Saturday, 31 March 2012

"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.

Friday, 30 March 2012

Reasons to get yourself to this show!

I have just got back from attending the fantastic Graeae musical Reasons To Be Cheerful, and had a great night. It's a great show and I can't recommend it too highly. In fact I wish I could be in it, although trying to remember all of Ian Dury's lyrics might be a bit beyond me! I have already written a few reviews of the show, so I will just say "Get yourself to this show ASAP!" They are playing at the Hackney Empire until Sunday and then move on to the Nottingham Playhouse from the 3rd to the 7th.

Do yourself a favour, it's one not to miss.

Sunday, 11 March 2012

Travelogue 2 - Penzance, Cornwall

As promised, here is piece about my recent trip to Penzance down in Cornwall. You would never believe it from the photos, but Diane and I made our most recent visit in February. During the long drive, and at over five hours it can be a bit of an endurance test, we both noticed that as we got nearer to our destination spring had sprung much sooner in the South West. Typically it rained for the entire drive down there, but the trees had green shoots on them and the already green grass at the road side was filled with Daffodils. However bad the drive can be, letting the train take the strain can be worse. Last time we tried it it took over seven hours, and the disabled toilet was broken. Not the most fun I have had ever had. But I did not plan to make this an article on my dislike of public transport.

It is funny, but as we got closer to our destination we both started to feel more relaxed. We began visiting this part of the world when Diane's Mother and Step Father moved there. During our first visit I fell so in love with the place that I stated talking about moving there, causing much panic for my city girl wife. But I do still love the place. It's beautiful and rugged, with a relaxed attitude towards life. There is also a fantastic artistic and creative community. On top of that, property is much cheaper that here in London, but then I suppose there aren't many places where it's more expensive. Maybe living on the moon. Of course it's more the travel costs involved with commuting when you live on the moon than the cost of the moon base. So as our journey ended and St. Michael's Mount came into view the journey was all but forgotten, other than my very numb bum.

As we booked into our hotel, The Queens on the sea front, it kind of felt like coming home. It exudes a feeling of warm comfort that wraps around you like a blanket. It's a typical seaside hotel built during the Victorian expansion of the railways, and has loads of original historic features. The staff are fantastic. Really friendly and helpful, and a stay there does kind of feel like you are staying with family. Just family who have to do there best to make your stay pleasurable. So nothing like family really, but you get the gist.

Our room was lovely. We always request a sea view, as it is a must when staying here. Every time we've stayed our room has been large, very clean and a real joy to come back to. This time our room was even bigger than normal, with a gorgeous Art Nouveau brass fire place and a massive comfortable bed. The bathroom was large too, and I could easily get round our accommodation in my rather large wheelchair. I do think I should mention that none of the rooms have been fully adapted for wheelchairs. There are no handrails, and the rooms have baths and not wheel in showers, but I personally prefer that. I have always found that retro fitting older hotels for wheelchair access tends to be a hit and miss process and there is nothing worse that badly considered adaptations. Who needs handrails at the wrong height that are fitted badly, or sinks that are too low for anyone to use without getting their feet wet? I understand that this means some disabled people would find the Queens a little difficult, but I would still advise you to give it a try. I also know that there are other hotels nearby that do have full access.

One of the key benefits to having a sea view is waking up in the morning with the sun shining into the room, which really sets you up for the day. We ordered breakfast in our room on the first morning of our stay, which is a bit of ritual. Sitting there, scoffing toast, croissant and muesli while drinking fresh coffee with the beautiful vista outside your window is just sublime. Even in February, the blazing sun made our room so hot we needed to open the window and it's was warm outside! As soon as we had stuffed ourselves, we got ready to go for a walk along the promenade outside the hotel. It's one of the key reasons why Penzance suits us. It has a long and very flat promenade, that run from Mousehole, a little fishing village next to Penzance, all the way to the town centre. This is pretty rare in Cornwall. We have visited other places on our trips and they tend to mould themselves to fit the rugged contours of this area. Beautiful but not exactly wheelchair friendly. Penzance itself is still pretty hilly, but they are at least manageable. We once went to St. Ives, but found we couldn't get out of the car. This artistic tourist trap is built on the side of cliff, and so the roads are so steep that unless you are lucky enough to be able to park in the small number of blue badge bays on the sea front, you can forget it if you use a wheelchair like me. It actually felt like something from a comedy show, as we sat parked at an angle that could have been used to launch us into space trying to work out how we get the chair out of the car, and more importantly how we would ever get back into it. Cutting our visit short, we made our excuses and left driving, back to the safety of Penzance.

