CHAPTER 17. Fighting Fires
Hold My Hand: A Journey Back to Life
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CONTENT / TRIGGER WARNING – this chapter covers topics that some people may find difficult to read, including frank stories about mental health and suicidal ideation. Feel free to skip on to Chapter 18 if those topics aren’t for you.
“To other people, it sometimes seems like nothing at all.
You are walking around with your head on fire and no one can see the flames.”
Matt Haig, Reasons to Stay Alive
FAKING IT
“I’m OK, right?” “I’m OK.” How often have I said that to myself or to other people since I got sick? Too many times. Recovering from a life-changing traumatic event is not a short process. It takes time. It can’t be rushed. You can’t make it happen. But I was desperate to force what happened to me into being a thing of the past. Something that was over. Finished. I thought I could make myself OK if I said it over and over and over again.
As the months passed, in that first year of my recovery, I said I was “OK” a million times. “Yes, it happened, but I’m OK now.” Sometimes I actually believed it. I felt so much better some days that I thought I must be recovered. Other times I was covering up yet another bad day. Initially each month I felt a little better than the last.
It was only as time passed that I had a point of comparison and realized I wasn’t OK, not better, nor recovered. Things started to go awry. The balance gradually shifted until there were more bad days than good. The fake “I’m OK.” became the norm. I no longer felt better than the week or the month before. I was actively trying to convince everyone that I was through this journey. That I was OK. But I was deluding myself.
When I was in hospital, and in the months afterwards while my physical scars were still healing, it was obvious that I wasn’t OK whatever answer I gave when asked. Those around me could see the signs. People knew I was faking it. Just like when I was sitting there in hospital, incredibly ill – with no recognition of how ill I actually was – laughing and joking, as if I was half drunk. I was still telling everyone I was OK, when I could have died within a matter of hours.
There’s also another element to it when it comes to your nearest and dearest – I’ll talk more about them in a later chapter. Your friends and family are part of your journey whether they (or you) like it or not. You can’t detach yourself from them.
You can’t help but want to do your best to try and protect them. So, you keep saying to them “I’m OK”. Simply because you can’t bear to inflict more pain on them, or to have them worry even more than they do already. You become focused on being strong for others yet crucify yourself in the process.
Friends started to assume that I was OK because I looked OK on the outside. So, when I said “I’m OK”, they believed me. Well maybe they didn’t really believe me, but perhaps they didn’t want to think about the fact that maybe I wasn’t OK. They didn’t want to press and find out the real answer. They didn’t know how to deal with that. They just wanted to believe me. It’s a natural reaction. I certainly don’t blame anyone.
Once I’d told people that I was ‘OK’ I felt that I couldn’t backtrack and then say I wasn’t. On top of that, I have never been able to bear people feeling sorry for me. Even a hint of sympathy makes me unreasonably annoyed. I didn’t want to see their sad faces. I didn’t want their pity. I couldn’t bear it. As a result, I hid what was going all the more.
I wasn’t OK. The more I tried to force everything into my past, the more I suppressed how I was really feeling and the more the pressure built. It wasn’t just related to getting so sick. There was also baggage from the past – previous incidents, experiences, and emotions, that I’d not dealt with.
The result was that I was carrying a huge burden. Each suppressed, unprocessed psychological event was like a stone dropped into a rucksack on my back - it was getting harder and harder to carry, and as my knees started to tremble from lifting such a heavy weight, it became impossible to keep faking it.
The wounds on my body had healed, but the psychological wounds were still bleeding profusely in my mind. Faking it, trying to hide from my own thoughts, and pushing down the truth allowed those thoughts to fester and multiply. Invading every part of my psyche. Like a volcano building up to an eruption. Biding its time. Just waiting to explode.
THE DARKNESS
Over the space of six months – which included getting past the first anniversary of my getting sick in the middle – the pressure gradually ramped up in my head. My mind swirling like thick, black, noxious smoke. I couldn’t think. My short-term memory was awful.
I couldn’t concentrate on anything – I was back to not being able to read and enjoy a good book. I couldn’t watch TV. I scrolled incessantly on my phone – it hardly left my hand – not even seeing what I was looking at. The more I tried to distract myself the more I failed.
I couldn’t relax – I felt permanently on edge. I was sleeping badly – lying awake for hours in the middle of the night. Time seemed to slow down. Every minute lasted an hour.
