How do you like dese tragedy?

Posted on August 28, 2012 by Mik Scarlet

Right, it seems that the entire media wants to focus on the tragedy of the disabled, whether we have managed to triumph over it or not. I have always been against this kind of coverage but it seems that people who agree with me are being ignored. So if everyone out there wants to hear the tragedies of disabled people I intend to be on that band wagon. (I do hope you getting the irony here… it doesn’t always work in the written medium)

So where shall I begin? Well at the beginning I suppose. I was born in 1965 to Michael and Joyce McGrath (pictured above). They had been trying to have kids for three years and were overjoyed when they found they had fallen pregnant. When I was born my Dad ran round my home town of Luton shouting with joy, hugging strangers and handing out cigars. But as soon as I came home they began to worry. I just would not stop crying. Nurses and doctors visited and told my Mum she was a panicky parent. This went on for five weeks. Just screaming and screaming. Then I went quiet. My parents rushed me to an aunt who was an ex-nurse and she said something was wrong… very wrong. They took me to hospital and it was soon discovered I had cancer. It was in fact an Adrenal Neuroblastoma, which even today is very difficult to beat. I was extremely lucky, as my surgeon had just read about an experimental drug that was being trialled and he applied to have me put on the trial. So with a major surgery, radical radiotherapy and this new chemotherapy, which lasted for five years, I now faced an uncertain future. In fact my [parents were told not to expect me to live long. “Go home and enjoy the time you have left with him” my Mum was told.

So home I went. That’s me with my Mum, all ill but very loved. I didn’t die though. Obviously. In fact I went from strength to strength. There were hick ups. I got two huge sores on my feet, which nearly killed me with infection, and I broke my right leg almost in half, while trying to pick up a train that I was playing with – kind of forgot I couldn’t walk that well – but when I got to the age of five my parents were told he is in remission. Cancer free. I had a future at last. At which point my Father died, from a heart attack. My Mum had a nervous breakdown and life sort of fell apart. My Dad’s parents were awful, and our lives were thrown into turmoil yet again. My brother came out worst. My Mum had to spend so much time looking after me that Steve had kind of become Dad’s kid. So when Dad suddenly disappeared he couldn’t understand what had happened. Mum tried to explain, but he was so little the “Dad is with Jesus” didn’t help much. So the great news of my beating the big C didn’t matter much once Dad was gone.

I started school and was immediately bullied for being the limpy kid. I fought back, but as anyone who has been the target of the bully knows it’s not fun. When I was eight, my Mum remarried. Now I will admit that by now both Steve and me were horribly spoilt kids, but our new Step Dad was… let’s say very strict. As he is still around I won’t go into it all too deeply, but it wasn’t much fun. But time passed as it does and I was soon nearing an age where I could protect myself. But at the age of fifteen my spine collapsed. It actually happened at Wembley Arena at the farewell gig of my hero Gary Numan. I had great seats, in the fifth row, but had to remove myself to the back as the pain was unbearable. I somehow managed to get myself home and fell into bed. The next day I arose early as it was the day of my German O Level (no I did not spend the night studying – I was a Numanoid!) but when I tried to get out of bed I collapsed into a heap on the floor.

Oh, this is the last picture I had of me standing up. I’m in the middle, with my Mum and brother Steve. Anyway, I was still sent to school in a cab, but when I arrived I collapsed again and was rushed to hospital. While I was there I was told I was dying as I had cancer again. But no it was actually a huge spinal collapse, caused by a side effect of my experimental chemo as a baby. After two major operations (14 and 15 hours), two bouts of MRSA and one heart attack on the operating table I spent nine months in hospital only to leave in a wheelchair. No one told me at this time I wouldn’t walk again, and so I spent three years fighting to get back on my legs. After this time I went to my surgeon to say I was giving up, only to be told I never had any chance but they didn’t tell me that as they didn’t want to depress me. Nice.

Now at this point I feel I should stop. I could go on about being in an abusive relationship for years, or my second broken back just as my career was taking off, just over ten years ago, that nearly killed me and has left me in chronic pain, but I actually want to examine that fact that while this might be read as a list of tragedy it all led me to be the person I am today. And I like who I am, so everything that has happened is must be a good thing. To always go on about how becoming disabled is a tragedy means that nothing good can come of it, and to make anyone disabled who succeeds triumphant means that those who are having a hard time coming to terms with it must be lacking something that those super humans (dig, dig C4) have in spades.

