"Spinal Injury – The Cure That Wasn’t A Cure" or "Dude, Where’s My Feet Gone?"

Back in 2003 I had a series of surgeries to repair my damaged spine, which had been broken for a second time after a car accident four years earlier. As an unforeseen side effect of this surgery, where I had one of vertebrae replaced with a titanium ring and my spine reinforced with two long titanium rods, I regained much of my sensation and some of my motor function. Everyone was so blown away by this that they all got very excited about the possibility of me getting back up on my legs again. Before I could even begin to undergo the years of physiotherapy and the commitment that required, I needed to have at least two major surgeries to fix problems with my bones that have arisen from spending twenty five years as a full time wheelchair user. This was a major decision for me and when I chatted with a BBC mate of mine about it, a TV documentary followed. I must admit that I wasn’t really happy with the programme, mainly as they insisted on finding a load of people who desperately wanted to walk again in the name of balance, but Can Walk, Won’t Walk (as the Beeb decided it should be called) did raise some interesting issues. I did the usual publicity, appearing on Radio 4’s You and Yours, had an article in the Mail on Sunday and chatted on Breakfast TV about the whole escapade. Mainly as just about everyone out there was amazed that I decided to stick in the wheelchair.

But that story is old hat and not what I wanted to write about here. This is actually a follow up to the miracle cure story that everyone seemed so fascinated by. You see up until 2010-ish I did have nearly full sensation and tons of new motor function but then I slowly noticed that things had started to change. It started with issues around how my body felt. One day I would feel tall, and everything seemed normal, the next one of my legs felt really long while the other felt tiny. Then things got weirder. My right leg lost the sensation from my knee to my foot, but I could still feel my little foot which ended up feeling like it was floating somewhere below me. I also started to feel like my right side was shrinking, and this caused me to feel like I was twisting into an imaginary black hole that was sitting just off my right buttock. Trust me, if it’s hard to imagine that because it is just as hard to describe. It was just the strangest feeling and this is the best description I can manage.

It had already taken me years to get used to the way my body felt after the sensation came back, mainly as I was much taller than my brain expected. Over the years of paralysis my mind had created a body map that had filled in the numb empty bits, but had imagined me to be at least six inches shorter than I actually was. So when the feeling came back, I was suddenly miles bigger than my mind’s body map was expecting. It led to me loosing coordination for a while, and caused several accidents with knocking stuff over or crashing my wheelchair. My poor wife’s toes also bore the brunt. But slowly I got used to being six foot three, and that as fine. Almost as soon as I felt OK in my skin, the changes started to happen.

Recently I have been ill with an infection, and this was treated with strong antibiotics. Not only did these treat the original problem of infection but it had an effect on the sensation/motor function changes, which came back with a vengeance while I was being treated but are slowly disappearing now. This has allowed me to understand what has been going on. In the past, before the most recent surgery on my spine, most of my nerves were trapped in scar tissue and not damaged or severed. This caused them not to work as if they had been more seriously damaged, but once released they came back. However, any surgery causes scar tissue to form, and it is obvious that some has reformed around some of my nerves causing the recent changes in what works and what doesn’t. As scar tissue can become inflamed if you get a cold or flu, or an infection like I have been fighting for a while now (obviously longer than anyone knew), and this will cause the way those nerves work to change yet again. So if you combine the fact that scar tissue grows and forms over a long period and that recently it has been effected by other forces, the reason why the way my body works has changed from day to day, or even from hour to hour becomes clear.

So I am now in the position of not really knowing how I will be left in the future. I may find that things go back to the way they were in before 2010, or they may go back to pre-2003 or end up somewhere in between. I shall just have to wait and see. It’s like Christmas morning, not knowing what presents you’ll have. All I do know is that regaining so much sensation has not been the fantastic thing everyone else imagines it to be. I had got used to the body I had before 2003, and found learning to cope with full sensation very difficult. Let me explain why…

I’ll use the example of a bot bath, as I think that gives the best explanation. Anyone who can feel normally and who can walk will put a tentative foot into a bath and if it too hot they will pull it out quick time. I have not been able to that since I was fifteen years old. But with my feelings working better I can feel if the bath is burning me, but have no more ability to jump out of the bath. Do you see? I can feel the burn but can’t avoid it… unless I do the elbow test that I have had to do since going in the chair. The same goes for crashing into things in my chair. My poor feet look like someone has smashed them with a hammer sometimes, as I do tend to crash into doors and walls on occasion and my tootsies bare the brunt. But before I couldn’t feel them. Now I can, but can’t do anything to avoid the accident… other than be a better driver.

On top of the ability to feel pain without the ability to react to the cause, I also have problems with normal sensations that I had forgotten. Things like socks, that even now are so annoying to me that I spend all day trying to ignore the way they feel. I also keep getting woken up by the sheets laying on my legs, and if I sun bathe the wind through my toes is just SOOO freaky. Of course I was getting used to all of this but now these new sensations are coming and going so I have a new set of freakiness to get used to.

