CHAPTER 12. Alien World
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 - Hold My Hand - The Book - to catch up on any chapters that you haven’t read before continuing. Or listen to it here - Hold My Hand - AUDIO Book Part I
If you’re an ANDROID app user just a reminder that my voiceover on this post doesn’t currently replace the automated Substack version. So hit play on the voiceover in the post itself.
If you’d like to know a little more about me then head here… Oops! I forgot to introduce myself…
And if you’d like to learn more about necrotizing fasciitis aka flesh eating bacteria then please read this post… NECK-re-tie-zing FASH-e-i-tis... Say what?!
As always - thank you for reading!
“Finding yourself alive after almost dying is not, as it turns out, the kind of party one might expect. You realize that you weren’t returned to life, but just introduced to death.”
Sebastian Junger, In My Time of Dying
As the car pulled away from the hospital, I slumped in the passenger seat and let out a sigh of relief. Utterly wiped out from the effort of just walking from bed to car.
I knew, without any question, that I wasn’t well enough to go home. But I was terrified that if I stayed in that place a minute longer then I’d never get out of there. Not that there was anything wrong with my care – the entire medical team had been phenomenal in saving my life. None of that fear and anxiety was in any way rational.
We live about a 30-minute drive from the hospital. I can close my eyes and be back in the car that day. I gazed out of the window at the streets. There were people everywhere. In cars, on bikes, walking along the pavements.
The holidays were over, and the kids were back at school after their festive break. Everyone was rushing around. Going about their normal days – their normal routines. How was that even possible? How could their lives be so unchanged when mine had been turned on its head in such a short space of time? Would things ever go back to ‘normal’ for me?
It felt as if my brain was imploding. I wanted to scream. I couldn’t comprehend this new world that felt so foreign and alien to me. It was like a nightmare or waking up in some sort of parallel reality. I was in pieces and felt like I’d never be whole again.
I sat there. Desperately trying not to cry. Not wanting to worry Mum sitting in the back of the car. Kim sitting beside me.
We stopped at our local grocery store so that Kim could grab some shopping. I sat staring straight ahead at the brick wall of the building.
Misery, fear, and the enormity of what had happened over the past two weeks swamped my mind like a tidal wave. Tears rolled silently down my face – I couldn’t hold it in any longer. It was the first time I’d cried since it all started. I tried not to sob – not to make a sound. I didn’t want Mum to see me upset. She expected me to be happy that I was going home. Instead, I was falling apart.
Finally we were home and drove into our garage. The electric door slowly rolled shut behind us. I took a deep breath and dragged myself out of the car – I’d already used up every ounce of energy. Every movement hurt. My leg felt as heavy and ungainly as a tree trunk. I hobbled across the garage towards the door that led into our utility room and the rest of the house.
Kim parked me on a chair by the door and went to get Evie. We knew that when she saw me, she’d do that puppy thing of peeing all over the floor. She rushed out into the garage so excited that Kim and Mum were home. She shot past me to greet them – wagging her tail so hard that her entire body moved with it. Not even realizing who I was and that I was back.
It was only when I called her name that the penny dropped. She galloped over – desperate to show me that she still loved me. According to Kim she’d spent the first week that I’d been gone sniffing at our closed bedroom door. Trying to work out if I was in there. After a week she gave up. Not sure why I’d disappeared so quickly from her little world.
It felt like a marathon-effort to just walk through the house and make it to the sofa yet it was no more than 15 or 20 meters. As I sat down Evie tried to bounce all over me – a little 3kg (6lb) ball of endless energy. I was so frightened by her. Scared that she’d jump on my wounds. I grabbed at the loose cushions. Attempting to build a padded fort to defend my ravaged body from her.
All she wanted was cuddles and my attention. But in my head, I was asking myself if she could have been the source of my infection? There was no evidence to say she was, but still… I barricaded myself behind even more cushions.
