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.