Some people have it worse than me.

So i was listening to Tim Minchin the other day and for some reason “Some people have it worse than I” really resonated with me. Apart from being funny and clever it made me consider my life and has inspired me to try to put into words various thoughts i have. (All quotes Copyright of Tim Minchin).

Please forgive me if this is self-indulgent diatribe.

My life is pretty shit
But I know I shouldn't whinge about it
I could be a Palestinian
Driving buses on the Gaza strip
Yeah how bad can it be?
Some people have it worse than me
I could be a child prostitute
Or Gary Glitter's family
I have no right to cry
Some people have it worse than I
I could be a thalidomide kid
With something in my eye

This section is the part that has stirred numerous feelings I have about my life. I suppose I should start by saying I have FSH Muscular Dystrophy. Even saying that is hard for me because I don’t want to be defined by something I have no control over. But I am defined by it because it’s obvious (and you met me recently, you probably don’t remember but you would if you saw me again). People see the muscle wasting and the lack of facial expression and immediately judge me as mentally ‘not there’. People are surprised to find I have a career, a car, a mortgage, interests and passions. And why not? I see myself as a ‘normal’ person trapped inside a body I can’t control and I’m still trying to find my peace with it.

My life, on a grand scale, is pretty good. I have friends, a great family, money, freedom, I’m not completely unfortunate looking, I am grateful I had a great education and went to Uni. I have travelled the world and seen more things than many people have. People do have it a lot worse than me. I’m a Samaritan so I should know. I’m not homeless or abused or starving. I’m not genuinely afraid for my life or persecuted for my beliefs.

And yet I spend too much time not happy, and I feel guilty for that. I don’t want or expect pity but I am seen as the ‘thalidomide kid with something in my eye’. But that is society’s fault. I know everyone wants a ‘happy healthy baby’ but what if you don’t get that? Does that automatically make you a failure as a person? I’ve always had to fight harder and set myself higher standards to compete in the ‘normal’ world. But what is my alternative? I fight, and I am strong.

That still didn’t stop people encouraging my parents to try to ‘cure’ me. Osteopaths, (how can head massage and manipulation fix mutated DNA?), or the Evangelical faith healer. That was a truly terrifying experience for a seven year old, renouncing Satan and asking Jesus to forgive me in a room of ‘miracles’ of people being healed. It’s not my parent’s fault; they were just trying to do their best. Hence, my disbelief in alternative medicine and blind faith in Jesus and God. God didn’t make me this way, skipping sequences in pre-DNA did. I’m mutated in a bad way; I’m the mirror of Tony the Fish. But I digress.

Whenever I have a bad day I try to concentrate on the positive. The days I don’t know whether I can face ‘the horror of another fucking day’, whether by pain or circumstance, I do. Feeling sorry for myself is not going to help so I might as well do something productive, and if I feel the same at the end of the day at least I have done something. And I just find the appropriate Tim Minchin song and that makes me smile, how can you not listen to ‘Prejudice’ and not smile?

So this has turned into introspective ramblings, and I’m sorry for that.

So my life isn’t so bad, if only I can get people to realise that, and I’ll keep trying not to hate myself. I’ve never really put any of these feelings into words before and it’s interesting to see what I have ended up with.

They say the biggest mistake is giving up. That true strength exists in the will to keep trying. Keep hoping things get better. Keep reminding yourself of all you have accomplished. Keep everything in perspective. Keep up the fight. Because at the end of the day, that’s what you’re left with. The knowledge that you did your best, that you’ll wake up tomorrow and try again.