Kim made me a big mug of tea. I’m a typical Brit in that I love tea – by the liter - it’s comforting and soothing. I’ve not been able to drink coffee for many years as I developed an intolerance to it, so tea is my warm drink of choice. Good old British tea with a bit of milk.
Kim brought it over and I took my first sip. Looking forward to something so familiar and homely. But it tasted awful. Bitter. Unpleasant. Like what I’d imagine tree bark soaked in water would taste: moldy, earthy, and rotten. It was entirely unexpected and I burst into tears (again).
We built our house just a couple of years before I got sick. Designed on a single level we’d taken into account that this was the place we wanted to grow old in. We didn’t (and still don’t) envisage ever moving again. This was our forever home.
Tiled floors stretch through the entire house. There are no stairs or steps. It’s spacious without leaving us too much extra space. And it was set up for someone to be able to negotiate it in a wheelchair or with a rollator. We just hadn’t expected to be testing that design feature so soon!
I pulled myself up off the sofa and hobbled to our bathroom. The wall-to-wall backlit mirror stretched across the wall in front of me as I stood at the sink.
I stared in horror at the pale, gaunt face that looked back at me. My reflection utterly different to the person who had left the house two weeks previously. I was walking, talking, and physically still in one piece, just about. But my body was so filled with fluids from the shock reversal treatment that I looked like the Michelin man from my waist down.
I’d seen myself in the small mirror in the bathroom at the hospital, but this was different. It was a seismic shock seeing my ‘new’ self in my ‘old’ world. It was jarring. I can’t put into words just how devastated I felt at that moment.
In the two weeks I’d been away, I’d morphed into a different person. Not by choice. One I just couldn’t recognize. I crumpled and cried (yet again). Kim walked in and wrapped me in his arms. Warm, comforting, safe.
I started that day over the moon at the thought of getting home and yet once there I cried and cried and cried. I hadn’t cried at all in hospital – not one solitary tear. But once I was home the flood gates opened – I couldn’t stop crying (for weeks as it turned out). Sometimes it was triggered by something on the TV, something someone said, or something that I thought. Other times the tears just flowed for no obvious reason. They just had to come out.
I couldn’t help but imagine Kim living in our house by himself. Having to clear out my things. Sitting there, feeling abandoned by the person he had loved most in the world. Thinking about all the what if’s and sliding doors moments that could have gone the other way.
Maybe my being home was all just a dream? Maybe this was all a work of fiction? Maybe I didn’t survive at all?
I knew I was meant to be happy to be home. But the tears kept flowing. Being home meant I could see everything that I felt I’d lost in the space of just a few days. I was mourning the person I used to be and terrified by the huge uncertainties of a new future. Real life hit me like a juggernaut, and I felt as if I’d lost every skill I needed to deal with it. My world had shrunk to a tiny bubble. I was drowning in overwhelming misery.
‘It’s amazing you’re still here.’ I heard those words so many times in the weeks after I came home at the multitude of hospital appointments we had to attend. From anyone who read my medical journal. Nurses. Doctors. Imaging specialists. That look on their faces. Unsure what to say. Yet feeling that they had to say something. Shocked that I’d managed to survive.
I should have been feeling grateful to be alive, right? But it was hard to mentally comprehend that I’d come so close to dying. I couldn’t feel grateful, not yet. The mental fight was still to come. The fight to recover. The fight to get my life back. The fight to find ‘me’ again.
If I’d died, I wouldn’t have known anything about it – I would have just drifted away - my model of the world, but maybe not yours. I found it hard to be grateful that I’d survived. I’ve read a lot about the power of gratitude via journals, other gratitude practices. I won’t say they don’t work for me. But I’ll say that they’re not the best fit for me. And at this point it all seemed utterly irrelevant. Self-help blah blah blah…
Getting out of hospital seemed like such a big step towards freedom. But you forget how weak you are, how quickly you sap the little energy you have, and how limited your mobility will be. You have to ask those around you to do everything for you. You’ve just replaced the nurses (who were doing a job) with your family members (who do it out of love and kindness). But you feel guilty either way that you have to keep repeatedly asking for help.
