The Skin I’m In

Kings Rd 02

Every now and then I am reminded just how amazing and weird biology can be. Especially mine. A few days ago I was wheeling down a street in the Kings Road, during a shopping trip that broke my heart as what was once a street filled with the coolest of fashion is now just another chain store high street (even if the chains are a little more up market), and I hit a pot hole in the pavement. With the annoying habit that the laws of motion have on a person on wheels, when my chair stopped I did not. Luckily I did not fly out of my buggy into a crumpled heap, but I did twist my spine quite badly. I soon started to feel the pain of this little accident but as we were searching for a coffee, which would have allowed me to take a break from the discomfort of both the pain in my back and the sadness at passing yet another boring chain store, I soldiered on. We tried to visit the Bluebird Cafe but were royally ignored by their waiting staff in a blatant act of either discrimination or ignorance, and ended up scoffing a lovely creme slice and sipping a caramel latte at Patisserie Valerie in the sunshine. With no shopping for me but loads for Diane, which was also rather a downer on the spirits as I was hoping to do some serious spending, we ventured home. I spent the evening laying on sofa relaxing the old spine, hoping that my near crash hadn’t done too much damage.

It all seemed OK at first the next day, when we decided to take in some more of the unseasonal sunshine by wondering around our home town of Camden. As I smiled at the fact that Camden is one the few places in London that has resisted the onslaught of the big brand, I started to notice that my left leg was feeling weird. It felt like it was growing in length, gradually at first but it soon felt like it was huge. Only my left leg, which by now felt around double the length of my right one. If this wasn’t disconcerting enough, the weird felling began moving into my entire left side. By the time we were walking towards our flat I felt like my body was the shape of the hunchback of Notre Dame, with one really long leg and a huge left arm that was more muscley than three Popeyes. Of course I may have felt like this on the inside, but on the outside I looked just as normal… your standard Mik.

Why was I undergoing this bizarre transformation? Well one of the lesser known side effects of nerve damage is a change in sensation. Some people experience phantom pain, some experience sensation that comes and goes, some experience changes in the way their body feels, and some are like me and get the whole lot. This time I was being told by my brain that my body shaped nothing like reality, all thanks to the fact that the messages my skin was sending to my noggin were being scrambled and turned into QuasiMikdo somewhere on their journey up my spinal column. I cannot explain how strange it is to inhabit a body that can change it’s shape on an hourly basis but it can tick you off a bit at times.

What makes it more annoying for me is that through out my younger years I also fought with Bulimia, and even today I have issues with my mirror. I still see someone who could loose a stone or two, no matter how thin I get. I really learned how distorted my vision of myself is when I was very ill back in the early naughties. I kept loosing weight as my spine collapsed, causing pain that stopped me from sleeping for days on end. This pain meant I needed stronger and stronger pain medication, and the lack of sleep and drug induced haze meant that eating was the last thing on my mind. Within a few months I was thin, and few months after that my Mum was ringing my poor wife to check if I was OK, after she saw me on TV looking gaunt and skeletal. But did I see this sickly bag of bones? No, all I saw was someone who was finally approaching the weight I dreamed of being. It was only after living through this period and coming out the other side that led me to the much happier place I am now. Once I saw photos and video of myself looking so bad while remembering how happy I had been with my decreasing size, I began to shake the distorting glasses of body dysmorphia.

Typically this revelation led me to put on a pile of weight after my last surgery back in 2003, but I finally understood that I needed to find a healthy way of getting to the size I should be, but not the size I thought I should be. So I began a healthy eating campaign and over the last couple of years I created a menu full of all the things I need (and like, can’t cut out the choccy completely – that would be crazy) in sizes that have allowed me to get to a weight I like. I will never totally shake the disease and end my battle with Bulimia, but I am happy with a stalemate. I might see a huge fatty who needs to loose weight big time but I know that isn’t what the rest of world sees.

The key issue for me is when the two types of dysmorphia combine to create my own personal type of crazy. Every now and then the person I see in the mirror is matched by the person I feel through my skin, with both my eyes and my that pesky skin lying to me. But whatever I might see or feel, I try very hard to remember that it’s all just lies. I might not manage the perfect physique, with a six pack,  muscle definition and a tiny waist, but I don’t look too bad for a guy of 47 who beat cancer and two broken backs. Not bad at all.

