Today I woke up in a very reflective mood.
Disability, MS and me. I have spent the whole day thinking about it and trying to make some sense of it. Now it’s time to share those thoughts.
When I was first told I had Multiple Sclerosis, over thirty years ago, I was terrified. I was twenty-four years old, straight out of university, just starting out on being a proper grown-up, with my whole life ahead of me. Then I was hit by a medical bombshell. My world, the world as I knew it, collapsed around me. MS was something I knew very little about. I had vaguely heard of it but, what it meant for me, was a complete unknown. The only thing I really knew was that there had been a woman, in the village where I had grown up, who’d had it. She couldn’t walk, she didn’t go out much, she had used a wheelchair and she had died. That was it.
And now I had it too. Here it was, slapping me in the face. Suddenly it was part of me. It was real. All too real. My life, my future.
What it meant was something I would have to consider, and fast.
Initially I spent a fair bit of time feeling very sorry for myself. I asked my long-suffering GP a whole load of self-pitying questions and then, as the internet wasn’t really a thing thirty years ago, I went to the library to do some research. What was this thing that had got me in it’s claws and what could I do about it? The answer appeared to be, not a lot. Unlike today, I didn’t find any ‘uplifting’ biographies written by fellow MSers or friendly support groups to pass on advice and information about dealing with the disease, just dry medical tomes which told me little about what to do and how to live, just what was probably in store for me further on down the line and it wasn’t very cheerful.
In other words, not a lot of help.
So that was when I made a decision. I was going to carry on carrying on. That was what my beloved Grandfather would have told me to do so that was what I would do. What choice did I have? Either I could get on with my life and fight or I could give up and despair.
And that wasn’t me.
Some people may have said that I was burying my head, not being realistic and just hiding but I don’t think I was. I was a young woman with a whole load of life ahead of me and I was going to do my best to enjoy it.
I moved down to London, found a job, had a family and carried on. At first, and for several years, the MS didn’t affect me much. Sure, over time my walking became affected and things got a little harder but I coped. Then I was offered and accepted a temporary job with a local disability group. And that was when my new life really started. I got to meet other people with a host of different impairments, I learnt about the world of disabled people, I found out about all the support groups that were available and I got involved with proper activism for the first time.
Over the subsequent twenty years, whilst the MS got worse, my life has got better and better. I have been involved with some incredible things. I have been to some fantastic places, I have made some very special friends that I would never have got to know otherwise. I have done a post-graduate Law qualification, I have started writing and, through it all, I’ve enjoyed myself and had a good time. All things I might not have done if I hadn’t become become disabled and been given the opportunity and the tools to learn to live with it.
The life I have now is very different from the life I might have had if I hadn’t become ill but, whether I would have enjoyed it as much if it hadn’t happened, is something I will never know. All I can truly say is, thanks to my MS I have become the person I am today and I am grateful for it.
I live it, I feel it, I own it. Bring it on!