I didn’t have the strength or stamina to wash myself. There was no hope of a shower. My wounds were too fresh and too open. Nor could I stand for any length of time even if I’d been able to shower.
Kim had to sit me down on a stool in the bathroom and wash me with a cloth. I felt like a baby. Incapable of doing anything useful for myself. Naked and vulnerable. By the time we were done I was exhausted and shaky.
When I got home, I was still confused. I knew I’d been sick. But I was asking Kim the same questions constantly as I just couldn’t store the answers in my memory. Nor could I make sense of what had happened on the various days and keep a timeline in my head.
I knew that I’d had multiple operations. I knew there had been an infection. But at that stage I had no real concept of what had happened to me. No appreciation of how sick I’d actually been. No idea of what the battle had been, whether I’d fought it well enough, whether I’d beaten it or whether the enemy was still hiding in my body waiting, waiting to jump out and start it all over again. A battle that perhaps I felt I might not win the second time around.
Nothing brought me comfort. Nothing distracted me or took away the pain. Anything on TV seemed banal and meaningless. I couldn’t concentrate to follow a plot. Initially I found it hard to read. The words seemed to swim around in front of my eyes – I lost my place every few seconds. I couldn’t remember what I’d just read. The stories seemed stupid, irrelevant, and the self-help books, that I’d read in their thousands, suddenly seemed ludicrous and even distasteful.
I’ve loved listening to the radio since I was a kid, especially late at night. I had a little red plastic transistor radio that sat beside my bed. Lying there listening to corny comedy shows via a small mono earpiece. My radio addiction faltered 20 years ago when I moved to Denmark. But in more recent years the advent of radio via app’s opened a host of new possibilities to listen to UK radio shows again.
I’d been due back at work on January 9th. The day I should have returned from the medical leave for my back operation. That day my life should have returned to normality. That day I should have been getting back in the swing of things. But that wasn’t going to happen.
I turned on the radio that morning. Hoping to find something I could hang on to – something ‘normal’. But what I found was so alien to me. I’ve loved listening to Chris Evans since his time on BBC Radio 1 (UK) back in the 1990s. He’s a little crazy. More than a little irreverent. And I was a huge fan of his show on Virgin Radio. Loved the chat. Loved the music. Loved the inspiration, and the TV, movie, and book recommendations.
That morning, he was back from the Christmas and New Year’s break. Asking about everyone’s ‘wins’ of the holidays. I couldn’t take it. What was my win? My win was simply surviving. Being alive. Everything else was irrelevant. I turned it off. More tears.
I had to send a message to the company that I worked for to let them know that I wasn’t coming back to work anytime soon. Even though I had a hard time explaining what had happened (I didn’t get it myself) they appreciated that it was something serious. The person I contacted in Human Resources reacted with a warm and caring message back. Who knew when, or even if, I’d be ready to go back. I had no idea.
HOME (DIS)COMFORTS
You’d think that sleeping in your own bed would be so great. And in many ways, it was. However, you forget that it doesn’t have the functionality of a hospital bed that bends and lifts and lowers in so many different directions to make it both more comfortable and easier to get in and out.
But more importantly in some ways there’s the house keeping practicalities like the fact that the sheets don’t get changed for you. Nor are the pillows arranged. There’s no laundry service. And your other half may want to cuddle when all you want is your own space. Fearful they’ll touch your wounds accidentally and put you in yet more pain.
For the first couple of weeks, I didn’t sleep more than four hours a night. Going to the bathroom each the night required so much physical effort, and was so painful, that it woke me up thoroughly and I had no hope of going back to sleep for hours. And then I had to be awake at 4am to take yet more antibiotics.
It didn’t help that I had to sleep on my back with pillows under my legs to try and help the fluid flow back into my body so that it could come out. Even without them I couldn’t have lain on my side or my front as my wounds were too raw. At the best of times I hate sleeping on my back.