All I know is that my disability has shaped my life hugely, and has allowed me to have experiences that most non-disabled people can only dream of. I have been a TV star, toured with Gary Numan, and lived a rock and roll lifestyle second to none. I then met and later married the girl of my dreams, someone so amazing that she cared for me while I recovered from my second broken back and even made it fun. Yes she made six months on bed rest fun. It may sound weird but I know part of what she loves in me is the person I am because of my disability and so for that, if nothing else, I refuse to see any tragedy in anything illness or disability that has entered my life.

But I could easily make my life a list of one awful event after another. I could have then made a big deal of how brave I’d been to triumph over the crap cards life had dealt me. And the media would have lapped it up, but I just cannot. Instead I will say what I have always said… Disability was the making of me. It set me free and allowed me to live a life that I wouldn’t give up for a second. Not for legs that work, not for being in tip top health, not even if I could fly. My disability is super positive element in my life, and I just wish that the media would focus on how positive being disabled can be. Just once would be nice.

So as you watch the stream of stories over this Paralympic period, try not to be sucked into the feeling that everyone has in some way beaten the worst thing that could ever happen to them. I mean if they weren’t disabled they wouldn’t be at the games, they’d be at home watching them on the TV and missing out on the chance to represent their country in a global sporting event. Disability can be a positive thing and if more people believed this then if it ever came into their lives they might be able to cope better, recover quicker and rebuild their life to become better than it was pre-disability.

Right got that off my chest. I’m currently dying my hair ready for the Paralympic Opening Ceremonies tomorrow. Got to look good, even if I am one of 4000. If you see a red head in a chair who is out of time… it’s probably me!

Good news: Big Smiles and No More Mr Grumpy!?

Posted on July 2, 2012 by Mik Scarlet

Baby Mik, during my treatment for cancer – the spiky hair was caused by the chemo!

Today has been a good day. This morning I had an appointment with a surgeon, who gave me the great news that I don’t have cancer! “What’s this?” I hear you say. Yes, for the past few years have been suffering the joys of undergoing a series of tests to find out if I had the big C. I don’t want to go into what the symptoms were that gave rise to this need to check whether the disease that I beat as child had reared it’s ugly head again, but anyone out there who has had Mr Cancer come to stay in the hotel that is their body will know that from the moment you are given the all clear and Mr C has been evicted, you live with the fear that this unwanted guest may return at some point in the future.

The bastard thing about cancer is that you are never told “You’re cured”. Instead you are in remission, and even though I was given that news so long ago (41 years ago when I was only 5) that I don’t remember it happening the fact that the disease that is so feared by everyone might come back haunts my every waking hour… and some times my dreams too. I am sure this is the same for other members of the cancer survivors club. Every time you feel ill or have a strange pain you become terrified that the cancer is back. I know I have spent my adult life thinking that any cough, twinge or cramp is the first sign of another battle with my bodies inability to reproduce it’s cells. I must admit that it has made me a bit of a hypochondriac, if a quiet one. No, instead of vocalizing my worries I quietly pop off to the GP’s and get myself checked out. Of course the fact that I have beaten cancer already tends to make them panic a little too and the tests start over again.

The annoying thing for me is that every time I have a major issue with my health, such as my spinal collapse when I was 15 or my recent spinal hassles after my car accident in 1999, my surgical team get really panicky and send me off for a series of “routine” tests, as if I don’t know what is going on. Nothing sets off alarm bells like surgeons being secretive. When I was 15 I was actually told that my cancer had returned and I was going to die. After spending 24 hours laying in bed thinking of all the things I’d never get to do, my chief surgeon popped by to tell me there’d been a mistake and I didn’t have a tumour. I know that this experience really effected the person I became and made me enjoy my life, but it also forced me to face what it might feel like if the cancer ever did return. So every time I get the feeling that something is wrong, I relive that day. Of course I do it alone, as admitting what is going on would be admitting weakness would it?

I am so obsessed with keeping my fears quiet that even my lovely wife didn’t appreciate my feelings and so as I sat waiting to get the results this morning I ended up snapping at her about why I was so grumpy recently. This is why I am writing this. I feel so crappy about being Mr Grumpy that I felt I should put out there the feelings that I am sure many other cancer survivors carry with them, and tell the world that those of us who have beat the C can, on occasion, be right moody. I know that over the last few years, and many other times in the past, I have been a right unbearable git on and off. Short tempered with a short fuse. At the minute I am rehearsing for a role in the Paralympic opening ceremonies and I have not been the joy to work with I would have hoped to have been. Of course everyone would totally understand if only I told them what was going on, but that is just not part of the process. Not only does anyone hate the idea of being thought of as ill or weak, but it’s especially difficult if you still don’t know what tomorrow might bring. It’s just you have that “feeling” that something is wrong and everything else seems to get on your nerves. You really are forced to appreciate your mortality way too regularly and this makes everything that impacts on your life unacceptable. Thus your ability to cope and patience disappears. All that happens is you annoy everyone around you and come across as a totally f**k head.

