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For two years in a row when I was younger, I volunteered at a summer camp for children with skin diseases. my parents wanted me to do it, and it fulfilled the community service requirement at my highschool. I qualified as one myself, and the camp always tried to present the kids with adults and role models who had the same conditions and problems that they did. The councilors, campers, and doctors with allopecia, of course, were comparably healthy, but it was still a chance for people dealing with the onset of the disease (which can cause random bald spots, etc) to feel normal. i also got to hook up with a bald girl from virginia, and have some cute photos. anyway, there were people and children with all kinds of problems, some of them rather extreme.

One of my friends at camp one year was a young australian named Derrick. Derrick had an extremely debilitating degenerative disease where his skin, where it rubbed on itself, would break down and fuse. therefore, although his face looked fine his neck, feet, knees, elbows, etc, had to be dressed and wrapped every day. He mostly sat in a wheelchair, even though he could stand with effort. I think the movement caused his skin to rupture where it had started to break down. With movement costing him so much, his muscles were in a sorry state. Keep in mind that he's a 17 year old boy. he did seem to have a bit of a nerdy bent and was very intelligent, but perhaps that was just the accent and if he had his preference he would have been playing rugby. alyway when i helped him up or helped him pick something up, i could feel the tremors in his muscles, which he nevertheless relished to use. likewise, when he hugged you you could feel his arms shaking. There was a younger kid with the same disease, but although he likewise needed his joints to be dressed and wrapped, he wasn't nearly so bad off and was much more active. by the time he reached derrick's age, he would probably be in the same condition.

looking back, i was rather a hellion at the camp, wherein the older and active kids were allowed to run a little wild and hook up with each other, have shaving cream fights (on a side note, an excellent thing to do is to take a regular shaving cream container, stick a pin in the nozzle, and then melt the nozzle around the pin with a lighter. When you pull the pin out and push the button, the shaving cream with shoot out about 4 feet, it works and looks like silly string, but makes a huge mess and you have to wash your clothes to get the oily cream out.) anyway i had some followers among the older campers and we would do "raids" where we would sneak into the woods and then throw sticks and things at the tents of the younger kids (just little sticks, so that it hits the roof and slides off the tent and makes a sounds like, "wump! zzzzzit) and scare the bejesus out of them, or just throw water baloons. then you could run up and shaving cream their camp, alway humiliating. so anyway derrick really wanted to go on a raid, and we asked the doctors about it and they were like, no. but he really wanted to go and the whole point was that we were badasses, so we wheeled his wheelchair to the edge of the woods and then helped him out. he had trouble walking through the underbrush because you have to step high. he became exhausted, but wanted to keep going. finally, we got within range of the enemy camp, and he chucked a few water baloons. he wanted to really "get" them and actually hit someone with one, but i explained that these were younger kids and we were really just trying to sow fear. finally we convinced him to treck back through the woods and his chair (only about 20-50ft), and despite his excitement he went to bed soon after. i can only imagine what damage was done to his skin, but he did seem to have a really good time.

the worst thing about his condition, though, was his hands. the constant motion caused the fingers to fuse together, to fuse to the palm. the doctors could cut them apart, but it would only happen again. you know that clear stuff that leaks out of cuts when they've stopped bleeding but art still trying to heal? and it forms a protective coating over the cut? his hands were coated in that. or rather, his fists. you could see the bones under the translucent skin/scab, but the only bit that he could move was the tips of his thumbs and the second knuckle of his pointer fingers. He used this to grasp the knot of the water baloons, or to shake your hand. sometimes he would wiggle the bones in his hands at you to be ironic. sometimes when i look down at my hands i see his.