WHO AM I

I’m not defined by my disability, but I am by my reaction to it. In general I believe that I’ve coped quite well with the physical, and many of the emotional and mental aspects of my illness. With some difficulty and with lots help, I’ve learned to adapt to the ever changing symptoms as they developed.

From the day that I was diagnosed with having MS, I’ve spoken with my health professionals and read as much as I could on the subject, and so was prepared for many of the subsequent problems that arose, though being prepared for something, and experiencing it, are two very different things.

What I didn’t expect, and came as a complete bombshell, was how drastically my personality would change. Before my diagnosis, I had an easy going very positive outlook, I saw silver linings everywhere, and my glass was most definitely half full. Now every cloud is a supercell thunderstorm in the making, my glass is emptying rapidly, and the little that’s left inside is very bitter to the taste. I have become a mirror image of myself, from a person whose friends would describe as, wearing rose coloured glasses, to one who is blinkered to anything positive. Every new symptom, increase in pain, fatigue, and even financial worries, have all had an effect on me. By far the biggest effect on my personality however, is that MS is a progressive disease, meaning my future will be a continuing downward slope, over which I have little or no control. I can't help but feel that an important part of me has been stolen away, like a character from The Body Snatchers, taken over by an alien while I slept. This change has not only been dramatic, but happened very quickly when taken in the context of the rest of my adult life.

That inability to influence the outcome of a major part of my life, has reminded me of something I’ve always been aware of, but failed to fully appreciate, that ultimately everyone is subject to any number of outside forces that could fundamentally affect the course of their lives. My former belief that the world is basically a hopeful place, if not wrong, was naive. For many people the world is a very difficult place, and no amount of positive, or for that matter, negative thinking will change that.

I hope none of this reads like a self-indulgent rant. I know that I can be prone to that on occasion, or that I think everything is doom and gloom, far from it. There is much in my life that’s very good right now, and I still look forward to many things. It’s meant to be an honest attempt to put into words some of the debates I’ve been having with myself lately, and what, if anything I can do about it.

Even if I could jump into the TARDIS and go back in time, it would not change any of the facts. I would still have MS, and still be facing an unsure future. If I want that future to be as comfortable as I can make it, then I must decide what my priorities are. I think it is time for me to see myself and the world as they are, and not what I would like them to be. If that means accepting that I am a very different man to the one that walked into that doctor's office before my diagnosis then so be it. I should not see that as a weakness, but as an opportunity to re-energize my efforts in those areas of my life where I can still make a difference. Worrying about whether I'm an optimist or pessimist, and things I cannot change, is a waste of time and energy, that would be better spent on what is really important.

And so, let me introduce myself. I’m Steve, a grumpy old man who has MS.

I'm off now, to listen to, The Dark Side of The Moon, but this time without any sadness or sense of loss, just an appreciation of its brilliance, and if that goes well, I might even try some Leonard Cohen, or Mazzy Star. (I'm feeling brave).