recovery? I don’t know. In many ways I feel as if I poured gasoline on what was already a raging fire in my life. Creating significantly more stress and anxiety by making such a major change at a time when I was trying to recover from a life-threatening situation. But when it comes down to it, I think it was impossible to avoid. There was no way I could go backwards. I could only move forwards.

The hardest challenge was detaching myself from my old work identity. I had let myself be defined by being Manager of that, Director of this, and SVP of whatever, for decades. I no longer knew who I was without a title or where I would fit in. I wasn’t sure I held any value to anyone without a title. I was terrified of ‘just’ being Jacqui again.

Absurd as it sounds, I missed the stress. I missed being busy. I missed all the meetings. I missed being needed. I missed being asked for my opinion. I missed all that adrenaline. I missed my colleagues. I missed being part of something bigger. I missed being able to hide behind the business persona that I’d created that was tough as Kevlar.

I’d spent most of my career in sales roles of one kind or another. I was passionate about the thrill of the chase. I was super competitive. I loved the adrenalin spike when we won new business.

I missed it all.

Suddenly I didn’t have any of that anymore. I didn’t know where I was going. What I was doing. Or what the future of work looked like for me. I felt invisible. I was no longer the confident, intelligent, smart, professional that I’d been before.

I felt like my world had been compressed to the size of our house. My confidence had imploded. My belief in myself had disappeared into a black hole.

I saw myself as lazy as I wasn’t working. I felt like I had no value. I felt guilty that Kim was still slogging away at his job when I was just sitting around.

I had a hard time relaxing. Giving myself space. Taking time to recover. To be able to think. I was desperate to be busy again to get away from the thoughts in my own head.

But I knew that I didn’t want to return to the kind of job in a large company that required more hours than existed in a day, took huge amounts of political juggling, and required payment via a pound of my flesh.

I HAVE A DREAM

I had to reconnect with the real me and start to convince myself that ‘Jacqui’ was worth something. I wanted to chart my own destiny. Have more control of my time. I craved balance in my life. I wanted to work for myself and started my own business.

I allowed myself to start dreaming again. I realized that I hadn’t let myself do that in a lot of years – too long. I had the chance not only to dream, but to reinvent myself. To find a new purpose. A new direction.

And I wrote this…

I have a dream whose seed was planted when I was a little girl. Scribbling pages of nonsense before I could even write.

A dream that led me to write childhood stories in adoration of ‘The Famous Five’.

A dream I thought was out of reach – too big a mountain to climb.

A dream hidden from the light of day for many years – lost for long lengths of time in the rush and swirl of everyday life.

A dream that at times seemed frivolous and pure vanity.

A dream pushed to the back of my overcrowded mind when I lost myself in the stressful corporate world.

A dream I thought I didn’t have the skills to achieve.

A dream occasionally revisited. Toyed with for a time. And set aside again.

A dream that never died.

A dream that has finally seen the light of day.

A dream that is now burning so bright – exuding energy, joy and zest for life.

A dream that is driving me forwards to a new future.

A dream that is blossoming into life.

A dream to be heard.

A dream to be remembered.

A dream to make people feel something.

A dream to write a book.

A dream that is now a reality.

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If this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.

Thank you!

If you missed any previous chapters from the book then you can find them easily on my website – click HERE and it will take you directly to the webpage dedicated to the book where you can read or listen to any previous chapters that you might have missed.

Every THURSDAY I’ll continue to share my ‘book in parts’ - Hold My Hand: A Journey Back to Life - chapter by chapter. I’m so excited to finally share it with all of you.

Image caption: uncomfortable ‘work’ shoes that gave me blisters and made my feet hurt are very much a thing of the past. ‘Heels’ no longer live in my closet. Now it’s bare feet, flip flops, Birkenstocks, or trainers (aka sneakers), preferably in the brightest colors I can find. If people want to work with me then they have to accept that I come as I am.

As always - thank you for reading or listening!

“Invest in your hair, it’s the crown you never take off.”

Unknown

Let’s talk about hair. Hair is an integral element of our self-image. Every time we look in the mirror, we can’t help but see our hair. We can’t go out without it. We wear it every day. It’s often the first thing we notice when we meet someone new. When we catch up with an old friend we might compliment their hair if they’ve changed the styling, cut, or color, since we last saw them.

People make judgements about us based on our hair or lack of it. It creates a first impression – are you edgy or conventional? It can make you stand out from the crowd. It may be so special that it’s how people remember you.

A new cut can boost our confidence or add another dimension when we need a fresh start. It’s part of our personal identity. It plays a physical role by protecting your scalp from the sun and other damage. And it can make you feel good about yourself (or not).

My hair has been every version of short, medium and long over the years. It’s been red, copper, or the darkest brown, with highlights, lowlights, and everything in between. Naturally a dark chestnut brown, I’d spent more than a decade dying over the grey as it has gradually accumulated.

At the time when I got sick, I had long hair, probably the longest I’ve ever had in my life. It stretched halfway down my back. Long as it was, I rarely wore my hair down, preferring to tie it back in a messy bun. That’s exactly how it was when we drove to the ER, when I went down for that first operation, and when I landed in the ICU.

You never really think about someone’s hair in that situation. You’re just thinking about them staying alive. But after ten days of lying flat on my back in bed, nobody brushing my hair, nobody doing anything, my hair was in a real state. The (purposeful) messy bun had become a matted and knotted ball of hair with an elastic tie lost in it. The whole thing resembled a bird’s nest.

As I gradually returned to the land of the living, lying in my hospital bed, I started to become more aware not only of my surroundings but also of my own body. It was more days than I wanted to count since I’d had a shower, put on deodorant, cleaned my face with anything but a hospital issue adult-sized wet wipe (yes, they really do exist), or washed my hair.

