PROLOGUE: Life is a Game of Chance
Hold My Hand: A Journey Back to Life
“Between stimulus and response there is a space.
In that space is our power to choose our response.
In our response lies our growth and our freedom.”
― Viktor E. Frankl
I was entirely ordinary. Nothing special. Nor distinctive. A woman, well into mid-life, who was fit and healthy. I looked after myself. I swam, cycled, and loved yoga. I walked our dog every day. I slept well. I wasn’t particularly stressed. I had no significant medical issues and took nothing more than low dose hormone replacement therapy. And looking at my family history I wholeheartedly expected to live into my 90’s.
Yet in a matter of hours, with absolutely no warning, I went from realizing I didn’t feel too good to lying in intensive care, on a ventilator, in a drug-induced coma. Fighting for my life. And I didn’t even know. I’d rolled the dice in the game of chance, called life, and a sequence of one in a million events collided to almost end it right there and then.
Image caption: we all roll those proverbial dice in the game of life every day. And yes I had to go and raid our games cupboard to find the one game that still had these little things still in there - they seem to grow legs when you’re not looking and disappear!
You may have seen the headlines ‘Flesh-eating bug ate my face…’ (1) or ‘Flesh-eating bacteria that can kill in two days spreads…’ (2) or ‘A rare flesh-eating bacteria that can kill … could have a ‘terrifying’ mortality rate’ (3). With a name like “NECK-re-tie-sing FASH-e-i-tis”, aka necrotizing fasciitis or NF, most people can’t even pronounce it. They certainly don’t know what it is, nor would they recognize the symptoms associated with these deadly infections.
Few people know anyone, or even know someone who knows someone, who has been affected by NF. Yet globally NF kills more than 150,000 people a year (4) – very likely a significant underestimate for reasons I’ll explain later. Plus, it leaves hundreds of thousands more with life-changing consequences – both physically and mentally. It may be classified as a ‘rare’ disease, but it isn’t that rare, and it kills a high proportion of those who get it.
The most common bacteria, that cause these explosive infections, frequently live quietly on your skin and do no harm. If you’re a little unlucky then perhaps they invade your throat and make it sore. I had no risk factors that predisposed me this type of life-threatening illness. Nobody has been able to tell me how the bacteria entered my body. Yet somehow they did.
The fact that I survived was down to chance, or perhaps plain luck. So many ‘if we hadn’t done this’ or ‘if I hadn’t done that’.
If we hadn’t called the emergency out of hours medical service when we did … If that doctor hadn’t sent me straight to the emergency room … If we hadn’t had a large trauma hospital just minutes from where we live … If the medical team hadn’t been available when we got there at just after midnight on Christmas Eve …
If the doctors hadn’t started the intravenous (i.v.) antibiotics so quickly … If the gastrointestinal (GI) doctor hadn’t spotted my leg starting to swell and go red … If they hadn’t operated when they did … If my surgeon hadn’t had the experience of dealing with NF before …
If I hadn’t lived in a country like Denmark with an excellent public health system ... If we hadn’t lived so close to central Copenhagen so that I could quickly be shipped straight from the operating table in our local suburban hospital to the city center hospital with a hyperbaric chamber, set up to treat patients with these infections with pure oxygen …
If ... If … If ... Hours made a difference. Maybe even minutes.
I’m not particularly unusual in that I’ve battled a life-threatening disease and lived to tell the tale. Other people have survived worse injuries from accidents, long battles with chronic illnesses, and of course horrific rollercoaster rides with various cancers.
I could claim to be different as this disease moves so fast. I could say I’m different as I was struck by a relatively rare disease. Both are dubious at best. But there’s definitely one thing that makes me different … I need to share my experience with NF. I want to write about it. Many people don’t get the option as they simply don’t survive. And of those who survive many are so traumatized by the experience that they can’t bear to even talk about it.
As I write it’s ‘only’ 18 months since I got sick. It feels like a lifetime. I can’t believe it’s only 548 days. Yet at the same time I have the impression that it was only five minutes ago that it all started.
