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who I am, part one of many
May. 14th, 2009 12:14 pmI tend to make occasional, and sometimes oblique, references to my physical condition, to being disabled, to being in a wheelchair, to mobility restrictions. And anyone who's met me IRL knows that I'm disabled, even if they don't know how or why. But I forget, sometimes, that not everyone knows what's up. That my disability is not as blindingly obvious on the internets as it is in meatspace. That even the people who see me regularly don't live with what I have, don't know it as intimately.
So.
A startlingly high percentage of the people working with Dreamwidth have Weird Medical Shit going on. I ... am one of those.
The condition I have is called Fibrodysplasia Ossificans Progressiva. (Well, usually, it's just called FOP, because three letters is easier than thirty-five.) This is a long complicated name that is actually relatively descriptive of the disease: muscle, and tendons, turning to bone progressively.
( fun details )
As an example of what FOP looks like, I give you Harry, the official FOP skeleton:
(The details of bone formation varies individualistically. The general effect doesn't.)
Like I said. Fun tiemz. \o/
(I've been staring at this entry for three days and not making much progress, so I think that's all for now. Though I will mention that if you have spare money and are looking for a worthy cause to donate it to, please feel free to donate to IFOPA, which funds research and support for the FOP community. I can give you my RL name if you want to reference it in the donation, though that isn't required. It's not as well-known or wide-reaching as organizations for breast cancer research, or heart disease, or starving children in other countries, or what have you; but that doesn't make it any less important.)
So.
A startlingly high percentage of the people working with Dreamwidth have Weird Medical Shit going on. I ... am one of those.
The condition I have is called Fibrodysplasia Ossificans Progressiva. (Well, usually, it's just called FOP, because three letters is easier than thirty-five.) This is a long complicated name that is actually relatively descriptive of the disease: muscle, and tendons, turning to bone progressively.
( fun details )
As an example of what FOP looks like, I give you Harry, the official FOP skeleton:
(The details of bone formation varies individualistically. The general effect doesn't.)
Like I said. Fun tiemz. \o/
(I've been staring at this entry for three days and not making much progress, so I think that's all for now. Though I will mention that if you have spare money and are looking for a worthy cause to donate it to, please feel free to donate to IFOPA, which funds research and support for the FOP community. I can give you my RL name if you want to reference it in the donation, though that isn't required. It's not as well-known or wide-reaching as organizations for breast cancer research, or heart disease, or starving children in other countries, or what have you; but that doesn't make it any less important.)