CHAPTER 19. Nearest & Dearest

Hold My Hand: A Journey Back to Life

If you missed the previous chapters of Hold My Hand: A Journey Back to Life then you click here to find them all - Hold My Hand - The Book. Want to know more about me? Oops! I forgot to introduce myself… And if you’d like to learn more about necrotizing fasciitis aka flesh eating bacteria then read this post… NECK-re-tie-zing FASH-e-i-tis... Say what?!

As always - thank you for reading or listening!

“You are the call and I am the answer,

You are the wish, and I the fulfilment,

You are the night, and I the day.

What else? It is perfect enough.

It is perfectly complete.

You and I…

― D.H. Lawrence, Look! We Have Come Through!

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.

---

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.

---

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!

---

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.

---