My stomach muscles were sore where they’d be cut through and from the metal clips that were holding the wound together. If I gave up with the pillows under my legs and tried to sleep on my side, as I did now and again, it felt like my insides were trying to escape and the clips would break. It was so unpleasant.
You’d think everything would be easier at home. Especially as we’d built a house to accommodate us into our old age. The bathroom was only one or two steps further from my bed than in the hospital. But it wasn’t easier.
At home there were no rails and handles to support me around the bathroom so I tried to lean on an unstable stool as I lowered myself down onto the toilet. Then the hard toilet seat put pressure on my painful wounds - especially the one that wrapped around the back of my upper thigh - so I had to perch on the good side of my butt with nothing to help me balance and zero strength in any of my muscles.
I was terrified every time I went to the bathroom. It was entirely up to me to make sure that I kept my dressings clean and dry. On every trip I tried to tape a range of plastic bags over my leg and its bandages convinced that one drop of pee on the dressings would start an infection. And then I had to hold all of that in place while I tried to get myself on the toilet. And as you’ll probably guess – did I ask for help? Mostly – no.
The sheer effort of going to the bathroom myself was exhausting. Trying to get used to not having a catheter anymore. Meanwhile the ‘devil juice’ antibiotics continue to wreak havoc on my digestive system so I couldn’t risk a fart being something else and I had to go to the bathroom even more frequently than normal.
I was dying for these wounds to heal so that I could just take a shower or a little walk. ‘Just’ is such a key word. We take these things for granted – well, not walking so much as I’ve had years of back problems that stopped me being able to do much of that – but think of a shower. Many of us shower every day without even considering how we’d feel if we couldn’t do that. Until suddenly you can’t do it anymore – for weeks on end. I felt permanently grubby and unclean.
LEAVING HOME - AGAIN
“Where there is mystery, there will be fear.” Matt Haig, Reasons to Stay Alive
In my head I kept ask myself ... Why me? What had I done wrong? Was this all my fault in some way? Could I have done something different and avoided all this? Did I ask for it in some way? Was it all the stress I chose to accept over the past ten years? The all too frequent travel, the long hours of work, and the endless pressure? How was it fair? I was so much fitter and healthier than many other women my age. Was all that hard work basically useless? Or was it the reason I ultimately survived?
I had no risk factors for an infection like this. Nobody knew how the bacteria had invaded the inside of my body. It was a mystery. That was the REAL fear – would it all happen again? If nobody had any idea how this had happened in the first place then how could anyone stop it happening again?
I never got angry when I was in hospital. I never railed against the world. Against the unfairness of it all. I needed to rationalize it all and solve the mystery of why it had all happened to me.
The doctors told me that the chances of me getting NF again were non-existent. But it’s such a rare disease the chances of me getting it in the first place were miniscule. Yet I still got it. It was hard to move past that. If I let myself think about it for too long, my anxiety skyrocketed.
I couldn’t look forwards without listening for that rustling in the bushes in the hidden corners of my body. Listening so intently. Losing my connection to the world around me. Caught up in the mist drifting around those bushes. Waiting for the boogey man to jump out of the darkness.
A couple of days after I got home, Kim’s parents came to visit. Trying to prove that I was getting better I’d dragged myself out of bed and pulled on clothes. That used all the energy and I had to lie down on the bed to recover. My bloated legs propped up again on the pillows.
When they arrived, I got up and noticed a wet patch on the bed under where my left leg had been resting. I didn’t understand where that was coming from. I hobbled out of our bedroom and over to the sofa.
As I sat there, I realized that the wetness was coming from my leg. Soaking through the bandages and the leggings that I’d just put on. My leg wounds were starting to gush clear fluid. Mentally I went into meltdown – convinced the boogey man was indeed coming to get me.
We panicked. Totally panicked. Just a few minutes after Kim’s parents arrived, we left – rushing to the hospital. We didn’t think twice, and we certainly didn’t wait to call the out-of-hours medical service (as it was Saturday) that you’re meant to call before heading to the ER. This time we weren’t waiting for anything.