As I write this I do wonder if I’m giving away just a little too much information, but if those of us who have these kind of problems don’t speak out about them, and explain that it is possible to live successfully with them, perhaps even beat them, then they just stay secret and hidden. I feel that being open about this kind of thing is important, so there you go. Isn’t that the point of blogs?

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"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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Past & Present Tense

I’ve had a crazy busy couple of weeks, so please forgive my lack of blogging. The craziness started when I took past in a creative workshop and performance of the fantastic new play by Mike Dibb called “Present Tense”. It is based on a short story by Celi Duran, and examines the lives of three people who have recently become spinally injured. The play is set in the late 1960’s in New York and is a really powerful piece. I won’t tell you all too much about the plot, as everyone involved is hoping it makes it to the stage. That way you can all come and see it without having me spoil it for you.

The weird thing is that working on a play about experiences that I had already been through reminded me of the journey of emotions that anyone coming to a disability has to embark on when they are given the big news. Although I have always been disabled, I did go through a spinal injury in my teens, and so found acting the part of someone newly disabled took me back to a time that I would rather forget. I hope that everyone who reads my blog knows that I am very proud of my disability and how it has shaped the person I am, a person I like (modest as usual). I know that without my disability, and all of the changes in ability that I have gone through I would not be who I am today. But I do tend to forget that it wasn’t an easy journey. Early on, just after my spinal injury, I couldn’t see a future for me at all. I was sure I would never find a lover or get married, had seen any chance of the career I wanted to pursue disappear and really felt that my life was over. I will admit I even considered suicide at a couple of points. I only stuck around as I still lived at home and thought it was unfair to leave the job of discovering me to my family.

Luckily, this reason for sticking around made me start to re-evaluate my life and future. I gave up on the steady job and family plans, and decided to just enjoy life. So began my crazy journey through the world of rock and roll, the media and some of the extreme things I have done. I look back on my life, and I’m only half way through, and know that I have lived the kind of life most able bodied people would be jealous of. One thing for sure, no one can say that my life has been the stereotypical idea of the life a disabled person would live.

The character that I played in Present Tense had a similar attitude towards coping with his disability as I had back then. If life threw something at me, instead of it getting me down or putting up with it I fought back. It started when I found I couldn’t go to my local cinema in a wheelchair. I contacted the manager and within a few weeks a wheelchair space had been installed and a new level entrance was created. This spurred me on an soon I was fighting the good fight everywhere. I even started building my own wheelchairs because the ones I was given on the NHS were crap. The Present Tense me also did this. By the end of the week, I really felt like I had got back in touch with the younger me and I felt somehow reinvigorated.

Which was lucky, as after the play finished I met up with Jennie Williams, who is about to start up a new charity called Enhance The UK (website going online soon). It is run by disabled people, and they plan to offer help, advice and friendship to other disabled people. Jennie sees it as a tool to allow disabled people to help other disabled people do… well anything really. Whether it is finding someone to go down the pub with, a buddy to scuba diving with, someone to chat with about any problems or a source of advice on the myriad of stuff that comes with a disability. I signed up to help, with issues around sex and relationships (way back in the early 90’s I did a load of stuff around this kind of thing on C4, and have wrote a few guide books and articles on sex and disability), confidence (say no more) and other stuff like access and rights. Hearing some of the stories of people that Jennie has met reminded me that even though Present Tense was set in 1960’s America, the experiences of the characters are still really relevant. Frighteningly so.

However much disabled people have gained rights and equality over the past 50 odd years, the actual experience of coming to a disability seems to have stayed the same. Mostly because the stereotypes of what being disabled is have stayed the same. No matter how many people like myself, Ade Adipetan, Shannon Murray, Julie Fernandez, Mat Fraser, Gary O’Donahue, Liz Carr etc seem to break the mold, the world still think that disability equals the end of your life. I have no real idea of how we change that, as it seems that however many positive role models of disabled people exist being disabled is seen as a totally negative thing.

One day we might enlighten the general public about disability, but the most important thing right now is making sure that disabled people feel OK about themselves. Becoming disabled is NOT the end of your life. It may be a change in the future you had planned, but it is the start of a new life that can actually end up being more fulfilling and enjoyable than the one you left behind. I know that the life I would have had without the my wheelchair would have been no where near as fantastic as the one I had with wheels. So watch out for the Enhance The UK website when it comes on line. It’s going to make a real difference. And keep your fingers crossed that Present Tense goes into production. Not only will you get to see me playing a hippy, but witness a piece that makes the audience question what they think about disability.

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