Am I really prepared?
I try to convince myself
When I found I had inherited Ehlers-Danloss syndrome I was at a loss. I had no idea what it was, or the implications for my life. Once I found out what the syndrome was, and how it would come to dominate my life - I tried to accept the news and move on with my life as best I could. I wasn't going to sit and mope about losing mobility, I was going to do as much as I could before the inevitable day arrived, when I would be wheelchair bound.
One of the main issues involved with EDS is muscle deterioration. The muscles around the joints don't support the joints, as a result they are put under more strain than they would normally be accustomed to.
Four years ago when my left tendon snapped I was offered the opportunity of an operation to repair the tendon. Although the injury is known as a career-killer in the world of support. I couldn't have the operation because another condition I have linked to EDS is my poor skin quality - I scar terribly - and the surgeons were concerned the operation might cause more issues than it would solve. At best the operation has a 6% success rate, after all once an elastic band is snapped no matter what you do - it's only a matter of time before it tears again. With my health issues, I didn't even get the 6%.
My left calf muscle is now just below the knee, as there is no tendon pulling the muscle down. Other aspects concerned with my declining health include an enormous increase in the amount of night cramps I get and a worry that my left leg will fail me soon.
Down the years
Over the past ten years, I've accepted my end - or have I? It is one thing to prepare for the day, and another to realise the day is here. I had considered getting a powered wheelchair, but my life has changed so much in the last decade. I no longer go on trips to gigs in Cheltenham, or to festivals in this area. Not only because I'm disabled, but because my life, finances and various other factors haven't permitted the luxury.
Sure, I'm upset at losing the opportunity to do some of the things I always wanted to do, I always wanted to visit Warwick, Worcester, Cardiff and go back to revisit Southampton to name a few places I missed visiting but I had the opportunity to visit many I hadn't planned on like Lac La Biche, Alberta, Canada.
I can't and I won't complain
In the long run, I can't complain, after all the original injury to my tendon was done during my days in the Royal Air Force, over 35 years ago.
In these days when most people are too scared to open their mouth for fear of upsetting someone, and names get altered. I have no problem with being classed as disabled, it is far easier than saying I'm mobility-challenged. For many years I didn't class myself as disabled, not through ego-related issues, I just didn't class myself because I was able to propel myself - all be it slowly.