CHAPTER 13. It's OK That I'm Not OK

Hold My Hand: A Journey Back to Life

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

As always - thank you for reading or listening!

---

“Trauma can tear apart a person’s sense of safety, connection to self and others, and meaning in life. And for many, their trauma history feels like an open wound that will never heal over.”

Sarah Mandel, Little Earthquakes

---

I’ll make no bones about it. The mental recovery from this experience has been far harder and much longer than the physical recovery. I’m very aware that I’m still only part of the way through the process. It’s hard to judge exactly how far through the process I actually am. Some days it feels like I’m 99% of the way there, yet other days I feel like I’m still only at the beginning.

Physical wounds and scars are obvious. They’re external on your body. Everybody can see them. Well, not always in my case, since they’re between my navel and my knee so easily hidden by the right clothes. But they could see them if I wanted. Conversely the mental scars are invisible – obvious only to the most experienced onlooker that knows me well and spots a look in my eye or an occasional slight frown. For all intents and purposes, the mental scars are hidden from the world.

An illness like NF hits like a tornado, appearing unexpectedly on a summer afternoon, upending your entire life in a matter of hours. Those first two weeks I was swirling around in the howling winds – totally disorientated. No sense of where I was, or what was happening. But almost as soon as I was conscious and could recognize that something incredibly traumatic had overtaken us, Kim and I knew that we were both going to need help to recover psychologically.

The experience I’d been through was far outside of the ordinary. The tornado hadn’t just whipped us around, whipped us around some more, and then thrown us forcibly back down onto the ground. It was as if a year of life had been stuffed into the space of what was just a few days. Going from fit and healthy to lying in hospital, having almost died, and facing the fact that my own mortality had been thrown in my face.

I’ve never been to counselling, psychotherapy, or whatever term you want to put on the various forms of ‘talk therapy’. But I recognized that I needed help to process what had happened and to deal with what was still happening as I tried to get through the initial recovery phase. I had to find a way to calm the raging storm in my head and look forwards again.

It felt right (and entirely reasonable) to ask for help. I thought that I needed to find the right person who could understand the dramatic, traumatic nature of my experience. Looking back, I can see that was unnecessary as there are so many common features between many different kinds of significant trauma – be it divorce, bereavement, or an illness of some kind.

We were lucky. We had a family doctor who was there to support us and who immediately appreciated the impact of what we were going through. She wrote referrals to clinical psychologists without any hesitation.

When I say that we were lucky I mean that in several ways. Our doctor didn’t make us jump through hoops – as can be the case – to ‘prove’ that our mental health was under threat. Plus, both of our respective employers offered us private health insurance as part of our benefits package, so we were able to move quickly to get an appointment. I know of other NF patients who have had a hard time even getting a referral. Or who have had to pay privately for sessions and simply haven’t been able to afford it.

If there’s one piece of advice I’d give to another NF patient, or even anyone going through a significant traumatic life experience, it’s to go and get psychological help. Prioritize getting help. Fight to get help. It’s been hard enough for me recovering with this kind of support and I can’t imagine how hard it would be (or how long it would take) without it. You shouldn’t even have to ask – it should be a standard part of any NF treatment package.

Almost as soon as my referral was in the system with the insurance company, I got a call. On the other end was a softly spoken woman. It wasn’t a receptionist or other support person – it was the clinical psychologist herself. I’m going to call her Violet – I’ll explain why later.

She was the epitome of calm, collected, professionalism. She asked a few questions about what had happened to me. We planned a time for us to meet in a few days. When I put down the phone I was flooded with relief – someone cared. Someone was there to help me.

I believe that chemistry, between you and the other person, is crucial when it comes to getting the most out of this kind of therapy. You need to feel that you’re talking to someone you can trust. Someone who has your best interests at heart. Someone that you respect – that you are willing to listen to and take their advice. Someone that you can pour your heart out to in a safe environment. When Violet called me that first time, she suggested, that we see each other a couple of times and check if the fit was right. We both had a Get Out of Jail Free card if we didn’t think it was working.

The day I went to see Violet the first time is crystal clear in my memory. Her office is in an old traditional Danish building – rendered in white plaster on the outside, with a black glossy tiled roof, and with big steps leading up to imposing wooden front doors in the center. The building seems to sit in its own world, set back from the road.

When you walk in all the walls are white and sanded wooden floors extend in every direction. Immediately you notice the quiet – there’s almost no noise at all – it’s like walking into a library. You climb up a creaking wooden staircase to the next floor. As you get to the landing you’re presented with shelves of shoes. It’s socks (or bare feet if you’re bold enough) only from this point on.

