Dear Diary….

To everyone that reads my blog, I have decided to change what I use it for. You see I have lust landed a post of columnist for the new magazine PosAbility and kind of want to keep a lot of the stuff I would have once blogged about for publication. Instead I thought I’d turn this blog into a diary type affair. Of course there’ll be comment, as nothing can stop me moaning, but with a more personal edge.

2012 started off as a weird year. I spent most of the festive season struck down with a succession of illnesses. While most were just the standard Man Flu stuff, I also spent most of Xmas reeling from one of the fun elements of my disability. I don’t know how many of you agree with me, but I know I have always been amazed at how little information you get from the medical profession when you are disabled. I have always found that if I had been informed about what the future might hold for me thanks to the effects of my disability I might have made different choices. Ever since I a baby, the treatment I had for my cancer has been effecting my body but I have never been told in advance what might be coming. I understand that not many people survive cancer for as long as I have, and that being used as a guinea pig for a new treatment as I was means that no one really has any idea of what is around the corner but it would have been nice to have been given a vague hint of what might be possible. Take my spinal collapse when I was 15 for example. Only after it collapsed did my medical team inform me that they were planning to fix the issue with my back, but they wanted to wait until I had taken my exams. My spine collapsed on the day of my first exam, my German O Level. Now if I or my family were included in this decision, and I am sure we would have preferred to have my back fixed. Especially as I ended up having to go back a year to take my exams anyway… oh and I got a present of paraplegia out of their choice to wait too.

As I get older I find that other issues are coming up from the radiotherapy and chemotherapy I had as a baby, on top of the usual getting old crap. They are nothing too terrible at the minute, but they do mean I have to keep an eye on things as I rush towards old age. I know that many of them could have been lessened if I had known about what my future held when I was younger. Mainly as I might have changed the way I lived and thus have had some kind of control over my body. It’s funny but I have always been obsessed with controlling my body, so I know I would have been obsessive about looking after myself. I mean I am now a tea total, non smoker, who eats healthy and tries to exercise all in an effort to ensure I am in control of my body, yet when I was younger I can only describe my lifestyle as… unhealthy… very unhealthy! I admit I had a pile of fun and am not sure I would have wanted to miss out on what a good time I had. However it would have been nice to know not only the obvious issues I was dicing with but to also have known the problems I might have been causing that were special to being me. Then no one is to blame for whatever happens except myself.

Of course, this is all a bit self indulgent. I am one lucky little sod really as I beat cancer and a really nasty one too. Neuroblastoma is a real pig of a tumour, and I am one very few people who have beaten. OK that number is growing, with a large amount of help from the Neuroblastoma Society. They fund research into finding a cure and give help and support for families going through treatment. I am a patron and working with them really made me realise how lucky I really am.

Having said that, I have also had some annoying experiences around access so far this year that demonstrate how far disabled people have to go in this society. The first thing that happened was I have been asked to leave a local campaigning group after I insisted that access was as important as other local issues. It is a collection of local interest groups all giving their opinion on a new development where I live in Camden. I don’t want go into it too much but on many occasions I have found that my attempts to make people understand that access cannot be bolted onto buildings as an after thought, but needs to run through a design from the ground up, have been met with hostility. Mainly as many of the other people in the group had their own areas of interest. The people who were interested in heritage seemed to be especially upset by my fight to make Camden more accessible. I have never understood why heritage and preservation bodies find the idea of making changes to improve access so sacrilegious. They seem to imagine that the only way to make somewhere more accessible is to destroy their precious heritage, and do not care that maintaining it at any cost leads one section of our society to be left out in the cold and may even not be able to experience or witness the heritage at all. But whatever the individual group’s area of interest, surely access should be of interest to all of them? I know there are methods to allow all of us to work together in such a way that we can all get what we want. Sadly I shall no longer be part of this group, but will continue to fight for a more accessible Camden. At the minute Camden is a very inaccessible place, and I will not rest until it gets better.

I realised just how inaccessible the world can be for disabled people this week, when I attended the funeral of my mate’s father. It was held at the same place as my Dad is buried, so I went up early to visit my Dad’s grave. However I could not get to it, as it was in an corner of the cemetery that I couldn’t get to without pulling a wheelie over other people’s graves. Something I felt I couldn’t do, partly out of respect and partly for my own safety. So instead I had to ask my wife to take a photo of the headstone to allow me to see it. I haven’t seen it since I went into my chair, 31 years ago. As I sat there in the freezing cold, trying to look at a photo on my wife’s smart phone it really hit home just how far away an inclusive world still is.

Anyway, here is that picture. That way not only can I look at it whenever I want, but so can members of our family who are spread all over the world.


