For eight years I worked for a man with MS in woody yet cultured Amherst, Massachusetts, and It was probably the best job I ever had. I would get up, make coffee, feed his cat, feed him, clean and dress him, get him up, put him back in bed, turn him back and forth, clean his house, and do his shopping; but mostly I would light his smokes.
While he smoked, he would talk. He used to be a musician, work in a hospital, and he loved to travel. He was a wild man in his youth, jumping trains across the country and playing in a band. Now he was stuck in bed with multiple sclerosis, unable to move in his mid 40's; still a young man in many respects. It was frustrating to him. Sometimes he would become angry; he would yell at his girlfriend and sometimes me. We always forgave him; he felt so powerless laying in that bed.
He turned me on to all kinds of music, Van Morrison, Cat Stevens, Tom Waits. We would watch "Star Trek The Next Generation", the "X-Files" and old Hal Asby films, like "Harold and Maude" and " Being There" He would send me out to get cigarrettes and scratch tickets, and talk about what he would do when his ship finally came in. When he got really high, he would tell me the same silly joke over and over again like it was the funniest thing in the world. " What do you call a fish with two knees"
His girlfriend was a card; she is one of those people who does not know how to end a conversation, so she just keeps going. I did not really mind that, because her tales were hilarious, and she was full of passion for life. She was, and hopefully still is, a magnificent cook, and a brilliant poet.
There were some bad times; it was obvious that somehow someone wanted to drive him out of there. This ridiculous home inspector would criticize the dust on the walls and one of his employees, without consulting anyone, took him to a mental hospital for an evaluation. Luckily, his parents got him out; but it made me furious; his only real wish for himself was that he would die in his own home. Another employee insisted he get a social worker, which he had been stalling on for years. He got a letter from a doctor saying he was on comfort care measures, and no one messed with him anymore.
Eventually I moved back to Maine with my mother, and he died a year later. I came back to visit him one last time before he died, right before his birthday, and lit him one last smoke. I was informed he passed away on his birthday, after a group of friends came to see him. When I found out, I was not sad; he had won.