Just to confirm, I am not asleep while typing this post. I had to say that because a lot of people will see me and think that I’m either struggling to stay awake or have overdosed on sedatives. Yes, I do have fatigue issues and get tired easily but that has nothing to do with my dopey look. Friedreich’s Ataxia affects most muscles in my body, including ones above the eyebrows that lift my eyelids. This means I have this permanent shattered expression even when I have just woke up. Even when I physically lift them, they soon revert to the half closed position.
The doctor’s have discussed the possibility of performing surgery but I’m not willing to go down that route yet. My sight is not affected by these drooping lids (except I find it difficult to use binoculars) so it’s only a cosmetic issue at the moment. I’m not really too bothered about how I look, I just thought I’d explain in case anyone ever wondered. So when we are talking and I look like I’m falling asleep, it’s not necessarily because you are boring me. Most times, I look drowsy because of FA but those who understand my condition probably already realise that.
When someone comments that I look exhausted, I just shrug and agree because I can’t be bothered to explain that I always look like this. Mind you, I’d love to see someone’s face if the answer I gave was “it’s because I’m disabled”. That would soon shut them up. Like all things that ‘Wheelchair Boy’ encounters, people mistaking my Ptosis (the official term that doctors use) for me sitting up all night watching T.V. boils down to ignorance and a lack of knowledge. I mean only an idiot would go up to a Chinese person for example and say “you look tired” just after they’ve woke up. So why do it to me? Isn’t it obvious it’s linked to my condition?
Bye for now!