Now everyone my age has either gone back to University for the second year, started a course after a gap year or have a full-time job, people are beginning to question what I do with my life. Saying I’m a writer and speaking about bits I’m working on such as this blog doesn’t seem to be enough. That is evident from the patronising facial expressions and judgemental body language I receive. It’s easy to say don’t listen to others but when you get the feeling that you’re a drain on society everyday (encouraged by the Conservative party’s use of the word “scroungers”), it’s hard to feel anything but a waster.
The important fact that I wish everyone would understand, including certain members of my family, is that I didn’t choose to be disabled so this unemployed lifestyle (if you want to call it that) is not one I opted for. My condition simply means that I wouldn’t be able to cope physically and mentally with a job. This may sound as if I’m pulling out the sympathy card and that’s why I don’t start explaining that I can’t work when asked. No one is more gutted with those three words than me. Just over a year ago, I had big plans for a future career in the media but my Friedreich’s Ataxia has got worse and I’m not the same person.
Some people with Ataxia do work but the crucial thing to remember in life, not just disability, is that everyone’s different. Degenerative conditions such as FA are by their very nature changing all the time so no two suffers are exactly the same. Last year, I had way more energy but now simple tasks such as having conversations take it out of me (hence why I don’t speak much). Going to the gym is another example of where I struggle afterwards. A session usually wipes me out of action for the next day. This week again illustrates why I can’t work. Twice I’ve had to wake at 8AM (not early to a normal person) and by 11AM, cannot keep my eyes open.
Yesterday, I was reading through my Arsenal membership details and noticed that my occupation read indefinite wheelchair user. At first, I laughed but then thought about how true that was. Having a disability is like having a bad job. Most of the time, you cannot stand it and depression can set in. Occasionally, it is bearable and you accept that it is a part of life. People look down their nose at you even though it’s the last place you want to be. The final piece in my analogy is that it doesn’t seem to be hard work but it drains you physically and emotionally.
I hope that makes it clear why I don’t have a job and can only write blog posts such as the one you’ve just read or this opinionated piece on Jack Wilshere: http://fansviewpoint.com/oh-jack/
Admit it, you missed my Premier League predictions last week but I can happily say that it’s back and so is proper football: http://fansviewpoint.com/premier-predictions-8/
Bye for now!