CHAPTER 15. Crowning Glory
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?!
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“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.
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.
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…
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.
Wow, this was so moving Jacqui. We don’t often think of the recovery and its impact. So interesting about your hair returning differently, I didn’t know that.
Extraordinary how hair can change after falling out! You must be so relieved it grew back, and even with curls! The two photos of you are both really good portraits of you with great hair!