I work at an Independant Living Center, helping people with all sorts of disabilties live as normal lives as they can.
Item the first, which I am ashamed to admit affects me so much.
We had a consumer come into the office one day, for the yearly 'hey how's it going meeting'. I was able, somehow, to smile and say 'nice to met you' as they rolled by in their wheelchair. And then I had to leave the office, and splash some water on my face. Imagine having your right arm fixed, immobile, at 90 degrees to your body, elbow bent at 90 degrees also, and wrist as well, palm up. Your arm does not move, not because of a cast or surgery, but because your muscles themselves are twisted and locked in position. Your legs are similiarly twisted and immobile. Your left arm is tied to your body so it doesn't get in the way, you have no control of it either. Your mouth is perpetually open, with your tongue hanging out. There is a drool cup fixed to your chin. You can pivot your head about 10 degrees either direction, and have very limited torso twist ability. You can not speak, or gesture, merely grunt or moan.
I like to think I have a good imagination, but I can not imagine life like that. I've seen a lot of consumers, with a lot of different, nasty, horrible problems. But that person, and they were still a PERSON, trapped in that rigid shell of a body, that person disturbed me on a level I didn't know I had.
Horrible death is one thing. But horrible LIFE is something I find far more disturbing.
Item the Second:
One of the things I deal with is the yearly nurse's evaluation of how many hours of care a consumer needs, based on their medical condition. Occasionally, we have the misfortune to see actual photos of the open sores that need care. Picture, if you will, a Cone. About 4-6 inches diameter and with a height of 3-4 inches. Now imagine a series of full color pictures of a human leg. With an empty, oozing, bloody, pustulent hole the size of that pyramid. And now, imagine being the person with that hole. For three years.
Life goes on.