Nothing could calm my mind. I had no chance of focusing on anything. My world felt dark and overwhelming. I couldn’t appreciate anything good – everything seemed meaningless.
There was an almost imperceptible increase in the pressure – day after day after day. I was hiding from myself – self-medicating with alcohol just to make the thoughts in my head go away for a short time – then mentally beating myself up afterwards.
I was utterly desperate to convince myself and others that I was healed and ‘back to my old self’.
And yet I couldn’t see any future and certainly not a future that I wanted to be part of… I kept thinking how much easier it would have been if I’d died. Everyone would have gotten over it by now and moved on, right? I wouldn’t have had to go through this struggle. It was all simply too hard.
At the same time, I continued to panic about what other damage the infection might have done to my body that I wasn’t even aware of yet. I’d expected to live to a ripe old age in my 90’s, but now I knew that it was possible that I might not even make 60. I’d read a scientific paper about NF that found the median survival for NF suffers was just ten years post-infection.
Even though as a scientist I understood just how dubious that number really was likely to be, confounded by a host of other factors, it still haunted me. A median is just the number in the middle of a wide range which includes numbers a lot smaller, but and also numbers a hell of a lot bigger. Still the grim reaper was sat on my shoulder. I couldn’t get it out of my mind.
The clock was ticking, and that sound was deafening in my head. I couldn’t see the point. I thought I might as well end my life now if that was all I had left. Why stick around any longer?
This wasn’t the first time that I’ve experienced this kind of depression, but it was the worst (so far). I’ve been engulfed by it a number of times in the past and survived it each time. I say survived as the wounds never really healed – I just found a way to cope each time and popped another stone in that rucksack I was carrying around on my back. The wounds continued to accumulate over the years.
My memory of every instance includes what I call ‘the darkness’ – a feeling that everything is dark and threatening. I can see no rays of light, even on the sunniest day. It has nightmarish quality that has haunted my dreams. Always there in the back of my mind. Ready to run riot without warning and engulf me.
As a child I would lie in bed at night and listen to my parents’ fight. They probably argued in the daylight too, but I only remember it happening in the dark. When I should have felt safe in bed, I was stretching to hear what was happening. Hear if they were going to make up. Or if my mother was going to leave – taking me and my carefully pre-packed collection of my most loved cuddy toys with me. Even as an atheist I used to pray from the moment I came home from school that tonight they wouldn’t fight again.
In my late teens and early 20’s I felt the need to take control of my world as everything in my life seemed so uncertain and I couldn’t see where my life was going. But that need for control went into overdrive and led to a battle with anorexia which accelerated over a five-year period. At my worst I was skeletal – able to take tiny UK size 8 jeans on and off without undoing the zip or buttons. I was banned from my favorite aerobics classes if I didn’t have a doctor’s note to say I was healthy.
During that time I plotted how to end my life. Working out when I’d be alone in the house. Thinking about the best way to do it. I made plans. I had dates. The only thing that stopped me was the thought of my parents finding me.
I went for numerous doctor’s visits and a host of tests – always allowing people to think that there was something wrong with me physically, creating the weight loss, rather than admit the illness was in my head.
Finally, one evening (on a dark winter night) our family doctor sat me down. “You have a choice,” he said. “You can decide to eat and live, or you can keep not eating and die.” I remember sitting in his office so clearly. There was no offer of therapy. No offer of any drugs. It was just black and white: live or die. You decide.
Something changed that night – I went home and ate like my life depended on it. It was an uphill struggle. There were a lot more downs in the subsequent years than I probably even remember. I had the support of my parents, but no other help. Not even anyone to talk to who understood or who had been through something similar. It was up to me.
For years I told people that anorexia was like alcoholism – it never left you. (Authors Note. Something I no longer believe.) It was just waiting in the wings to step out and take center stage again at a suitably stressful moment. But somehow, I managed to push it all down and find a way to survive. I was hanging on by my fingernails most days. I didn’t process what I’d gone though. More stones went in that rucksack.
Then I moved to Denmark in my mid-30s. Walking out on a husband and an 11-year marriage literally overnight. In the space of three weeks I had made the decision to move, packed my stuff, and relocated to a rented apartment in Copenhagen. Six months later my world fell apart. I would find myself sobbing for hours at my desk in the office. Hoping that nobody would walk by and see me through the glass wall.