Diane and I have decided not go travelling this stay, instead we wanted to unwind and just enjoy Penzance. As well as seeing the relatives, of course. There is something that lifts the soul about a walk by the sea, with the bracing wind blowing through your hair on a gorgeous sunny early spring day. If you combine this with amazing views out to sea, and the fact that from Penzance you can see that arc of land that runs from Lizard Point to past Mousehole (which is truly beautiful and is such a large area that you can watch the weather rolling in off the sea) and I must admit I started dreaming of moving down there all over again. After wondering the sea front, we made a left turn next to hotel and fought our way up the hill. One thing for sure, if we did ever move there I would get even bigger muscles very quickly. Either that or a jet powered wheelchair. Now Penzance isn't all wine and roses for us wheelies. As well as some of the steep hills, the pavements are a little lumpy, and not all the shops are accessible. But it is pretty good, for a town with so many historic buildings. I personally found my campaigning head getting all passionate but I have enough battles in my home town to take on the access issues of a place that far away. If any locals want some advice, drop me a line.

Diane really wanted to visit a shop she loves, Mash, that does amazing women's clothes. After our obligatory shopping, we wandered the high street, stopped for a coffee and then used the handy lift in the Wharfside Sopping Centre that leads back down the promenade. Nice. Once back in our room, we relaxed and got ready to go for dinner with Diane's Mum and Step Dad. We met in the bar and then went onto Baba Indian Resturant just down the road from the hotel. All I can say is yummy. Just the perfect mix of traditional Indian restaurant feel with up to date modern cooking. We haven't been there before but it will now become a requisite of future trips. Always the way, find a great Indian restaurant that is a five hour motorway drive away from where you live. After a delicious meal, we went back to our room. Waking from a great night's sleep, which is amazing for me who finds sleep a real chore, we were full of beans and very relaxed. We went down for breakfast and then got ready for the drive home. One last wander down the seafront and we hit the road. It is always the low point of a trip to Penzance, leaving. We promised ourselves that next time we stay it would be for longer.

So if you've never been, I would definitely advise a visit to Penzance. If you want to just unwind it is perfect, but there are also loads of activities to do down there to. While we packed someone was waterski-ing in the bay for instance. Whatever you fancy, Penzance is great place and it is also a fantastic base to see the rest of this beautiful part of the world. We love it, and just writing this has made start thinking of booking another trip there soon.

Thursday, 8 March 2012

Sill Ill

What a crazy month March has turned out to be. I had planned to write my second travelogue, about a recent weekend away in Penzance, but I will save that for later. Instead I wanted to write something about why March has not been a high point of 2012 for me so far. Last week I attended a conference for Disabled Workers up in Manchester, and gave a speech about my experiences in the media. I think it went over well, and it was great to meet so many committed and passionate disabled people, all keen to help each other ensure that the work place is a friendly and accessible place for all. While I was there I started feeling a bit unwell, and when I got back home this continued. By the start of this week I felt very, very unwell and went off to visit my GP.

