Cured By Mistake… The truth behind the headlines

In this months Disability Now magazine I have an article that focuses on what happened to me after my last spinal surgery in 2003 (Choosing To Sit Tight, DN issue 34 P45) and since it came out I have had a lot of interest from various publications wanting to know follow up on the story. However I found that many people did not really understand what the article was about. So I felt I should fully explain.

It all started in 1999, when I was involved in a major car accident. The accident left me with a damaged shoulder, which when you’re a wheelchair user can be a real hassle, as well as an increasing problem with back pain. After a few years of examinations, the surgical team at the RNOH Stanmore discovered that I had broken my back. Of course as I was already Paraplegic it was quite hard to spot. My spinal had been left in state after it had collapsed back in 1981, so it was understandable that the new damage was so hard to find. The break was vertical too, and not the usual horizontal type. So my spine was slowly collapsing on itself. This as causing all the pain, as well as changes in the bits that did function below the original break. It took a further year or two before a surgeon decided he would try to fix the break. So in 2003 I had a 15 hour operation, where my surgeon (Mr Ben Taylor) removed one of my vertebrae and replaced it with a titanium ring, and supported my spine with two titanium rods that run from the bottom of my rib cage to the top of my hips. During the surgery Mr Taylor also removed any old scar tissue and used a new technique to ensure much less new scar tissue formed after the op.

After six months on bed rest I got up to find that I had regained feeling in my legs. Ever since I had woken up six months earlier I had been worried about weird sensations where I thought my legs should be, and as soon as put my feet on the floor after so long in bed I discovered that I could feel again when I felt the floor under my once numb feet. Slowly I noticed movement coming back too. As it became clear that something had happened during my surgery that had allowed nerves to come back, the discussions began about walking again. It wasn’t going to be like you see in the movies or in the soaps, and after a few weeks in the physiotherapy rooms I would be up and walking. No I needed a series of surgeries to replace my right hip, that had been damaged during one of my 1981 operations, as well as a replacement knee and ankle, as they had poor bone density caused by over 20 years in a wheelchair. Even after all that I would probably need to spend nearly a decade in physiotherapy to get my muscles back to full strength. So I would be around 50 before I might be able to walk. And it was just a might. With all this to go through just to get out of my chair I turned it all down. Most people in my life were totally freaked out by this decision, except my wife. She knew how much I felt that if I did go ahead I was being a traitor to other disabled people, and we both didn’t see the point of going through so much to see if I might walk.

Now this is where the story in DN, and the BBC TV documentary, Can Walk, Won’t Walk, ended. But there is much more to finding that nerves that have been dead for years now work. Not only do most people who hear what has happened find the idea hard to believe, but they also don’t understand that after so long as a Paraplegic your body adapts to it’s new way of working. To expect it to go back to working as it was indented quickly is fool hardy. In fact there have been many times in the last 7 years when I wished I was still the way I was before the op.

You see getting back your feeling is OK, but the thing I feel most regularly is pain. The hip that is damaged hurts all the time, so does my permanently fractured right ankle. I got that joining in with PE at school when I was 14. It had healed but broke again during the years in my chair. So that’s a broken ankle and dislocated hip. All day, every day. Then there’s strains, pulls and injured toes, when I smash in to walls and doors, which all wheelchair users do from time to time. The most maddening thing is that I now can feel some functions that are normally ignored by your brain. Things like food passing through my guts. Sounds weird, but I guess that bits of my middle had lost feeling, and now it’s come back my brain isn’t used to filtering it out. And of course the spasms your get with an injured spine now hurt like hell too. As well as all that, I also have a real problem with the way my body feels. My left leg feels really long, as I am six foot three, but my right leg feels tiny. They are almost the same length, but the body map your brain creates has decided that they are different lengths. So being cured had caused me tons of pain, and a body that feels like Quaimodo’s. Great. Oh, and I can feel how numb my arse gets sitting in a wheelchair all day.

This is what annoys me about those people who go on about curing Paraplegia. Unless they find a way of fixing it just after the injury, it isn’t just a case of making nerves work again. There are a pile of other things that need putting right too. Surely there should be equal focus on making the world a more accessible place, and making society see disability as just part of life’s rich tapestry. I am sure that most people who have had a spinal injury for quite a while would find themselves in a similar position to me. Yeah it sounds great, and I am sure many people dream of a cure, but the reality can be more of a nightmare.

At the end of the day, I have spent all of my life being at the cutting edge of medicine. Many times I have had experimental surgeries or treatments and know that in time they lead to great things. While some of the elements of my surgery may lead to ways of fixing spinal injury in the future, they are a long way off yet. Trust me.

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3 thoughts on “Cured By Mistake… The truth behind the headlines

  • I don’t get why being able to walk again would mean you’re being a traitor to other disabled people. I can understand your other reasons though and that’s fair enough.

    I’m disabled and can’t walk thru getting polio as a baby (50 yrs ago). I’d love it if I could be able bodied and walk. I don’t see anything great about being disabled at all and as I didn’t create my disability am definitely not proud of it. I’m proud of things I’ve achieved in life despite my disability. And I’m also proud that I don’t define myself by my disability. I’m me first, the disability thing is purely physical.

  • Dear Lizziski,

    Disability isn’t just a physical thing. It shapes who we are, how we think and the lives we live. I am proud of my disability as it made me who I am, and I am proud of that. It has given me experiences that no able bodied person would have and let me become a different person than the one I would have been if I wasn’t disabled. I know that prefer to be who I am now, and that is why I am proud of being disabled.
    Too many disabled people still want to be able bodied and that is why I feel that tying to walk again would have let down my disabled fellows. I wanted to show how strong and proud we are of who we are. To conform to the stereotype of wanting to be cured can only reinforce the attitudes of society. I want the world to know how strong we are, and as someone in the media I felt it was important to not only make a stand but to explain it.
    At the end of the day, however much we would like to be seen as people first, all the time we live in world that focuses on what is wrong with us we will be seen as disabled first.
    I suppose I might have been over thinking the whole thing. It’s what happens when you get politically active. Whatever I hope you agree that showing the world that not everyone wants to be cured, that being cured isn’t that easy and that disabled people can be live very happily is important.

  • MAN,with those odds, not being cured is a no-brainer! Who likes pain?! Well, some people do, but nice girls like me don’t talk about people like them! 😉 (believe that, believe anything!)

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