A LITTLE LUXURY

One morning a nursing assistant came into my room. Another new face. She was so warm, chatty, and friendly. Looking for any way that she could help me. I was still fragile and weak, but she just decided I was getting better. And made sure in her own way that I had no choice but to agree with her.

“So now that you’re getting better, how about I wash your hair?” she asked. I don’t think I could have imagined a bigger treat at that moment. I was lying there feeling grubby and less than human and here was someone who wanted to help me feel clean and fresh. I couldn’t say yes fast enough. Though I had no idea what I was actually letting myself in for…

A few minutes later she was back with a big trolley, on top of which teetered a huge contraption. I have no idea what I’d imagined when it came to the process for washing your hair while lying in bed, but it certainly wasn’t this!

The ‘contraption’ (that word is so perfect) was from the 1960s or perhaps even earlier. It was almost as wide as the bed and wedge shaped. Made of plastic or maybe some sort of coated fiber glass. The wedge part was meant to slide under my neck and shoulders, supporting my weight, so that my head then stuck out over a very shallow basin.

It resembled some kind of torture device. And of course, it didn’t just slide over the sheets, that would have been way too easy, instead it had to be forcibly shoved inch by inch between your body and the bed until it was in the right position. We struggled our way through it together, her more than me, I still didn’t have the strength to move myself. After a lot of huffing and puffing, along with a bit of brute force, we had me lying in the right position.

She told me that she’d been a nursing assistant since the 1960s and she was adamant that this contraption pre-dated her starting work. It hadn’t changed at all. I’m stunned that in all that time nobody has come up with a better design for this or for the dreaded bed pan!

Her first challenge was just to try and extricate the elastic hair band that was tangled in the bird’s nest previously known as my hair. It took ages of picking and pulling to get it out without resorting to scissors.

She then proceeded, with a jug of warm water and some shampoo, to wash the mini haystack as best she could. It felt amazing. As far as I was concerned it was the ultimate luxury that morning. It was so refreshing to smell the soap and feel the warm water on my skin. Her hands gently massaged my scalp. It was heaven.

I so appreciated that somebody was doing something so personal for me. Plus, her conviction that I was on the road to recovery, and should no longer think of myself as sick, was contagious.

But right away I came back to earth with a bump. There was no way that she could get a brush through my matted, tangled, knotted hair. There was no conditioner to try and smooth it out. There was no blow dry. She just rubbed it dry as best she could with a towel and tied the bird’s nest back with the elastic tie once again.

But the joy of a hair wash wasn’t totally lost. I’ll always remember that kind nursing assistant with fondness and with huge respect for having worked 50 years in that role. Here in Denmark you literally get a medal from the Queen (now our King) in recognition of your dedication and service when you achieve that number of years.

The bird’s nest was annoying. My hair was so long and so tangled that even tied back it sat like a big, matted lump at the back of my skull. Having to lie on my back the whole time I couldn’t even rest my head comfortably on the pillow. Something had to be done.

I cornered Mum on one of her daily visits to the hospital and convinced her to have a go at brushing my hair. She must have sat there for over an hour – until her arms were aching. It was full of impossible knots. My hair is fine, and at that point it wasn’t just long, there was also plenty of it. All of it in knots.

In the end there was no other solution. There was only one choice. Brush it as far as down as possible and then chop off the remaining knotted parts. Mum hesitated at first. Not sure that I really wanted her to start cutting my hair. But finally, she gave in and scissors were found.

We ended up taking off around 20 cm (about six inches). At least it meant that we could get a brush through my hair. It was still long enough to tie back to keep it neat. It would do for now.

I felt a little rush of joy that we’d accomplished something. A tiny step forwards in my recovery.

HAIR TACTICS

Once I came home, washing my hair was one of the things I wanted to do the most. But it was impossible for me to do it myself. My hands still not obeying orders from my brain and I was so weak I had no strength in my arms and shoulders. I could only just raise my arm above my head and certainly couldn’t keep it there for more than a minute or two. I had no choice but to ask for help from Kim.

Not only could I not wash my hair myself, I also couldn’t afford to get water on my body and my wounds. But we had a plan!

One of the positives of my previous back surgery was that we’d developed a number of tactics for day-to-day life that helped when I had a wound on my body that wasn’t shower friendly. Hair washing was just one of them. It felt good to have a solution.

So there I was in our shower, kneeling on a towel and leaning my upper body over a little set of plastic IKEA steps. They supported my weight while Kim would have a go at washing my hair with the shower.

He did his best, but it’s never the same as you doing it yourself or the hairdresser doing it at the salon. Another person simply doesn’t wash your hair in the same way as you’d wash it. We made the best of it. I was totally exhausted by the whole ordeal and Kim had to carry me back to bed to rest afterwards.

My hair was still a mess from our impromptu cut when I was in the hospital. As I gradually got better over the next couple of weeks Kim could at least pour me into the car and push me around the local shops, or take me to the various doctors, in a wheelchair. So, we booked a time for me to go to the hairdressers. At least there I could recline comfortably in a big, padded chair, with my feet up, and enjoy having my hair washed by the experts.

I’ve been going to my hairdresser for well over 10 years. It’s a long time and she’s seen me with glasses, no glasses, a bit plumper, a bit thinner, with long hair, shorter hair, mid-length hair, dyed hair, and even hair crucified by too much chlorine from the swimming pool. Every version of me! She’d seen it all. But what she hadn’t seen was this version of me. Folded in on myself. Thin and deathly pale. Sat in that wheelchair.