This time I did ask for medical help and took anti-depressant medication for a year. A year of humdrum. Of missing out on all the highs and lows. Just feeling nothing. But it gave me a chance to recover. Time to work out how to stand on my own two feet again.
So, I knew the darkness. It wasn’t foreign to me.
Almost 14 months after I’d been released from hospital, I went in for plastic surgery to repair my stomach muscles. When they closed the large wound in my abdomen, they closed up what they needed to, but they didn’t sew my stomach muscles back together – more on that later.
But not only did it look unsightly, but it was also a physical issue for my back. After my surgery to fuse together two lumbar vertebrae my back needed all the help it could get from my core, including those stomach muscles which right now were doing nothing. After a year without the support it needed my back was already starting to grumble (again) – it was time to act.
Once I knew I needed the surgery to stitch my stomach muscles back together I was lucky enough to be able to pick where to have that done. I actively chose a solution whereby I didn’t have to return to one of the two hospitals where I’d been treated for NF. I could go somewhere different.
I hand-picked my plastic surgeon, ensuring I picked someone with broad experience. I’ll forever be grateful that I found Dr Lovely. I had the opportunity to meet her and get to know her. And I knew immediately that I could trust her wholeheartedly. She was on my side and genuinely wanted to help me.
The surgery went smoothly. Everything went exactly to plan. Physically it was a huge success. I could finally look at my stomach in a mirror again rather than looking anywhere else.
I should have been ecstatic. And yet the downward mental spiral that has already begun accelerated. Really accelerated. Things got even darker.
I saw no future. No hope. No joy. No nothing. I couldn’t see the point of living the rest of my life. I was empty and numb.
As the darkness took over every corner of my mind, I started to think more and more about the morphine pills we had in our safe at home. Spare pills from my various operations that I hadn’t needed, but that I’d saved ‘just in case’.
I tried to calculate if there was enough to end my misery. I looked up how much I needed to make everything go away for good. To let me find oblivion forever.
A month after that surgery I did nothing but sit on the sofa and cry for an entire weekend. I could see my pain reflected in Kim’s eyes. His overwhelming worry and concern that there was something desperately wrong. His bravery to ask a question that nobody ever wants to ask changed everything.
“Have you thought about killing yourself?” he asked. I remember just looking at him. Trying to concoct yet another fake answer in my head. Another lie that I was OK.
Nobody, and I mean nobody, outside of our house knew that I was as terribly depressed as I was – maybe they saw an odd bad day or two, but that was all. Not Mum. Not even my closest friends. Nobody knew of the darkness that had gradually engulfed me over the previous six months.
“Yes,” I said.
GIVING YOURSELF PERMISSION
The need to be ‘better’ can be overwhelming. But sometimes you need to give yourself permission to not be better. You need to challenge yourself and ask: so what if I’m not better? Does it actually matter? What does it really mean? What in reality would the consequences be if I just let it go?
Recognizing you need help again is hard. It felt like a huge step in the wrong direction. It took a ton of courage to admit to myself that I couldn’t process this alone. I needed professional help once more. I just wanted everything to be in the past. Part of yesterday and not tomorrow.
Kim knew things were bad, so the weekend when he’d asked ‘that’ question he wasn’t letting me go until I’d taken action, and he pushed me to get the help I so obviously needed. I couldn’t make the decision for myself at that point – I was too far gone.
It was at his insistence that I headed to my computer and sent a message to Violet – the psychologist that I’d seen previously. Hoping that I could go back and see her again. Hoping even harder that she had the time to see me quickly. The whirlpool of darkness in my head was terrifying. Thankfully she fitted me in within a couple of days.
Violet was phenomenal, and every session brought some kind of light bulb moment or enlightenment. Every time I learned something. I could often be spotted, after a session, loitering outside her building tapping notes into my phone. I wanted to make sure that I remembered all the good things she’d taught me and the things I’d learned about myself while talking to her.
She wasn’t surprised to see me again. She knew that we’d worked through the initial trauma in our previous sessions. But she could see that we weren’t done. We’d just dealt with one fire that had been burning. Now the fires had multiplied, fanned by the breeze of me faking “I’m OK” for too long.
She was well aware that I’d been through so much in the recent past – Dad’s death, my sickness, and leaving my ‘safe’ corporate job. In her mind it wasn’t a question of if I would fall apart, but when.
That initial session was hard, but it was also a huge relief. A liberation gained by giving myself permission to not be OK again. To admit everything that had been going on in my head. A torrent of emotion flooded out.