So with today’s news I feel I should apologise to my wife and anyone else who has been at the sharp end of my moodiness through out my life. It might sound like an excuse, but I know that I feel like a weight has been lifted off my shoulders today and I hope to be a happier, smilier person from now on. Well as happy and smiley as a git like me can be. I hope you can forgive me if I did have my grumpy hat on in the past? I promise to try harder next time I get the fear, but don’t hate me if I don’t manage it. My past track record doesn’t give much hope I feel.

To anyone else out there who is going through this at the minute, whether you are waiting for results or know someone who is, I wish you well.

Not going to take it sitting down!

Posted on January 28, 2011 by Mik Scarlet

I haven’t written a blog recently as my wife and I had some very sad news early this week. Unfortunately, at the weekend my wife’s father, Lenny Rodgie, died. He was a great bloke, and he is going to be sadly missed.

I always felt I had met a kindred spirit in Lenny. He also was disabled, with epilepsy, but had gone to mainstream schools, got married and had three fantastic daughters, one of whom I was lucky enough to marry. Whatever the expectation of him was, he seemed to ignore it and lived what most people would call a “normal” life. I know that his influence means that my wife, Diane, understands me better than anyone I have ever known, and I thank him for that.

I know he had to fight every step of the way in his life, against the ignorance of the public about epilepsy, and was a huge campaigner on the issues faced by epileptics. As he epilepsy meant he had every type of fit known to science (in fact he was key to them discovering a few new types too), he was always being poked about by doctors and surgeons, and allowed himself to be experimented on through out his life. Not only in the hope of controlling his own epilepsy, but in case he could help others who had his condition. He even allowed himself to be filmed many times, even while having fits, as he felt it was important to let people, especially the medical profession, see what happens.

I know he hoped that the world would grow to understand and accept people with his disability, yet as he got older I think everyone who knew him could see the fact that things did not seem to change effected him. When he was young if he had a fit in Camden, where he lived for his whole life, people would help him but not make too bigger deal of it all. Gradually he kept coming out of his fits to find himself in hospital, with all of his clothes cut off him. Now finding yourself in hospital is always a bummer but as he knew that most times after a fit he was going to be fine, the whole situation really got him down. Worse than this, he started to find himself treated as an old drunk. Many people he met took his slurred speech, caused by a mixture of the strong drugs he was given and the damage his fits caused to his brain, as a sign of alcohol abuse and treated him appallingly. Not only people in the street, but those in authority, such as the police. At times this really effected him, and made those of us who knew him very angry. When he got sad or down, he would tell us stories of how he been discriminated against in his life. Once while staying at a B&B, he had been made to eat his breakfast in a cupboard, as the owner felt seeing him have a fit might effect the other guests. He had lost count of the number of times he been sacked for having a fit, with one job only lasting a few minutes. He was never really housed in suitable housing, and when he died he was still waiting to have a shower fitted in his latest flat, even though having a bath was highly dangerous for him. Yet, through his work with the Epileptics Society and the people he met there, he would always tell us how lucky he was to live independently, and what a great life he had had.

So, when I heard he had died I found myself filling with a fuming rage. I know that I always thought that by the time I was in my forties, as I am now, that the world would be a very different place to the one I grew up in. The thought that the guy who fathered my wonderful wife had died still waiting to be seen as an equal in the society he lived in, really hurt. The fact that he still found himself being made to feel second best, that he had to fight to get things he was entitled to, and that he still dreamed of being cured so he could be “normal” made the tragedy of his death even greater.

I only have 17 years until I am the age he was when he died, and I know that I refuse to take the slow pace of change any more. I don’t know quite what I plan to do about it yet, but I hope you all agree with me that we cannot go on with this “slowly, slowly catchy monkey” approach that seems the rage at present. I know that I want a disabled child who is born today, to grown up in world where disability is “normal”. They should be hit their 17th birthday, in a world where they have had all the chances they would have had if they had been born able bodied, and live in world that is totally accessible to them and where inclusion and equality is so natural that everyone doesn’t even have to think about them. We cannot allow cost, or time, or difficulty to be used as an excuse to slow or stop those changes any more.

We have a really long way to go, but we must get there. Not only for ourselves and future generations, but for all those great people, like Lenny Rodgie, who died while we were on the journey.