We rolled into the salon and waited for her to finish with her current customer. Once she’d said farewell she turned, and her colleague pointed us out as next on her list. She frowned slightly and looked confused. She didn’t recognize me. Who was this person? It was only when I opened my mouth and spoke to her in English that she connected the dots and realized who I was…

Her confusion morphed into a look of concern. Anxious to understand why I looked so different to the last time she’d seen me and to ask why I was now sitting in a wheelchair with Kim at my side.

I tried to explain to her what had happened. I couldn’t – yet again I choked on my tears. Kim took over and told her the story. Now it was her turn to cry. And like everybody else, she was so kind and caring. Ever so gently she cut and dried my hair. She erased the evidence of the hack job that we’d done in the hospital. Helping me feel just a little bit more human.

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FALL OUT

As the weeks, and even months, passed I started to notice that something was going on. My brush seemed to be full of hair each and every day. When I washed my hair, my hands were left covered in it. And each morning when I awoke my pillow was covered in more than a few stray hairs.

Hair naturally goes through phases during a year where it will grow and it will fall out. Apparently you can expect the greatest hair loss to be around the start of the year when we’re in the depths of winter here in Europe. So at first, I didn’t think so much of it, but then as we moved into spring I noticed that the hair loss wasn’t stopping. If anything, it was accelerating.

It got to a stage, around four months after I came out of hospital, where there was almost no hair left on the top of my head. I just had this strange ring of hair that ran around the sides and the back, where I still had these long tendrils hanging down. And then this almost bald look on the top. Friar Tuck eat your heart out!

It was horrific. And made me miserable. I was trying so hard to get better, but every time I looked in the mirror it dragged me back down. It’s psychologically traumatizing to lose your hair at any time, but especially when it’s on top of the mental scars (yet to heal) left by the experience of surviving a disease like NF.

I had no idea if this was normal after being so sick or whether there was something else wrong with me. I was desperately anxious – I had no idea if it was going to stop at some point or not. I had visions in my head of ending up completely bald.

At least when you have treatment like chemotherapy you know in advance whether it’s the type that may result in you losing your hair. You have the opportunity to prepare yourself for that happening. And even to take action to proactively cut it off or to use something like a cold cap in an attempt to try to retain your hair.

But this happened to me with no warning. Nobody told me it could happen. I had no chance to process it. No chance to prepare myself.

I had nobody to ask. I was back to Google again. Searching to try and find out why this was happening and whether it would grow back.

As it turns out hair loss can occur after sepsis. It starts ‘several’ weeks later – I guess as a result of the shock to your body – and lasts somewhere between three to six months. It’s generally temporary though I have heard of people whose hair never really came back.

It all just added to my misery. I was even less recognizable to myself than when I first came out of hospital. I adored having long hair, but it was going to take years to grow back. With every hair that fell out I felt like I lost another little piece of myself.

It took me another month before I finally conceded defeat. I couldn’t look in the mirror. I couldn’t stand to see my reflection. I was devastated that my precious hair was no more. I couldn’t deal with it. I had to do something positive.

I went back to my hairdresser and showed her what was going on. “Cut it off”, I said. “Cut it all off.” She needed some convincing before she understood that I was dead serious.

I’d spent hours searching for photos of women with cool short haircuts. I found one of Halle Berry, looking stunning, with a fantastic spiky, funky cut. It was also no bad thing that Kim adores Halle Berry even if he’s not the biggest fan of short hair. I took that picture with me and showed her what I wanted.

It hadn’t crossed my mind that my hair was so thin at that point that I didn’t have enough hair to even look vaguely like that. I’ve had my hair short in the past, but not that short for at least 25 years. Kim had never seen me with hair that short. Suddenly I had the shortest haircut. It wasn’t longer than three centimeters (an inch and a half) on the top and a buzz cut around the sides and the back.

Instead of making me look like I had more hair, as I’d hoped, it just accentuated my lack of hair. The hair I had left was patchy and thin. You could see more of my pale scalp than any hair. It was see-through. If anything, it was even more obvious just how much hair I’d lost.

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A NEW ME?

That new hair cut was a huge shock. Even though I’d chosen to do it, and it had felt like such a positive thing to do before I did it, afterwards I was mortified. I tried to make the best of it, telling people how much I liked it, but inside I was gutted. Are you recognizing a theme here that I’m not good at telling people how I really feel?

I couldn’t recognize this version of myself. I felt that the cut didn’t flatter me at all. It made me look older. It certainly didn’t feel like the fresh start I’d been looking for. It took some days and a lot of kind words from friends and family to make me feel (a bit) better. I convinced myself the cut was for the best.

There was a major positive outcome though after cutting it all off. Before ‘the cut’ I’d had the worst case of grey roots. I hadn’t dyed my hair since before my back operation so more than eight months before. So when I had the chop I had more than just grey roots. Much, much more. Cutting my hair so short removed all that old hair that had been dyed. And left me with my own (unadulterated) hair once again.

For the first time in a lot of years I was back to my ‘real’ hair color. And oh glory – did I have a lot of grey! Most of it in a single blaze down the middle of my head so you really couldn’t miss the flash of silver.

When I got up each morning my new spiky cut tended to make me look more as if I’d been dragged through a hedge backwards than a chic Halle Berry look alike!

I developed a love of hats and caps and gradually gained quite a collection. Now wherever I travel my ideal souvenir is always a hat of some kind. Be it a Raptors basketball cap from Toronto or a Florida Keys Brewing Co. pastel rainbow cap from Florida.

