This is the second story in a two-part series about the unique relationship shared between a young man and his young caregiver (go to part one).
NOTE: Nathan/Dylan slideshow at bottom.
Meaningful work
Nathan has never walked and cannot use his arms. He must be bathed, fed, and lifted from couch to chair to bed. In his own words, the overall physical effect of his disease is that “movement basically dies off.” When asked to describe his body to someone who can’t meet him or see him, Nathan says, “I would say it’s a brain and a jaw. The rest is just useless, there to support my brain.”
But he says that growing up in a small town and going to public school where you knew everybody made him feel less different. He doesn’t identify with others who share his disabilities and doesn’t feel terribly sorry for himself.
“I was born this way and it’s just this subtle thing I’ve dealt with my whole life. It’s hard, but I guess there’s a lot worse things to be afflicted with,” he says. “At least I can still speak and communicate with the world.”
Just as Nathan doesn’t like to be identified as disabled or as an inspiration to others for living beyond his doctors’ predictions, his caregiver doesn’t like to be told that he’s making a huge difference in the world with his job...
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