Everyone sits in the little waiting room avoiding eye contact. The only noise comes from the bathroom at the other end of the corridor. If you’re brave enough to ‘go’, then be warned that the sound is going to echo through the entire floor. There’s little to absorb it. Kim found that out the first time we visited. Nobody makes that mistake a second time!

The hush envelops you. It’s a bit like how I would imagine a silent convent to be – just missing the nuns in their black and white robes. The only sound the quiet swish of the fabric of their robes as they walk on by.

Violet’s consulting room is bright and airy with tall windows. A sofa stands against the left wall with two armchairs on the other side. A coffee table carries water, glasses, and a big box of tissues. The colors are soft and muted – nothing to draw your eye or distract your mind. White walls. Pale grey furniture. Neutral rug.

You sit on the sofa – its soft, organic shape means that you can’t help but recline slightly. Selected and designed, I’m sure, to make sure you feel comfortable and relaxed.

That first session was in early February, about four weeks after I’d left the hospital. I couldn’t walk any distance and certainly couldn’t drive at that stage. Kim had to come with me – not only to physically get me there, but also as my mental anchor. I was hanging on to him for dear life. I couldn’t even think about going without him.

I was already holding back tears as we walked down the corridor towards Violet’s room – my emotions swelling inside, bursting to find a way out, threatening to overwhelm me. Once those tears started, they didn’t stop for the entire hour.

I remember sitting on the sofa gripping Kim’s hand as if my life depended on it. The only thing that seemed to give me connection to a world that I didn’t recognize anymore. I felt lost at sea. Tossed around by massive waves. My brain in turmoil. I was certain that I’d drown if I didn’t hold on tight to his hand. He was my lifeline. My single source of comfort.

In a strange way the sounds of everything around me seemed to be muted. Colors drained. I was an alien in my own life. Everything that had happened felt like a dream. A bloody great nightmare.

I was overwhelmed by fear. Fear of the unknown and not really understanding what had happened to me. Fear I would never be ‘normal’ again. Fear of a future I couldn’t rationalize. Fear this wasn’t over. Fear it would come for me again. Fear I would still die.

There are several medical conditions where you lose the ability to recognize people around you. In some cases, people that you’ve loved and been close to for years. But what do you do when you no longer recognise yourself? How do you deal with that? How do you find your way back to ‘you’ again?

I think we spent the whole hour just telling Violet what had happened to me in the past six weeks – so much in such a short space of time. That hour felt twice as long. When I was too emotional to continue, Kim stepped in and filled in the blanks. Sometimes I was crying too hard. Other times my brain just couldn’t find the words to describe the horror, the trauma, or the pain I’d been through.

I sat there in a crumpled heap. Like a deflated balloon. A bag of wrinkled, damaged skin with nothing much left inside. I was alive, but at that point I felt more like I’d lost the battle than won it.

I cried the entire time. I couldn’t hold it in. Tears poured down my face. It felt like a tsunami of emotion coming out of my body. By the end I was shaking with both mental and physical exhaustion. My hands tingling. Kim had to gently guide me back to the car outside. One foot in front of the other. Wobbly. Trembling.

I can’t say that I felt better after that first session. I didn’t. I did feel like I’d let out a lot of pent-up emotion that needed to come out. But I did have a little glimmer of hope. Hope that I had found someone to help me navigate a way forwards.

A couple of weeks later I went to see Violet alone. I wasn’t sure at all about going without Kim. I felt naked and untethered without his support. But he was going to his own psychologist, and I knew these sessions with her needed to focus on me and my own recovery. So, I went in alone. It was hard, but the freedom to talk openly without having to consider the impact my words might have on Kim was a relief.

Violet allowed me to pour out my story repetitively as I gradually processed different elements of it. Each time it felt a little more real. A little more like it actually happened.

As the sessions progressed it felt as if my vision was clearing. The fog was dissipating. I would still sometimes get surprised by strong emotions that suddenly bubbled up, seemingly out of nowhere. Gradually it happened a little less often.

Some of the triggers were more obvious than others. Whether it was the despair I felt each time I saw, in the distance, the hospital where I was first admitted and was instantly sucked back into its corridors. Or watching an ambulance go by, blue lights flashing, and imagining me in the back. Or seeing the emergency helicopters that fly over our house ferrying people into the hospital in Copenhagen. Other times I had no idea of the trigger – I just crumbled for a little while.

I had ongoing memory issues. I’d ask Kim the same questions repeatedly about what had happened. I’d lose track of my thinking midway through a conversation. I had a hard time retaining anything anyone told me unless I worked extra hard to remember it or ideally wrote it down.