Even a trip to our local H&M store resulted in a blue furry bucket hat that would make Jamiroquai jealous! While I’ve cleared a lot of other clothing from my wardrobe in recent months, my hats are some of my most precious belongings.

Image caption: just a few favorites from my collection - including that blue furry number!

Sometimes I think that things just happen by (happy) coincidence when you have the greatest need. One day soon after my cut I heard a hair specialist (aka a trichologist) being interviewed on the radio. He talked about the best diet for healthy hair, but he also talked about the one drug that really does help hair regrow – something called minoxidil. You might know it better under some of its trade names like Regaine. Usually targeted for balding men it’s equally good for women. Off I surfed to my favorite internet pharmacy to stock up.

I still use the spray to this day. I don’t know for sure that it’s made a difference, but I’m pretty convinced that it has. It took a long time for my hair to start to regrow, but it’s now well over a year since my hairdresser cut it all off and we started over. Finally, it’s feeling and looking great again – thicker than I can ever remember, glossy, and healthy. Needless to say, I’m already on a mission to grow it longer again!

Image caption: two very different versions of my hair. 2023 - just over 6 months out of hospital, gaunt, and still with a haunted look in my eye. My thin hair is not so obvious in the picture, it’s amazing what a colored spray and the right pose can cover up. Fast forward to 2025 - lots more grey, lots more hair (!), and lots more length. And yes it is actually still dark underneath, it’s just covered up by all that grey that grows in a stripe down the top of my head. I must have been a badger in a former life!

But after all this my hair has changed. It hasn’t come back as it was before I got sick. I’ve read, and also seen, real life examples in my own family of how hair can change after falling out due to chemotherapy. People who previously had blonde wavy hair being replaced with mid-brown smooth hair post-chemo. Others with blonde straight hair developing curly hair.

The first thing I noticed was that my hair came back with much more of a curl. I’ve always had a bit of a wave in my hair, but now I had real curls. My desired spiky cut turned into a curl fest on the top of my head.

It’s also grown back thicker – not just in terms of the number of strands, but also in terms of each hair strand being thicker. It’s wirier. Some of that may be a change with my hair going grey, but it seems to be all of my hair not just the grey parts.

And the strangest thing is that it has grown back a slightly different color. And no, I’m not referring to the grey – there are still plenty of colored hairs too! My natural color was always a warm brown – ranging from a mid-brown to darker strands underneath. And when I spent a lot of time out in the sun, I would develop lovely auburn highlights that were so pretty.

Yet as my hair grew back it came back darker – it’s not black, but it’s closer to that than brown. And the weirdest part – it’s almost exactly the color of Dad’s hair when he was younger. It’s so strange for it to come back his color when he died just weeks before I got sick.

If I believed in the afterlife, which personally I don’t, then I’d say it was a sign that he’s still watching over me. Then again, maybe he is…

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If this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.

Thank you!

If you missed any previous chapters from the book then you can find them easily on my website – click HERE and it will take you directly to the webpage dedicated to the book where you can read or listen to any previous chapters that you might have missed.

Every THURSDAY I’ll continue to share my ‘book in parts’ - Hold My Hand: A Journey Back to Life - chapter by chapter.

As always - thank you for reading or listening!

“If you really understand hand-holding — what it is and how it has its effects — you begin to understand just about every single facet of what it is to be a human being… It expresses all the things that we are for each other.”

James Coan, Clinical Psychologist and Director of the Virginia Affective Neuroscience Laboratory at the University of Virginia.

I always experience a little pop of excitement when I get to that part of a book where the reason for the title becomes obvious. I feel like it connects me more closely to the author and what they were thinking as they wrote. (Yes, readers, we have reached that point.) It’s time to pull back the curtain – this is the reason that my book has this particular title.

I’d never been a big hand holder until I met Kim. There’s something so wonderful in having my little hand lost in his big one. We posted a picture on Instagram a couple of years ago with our thumbs side by side. His giant size and mine looking like the thumb of a little kid. If you compare our little fingers the difference is even more startling and I’m down to doll size!

Image caption: ‘that’ picture of our hands side by side.

We hold hands when we walk the dog. We hold hands when we’re sat on the sofa – though the scale of the latest one makes that harder than it used to be. We lie in bed and hold hands. Sometimes we even sleep holding hands. And whenever he can see that I’m having a hard time he’ll grab my hand or pull me into a hug.

As a child I was never interested in holding hands – Mum might correct me, but I have little memory of holding hands with her or with other family or my friends. I have repeated told people that I have my own central heating. I seem to always be much warmer than those around me, especially when it comes to my hands and feet. I’m the last person to put on gloves and even the thought of thick wool socks or fur lined boots in winter appalls me. As long as there’s no snow on the ground I’ll always be walking around in flip flops or Birkenstock sandals. If I get cold, then you can guarantee something’s wrong with me.

Holding hands is special and the effect it has on you isn’t just psychological, it’s physical too ⁽¹⁾. Research has shown it not only soothes and calms your body, but it reduces blood pressure and perceived pain, while also softening stressful experiences. It has the greatest effect when you’re holding your hands with someone you love, but it also seems to work if you hold a stranger’s hand.

Think of how small the palm of your hand is compared to the rest of the skin all over your body. Yet your palms have 15% of the sensory nerves related to touch in your entire body which is disproportionately high. As a result, your hands can tell the difference between a multitude of things, be it touching another person’s hand, stroking a pet’s fur, or putting your hand in a bowl of jelly.

And there’s more. Other studies have shown that you can even identify another person’s emotions, such as gratitude, disgust, happiness or fear, just by looking at their hands without even seeing the other persons face. Amazing, right?