We process trauma like chapters – in bite-size pieces. We simply can’t do it all at once as it would totally overwhelm us. Our minds spiral around and around. Revisiting events and the emotions attached to them. Each time we visit them a little more of the associated emotion dissipates as we continue processing. I’m not a psychologist, so this is my layman’s interpretation.
It’s a step-by-step process that can’t be rushed and can’t be forced. I had to give myself permission to go through it. To let it happen.
It was (and still is) up to me to give myself permission – to have a down day, to not yet feel recovered, to just be myself. But it’s incredibly hard to allow yourself to be that vulnerable. To stop relying on others to give you that permission.
Violet helped me to understand that it’s only you who can give you permission. Nobody else. The sense of freedom that realization gave me was huge. I came out of the initial session with Violet feeling like so many things had fallen into place. That night I slept almost ten hours straight. It was as if something had been uncorked in my brain that then allowed my body to relax.
After a couple of sessions, we went away on vacation for a week. Kim and I were so looking forward to the break – we’d booked it months before and had counted down the weeks and the days until we would leave. Time in the sunshine to relax, walk, swim and enjoy.
I was feeling like I was doing better, and the darkness had started receding. But out of the blue, almost as soon as we arrived at the hotel, I was hit by overwhelming misery and grief. I have no idea where it came from. There was no obvious trigger. I couldn’t put words to it. I couldn’t explain it.
Kim only had to look at me with concern and I was sobbing for the third time that day. I scared waiters as I sat with tears pouring down my face all through dinner. Another day I avoided dinner all together as I couldn’t bear to see the sympathetic faces of the waiters. I was embarrassed.
It was as if a huge bubble of misery had worked its way to the surface of the volcano and burst. Once again I couldn’t control it. It wasn’t the week we’d hoped for.
I came back from that trip wondering what had hit me. Unable to work out what had happened, or why for that matter. I went to see Violet just a few days after our return. And guess what – I walked into her office and fell apart all over again.
That session was cathartic. I hesitate to say life-changing, but it was. It was almost as if some kind of huge, ugly, blocked drain had been released in my head letting out the negative emotions that I’d carried around from a succession of different traumatic events throughout my life. It was positively spiritual. Even an enlightenment.
At the heart of everything the blockage in that drain came from a deep-rooted fear of being alone. And from not seeing myself as valuable enough for people to want to love me or care about me. Suddenly everything started to make sense.
I walked out of her office a different person. All those negative emotions that I’d pushed down, hidden from those around me, and doggedly continued to carry around for decades were released. The trauma of my sickness had tipped me over the edge. Pushed me past the point of what I could carry alone. It had to come out.
“The most powerful stories may be the ones we tell ourselves”, says Brené Brown. “But beware—they’re usually fiction.”
Like every other human I can’t help but try to rationalize and explain things. Trying to find reasons. Finding a why. Something to explain whatever it is that has happened to me or in my life. Trying to find answers. Making up a story if needs be. Instead of letting whatever it is go and just accepting what’s happened.
I’ve been a master at coming up with good logical reasons for things that have happened even though those reasons are utter rubbish! I try to ‘explain it away’ – convinced that if I can do that then whatever it is can’t hurt me. Convincing myself that it won’t fester. Trying to assure myself it’s happened due to some other reason and not because of something I’ve done.
We all tell ourselves stories. It’s basic human nature. If we don’t have the background or we’re not given an explanation, then we’ll make one up. But we need to be aware that we are just making it up. It’s most likely a work of fiction.
LEARNING TO FLOAT
I don’t have all the answers – nobody does. But with Violet’s help I’m learning to accept that I don’t need them. There’s plenty I can do myself to soothe my soul. To relieve stress. To spend more time in the here and now.
Maybe you’ve wondered why I call my psychologist Violet. You don’t need to make up a story – here’s the explanation.
Some of my sessions with Violet have included meditative breathing. Especially when I’ve walked in almost combusting with anxiety and fear – shoulders up around my ears from the physical stress in my body – words falling over each other as I try and express the riot of chaotic thoughts flying around in my head.
Just reconnecting to my breath. Sitting and being aware of breathing: in – out – in – out – in – out. Just a couple of minutes and I can start to calm my mind and my body.