I felt like I forgot everything. I’d go in the kitchen cupboard instead of the fridge to get milk. I’d go into our guest bedroom instead of the bathroom. I’d put a banana skin in the garbage bin that was meant to be for anything plastic instead of the biodegradable bin.

Violet helped me make sense of it. My brain was so busy trying to heal and trying to heal the rest of me, as well as process what had happened. It simply didn’t have space left for these small everyday thoughts. But I worried – what if this was permanent? What if I couldn’t do my job anymore? So many ‘what ifs’…

She taught me to allow emotions to flow over me and to accept them. Not to try and stop them or avoid them or worst fight against them. But to let them go. To try less to control them or even think that I could control them. I couldn’t stop them. But she assured me that they would pass. No feeling is forever.

I was able to appreciate that there was no ‘normal’ to return to. Even if I hadn’t got sick then my life would have continued to evolve and change. Nothing stays the same for long. Normal is only where we’re at – right now.

Was I bothered that I wasn’t who I was before? At first yes, very much. I was in mourning for my ‘old’ self. I grieved for the person I thought I was before – a persona that was recognizable, comfortable, something I knew. That person was in control, strong, respected, self-assured (at least on the outside) – a professional with a high-level global job in a big company.

But there weren’t two versions of me. My ‘new’ self was alien, a stranger, weak, reliant on others, scared, anxious, and confused. A shadow of who I was before. Yet I was still just one person. My mind hadn’t fractured into two. The old and the new had to find a way to co-exist and ultimately become one.

Asking for help was relatively easy at first. It was obvious that I’d been through a major trauma. It was OK to not to be OK. Those around me expected that I’d need help. It was accepted as another part of my ‘treatment’.

I was happy to tell anyone that asked that I was going to therapy and about how much it was helping me. I didn’t feel any need to hide it. As far as I was concerned, Violet was another key member of my medical team. Another person trying to help me get better.

The sessions with Violet were invaluable. I can’t even start to put a price on what they were worth to me in those months to get me through that initial phase of the trauma, allowing me to start feeling some sort of ‘normal’ again. I learned to give myself permission that the processing of all this would take time.

As she said to me it’s up to you to decide if you want to be unusual or weird. But that’s an active decision to make for yourself. Perhaps that helped me feel more real. More authentic. Truer to myself. But for me feeling ‘normal’ made me feel much less alone. Less of an island. I wasn’t unusual. I wasn’t the only one.

She helped me realize that I had a community of people out there who had also been through similar traumatic experiences that have changed their lives. She reconnected me to myself. She helped me see some of the possibilities of the future. And allowed me to see I didn’t need to let myself be defined by what had happened to me.

I went to see her regularly for around four months – enough time for me to heal physically, but also to feel that I was starting to find myself again and the initial whirlpool of emotions was starting to dissipate. I finally came to the conclusion that I was ready to try standing on my own two feet.

When I read this chapter back I felt that I’d made this all sound very easy. On a practical level some of it definitely was – I was lucky to have the appropriate insurance to get quick access to therapy and fortunate to find someone that I connected with at the first try.

But therapy itself is hard work and takes significant personal commitment and investment. I would be anxious about a session for two days before. It was never easy to revisit my memories, but there was no other way to mentally process what had happened. I didn’t know exactly what would come up each time, yet I knew there could well be discomfort and even pain. But as my Gran would have said “Better out than in”.

As time went on I was less anxious about my sessions and I’d walk in feeling good. Out of the blue, within 5 minutes of sitting down on that sofa, a tumultuous wave of emotions had overcome me and I had tears streaming down my face. Things would come to the surface that I never could have predicted. Still, I knew that the sessions were doing me good and helping me recover.

Each session – especially early on – exhausted me mentally and affected me physically. I would be tired for a couple of days afterwards. I spaced out my sessions with Violet to see her every 10 to 14 days. I allowed myself recovery time. Time to let things settle and to find an even keel again. It’s what worked for me, others may need to follow a different path.

There’s no question that it gets progressively harder to keep saying that you’re still not OK and continue asking for help as you move weeks, months, and even years past the traumatic event itself. Outwardly you look fine. People start to assume (wrongly) that you must be ‘back to normal’.

You really want to just put this experience behind you, making it something that happened in the past. You end up being your own worst enemy trying to put that experience in the past too quickly and not fully processing what happened. I certainly did just that and as I’d find out later it would come back and bite me. Big time.

When I finished therapy the first time, I thought I was done.

Only later did I realize that I’d barely started…

---

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.

---