Our hands are integral when it comes to our experience of the world. Yet we take them for granted. We never consider them not functioning, especially in their entirety. We’ve all experienced a cut on a finger, a bump on the hand, or perhaps even a broken bone in the hand or wrist. But for most of us that’s the worst we’ll endure when it comes to damage to our hands. It’s another thing all together when your hands don’t work at all – even for a relatively short time.

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I tend to have nightmares. It’s something I’ve experienced since I was a child. I can remember lying in my bed and screaming for my parents to come and save me from whatever was frightening me and yet no sound came out. I tried to scream harder. I couldn’t do more than a little squeak. Of course, I wasn’t aware that I was dreaming – it felt so real – until I opened my eyes.

I also have plenty of tales of finding my parents as skeletons lying in their bed, being grabbed by the neck and wrenched backwards out of an open second floor window, and that old favorite of being chased by an invisible, yet incredibly scary, boogey man or monster. Some of these dreams fade quickly in the cool light of day, but others are still clear in my memory many years (and sometimes decades) later.

These days I have fewer bad dreams. Less stress and a more relaxed life have helped. But sometimes, just sometimes, Kim wakes and can hear my squeaking, feel the tension in my body, and he knows I’m lost in a nightmare. The solution? He gently puts his hand flat on my back. The warmth of that human touch wakes me just enough to leave whatever unpleasantness is happening in the dream and soothes me back into peaceful sleep.

Image caption: we did a lot of hand holding on the day we got married - 22nd March 2008. We also had a good laugh as I tried to wedge Kim’s new wedding ring on to his generous sausage size finger! And yes, I got his approval before writing that. :o)

“Can you hold my hand?” I still hear Kim’s words echoing in my head. His voice becoming more and more desperate as he spoke to me that evening in the ICU. I don’t even remember if I could feel the touch of his hand on mine. In my head I think I could but maybe that’s fiction and I’m just hoping that I could feel the comfort of his hand on mine at a time when I needed it most. I know how soothing and reassuring it would have been for me – consciously or not.

I couldn’t hold Kim’s hand that day. Nor the next as I gradually awoke after that fourth operation. As I’ve said my hands didn’t work – they just flopped around on the end of my arms. I had no control over my hands or fingers. It makes my hands ache right now even thinking about it.

For Kim being able to hold my hand was so important to him (and it was for me too). A way to demonstrate that we’d never let go of each other again. A way for him to convince himself that I didn’t want to leave him. A way to stay connected. A way for him to gain a little confidence that I would indeed get better.

Looking back, I continue to be surprised that the nurses and doctors didn’t even seem to notice that I couldn’t use my hands. Many saw specific incidents that made it obvious. But they certainly didn’t ask. Or even check if I had a problem.

There was that ice lolly incident after the 4^th operation. Other instances when I couldn’t open those little pots of pills. Couldn’t operate my own phone. And of course there were also my twitching fingers that couldn’t pick up a glass of water however hard I concentrated. Why did the nurses not notice? Perhaps they didn’t want to? Maybe they thought it was someone else’s problem?

Even when I got to the new ward the nurse didn’t hesitate to feed me those first yogurts. They too probably thought I was too exhausted from the operation or too weak to feed myself after having been in a coma for a week.

I’m not sure exactly when I started to realize my hands weren’t working. I don’t remember being scared. Or even thinking about whether the damage could be permanent. I was busy just trying to even vaguely comprehend what had happened to me.

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My hands became a way for Kim to track my recovery. A barometer that showed the level of my returning strength and spirit. Checking, in his own way, that everything was going in the right direction.

Each day, once I was awake, he would ask me to hold his hand for his daily check. Every time I would put my hand in his and try to squeeze. Looking back, I realise that he was being kind and telling me how great I was doing even if he felt only the gentlest of pressure from my hand. I was convinced that I was squeezing hard enough to crack nuts.

He’d bring me little challenges. I’d missed all of Christmas and the prerequisite gift giving at home. So one morning he and Mum brought in a big bag of Christmas gifts so that I could open them. It certainly filled some time to keep us all amused. But it was such hard work. I felt like a toddler would have done so much better than me in getting through the tape and paper. Sometimes (in fact most of the time) it all defeated me, and I had to let Mum or Kim take the gift and finish opening it for me.

As the days passed in hospital I got a little more movement back in my hands each day. I gained a little more control over how they moved. And they became more responsive to what my brain was telling them to do.

It probably took two or three days for the coarser motor skills to come back – being able to control larger movements. It started with being able to hold a spoon to feed myself a yogurt or drink a protein shake. With concentration I was able to pick up a cup again.

Finally, I could pick up my phone. Sliding my finger around the screen several times before I could get my fingerprint in the right spot to open it. My replies started with just emoticons. Then a single word. Gradually with practice my messages got a little longer – though I had to delete almost as many wrong letters as keep the right ones. It was exhausting but also exhilarating to be able be a little independent and feel connected to the world outside my hospital room again.

During those days directly after ICU my hands also started to look different. All the skin on my fingers dried and cracked. We tried putting moisturizer on my skin. Rubbing it in multiple times. But nothing helped. It just dried out again. Ultimately an entire layer of skin peeled away to reveal fresh skin underneath. It was almost like my hands were being reborn.

I’m still not exactly sure of the root cause of the problems with my hands. Perhaps it was a result of the infection, my poor circulation because of my incredibly low BP, some kind of other effect from the sepsis, or something else.

After hours of digging and a lot of dead ends a friend, who is a doctor, did find references to something called critical illness polyneuropathy (CIP) – impairment of the nerves - and critical illness myopathy (CIM) – impairment of the muscles. These both affect patients admitted to ICU with sepsis and septic shock.

