The Blog

Please Believe Me...I'm Not Back To Normal

Late last year, I leapt into the black night air and broke my back, feet and left wrist. And how am I now? I think of things like Post-Traumatic Stress Disorder and then I reprove myself sharply. Surely PTSD is for people blown up while doing something valiant in a war. What right have I to it?

Late last year, I leapt into the black night air and broke my back, feet and left wrist. And how am I now? I think of things like Post-Traumatic Stress Disorder and then I reprove myself sharply. Surely PTSD is for people blown up while doing something valiant in a war. What right have I to it? I injured myself through wanton, druggy misadventure. But still, it could be there. I know little about it other than that it falls into that category of things one can experience without knowing it. I should be jubilant, shouldn't I? If someone walks into a room today and sees me in one of my armchairs, I look completely uninjured. The thing I wanted most - to 'pass' - I have to some extent achieved. I have lowered myself into the swimming pool over and over again and spent hours using resistance machines at the gym, and it has paid off. When I look at myself unclothed in a full-length mirror, I no longer flinch at the scarred, withered man-witch looking back. I am reasonably happy with the bright and lean thirty-nine-year-old with the kind, slightly sad smile. But I feel very alone and I'm not that jubilant at all. Because along with the ability to 'pass' (until someone sees me hobble from one part of a room to another and the game is up) comes a terrible isolation. People think I'm back to normal. And I don't know how to tell them that I'm not. First, the obvious stuff; everything hurts, every creak of movement. But it gets more complicated.

Every day, I spend time managing people's expectations. How to explain why I can't just sling my overnight things in a bag and come straight over for a spontaneous pyjama party? I would love to be able to leave the flat in five minutes. Instead, a maddeningly long check-list has to be put into action. How many catheters will I bring? Are we going to drink lots of coffee? And self-catheterisation is the least demeaning of the various acts I have to perform on myself because I don't work below the waist. If I told my friends about all the others, they'd think twice about shaking my hand, putting their arms around me or eating in my company. I don't want these lovely people to stop inviting me over, but I can only really handle the invitations that come 24 hours in advance. Oh, I know I am very lucky. The lower a spinal injury, the better. My legs move. And I do remind myself to think about those whose challenges far exceed mine because their spinal injury was higher up or classified as 'complete'. I met many such people when I was in hospital and a lot of them were much nicer than I am. I miss them.

So, jubilation may be rare but contentment and gratitude visit frequently. They just don't come for extended stays - they prefer fleeting ones. People are confused by seeing me walking with sticks one day and in a wheelchair the next. They think it's some sort of con. I've given up trying to explain that I'll be alternating between the two modes of transport for some time to come. I cannot walk unless I'm prepared for the all-day pain it will inflict and the fact that I won't be able to maintain it for long. Sometimes I'm happy to give it a go, others I'm not. I've given up explaining the buffers I have to put in between each activity, even if it's just changing a pillow case. My energy evaporates quickly and I have to be strict and use up my allowance mainly for swimming; it's still my best chance of getting better.

Spinal injury doesn't stint when it comes to dishing out indignities. I'm impotent and, for the first time since I was 15, completely celibate. The flesh-market is well and truly closed. Still, here at least, there are no expectations to be managed. I had lunch with someone who'd once been all over me at the merest opportunity. But my spinal injury, even at its most invisible in the restaurant, had rendered me a non-sexual entity to someone in whom I'd formerly prompted intense desire. That was very dispiriting. I try to look at it another way - might my spiritual development begin in earnest now that I'm not jumping into bed with anyone and everyone who asks? Or will I get to experience the adolescent rites of passage - holding hands in the cinema, going out on dates - that I missed out on because my teenage sex life was conducted in utter secrecy and involved immediate physical intimacy with a parade of nameless bodies of wildly varying attractiveness?

Back To Normal! Except Not. August, 2013

Photo: Charles Donovan

I'd never have guessed that looking normal was such a mixed blessing. When my brokenness was obvious from twenty paces, there was a consolation in not having to explain. And the camaraderie at The Royal National Orthopaedic Hospital is now a distant memory. Now, kindnesses often come my way from those who've in some way themselves been touched by 'invisible' ailments - depression, autism, ME, CFS, Fibromyalgia. I don't fall fully into the 'invisible' category. My injuries become fairly obvious once I start trying to move. But I now understand, more than ever, the kind of loneliness that a person can feel when their affliction is inconspicuous and treated with skepticism. Two weeks ago, I organised a party (completely informal, no nice invitations with raised ink) to which I invited only myself, a large amount of valium and some cheap fizzy wine. The results were appalling, causing considerable pain not just to myself but to my beloved parents and concerned friends.

I must try to strike a balance, to practice a form of positive thinking that doesn't involve pretending to be happy when I'm not. And there are worse things than having to manage the expectations of others. My spinal injury is no longer a novelty that gets me a gloriously full dance card the way it did at the start. But I can't succumb to a perverse wish to stay ill. I don't know the half of what is happening in my head. But I do know that what I'd love most is one day to find that I could walk just for the pleasure of walking, the way I used to. I have never fallen out of all-consuming love with the city of my birth and my favourite way to experience it has always been on foot, sometimes with dogs, sometimes alone. I'd like to walk from Regent's Park to Hyde Park to Green Park to St. James's and then dance for a bit.