We’ve done a few of these sessions, but a couple were especially memorable. The first was in that session after I’d imploded on vacation. I don’t remember the exact content of the meditation, but I know it involved colors – I can’t tell you if Violet told me to think of a color or whether it just happened. She described a flame for me to focus on. In my mind that flame was such a vivid purple. The most beautiful color.
After we’d finished the session Violet asked about my experience, and I couldn’t help but tell her about this amazing color that had appeared around that flame and enveloped me.
I remember that she smiled – she explained that in her version of the world purple is the color of transformation. That gave me such a strong hope that I was indeed moving forwards in terms of processing everything that has happened to me.
‘Purple’ seemed like a weird name to give her, so I picked Violet instead.
The other memorable session was a few weeks later. Once again I arrived all of a jabber. Emotion spilling out of my body totally unexpectedly. Triggered, I think, by a small change a couple of days before when I had swum for the first time in a swimsuit without cycling shorts – showing my scars on my leg to the world for the first time. See there I go, rationalizing again instead of just accepting it happened!
We did a mediation/breathing exercise and Violet led me down into the deep blue something – water and yet not water as there was no sense of the possibility of drowning. Just this beautiful blue that got deeper and deeper. As we went deeper the calmer my mind and body became. The emotion ebbing away. I felt totally serene as I watched the rays of sunshine cutting through the water above me.
Blissful.
Like most people in my situation, I have struggled. Struggled to get better. Struggled to keep up a front so that people think I’m better. Struggled to not inflict more pain on loved ones around me. Struggled to try and force things to happen faster. Struggled with the overwhelming desire to put this all behind me. Struggled to meet what I thought others expected of me.
I’ve struggled to control every element of the world around me. Struggled to rationalize and explain away what has happened to me. Struggled to avoid looking weak or incapable. Struggled against the obstacles that lay in my path. Struggled to acknowledge and appreciate the progress and the good things. Struggled simply to be alive.
But now I’m aware that the struggling has to stop. It takes a toll. A huge toll. It drags me down into a negative whirlpool that drowns my mind. The more I have struggled to make my recovery happen faster the more my progress has actually slowed.
I must be brave enough to let things go. To accept what has happened without needing any explanation. To let things be as they will be. To stop fighting. To find happiness in the moments where I’m trying the least. And to refocus on being my best self – in this very moment. Not yesterday. Not tomorrow. Right now.
Recently I heard Rowdy Gaines (American Olympic swimmer and gold medalist - 1984 LA) being interviewed on the Rich Roll podcast. Water safety is so close to his heart. He talked about supporting efforts not only to teach kids to swim, but also to teach little ones to simply float on their backs to save them from drowning.
The image of that small child stuck in my mind. It’s the perfect metaphor for a technique that so many adults – including me – need to learn. A strategy to save our own mental health. To save our minds from drowning. To stop struggling against life.
Instead, we need to learn how to float. Imagine laying on your back, arms wide, legs relaxed, staring up at the blue sky. Serene. Safe. Still. Calm. Peaceful. Listening to your breathing. Letting things flow.
MOVING FORWARD
I’m convinced that I’m moving in the right direction, but my mental recovery is still very much a work in progress. I can’t tell you that I’m not, at times, still fighting those fires in my head – I am. Some days I can still be anxious when it comes to finding out how to live again. And I can still find it hard to let go of what has happened to me.
I’ve worked with Violet to improve my firefighting skills. The fires are smaller and occasionally just smoldering a little these days. They’re easier to extinguish. Less likely to explode into roaring forest fires devouring everything in their path – out of control.
Violet always tells me that we never go backwards when processing traumatic events even if it feels like it. I believe she’s right. However, when you’re in the midst of a fire it can be hard not to feel that you’ve regressed.
Acceptance is vital. To allow what will be to be. To allow those emotions to wash through you. I say ‘through’ on purpose as saying ‘wash over’ feels wrong – they’re part of you, not something outside of you. They need to pass through your existence. Then those emotions are free to come and to go. Remember, no feeling lasts forever.
I can now see a future. A future that I very much want to be a part of …
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!
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Every THURSDAY I’ll continue to share my ‘book in parts’ - Hold My Hand: A Journey Back to Life - chapter by chapter.
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You can never underestimate trauma and its psychological / physical impact. Thank goodness you worked through it with help and support Jacqui. You are very strong.
So glad you've found help in processing all that you've been through, Jacqui. There's so MUCH to process. x