It’s estimated that as many as 70% (a significant majority) of patients with sepsis develop CIP ⁽²⁾. I’ve not I had the chance to ask a relevant doctor, but I’ve been through my medical journal and can’t find any reference to them considering that I might have been affected by CIP. Perhaps it was this condition that affected my hands, but it will remain another unknown on a long list of mysteries.

People assume that my hands are fine now. If I’m honest I generally go ahead and let them think that. Everyone I’ve told about what happened has such a hard time even attempting to wrap their heads around the fact that my hands didn’t work. So I don’t want to complicate matters.

Mostly my hands are better. Though in some weird way they still feel a little alien. As if they’re not my hands at all. But they work and I’m incredibly thankful for that. Over the months my fine motor skills, that help you do the little fiddly things like threading a needle or pressing a small button, gradually returned.

But my hands are different. They get tired more easily. And when I’m exhausted, they have this strange tingle and ache – like a very soft pins and needles feeling. I have less grip strength than I had before (yes, I know I need to buy one of those little hand exerciser devices!).

I also continue to find other things that still create small challenges for my hands and especially my fingers. While typing the thousands upon thousands of words for this book I’ve found out that my fingers still sometimes have a bit of a will of their own. They don’t always exactly follow the orders from my brain. Spasms and twitches happen that I wouldn’t have recognized otherwise.

A finger will be heading for the right letter on my keyboard and then suddenly twitch – left, right, up, or even down (there’s no pattern) and it will hit a different letter entirely. Needless to say, that sentence said ‘hot a different letter’ in the first version I typed as my finger twitched right. It means that spell checker gets a bit more of a workout than it did in the past.

I was on the clumsier end of the spectrum before this whole thing happened and the hands issues definitely haven’t helped. I certainly feel that I’m more prone not only to dropping things and knocking things over, but also more generally in bumping into things. There again after all of the trips, falls, and other little accidents that I’ve had all my life Mum may well disagree that anything has actually changed.

I so appreciate that the function in my hands came back at all. I’m aware that there’s a significant number of patients with NF, and also more broadly with sepsis, that aren’t so fortunate. They must live with various levels of limb amputation that was required to save their lives and, in some cases, have no hands at all.

I count myself as lucky and I’m happy to make the best of what I have. Kim and I will still be holding hands, at every opportunity, when we’re old and grey – well, older and greyer than we are now!

REFERENCES

1. The remarkable power of holding hands with someone you love - Washington Post – 12 February 2024 – Trisha Pasricha, MD

2. The impairment of small nerve fibers in severe sepsis and septic shock – Critical Care 2016 – Hubertus Axer et al.

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If this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.

If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.

Thank you!

If you missed any previous chapters from the book then you can find them easily on my website – click HERE and it will take you directly to the webpage dedicated to the book where you can read or listen to any previous chapters that you might have missed.

Every THURSDAY I’ll continue to share my ‘book in parts’ - Hold My Hand: A Journey Back to Life - chapter by chapter. I’m so excited to finally share it with all of you.

As always - thank you for reading or listening!

“Trauma can tear apart a person’s sense of safety, connection to self and others, and meaning in life. And for many, their trauma history feels like an open wound that will never heal over.”

Sarah Mandel, Little Earthquakes

I’ll make no bones about it. The mental recovery from this experience has been far harder and much longer than the physical recovery. I’m very aware that I’m still only part of the way through the process. It’s hard to judge exactly how far through the process I actually am. Some days it feels like I’m 99% of the way there, yet other days I feel like I’m still only at the beginning.

Physical wounds and scars are obvious. They’re external on your body. Everybody can see them. Well, not always in my case, since they’re between my navel and my knee so easily hidden by the right clothes. But they could see them if I wanted. Conversely the mental scars are invisible – obvious only to the most experienced onlooker that knows me well and spots a look in my eye or an occasional slight frown. For all intents and purposes, the mental scars are hidden from the world.

An illness like NF hits like a tornado, appearing unexpectedly on a summer afternoon, upending your entire life in a matter of hours. Those first two weeks I was swirling around in the howling winds – totally disorientated. No sense of where I was, or what was happening. But almost as soon as I was conscious and could recognize that something incredibly traumatic had overtaken us, Kim and I knew that we were both going to need help to recover psychologically.

The experience I’d been through was far outside of the ordinary. The tornado hadn’t just whipped us around, whipped us around some more, and then thrown us forcibly back down onto the ground. It was as if a year of life had been stuffed into the space of what was just a few days. Going from fit and healthy to lying in hospital, having almost died, and facing the fact that my own mortality had been thrown in my face.

I’ve never been to counselling, psychotherapy, or whatever term you want to put on the various forms of ‘talk therapy’. But I recognized that I needed help to process what had happened and to deal with what was still happening as I tried to get through the initial recovery phase. I had to find a way to calm the raging storm in my head and look forwards again.

It felt right (and entirely reasonable) to ask for help. I thought that I needed to find the right person who could understand the dramatic, traumatic nature of my experience. Looking back, I can see that was unnecessary as there are so many common features between many different kinds of significant trauma – be it divorce, bereavement, or an illness of some kind.

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We were lucky. We had a family doctor who was there to support us and who immediately appreciated the impact of what we were going through. She wrote referrals to clinical psychologists without any hesitation.

When I say that we were lucky I mean that in several ways. Our doctor didn’t make us jump through hoops – as can be the case – to ‘prove’ that our mental health was under threat. Plus, both of our respective employers offered us private health insurance as part of our benefits package, so we were able to move quickly to get an appointment. I know of other NF patients who have had a hard time even getting a referral. Or who have had to pay privately for sessions and simply haven’t been able to afford it.