Now I thought I should explain why I wanted to put all of this online. Well, firstly I wanted to put something out there that follows up on the story of the “miracle cure” that the press jumped on and then forgot once I chose to stay in a wheelchair (oh boy they couldn’t work that out, but were very cross as that’s not a good story – Man Happy as Cripple is not the headline they wanted). But I also wanted there to be something online that might be found either by someone going through a spinal injury or by someone in the medical profession that explained how fluid the outcome of nerve damage can be. Even before my last operation, what worked and what didn’t had changed. Bits slowly came back for years after I came out of hospital as a paraplegic, and I found my right hip returned totally over ten years after my first injury in 1981. Nerves are slippery little buggers, and no one really knows if they are totally knackered or dormant and in shock. If they are in shock they might come back in a week, a month, a year, two years, five years, ten years or… never. You just don’t know.

That’s why I am so glad I made the decision I did around not even trying to walk again. Imagine how crappy I would have felt if I had undergone two more major operations and spent years in physio, fighting to get up on my legs, only to find that I then lost the ability to do it all thanks to new scar tissue forming. All I do know is that whatever the outcome of a spinal injury, and whatever might come back as the years go by, the best reaction is that you embrace it, and try to learn to love it. If stuff does come back, it’s gravy. If the stuff that came back goes away again, you’ve lost nothing. Personally I am actually happy that things seem to going back to the way they were pre-2003. I have never really got used to having full sensation without full function, and as things disappear I do not find myself mourning for what is going. Instead I aim to get on with whatever my body does in the future with a smile.

Now that’s news headline that you will never see… Cured Cripple Happy That Cure Goes Away! Tee hee.

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Pride… and Prejudice.

In my last blog I wanted to further explore some of the press I had done around my choices not to go ahead with trying to walk. I was shocked, and a little saddened by some of the replies and comments I received in reply to that blog.

The idea that disabled people can live lives that able bodied people might envy seemed to upset some disabled people. Yet surely the disability movement has spent years trying to get across the fact that disabled people deserve the same chances and rights as everyone else, and if given them disabled people would be able to experience life just the same as the able bodied. So why shouldn’t some able bodied people be envious of some disabled people? Disability is not a reason why anyone’s life will be less in some way.

Now of course many disabilities come with medical conditions. I have a spinal injury, and so am classed as Paraplegic, but the injury caused some nerves to be trapped in scar tissue. This leads to periods of chronic pain, and the pain killers I have had to take has led to problems with my digestive tract. These do disable me, but they are really ongoing medical conditions. Using a wheelchair will never make my life less that it would have been if I could walk. I think it is essential to make sure we understand the difference. I never wake up thinking “I wish I could walk” but I do wish “This pain would stop”. Yes, the pain is tied to the disability, but it is not the disability.

I hope that everyone agrees that disability as described by the social model is the way it should be viewed by society. So I am not disabled by my inability to walk, or by my pain or anything else but by the barriers put in my way by the larger society. It’s not being in a wheelchair that makes me disabled, but the steps into a building. That goes for all of us disabled people. In fact it goes for everyone. Everyone gets old, or sick. In a world that was shaped by the social model of disability and so was fully inclusive, many of the issues that they will face would not exist. It wouldn’t matter if they had trouble walking, or seeing or hearing, or needed a seat or whatever. The solutions would be built into every part of our daily life and the world we all lived in. Any medical issues would be just that. Separate and something to be treated.

At a time when the disabled, the elderly, and the poor are going to be a the sharp end of budget cuts, and when many people in society really believe that assisted suicide and mercy killing is a valid way to go, we disabled people must see that we need to be vocal. We need to shout how we are capable, and can experience anything we want to, if we are given the chance. We have to be proud of how we have got as far as we have, both as individuals and as a group. In 100 years we have fought to go from being shoved into institutions and pitied or feared, to living in the community and having a voice and shaping our own futures. We have made amazing strides forward and must keep on fighting to make sure we do not stumble and loose ground.

My story is a strange one, I admit. Not many disabled people have to make the choice I have recently, but as science advances more and more will. That decision will be up to the individual but I wanted to explain that being cured is not the answer to integrating disabled people. To integrate a minority, the answer is not to correct or eradicate the minority. If we go down that dark road then why not make gay people straight and black people white? Or just wipe them all out? Sounds familiar to me. Who tried that already?

No matter how much a disability, and it’s medical problems, effect your life, or how much you may sometimes feel that it gets too much, every disabled person on this planet has the ability to live the kind of life that would make able bodied people envious. We can find love, feel fulfilled and be happy. I know how few able bodied people manage to achieve that. Yes it can be a real struggle, but it is for everyone on this planet. It’s the extra barriers that are put in our way and the ignorance of what we can achieve that are the enemy, not our disabilities.

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