The feelings are still raw. The flashbacks, though less frequent, still happen when I least expect them. I close my eyes, and I can see scenes from what feels like a movie. I’ll be eating dinner and for no apparent reason feel the overwhelming need to cry. Some days I can see the sky is a beautiful blue. Other days there is only a creeping darkness in my mind.
Whenever I see an ambulance with blue lights flashing and sirens wailing, I can’t help imagining myself lying in the back, unconscious, being transferred between hospitals. Most days when we are out walking the dog I see the brutalist, light grey, concrete tower block that defines the first hospital where I was admitted, and I’m sucked back to sitting on a hard plastic chair in the emergency room.
When you’re suffering from a disease like this, and going through such a traumatic experience, you feel like you’re the only person in that situation on the planet. The loneliness is overwhelming. It comes with a tidal wave of despair. Even when you’re lucky enough to have supportive family and friends around you. My illness hit all of us like a tornado and an incredible amount happened in a very short space of time, especially in the first two weeks.
That loneliness doesn’t go away afterwards. It’s still just you. You’re the only one who can fight. You do everything you can to try to feel less lonely. You try to find a community. Other people who have been through a similar experience. At least someone to whom you can relate even if what happened to them is a little different. Something to convince you that you’re not alone.
My life has been split into two distinct parts.
Before I got ‘sick’ and after I got ‘sick’.
The fact of the matter is that I’m lucky to be alive. Right now, I look like I’m pretty much physically recovered. All the scars have healed. They’ll never go away – they’re my proof of a battle fought and won. They’re my history. I carry them with me as part of my story. People (wrongly) assume I’m ‘back to normal’ as those physical wounds have closed. Yet mentally I’m still processing and coming to terms with what happened to me. Those invisible wounds are very much still healing.
When you’re diagnosed with a wide range of diseases – be it cancer, heart disease, or something else – you frequently find out what it is that’s wrong with you after some tests. Then hopefully you have the chance to talk to the doctors, ask questions, and start to process what’s happening to you as you progress through the relevant treatment(s). You can still live life forwards. You’re aware of the battle you’re fighting.
But with an infection like this, that hits in such a short space of time, and that is so hard to correctly diagnose, the focus is on keeping your heart beating. The doctors aren’t even certain what’s wrong with you. You may have no idea (like me) that you might die. There’s no time to sit and discuss options. Action must be taken with little or no discussion to simply keep you alive. You find out information after the fact – if you’re lucky. It feels like you’re living (and having to process) life backwards.
I know that I should feel grateful to be alive. Sometimes I do. Sometimes I don’t. Healing is still a daily effort. I continue to ‘get better’ even though I thought I was ‘better’ months ago. I’m not even sure I know what ‘better’ actually is anymore or what ‘recovered’ looks like. I am forever changed as a person. The impact on my life and that of my close family will be evident forever.
Traumatic as it all was the experience hasn’t been all negative, there are positive outcomes too. I’ve built stronger ties with a small group of friends who have supported me along the way and who I now regard as family. I’m calmer. More patient. Less self-centered. Less materialistic. And I definitely don’t take tomorrow for granted.
My perspective of the world has been turned on its head. I’m aware that my values – what I think is important – have changed. Likewise, my beliefs – what I think is true – have evolved too. I’m doing my best to integrate the old me and the new me into a whole me. I’m a different person and yet the same person. I’m still searching to define what my life will look like going forwards. I’m exploring new paths that I hope will lead to inner peace and contentment.
When I couldn’t find stories that I could relate to during my own recovery it seemed obvious that I should make the effort to share my own story. I don’t have all the answers. But I think I do have some of them. I’ll share the facts of what happened to me and more importantly how I’ve managed to recover (so far) both mentally and physically and some of the things I’ve learned along the way.
I hope that by telling my story I can help someone even if it’s just a little bit. If you’re in a similar situation – you’re not alone. Or perhaps I can convince someone that whatever they’re experiencing will ultimately become a thing of the past. Or maybe by inspiring someone to believe that they too can survive and thrive after their own traumatic life event, whatever form it’s taken. Or maybe I can help you appreciate what someone close to you is going through.
Even though my primary motivation to write this book wasn’t for my own therapeutic benefit, I appreciate the fact that it has helped me to learn more about what happened to me and to make sense of it. And I’ve also found out that I love writing.