I remember us arriving at the hospital – the same ER at our local hospital where we’d gone that very first night when I got sick. I was slumped in a wheelchair. Shivering with a 39oC fever even while wearing a warm winter coat. I had visions that this was going to be it this time. Convinced that the infection was back, and it was determined to win this time. I was terrified.
The ER receptionist was the only person we met in this experience who was just plain nasty. She sat in her ivory castle behind a plastic screen thinking she was queen of all she controlled. She scowled at us. Huffing and puffing. Complaining about us not following the correct process to call before turning up. She even attempted to tell us that we’d broken the law! We tried to explain. Tried to get through to her that just a few days previously I’d been critically ill. She looked down her nose at us, as if we were making it all up.
After a long verbal tussle, she caved in and agreed to find a nurse to see us. She made out that she was doing us a massive favor.
After what seemed to be forever, a kind nurse wheeled me into an exam room. She listened to our story, took my vitals, and disappeared to log us into the system. I was so relieved that someone was listening and taking us seriously.
Then came another succession of doctors. Of course, it was a Saturday night so once again I’d managed to get sick at a totally inconvenient time. Kim was sending messages to his parents – cooking instructions for the dishes that he’d already prepared for dinner.
The medics were concerned enough to admit me again – not so much because of the clear fluid coming from my leg wounds which they felt was just part of the healing process – but more because they didn’t like my fever.
Once again Kim headed home, and I was wheeled off to a ward for observation and yet more i.v. antibiotics.
Thankfully it only took 24 hours for the antibiotics to bring my fever back down and one of the wonderful nurses found a new way to dress my leg with a much more effective compression bandage, quickly reducing flow of fluids from my wounds.
BACK TO THE BEGINNING
It’s funny how the universe sometimes throws in a twist of fate to put you on the right path. Unbeknownst to me I had been admitted to the orthopedic surgery ward and I was back under the care of Dr Handsome, my original surgeon who had run that first surgery to diagnose the NF and who had played such an important role in saving my life.
Looking back, I am strangely grateful that I ended up back in hospital again. It made a huge difference to my care for the next couple of months.
Even though I was released the following day I was referred to Dr Handsome’s wound clinic where we met a week or so later. He decided to keep me under his care until the wounds had healed – a different approach to the city hospital who had released me with little advice other than to go to my own family doctor in a couple of weeks to get my stitches and metal staples removed. Removing my stitches that quickly would not have had a positive outcome as they were literally holding my leg together as the wound healed incredibly slowly.
I was so relieved that someone was willing to still ‘own me’ as a patient and take responsibility. As I found out later, it’s all too easy to fall between multiple chairs with this kind of infection.
That wound clinic for my leg became my second home as we were there every week in addition to attending the separate wound clinic for my abdomen that caused a bunch of problems in its healing (or lack of) too.
It was Doctor Handsome himself who finally removed many of the stitches in my leg when his nurse was busy elsewhere. It was him who ordered a PET-CT scan (a special scan that looks for hot spots that show where there’s unexpected activity from illness or healing in your body) to try and work out where my infection had originated in my body. It was him who wouldn’t let me go until he was sure that my leg was healed and that I was on the right road to recovery.
I will always be so thankful for his care and his empathy, and that of his wonderful nurse. It meant everything to me in those initial three months of my recovery. Having consistent people looking after you means so much, but is so rare, if not a total unicorn, these days.
If you haven’t been through this type of experience it’s probably not easy to understand and sounds like just another ‘nice to have’ in terms of your care. But it’s not.
It’s especially appreciated when it saves you from having to explain, yet again, what happened to you or having to listen to yet another person telling you how lucky you are to be alive ...
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: one of my own - a winter wonderland unrecognizable from the same view the night before. An alien world?
What a nightmare being admitted to the hospital again, but so good to read that this time it resulted in being seen by the same doctor who was really taking care of you until the wounds have healed. I could feel the relief when reading.
Wow , it’s so harrowing what you endured! I can’t even imagine.