It transpires I have a serious infection. Now over the past few years I have been treated for a pressure sore, which it turns out was actually this infection in it's early stages, so I think you can all guess where my infection is. Yes I have a gammy bum. Nice. I was given antibiotics and told to rest. By Wednesday this week I was feeling even worse and so I went off the the local A&E. The whole experience really showed how much the medical profession still see disability through the medical model. Obvious I suppose, but it does lead to some serious mistakes. I mean my GP has been treating me for a pressure sore for ages, as wheelchair users get pressure sores, and didn't even think that it might be something totally unrelated to my disability that could be easily cured by some pills. At the A&E I found myself trying to explain to a series of doctors that I could feel parts of a lower regions, I had full use of my bladder and bowl and that my condition was a very rare. I am one a very small group of people to have survived the cancer I had as a baby, and the treatment I had led to side effects that effected even fewer people. Like just me. So all of their experience of wheelchair users, and paraplegia is useless when dealing with me. Of course try to make doctors understand this is next to impossible. How can a patient know more about medicine than they do?

But before I go off down the road of another rant about doctors and disability, I must stop myself. For this is not what I wanted this blog to be about. Instead I wanted to talk about the way I am feeling while I lay in bed, pumped full of super strong antibiotics watching day time TV. All this feeling ill, being unable to do anything while all your plans unravel took me back to how I felt as a teenager when my back collapsed. I spent nine months in hospital, three of them in a terminal ward (as the doctors were sure my cancer had returned and I would soon be checking out - I hope this goes some way to explaining my deep mistrust of the medical profession, but I assure there are many more mistakes and misdiagnoses to go towards that explanation). While in this ward of death almost everyone of my fellow ward mates died, some in very unpleasant circumstances. Not the kind of thing a teenage boy normally has to deal with, especially as I was sure I would be joining them in the morgue fairly soon. While I laid there waiting to meet the grim reaper, I listed all the things I would never do. Dye my hair, go to a night club, and of course.... have sex. So when I was told not to worry, and I only had a knackered spine that would stop my walking and disco dancing for ever, I was very.... very relieved.

I then promised myself to live life as if every day was my last. And boy did I? I have had the kind of life that most non disabled people could only dream of, and I have built some superb memories to look back on next time I am expecting a visitor from Mr Reaper. But recently I have found myself worrying about stuff, and trying to create a secure future for me and my lovely wife. You know, grown up stuff that can suck the joy out of life in a major way. If you add that to all the worry that this crazy government and it's even crazier policies on disability have brought to bare on most disabled people's lives and I have really lost that joy for life. But as I lay in bed, either boiling hot or freezing cold as my body fights this damned infection, I find myself remembering the goal I had in my teens. Sod the Tories and their drive to force disabled people to either swim or sink, screaming, and the fact the place where I live seems to get a little less accessible every time I go out. However much the world seems to view disabled people as a drain on societies coffers, who unreasonably demand equal access to the world around us even if it means altering historic buildings (sorry but I am currently in a battle with a Camden preservation body about ensuring wheelchair access to the local canal and "heritage features" have become dirty words in my house), life is too short for all this arse.

Instead I must seize the day, and enjoy my time on this planet. Of course that doesn't mean I shouldn't fight for a better world. Just make sure I enjoy the fight, and really enjoy the successes. I know that I have won some serious fights here in Camden over access and am now taking this experiences to the wider country. But I must remember to enjoy the process and the outcome. I must also remember not to let the bastards grind me down. If I get turned away from a building for being a fire hazard I must not let it ruin my day... or night. Instead I must just go elsewhere, have a great time... and then enjoy suing the people that turned me away. Whatever the issue or barrier, I must stop seeing them as a reason to get down. No they are a joyous thing, something to fight against and a fight to win. And if I don't win, then sod them yet again. Not only will I not be going there again, but neither will my mates and family, and I'll write a stinking article about them for this blog.

I think it is the one thing that can give us disabled people a clearer view on life. Once you've tasted how precious life is, the drive to enjoy becomes stronger. Yes it can also make the injustices we face cut deeper, but maybe it will drive us all shout louder against those injustices. All I know is that now I understand that once I am well again I plan to try to enjoy every minute of my life, whatever is thrown at me. So come on life, give it your best shot.

PS. My wife has just quipped that her pain in the arse now has a pain in the arse. That's why I love her.