This book is focused on the now - a snapshot in time – the version of me that existed 18 to 24 months after my NF journey began. But that journey is far from complete. I’m not sure it will ever really be complete. It’s a fact of life that nothing stays the same for long.
I moved from the UK to Denmark in 2003. I was meant to be here to work for a couple of years. But over 20 years later I’m still living in Copenhagen. The decision to move here remains the best decision I’ve ever made.
I love this beautiful country with all my heart and can’t imagine living anywhere else. Though on a freezing, gloomy, grey, January day when we see daylight for no more than around six hours and must keep the lights on in the house all day, then I could be tempted to move somewhere with a little more sunshine!
I’m a scientist by education, so I’ve never been able to resist a good experiment or trying to find the answer to a problem. Understanding more about my infection was no different. Not only did I look for my community, but I also went on a hunt through my own medical journal to understand what happened in more detail and searched for scientific papers and research about this awful disease.
I have a degree in Human Physiology (how the body works) and a Ph.D. in Radiological Sciences (taking images or pictures of what’s going on inside the body). I’ve done my best to write from the patient perspective and don’t intend to blind you with science or complex medical terms.
You’ll find a specific chapter in the book that explains more about the type of infection that hit me, the symptoms, how common it is, and the relevant treatments. It’s entirely up to you if you want to read that or skip it, but I would encourage you to persevere and read it. There’s always the possibility that someone close to you could be affected by NF in the future, so knowing what to look for could save their life.
I’ll also introduce you to the people closest to me. There’s Kim, my husband. Known as ‘gorgeous’ on a good day or as ‘Kimberley’ on a not so good day when he’s managed to annoy me. No offence intended to all the Kimberley’s out there! You’ll hear direct from him in some places – sharing a few of the multitude of text updates he sent to friends and family while I was in hospital. He’ll also share some of his experience of what it was like to be the partner of someone who came within a hairs breadth of dying in such a short space of time.
I have no idea what I’d do without him and have no intention of ever finding out. He’s a Dane, so genuinely my Viking. He’s my best friend. He’s the person I know I can rely on to have my back 110%. He’s my grizzly bear – always looking out for me. We finish each other’s sentences. And we have (what is probably a very annoying) habit of bursting into song when we say or hear something that happens to remind us of a particular song lyric! He’s my biggest supporter and my greatest cheerleader. We’re a true team.
Kim has held my hand throughout and continues to do so. He was always on the ball with the medical team, and made sure that I was getting the right treatment when I couldn’t do that for myself. He puts up with my ups and my downs. He’s the perfect balance to my personality. My passionate, energetic, confident, no-limits self. But also, the gloomy, miserable, insecure, introverted self.
Because of Kim I’m lucky enough to have two wonderful stepdaughters. When my elder stepdaughter was a toddler she was diagnosed with a brain tumor. Though it was benign it had to come out as it was doing damage to the tissue around it. Over the years she has been through multiple operations, so Kim has (unfortunately) plenty of prior experience in terms of dealing with doctors, sitting around for days in hospitals, and going through life-threatening situations. She recovered and both girls, now in their 20’s, are living life to the full.
You’ll also hear about my mum. Mum is in her late 80’s, independent, art-loving, addicted to books, still driving, still buying clothes like her life depends on it, and still living in the UK a little way north of London. Mum arrived with Aunty Mary (Dads only sibling) just hours before I got sick.
Mum hadn’t been over to Denmark for almost three years at that point - partly because of the pandemic, but mostly due to my father being ill. Sadly, Dad died in late October 2022. Can you imagine if she’d then lost in her only child just eight week later?
And then there’s Evie, our dog, who zoomed into our lives just four weeks before I got sick. She has boundless unconditional love to give and an unquenchable desire for walkies. Sit down in our house and you can guarantee she’ll launch herself on to your lap without asking first. She may be after a cuddle, or to steal your food, or to present you with a toy so that you can play with her. A papillon (miniature spaniel) and chihuahua mix – though the chihuahua genes seem to have gone missing – she looks like a 4.5kg (around 10lb) tiny black and white border collie.
