Muscular Dystrophy and Me

In less than twenty years, the riddle will be solved. Not how to cure it, but to understand how it works. How it can skip generations and affect one in seventy thousand people. For myotonic MD, it’s caused by a fault on chromosome 19a. Pretty dull stuff really. The interesting part is how it has affected me, and my life.

There are different categories of disability. One is acquired at birth. For such a person, they have not had the experience of a ‘normal life’. Another category is when some important body mechanism fails, and results in disability. That person has memory of her life before, and undergoes a period of grieving, for the ability she has lost, and the different quality of life she has to get used to. This is the same for another category, the accident victim. Substance abuse can often lead to disability, especially tobacco smoking. Psychiatriatic illness is also characterised as a disability.
Some of these categories can be healed, to varying degrees, and may restore some semblance of normality (whatever that is).

In my case I was diagnosed with late onset myotonic muscular dystrophy when I was forty-four. This was totally unexpected – out of the blue. As I learned more about MD, I began to understand that ‘late onset” was a bit of a misnomer. I was born with it, and had had it all my life. I could see that throughout my life there were ‘markers’ that certainly no one noticed, and only became apparent to me through hindsight. One of these, which still cause me problems today, is learning difficulty.
This has sometimes been confused with mental ability, by researchers who bring their reputation into question by such assertions. I manage most tasks, including computer skills by having hands on experience. Theory usually doesn’t sink in, unless I can use it practically. This is not true of conceptual ability, in that I usually excel.

At forty-four, I could still ride my bicycle for a few years, but eventually the myotonia made braking problematical. Also the advent of cheap Japanese cars made our roads unsafe. For a few months I had noticed I became unusually tired. With the diagnosis, I knew there was no option.I was forced to close my business, and having no savings, went onto unemployment benefits.
The thing about MD is that there is no prognosis. Every individual has different problems, different rates of degeneration (it is a progressive disability), and no one can tell you what is coming up. You reach a plateau for a while, and then notice that there is another problem limiting you.

Psychologically I was in a bit of a mess. I began to have insights into my life. My unsocial nature was not because I was anti-social; it was because I wasn’t normal. My friends put it down to eccentricity, but they were unusual too.

I had the opportunity to go to university to continue my arts degree, but this time on my terms, and at a university where the staff actually liked pupils. I saw the disability adviser. She was a sweet lady who typed with a Braille typewriter. She arranged for me to take just two subjects a term and take then fulltime i.e. in the daytime. Also she advised my tutors that I was to be given unlimited time to finish my projects, which were usually essays. I did well and graduated in 1995.
Those three years gave me time to come to terms with my new life. I had a new body that I was still learning about, but it was cool. I did my grieving about how I had lost all the muscle tone I was proud of (even though I had always been skinny). I used to have boundless energy. I cycled from Sydney to Darwin, then all over Japan. When I wasn’t riding my bike, I would jog for hours until I got bored, but I never got tired. I didn’t have undue concern that while my legs were strong, my upper body was thin and I had no biceps to speak of. No amount of doctors and naturopaths could explain that. To add insult to injury, I started losing my hair. My thick mass of curls, which I hadn’t cut since I was nineteen, was slowly falling out. Slowly I grew out of my mood of ‘quiet desperation’. I had enjoyed uni. While my fellow pupils were young (and cute) and really very bright, I had on my side life experience. I liked writing essays about philosophical issues, and developed my own style of writing which I polished with my creative writing course. I wrote a radio play that was generally panned, but the head of school loved it and laughed his head off.

It’s funny that what was once incomprehensible, and would have filled me with fear and loathing, has become a life that I embrace. I am a much nicer person. I have met the love of my life. I’m living below the poverty line, but I am rich. I wouldn’t change a thing.