Victoria Brignell celebrates her silver disability anniversary and explains why she wants to celebra
This year holds a special significance for me. June 1st will be the 25th anniversary of me becoming disabled. This raises the question – should I mark the anniversary in some way? And if so – how?
We mark all the other milestones in life – birthdays, weddings, retirements – so it would seem perverse to ignore my silver disability anniversary. No other event has had such a major impact on my life. When I look back over the years I’ve been around on this planet, I perhaps inevitably divide my existence into two sections called BC and AD – “Before being a Crip” and “After becoming Disabled”.
On the other hand, it’s not obvious what I should do to commemorate this date. There is no ready-made social ritual to fall back on. Despite the fact you can buy greetings cards for most occasions these days (exams, driving tests, illness, even divorce), there is a distinct lack of ‘disability anniversary’ cards. No supermarket sells a ‘disability anniversary’ cake. And if I held a party, my friends might think I was a bit weird (well, they probably think that anyway).
Nevertheless, I’m reluctant to let the day pass without marking it in some fashion. I want to seize this chance to celebrate – and yes, I do mean celebrate. On that day I became disabled I could quite easily have died. I was six years old and I underwent a lengthy, complex operation which could have killed me. But the fact is, I didn’t die. Twenty-five years later I’m still here. And in my opinion, that’s something worth celebrating.
Although I’ve now spent more than 80 per cent of my life as a wheelchair user, I have vivid memories of those first six years when I was able-bodied. I remember using the swings in the park and cycling around our back garden. I remember roller skating up and down our house’s long hallway and attempting (totally unsuccessfully) to hula-hoop in the kitchen. I remember building Lego houses (my parents still have them in the attic) and playing bowls with brightly coloured green and orange balls. And I remember climbing up the wall bars in PE lessons (apparently, I was a bit of a tom boy), and hitting a wooden block with a stick to make the noise of donkey’s hooves in my infant school’s nativity play. (My teacher presumably gave me this task having noticed my lack of theatrical ability).
Then, during a family holiday in Bognor Regis, I began to complain about a pain in my neck. Initially, the doctors thought I had a “minor orthopaedic problem” and prescribed physiotherapy, but the pain persisted. Several months later my parents spotted I was beginning to drag my feet as I walked. At this point the doctors realised it was something slightly more serious than a “minor orthopaedic problem”.
My GP, who was excellent throughout, arranged for me to be admitted to Great Ormond Street Hospital. We received the call that a bed had become available late one evening when I was already in my nightdress. Driving down the A12 in the dark, with my dad at the steering wheel, the normally-familiar trees beside the road appeared alien and sinister. Having finally arrived at our destination, I recall climbing out of the car and looking up at the hospital. Massive and forbidding, the building seemed to loom over me in a threatening fashion. A walk through endless corridors led to an eerily-quiet ward where a fat Afro-Caribbean nurse showed me a bed. Somehow I eventually managed to fall asleep, worn out by the strangeness and mystery of everything that was happening to me.
In the days that followed, a scan detected a tumour growing within the spinal cord in my neck. It’s particularly rare for a tumor to develop in this position. A doctor once told me that you probably stand more chance of winning The National Lottery than you do of becoming disabled in this way. (Trust me to hit the wrong jackpot). Luckily the tumour was benign but the only option was to remove it, despite the risks such an operation involved.
Naturally everything did not go according to plan. I am proud to say that I did not make life easy for the doctors. On the day scheduled for the operation, I went through the usual preparation and was then wheeled to the theatre on a trolley. The doctors already knew that I had the rare blood group, AB negative, but it was only after putting me under the anaesthetic that they discovered, firstly, that I had rare blood antibodies and, secondly, that they did not have that type of blood in stock. They had to bring me round again without having done anything. Apparently my consultant was not amused. On the second attempt, however, there were no unforeseen mishaps and the operation went ahead as planned. So it was that on June 1st 1983 my life underwent a revolution. I went to theatre as an able-bodied person and came back as a tetraplegic, paralysed from the neck down.
As far as I’m aware, nobody warned me in advance that that might happen. I don’t blame the staff. How do you explain to a six-year-old that in a few hours they might not be able to walk again? To be honest, it wouldn’t have made any difference if they had. Nothing they could have said would have adequately prepared me for what paralysis entails. Indeed, the operation was such an unusual one that the doctors themselves were unsure exactly what effect the operation would have on me.
Soon after the operation I developed breathing problems so the doctors gave me a tracheostomy and fixed me up to a ventilator. From what I can recall (and the squeamish amongst you might want to skip the rest of this paragraph), the tracheostomy involved making a hole into my windpipe. This hole was then kept open by a tube held in place by a strap around my neck. Every week or so this tube had to be changed, a highly uncomfortable procedure. Even now the thought of it makes me shudder. It was such a relief when the tracheostomy was finally removed six months later. Although it’s faded considerably, there is still a small scar on my neck where it used to be.
While I was in intensive care I wasn’t able to eat. Instead I was fed milk through a thin tube that had been installed up my nose. Feeling the cold fluid travelling through this tube up my nostril was a very weird sensation. Meanwhile, my mouth was kept moist by a special liquid that was wiped over my teeth. I wasn’t supposed to swallow it but I did anyway. Eventually I recovered enough to be allowed to eat solid food again. The nurses told me I could have any food I wanted. So what culinary delight did I choose? What exquisite dish did I ask for? A hamburger from a well-known fast food chain. Jamie Oliver would be horrified.