That’s all for now, until next month,

Mik

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Thoughts on a birthday 2

Three days before my 46th birthday I found myself over come with a strange sensation. A kind of down feeling, combined with a yearning to know where I was going with my life. As the big day approached, the feeling got stronger and as I awoke on August 18th I really thought “Oh wow, here comes my mid-life crisis!”. I must admit I do hope it is that, as if nothing else it means, thanks to the elegance of maths, that I will live to be 92. As I got used to being another year older, and entering the tale end of my 40’s, the feeling lessened but it is still there. Insecurity about how to proceed with my life. Not anything massive of course. I am very lucky that I have wonderful wife, who I love dearly, and am returning to full health after a really crappy 10 years where I seemed to fall to bits. More a need to examine what path to take from here.

I think it may be the fact that I am feeling healthy again is at the core of all this. After spending so long fighting to recover from my car accident in 1999, and then a further injury at work shortly after as well as the massive surgery I had to have to fix the damage that the car crash caused, I have forgotten what “healthy” feels like. There is a strange unwillingness to believe that I won’t suddenly fall apart again, even though I know this is really unlikely. I know that I had a similar period when I went into my chair back in 1981. Once you’ve had something so major happen to you, you stop trusting your body and it’s ability to take what is thrown at it. Now I have two broken spines, all the surgery and the change in the way the old body works, it is even harder to trust it to stay together. I keep hearing the words of Scotty from Star Trek, “She can’t take much more Captain”. But I must remember that I am the Captain of my body.

My wife always laughs at my relationship with my body. I am not so much a part of it, but more a separate entity that is forced to live within it. More than that, it is not a friendly place. In fact it is more at constant battle with me. I have to order it to do what I want, and it does not always follow those orders. And it fights back, the little bugger. I imagine that anyone able bodied (or non-disabled as I am told is the correct terminolgoy) could never understand what I mean. The best description I can come up with is it’s a bit like driving a crappy car. Years ago I had a Mini Metro that was such a boat. The automatic gear box had a mind of it’s own, the brakes were useless and one time the steering wheel fell off, another the front wheel. Yes the front wheel. Yet I managed to get that car to deliver me to my destination for three years before it was sent to the scrap heap. That’s what it feels like sometimes to be me. The funny thing is I can’t begin to imagine what it must feel like not to live this way.

So maybe it isn’t this that is causing my mid-life moment. The real driving force behind it is the fact that as I am now healthy I want to get back into my field of work. Before I got ill my media career was in full swing. I was returning from a very successful meeting about a new show when I had my accident. Sadly breaking my back for a second time made me too ill to work, and so nothing happened. The problem is that now I am ready to go back the media is not ready for me. I have been told I might be a bit old (followed by don’t quote me on that) and that my old punky image is working against me, hence the new natural look (see new picture left). Another big reason is that there are so many more new young disabled people wanting to work in the media. New talent is the life blood of the media world, and I am no longer that. That’s cool, and I really want there to be more new disabled faces on our TVs and voice coming out of our radios, I just wish I could still be one of those faces… new or not. If my time has come where should I go now? I don’t really want to give up on a career I enjoyed and was good at, but if I continue will I just end up a bitter old has been? More of a bitter old has been?!

I have tried to find real employment, but being an ex-TV presenter works against me there too. Over 20 years as a freelance broadcaster and journalist gives you many skills, but little proof of them. Also the modern view of a presenter is it is an easy job. When I started you had to write scripts or ad lib as you went, and third takes where pretty much out so you had to get it right. You also had to be fantastic with people. Interviews went so much easier if you could put the interviewee at ease and help them through the process while remembering what your producer wanted to get in the can. As well as the obvious skills, I learned to write scripts and reports, research people and stories, manage finances… the list goes on. Yet time and time again, I find that I am told I am not experienced or qualified enough for the position I am applying for.

The funny thing is that when I started writing this blog it seemed really important that I did, but now I have got this far I see that is rubbish. It doesn’t matter where I go from here. By just asking the question I am starting out a new. I don’t know what the future holds for me, but the again who does? I know more than most that the Pet Shop Boys lyric, “Just when you least expect it, just what you least expect” is one the truest things ever written. I am happy, healthy and the captain of my own, if crappy body, and I will decide what tomorrow holds. So watch out world, Mik Scarlet is back.

Who needs therapy when you have the internet eh? That saved me some money… think I’ll go shopping. That always cheers me up!

(Having read this back, I am shocked at what a like of self indulgent navel gazing this blog is. But hey this is the internet. One of it’s major roles is to allow the world to waffle on about stuff as if it really maters.)

PS – for fun try to count the number of film, TV and music quotes in this blog.

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