Of course, there have also been numerous medical professionals who kept me alive and have helped my recovery. I have met so many wonderful people as part of this journey, all of them incredibly kind and supportive. Several of them with specialist experience had to give up their Christmas holidays to come into the hospital to treat me as they were part of the A-team who had met NF before and knew what to do.
A few have stood out as they’ve had such a significant impact – there are many I’m sure that were also equally important to my survival of which I have no memory or who get little airtime in my medical journal.
First there’s Dr Handsome. So called because of a nickname he has at the hospital – that I don’t think patients are meant to know! He was the orthopedic surgeon who took control when the alarm bells rang, and it was him who decided it was time to cut me open to confirm what was wrong with me. Without his intervention before it was too late… Without his leadership in that first operation which brought together a bunch of different surgical specialties... Without his cleaning out of my original wounds so effectively… I wouldn’t be here.
My only early memory of him is his voice as he was speaking to other surgeons about who would be focused on what in my first emergency surgery. It was another set of chance events, weeks later, that resulted in me being referred to his wound clinic at our local hospital.
When he walked into the room, I had this powerful feeling of déjà vu as he spoke – “have we met before?” I asked? “Oh yes – we most definitely have” he replied. Apparently, I’d already deemed him ‘my best’ist new friend’ in my utterly delusional (incredibly sick) state before that first operation. Thank goodness he found it funny. I guess it wasn’t a bad thing to be a memorable patient at that point. His empathy was phenomenal. I have no question in my mind that he was key to my survival.
Hospitals are built to treat diseases and not built around people. So, when you have an infection like mine, that can target almost anywhere in the body, you end up being ‘owned’ by the specialty that presides over the area of the body where the bacteria have happened to start their party and do the most damage. At least that’s the case here in Denmark. For me that meant I was under orthopedics which was Dr Handsome’s specialty. I assume that was because they thought they might have to take my leg (where the infection was most obviously running riot) to save my life.
In many cases you then move around different medical teams. Initially with the surgeons for the early emergency surgery. Then moving to the intensive care unit (ICU) specialists for a while. Then back to the surgeons again to put you back together. And finally, to the plastic surgeons to make the best of all those lumps, bumps and scars.
Gradually you end up falling between a bunch of medical chairs. The surgeons have done their part. You no longer have an infectious disease. And nobody ‘owns’ you as a patient in medical terms or has any oversight of your recovery and any setbacks. It’s up to you to chase. To harass. To continue pushing until you have all the answers you need. To get any additional treatment that’s still required. Until you’re physically restored to the best version of ‘you’ you can be.
So that’s where Dr Lovely comes into my story. She’s amazing. I should admit that I’m totally biased - I handpicked her very carefully. More on that later. She’s a plastic surgeon and just over a year after I got sick she spent six months putting my body back together. Fixing disrupted stomach muscles and trying to improve the cosmetic (and in some instances painful) imperfections that resulted from the initial operations, done in such haste. Her level of skill is phenomenal.
There are many, many, many others that have helped me and to whom I will be forever grateful. But I’ll mention just one more. That’s my wonderfully insightful, utterly Zen, clinical psychologist. As you’ll hear, even when I was still lying in hospital, Kim and I knew we were each going to need help to process this traumatic experience. Mentally, it ripped each of us apart and shattered us into what felt like a million pieces.
My psychologist, I’ll call her Violet, has been wonderful. We had great chemistry from the start. She’s been with me for most of this journey. From the initial phase of dealing with the post-traumatic stress and processing what had happened to me, through to months later when it felt like my brain-imploded and anxiety and fear overwhelmed me.
She’s made me feel normal. She’s kept me grounded. Helped me deal with the darkest days. Kept it all real. And stopped me from floating off into clouds of rationalization and conjecture - creating stories and (frequently untrue) reasons in my head for things where none were needed. She’s helped me rebuild my sense of self. She has helped me look to the future. A future I just couldn’t imagine before.
In many ways I’m talking to myself about myself in this book. I’m laying out things that I’ve experienced or been through. I’ll give you my thoughts on what has worked for me. Things that have been meaningful to me. And tools I’ll use for years to come. My intention is not to provide a roadmap for someone else. But I hope there may be something you can relate to and perhaps use to your advantage when you need it.