If there’s one piece of advice I’d give to another NF patient, or even anyone going through a significant traumatic life experience, it’s to go and get psychological help. Prioritize getting help. Fight to get help. It’s been hard enough for me recovering with this kind of support and I can’t imagine how hard it would be (or how long it would take) without it. You shouldn’t even have to ask – it should be a standard part of any NF treatment package.

Almost as soon as my referral was in the system with the insurance company, I got a call. On the other end was a softly spoken woman. It wasn’t a receptionist or other support person – it was the clinical psychologist herself. I’m going to call her Violet – I’ll explain why later.

She was the epitome of calm, collected, professionalism. She asked a few questions about what had happened to me. We planned a time for us to meet in a few days. When I put down the phone I was flooded with relief – someone cared. Someone was there to help me.

I believe that chemistry, between you and the other person, is crucial when it comes to getting the most out of this kind of therapy. You need to feel that you’re talking to someone you can trust. Someone who has your best interests at heart. Someone that you respect – that you are willing to listen to and take their advice. Someone that you can pour your heart out to in a safe environment. When Violet called me that first time, she suggested, that we see each other a couple of times and check if the fit was right. We both had a Get Out of Jail Free card if we didn’t think it was working.

The day I went to see Violet the first time is crystal clear in my memory. Her office is in an old traditional Danish building – rendered in white plaster on the outside, with a black glossy tiled roof, and with big steps leading up to imposing wooden front doors in the center. The building seems to sit in its own world, set back from the road.

When you walk in all the walls are white and sanded wooden floors extend in every direction. Immediately you notice the quiet – there’s almost no noise at all – it’s like walking into a library. You climb up a creaking wooden staircase to the next floor. As you get to the landing you’re presented with shelves of shoes. It’s socks (or bare feet if you’re bold enough) only from this point on.

Everyone sits in the little waiting room avoiding eye contact. The only noise comes from the bathroom at the other end of the corridor. If you’re brave enough to ‘go’, then be warned that the sound is going to echo through the entire floor. There’s little to absorb it. Kim found that out the first time we visited. Nobody makes that mistake a second time!

The hush envelops you. It’s a bit like how I would imagine a silent convent to be – just missing the nuns in their black and white robes. The only sound the quiet swish of the fabric of their robes as they walk on by.

Violet’s consulting room is bright and airy with tall windows. A sofa stands against the left wall with two armchairs on the other side. A coffee table carries water, glasses, and a big box of tissues. The colors are soft and muted – nothing to draw your eye or distract your mind. White walls. Pale grey furniture. Neutral rug.

You sit on the sofa – its soft, organic shape means that you can’t help but recline slightly. Selected and designed, I’m sure, to make sure you feel comfortable and relaxed.

That first session was in early February, about four weeks after I’d left the hospital. I couldn’t walk any distance and certainly couldn’t drive at that stage. Kim had to come with me – not only to physically get me there, but also as my mental anchor. I was hanging on to him for dear life. I couldn’t even think about going without him.

I was already holding back tears as we walked down the corridor towards Violet’s room – my emotions swelling inside, bursting to find a way out, threatening to overwhelm me. Once those tears started, they didn’t stop for the entire hour.

I remember sitting on the sofa gripping Kim’s hand as if my life depended on it. The only thing that seemed to give me connection to a world that I didn’t recognize anymore. I felt lost at sea. Tossed around by massive waves. My brain in turmoil. I was certain that I’d drown if I didn’t hold on tight to his hand. He was my lifeline. My single source of comfort.

In a strange way the sounds of everything around me seemed to be muted. Colors drained. I was an alien in my own life. Everything that had happened felt like a dream. A bloody great nightmare.

I was overwhelmed by fear. Fear of the unknown and not really understanding what had happened to me. Fear I would never be ‘normal’ again. Fear of a future I couldn’t rationalize. Fear this wasn’t over. Fear it would come for me again. Fear I would still die.

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There are several medical conditions where you lose the ability to recognize people around you. In some cases, people that you’ve loved and been close to for years. But what do you do when you no longer recognise yourself? How do you deal with that? How do you find your way back to ‘you’ again?

I think we spent the whole hour just telling Violet what had happened to me in the past six weeks – so much in such a short space of time. That hour felt twice as long. When I was too emotional to continue, Kim stepped in and filled in the blanks. Sometimes I was crying too hard. Other times my brain just couldn’t find the words to describe the horror, the trauma, or the pain I’d been through.

I sat there in a crumpled heap. Like a deflated balloon. A bag of wrinkled, damaged skin with nothing much left inside. I was alive, but at that point I felt more like I’d lost the battle than won it.

I cried the entire time. I couldn’t hold it in. Tears poured down my face. It felt like a tsunami of emotion coming out of my body. By the end I was shaking with both mental and physical exhaustion. My hands tingling. Kim had to gently guide me back to the car outside. One foot in front of the other. Wobbly. Trembling.

I can’t say that I felt better after that first session. I didn’t. I did feel like I’d let out a lot of pent-up emotion that needed to come out. But I did have a little glimmer of hope. Hope that I had found someone to help me navigate a way forwards.

A couple of weeks later I went to see Violet alone. I wasn’t sure at all about going without Kim. I felt naked and untethered without his support. But he was going to his own psychologist, and I knew these sessions with her needed to focus on me and my own recovery. So, I went in alone. It was hard, but the freedom to talk openly without having to consider the impact my words might have on Kim was a relief.

Violet allowed me to pour out my story repetitively as I gradually processed different elements of it. Each time it felt a little more real. A little more like it actually happened.

