Alisha Lee writes of her struggle to be a regular 16 year old in a world where rules and negative attitudes are some of her greatest barriers.
I am 16 years old and live in Ontario, Canada and have congenital muscular dystrophy. I know it will happen [death] to me earlier than to a regular person. In 2005 I had to get a tracheotomy. I’m on the ventilator all night because when I sleep my muscles relax to the point where I’m inhaling but I’m not exhaling. During the day, if I’m really upset or my meds aren’t working, I can’t breathe so I am on it all day. I can still go to school because the battery lasts eight hours. I can still talk when I’m using the ventilator. I’m limited in the use of my hands, but I can do a little – like I can use my iPod, which is really good. I use my laptop through something called DrivePoint. I use the joystick on my chair to navigate the mouse and click on what I want. There’s an onscreen keyboard and I have to click each letter. It’s slow but I feel lucky to have it. My wheelchair is electric. If I didn’t have it, I would need someone to push me everywhere, which I would hate.
For Alisha’s full letter, please click here.
