Tuesday, 18 June 2013


Yesterday, I spoke about how I now accept my disability but that hasn’t always been the case. This denial has had many adverse affects on my life such as confidence issues. It wasn’t overnight or anything but since leaving school last summer, I’ve become more mature and feel life is better from a personal point of view. It was almost as if I was living a lie for years because I failed to come to terms with having Friedreich’s Ataxia. Now, I’ve took the handbrake off (to steal a phrase from Arsene Wenger) and can move forward.

Being 9, I didn’t really understand fully what the diagnosis meant (that’s probably quite patronising to the younger version of me) apart from the fact that I’d end up as a ‘Wheelchair Boy’ in the future. Even as I grew up, I still didn’t grasp the concept of me being disabled. It’s not that I completely buried my head in the sand; I just couldn’t for the life of me accept the reality in all its entirety. On one hand, I realised I needed a wheelchair yet would still get out and move into a seat (just to appear normal) even though there was a serious danger of falling.

Another example of me rejecting the truth and in hindsight, acting in a ridiculous manner is my headrest on my electric wheelchair. I feel embarrassed for saying this but I used to ask my parents to take my headrest off when I got out of the car because it ‘looked too disabled’. What does that even mean? I am disabled for crying out loud! I just didn’t want to make that concession. It’s sort of like being an addict; denial only makes life harder but once you admit the problem to yourself, everything else becomes easier.

I’ve been able to think in detail about my condition and rationalise what being disabled means for me personally. This in turn has meant that I’m ready to take on the various challenges that are thrown at me because I’ve finally settled a dispute in my mind.  This is one less thing for me to think about and obsess over.

I know that I’m disabled and that’s all that matters. If people don’t like that, they can jog on (something I’d like to do but have accepted is now impossible).

Bye for now!

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