As the sessions progressed it felt as if my vision was clearing. The fog was dissipating. I would still sometimes get surprised by strong emotions that suddenly bubbled up, seemingly out of nowhere. Gradually it happened a little less often.

Some of the triggers were more obvious than others. Whether it was the despair I felt each time I saw, in the distance, the hospital where I was first admitted and was instantly sucked back into its corridors. Or watching an ambulance go by, blue lights flashing, and imagining me in the back. Or seeing the emergency helicopters that fly over our house ferrying people into the hospital in Copenhagen. Other times I had no idea of the trigger – I just crumbled for a little while.

I had ongoing memory issues. I’d ask Kim the same questions repeatedly about what had happened. I’d lose track of my thinking midway through a conversation. I had a hard time retaining anything anyone told me unless I worked extra hard to remember it or ideally wrote it down.

I felt like I forgot everything. I’d go in the kitchen cupboard instead of the fridge to get milk. I’d go into our guest bedroom instead of the bathroom. I’d put a banana skin in the garbage bin that was meant to be for anything plastic instead of the biodegradable bin.

Violet helped me make sense of it. My brain was so busy trying to heal and trying to heal the rest of me, as well as process what had happened. It simply didn’t have space left for these small everyday thoughts. But I worried – what if this was permanent? What if I couldn’t do my job anymore? So many ‘what ifs’…

She taught me to allow emotions to flow over me and to accept them. Not to try and stop them or avoid them or worst fight against them. But to let them go. To try less to control them or even think that I could control them. I couldn’t stop them. But she assured me that they would pass. No feeling is forever.

I was able to appreciate that there was no ‘normal’ to return to. Even if I hadn’t got sick then my life would have continued to evolve and change. Nothing stays the same for long. Normal is only where we’re at – right now.

Was I bothered that I wasn’t who I was before? At first yes, very much. I was in mourning for my ‘old’ self. I grieved for the person I thought I was before – a persona that was recognizable, comfortable, something I knew. That person was in control, strong, respected, self-assured (at least on the outside) – a professional with a high-level global job in a big company.

But there weren’t two versions of me. My ‘new’ self was alien, a stranger, weak, reliant on others, scared, anxious, and confused. A shadow of who I was before. Yet I was still just one person. My mind hadn’t fractured into two. The old and the new had to find a way to co-exist and ultimately become one.

Asking for help was relatively easy at first. It was obvious that I’d been through a major trauma. It was OK to not to be OK. Those around me expected that I’d need help. It was accepted as another part of my ‘treatment’.

I was happy to tell anyone that asked that I was going to therapy and about how much it was helping me. I didn’t feel any need to hide it. As far as I was concerned, Violet was another key member of my medical team. Another person trying to help me get better.

The sessions with Violet were invaluable. I can’t even start to put a price on what they were worth to me in those months to get me through that initial phase of the trauma, allowing me to start feeling some sort of ‘normal’ again. I learned to give myself permission that the processing of all this would take time.

As she said to me it’s up to you to decide if you want to be unusual or weird. But that’s an active decision to make for yourself. Perhaps that helped me feel more real. More authentic. Truer to myself. But for me feeling ‘normal’ made me feel much less alone. Less of an island. I wasn’t unusual. I wasn’t the only one.

She helped me realize that I had a community of people out there who had also been through similar traumatic experiences that have changed their lives. She reconnected me to myself. She helped me see some of the possibilities of the future. And allowed me to see I didn’t need to let myself be defined by what had happened to me.

I went to see her regularly for around four months – enough time for me to heal physically, but also to feel that I was starting to find myself again and the initial whirlpool of emotions was starting to dissipate. I finally came to the conclusion that I was ready to try standing on my own two feet.

When I read this chapter back I felt that I’d made this all sound very easy. On a practical level some of it definitely was – I was lucky to have the appropriate insurance to get quick access to therapy and fortunate to find someone that I connected with at the first try.

But therapy itself is hard work and takes significant personal commitment and investment. I would be anxious about a session for two days before. It was never easy to revisit my memories, but there was no other way to mentally process what had happened. I didn’t know exactly what would come up each time, yet I knew there could well be discomfort and even pain. But as my Gran would have said “Better out than in”.

As time went on I was less anxious about my sessions and I’d walk in feeling good. Out of the blue, within 5 minutes of sitting down on that sofa, a tumultuous wave of emotions had overcome me and I had tears streaming down my face. Things would come to the surface that I never could have predicted. Still, I knew that the sessions were doing me good and helping me recover.

Each session – especially early on – exhausted me mentally and affected me physically. I would be tired for a couple of days afterwards. I spaced out my sessions with Violet to see her every 10 to 14 days. I allowed myself recovery time. Time to let things settle and to find an even keel again. It’s what worked for me, others may need to follow a different path.

There’s no question that it gets progressively harder to keep saying that you’re still not OK and continue asking for help as you move weeks, months, and even years past the traumatic event itself. Outwardly you look fine. People start to assume (wrongly) that you must be ‘back to normal’.

You really want to just put this experience behind you, making it something that happened in the past. You end up being your own worst enemy trying to put that experience in the past too quickly and not fully processing what happened. I certainly did just that and as I’d find out later it would come back and bite me. Big time.

When I finished therapy the first time, I thought I was done.

Only later did I realize that I’d barely started…

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If you missed any previous chapters from the book then you can find them easily on my website – click HERE and it will take you directly to the webpage dedicated to the book where you can read or listen to any previous chapters that you might have missed.

Every THURSDAY I’ll continue to share my ‘book in parts’ - Hold My Hand: A Journey Back to Life - chapter by chapter.