Another milestone in my recovery was reached when I ventured outside the hospital for the first time. Accompanied by two nurses, my mum, a portable ventilator, everything practically except the kitchen sink. I was pushed in a wheelchair to Coram Fields, a small park nearby. Although it was only a couple of streets away, the trip seemed to require as much meticulous planning as Operation Desert Storm.
I cannot praise highly enough the care I received from the GOSH nurses and doctors. Sometimes their devotion went far beyond the call of duty. One night, when I was having difficulty sleeping, the nurses on the ward decided to entertain me by performing an improvised play. Twenty-five years later I haven’t a clue what the plot was but I do know it involved a nurse pretending to be a tree! There were many other occasions like that when they showed genuine affection towards me. One nurse nicknamed me “bright eyes” (the only time in my life I’ve had a nickname). And for my seventh birthday, which occurred during my stay in GOSH, the staff involved in my treatment clubbed together and bought me a beautifully-illustrated hardback copy of Peter Pan (JM Barrie donated the royalties from the book to GOSH). They all wrote their names inside the front cover. This book is now one of my most treasured possessions.
In my parents’ photograph album there is a picture of me that was taken on my seventh birthday. I am lying in a hospital bed, surrounded by family and hospital staff. I’m thin, pale and wired up to a ventilator. To add to my troubles, I am suffering from a cold (something that’s a cause for concern with my weakened lungs). On a table is a cake in the shape of a cottage, with white icing for the walls and pink for the roof. I am smiling but the expression in my eyes gives away what I’m really feeling. Those eyes are saying, “Yes, I know it’s my birthday. Yes, I know I ought to be happy. But actually I feel dreadful and I don’t want to be here.”
How did I cope mentally with becoming disabled? How did I survive emotionally in GOSH? It’s widely believed that children are vulnerable and defenceless, and in physical terms they are. But psychologically children can be tougher than adults. Because I was only six, I didn’t understand what was happening to me. I couldn’t appreciate how ill I was and so I couldn’t worry about it. My ignorance protected me. I wasn’t in a position to make choices for myself and I didn’t question the choices other people were making around me. I just accepted what was done to me. It’s possible that I may even have assumed that my experience in GOSH was a standard part of the process of growing up.
Moreover, during those first months of my disabled life, because I was only six, I lived almost entirely in the present. I didn’t dwell on the past, on what had happened to me in the days before. Neither did I worry about the future and what the next days would bring. It was this ability to live ‘in the moment’ that helped me emotionally. Sadly, it’s an ability we lose as we grow older.
But the main reason I coped is because I had one or both of my parents around me the whole time. My Mum slept in the hospital, sometimes on a mattress in the ward and sometimes in the relatives’ accommodation elsewhere on the GOSH site. And my Dad’s employer was wonderful at giving him time off to visit me (and to look after my brother who was three at the time). It’s clear I owe my parents an immeasurable amount. If becoming disabled was difficult for me, it must have been even more traumatic for them. What went through their minds during the 10 hours I was in the operating theatre? I had the easy part – I was oblivious. But they were fully conscious throughout. Then, in the weeks, months and years afterwards, they had to stay strong while supporting and comforting me during some deeply unpleasant experiences. It’s important to recognise that my disability changed their lives as well as mine.
I’m glad I became disabled at the age I did. If you had to choose the ‘best’ age to become paraplegic then six is definitely the one to pick. I was old enough to retain the memory of what it is like to walk, yet also young enough to be able to adapt relatively easily to the drastic change in my circumstances. Having said that, I don’t want to give the impression that I came to terms with my disability as smoothly as a duck takes to water. There is one particular incident that sticks in my mind.
One day a charity fun fair visited the hospital, erecting rides in the courtyard. All the patients (or was it just the children who were unable to enjoy the rides?) were given a gift. The child in the bed opposite me received a stylish box set of pens of various types. I was presented with a miniature doll’s house. I was so upset not to be given the pens. I had always loved the physical action of writing and it seemed unfair that the pens weren’t mine. Of course, the charity workers probably thought it would be insensitive to give a child with paralysed hands a collection of pens. When this dawned on me, it made me resent my paralysis even more. My disability was unfair, life was unfair, everything was unfair! I had been through so much physical discomfort and yet it took a set of pens to spark off the most serious wave of self pity! Looking back, it’s almost comical in its irrationality.
My period in Great Ormond Street Hospital seems like another world now. My memories are hazy and disjointed. It feels unreal, like a dream. Sometimes I find it hard to believe that the very ill girl in intensive care and the woman who now works as a BBC radio producer are the same person. If I was hijacked by a time machine and suddenly transported back to 1983, what would my 31-year-old self say to that six-year-old girl lying in that hospital bed? What advice could I possibly give her? Well, it would probably be something like this: “In the years ahead, there will be times when you’ll cry so hard you will think you’re never going to stop. And there will be times when you will laugh so much, your cheeks will ache. So frankly, in its most fundamental terms, your life won’t be any different to anybody else’s. Just muddle through the best you can.”
On June 1st, even if I do nothing else, I will pause for a few moments to reflect on my life so far. They might be only a short distance apart, but for me it has been a long journey from Great Ormond Street to Broadcasting House. And it doesn’t matter that shops don’t sell a ‘disability anniversary’ cake. I will just buy a Doctor Who cake instead – and celebrate my survival by munching a chunk of the Tardis…