Before we go on I must ask you a question. Are you sure that this book is for you? I’m obviously not trying to put you off reading it, however, I realize that some of the stories I’ll tell may be triggering for some people, depending on your own life experience. I won’t hold back, so I’ll tell sometimes graphic stories, that may be hard to digest. Though I promise there will be no actual pictures – even I don’t want to see those.
An honest and transparent approach is very important to me in writing this book as I want others in a similar situation – be that due to a similar rare infection or due to some other life-threatening disease or event – to be able to relate to my experience.
My story will be part memoir (the things I remember) and part biography (facts gathered from elsewhere) as I was either unconscious or so out of it that my own memory of what happened is incomplete, or in some instances I can’t separate fact from fiction.
What I do remember has been complemented by my own notes and diary entries that I started to write once I came out of hospital. I’ve also been able to go back and refer to other electronic sources (such as WhatsApp) to read messages that I exchanged with family and friends of which I have no memory. And of course, a significant amount of information I’ve gathered from Kim.
Even the process of writing this book has knocked loose some small memories and flashes of different images that I haven’t remembered previously. Some of course may be figments of my imagination or the result of the delusions and hallucinations that I experienced. Yet I have the feeling that some of them are indeed real.
Here in Denmark, we do have electronic online access to our medical journals which also includes lab tests and imaging reports from things like CT scans. Those records have been invaluable in cobbling together my story.
In my naivety I’d assumed we had access to everything. However, as I’ve found out, there are still gaps in some places. For example, prescribing data on what medicines I was given at what point and vital signs (heart rate, blood pressure, etc.) are patchy as they only appear when a medical professional added a note to my journal and mentioned something of significance. In some places documentation of when and who made important decisions about my care also seems to be missing and, in some cases, even entire doctor’s visits have not been recorded.
As my story unfolds, you’ll find text messages embedded at various time points. In them I share some of the messages I exchanged with friends. But mostly they’re messages that Kim sent, via the various messaging app’s, to provide updates to friends and family. Some have been translated from Danish and/or amalgamated for readability. But, on purpose I have tried not to correct grammar, so you get a direct feel for how Kim was feeling.
Everyone’s life is affected by a multitude of different events and challenges. Everything I’ve experienced is interwoven and has made me who I am now. There’s no way to unpick and calculate the effect on my health and wellbeing (both mental and physical) from the singular impact of having NF compared to the other things that have happened in my life around the same time. I’d just recovered from (unrelated) major back surgery. There was the loss of Dad just weeks before I got sick. And I’d worked in highly stressful sales leadership roles for many years, requiring long days, a lot of travel, and generating plenty of stress.
But here goes.
Everyone has a story.
This is mine.
If you enjoyed this post please do click on the heart, add a comment about what resonated for you – it means a lot to me to hear from each of you - and/or share it as that will help more people find Hold My Hand and my writing.
REFERENCES
(1) Flesh-eating bug ate my face and nearly killed me – but it helped me find love – Daily Star 11 March 2023 - Lizzie McAllister
(2) Flesh-eating bacteria that can kill in two days spreads faster than ever in Japan – The Economic Times – 17 June 2024 – unknown author
(3) A rare flesh-eating bacteria that can kill people in 48 hours is spreading in Japan and could have a ‘terrifying’ mortality rate – Fortune – 16 June 2024 - Akemi Terukina and Bloomberg
(4) What we know so far about strep A child deaths in the UK– New Scientist – Michael Le Page – 07 December 2022
Thank you to everyone who read last weeks post - Oops, I forgot to introduce myself… You helped make it my most read post so far and brought a bunch of new subscribers to Hold My Hand. If you haven’t read it and want to know a bit more about who I am then give the link in the title above a click - I’d love to meet you.
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.
Next week I’ll be posting Chapter 1. Out Of Nowhere – which kicks off Part I: My Story and covers the first two weeks of my journey with necrotizing fasciitis, starting on 23rd December 2022.
It’s been a while since we worked together and caught up properly, and I just read this with my mouth open. So glad you’re on the mend finally and that you had such amazing care across so many disciplines. I am sure there are lots of learnings for our NHS as well as everyday folks in this.