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kate_schaeferAn old family friend died last week, a young woman we've known for 22 years, since she was 14 and a friend of our teenagers. I mourn her. I remember her.
She was a stick of a girl with enormous eyes, pale skin, paler dandelion seedhead hair, and knobby knees that didn't work quite right. Within a few years, it became clear that it wasn't just her knees that weren't right. She brought us a huge bowl of blackberries she'd just picked once (we're pretty sure we still have the bowl, though we're equally sure that we don't know which bowl it is), and after she left, my visiting dad observed that she must be on some weird drugs, because of the way she twitched. We were shocked, and said we were pretty sure she wasn't; she'd always twitched like that, a bit. She was a little knobbier, a little more awkward than most adolescents we knew, but within the envelope of adolescent movement we were accustomed to seeing among the kids' friends. We were wrong; she was outside that envelope.
It was not drugs, but a degenerative illness whose name I could never remember and still can't, a genetic problem that gradually took away her mobility. She could still walk with a cane when she went to college in Olympia. Once she came up and visited us, travelling the whole way by public transportation. Ordinary municipal and county bus systems, that is, from Olympia to Tacoma to Seattle with the interconnections made using little local buses. I don't remember how long it took, maybe eight or ten hours for a trip that can easily be made by car in under two, but I remember being astonished that it could be done at all. It cost very little, maybe six bucks total, because she had a disabled pass for herself and her companion-helper. By the end of the trip, she said, she really, really needed the helper to make sure she could get on and off the bus. She was utterly gleeful about having accomplished her quest; she hung out with us for maybe half an hour, then went on to her parents' house to sleep before going back to school the next day. I don't know if they returned by the same arduous path, or if, having made their point, they took Greyhound or Amtrak instead.
She graduated from college and eventually moved to Portland, where she shared a house with my older stepdaughter and several other women. By then, she was using a wheelchair most of the time. While Glenn was a student at Clarion West in 1995, that household came up to Seattle to go to the annual gay pride march. I don't think we marched in that one, though we often did march with PFLaG. Most of them stayed with us, but our house is not wheelchair-accessible. The dorm Clarion West used at Seattle University in those days was accessible, so Glenn came home for the weekend and lent his dorm room to our friend and her partner. We could have used more accessible space for another of their friends who stayed with us, but we did the best we could at the time.
Our younger granddaughter was born that summer. When she eventually learned to stand, it was by pulling herself up on the spokes of our friend's wheelchair. It was an endearing but annoying habit, since it immobilized our friend until someone else could come move the baby.
The large household broke up, and my stepdaughter, her partner, and their daughter moved with our friend to another house in Portland. That household eventually broke up as well, but we would still see our friend at our granddaughter's or grandson's birthday parties, and we would hear about her from time to time, as we heard and hear about all my stepdaughter's friends (Sam makes friends easily and hangs on to them tenaciously. It's a trait I love in her, but it does make catch-up conversations with her go on forever).
I think she was a programmer; certainly she was a computer geek of some sort. Sam said she was working until not long before she died. She worked for the same employer for many years, and I assume she did a good job. Certainly she had all the characteristics needed to do well as a geek: she was bright, creative, logical, and stubborn (I have gone back and forth about whether the word I should use here is "stubborn" or "persistent"). She didn't talk about her work when we saw her; we all tended to be focused on the grandchildren, an interest she shared, and adult conversation about anything not having to do with the children would be squeezed into random corners or left out altogether.
Although I was always happy to see her, I was aware that she was not always a little ray of sunshine. I was fond of her over many years without ever being close to her. I know that she was a difficult person for those who were close. Losing mobility, bit by bit, was horrible, depressing, and painful. She was a child of extremely controlling people and was herself a very controlling person, a tendency made worse (I surmise) by the fact that she had so little control over the most basic element of her personhood, her own body. Her disease didn't make her personality, but it was a pressure on her personality.
She had an identical twin with the same disease, progressing at the same speed. When they were young (the only time I had any contact with the twin), they seemed to have nothing in common except their genes and their affection for and exasperation with each other. They didn't really look like each other, despite having identical features. Their voices were the same, but their inflections were different.
In the long run, we're all without control over our own bodies. They all fail, in stages or all at once, and we die. We still know that there is a difference between the eventual failure of the basically sound body and the early failure of a body considered lucky to make it to age thirty. She was lucky, but it was the luck of someone who had first been deprived of ordinary animal luck to a huge extent. Lucky to have had an excellent education, lucky to have had good medical care and the family resources and insurance to pay for it, lucky to have found a career that depended on her mind working even as her body failed, lucky to have found an employer who didn't have to be bludgeoned into reasonable accommodations (nagged sometimes, but not bludgeoned), and unlucky enough to need all of that.
She didn't die of the disease. She took an overdose of her pain meds, was found in time to be clawed back to life for a few days, regained consciousness at the right moment to ask for morphine and turn down a feeding tube, and then died. Her choice, her control, as much as she could manage.
Goodbye, my friend. I will mourn you and remember you with as much clarity and as little sentimentality as I can manage. Goodbye.
She was a stick of a girl with enormous eyes, pale skin, paler dandelion seedhead hair, and knobby knees that didn't work quite right. Within a few years, it became clear that it wasn't just her knees that weren't right. She brought us a huge bowl of blackberries she'd just picked once (we're pretty sure we still have the bowl, though we're equally sure that we don't know which bowl it is), and after she left, my visiting dad observed that she must be on some weird drugs, because of the way she twitched. We were shocked, and said we were pretty sure she wasn't; she'd always twitched like that, a bit. She was a little knobbier, a little more awkward than most adolescents we knew, but within the envelope of adolescent movement we were accustomed to seeing among the kids' friends. We were wrong; she was outside that envelope.
It was not drugs, but a degenerative illness whose name I could never remember and still can't, a genetic problem that gradually took away her mobility. She could still walk with a cane when she went to college in Olympia. Once she came up and visited us, travelling the whole way by public transportation. Ordinary municipal and county bus systems, that is, from Olympia to Tacoma to Seattle with the interconnections made using little local buses. I don't remember how long it took, maybe eight or ten hours for a trip that can easily be made by car in under two, but I remember being astonished that it could be done at all. It cost very little, maybe six bucks total, because she had a disabled pass for herself and her companion-helper. By the end of the trip, she said, she really, really needed the helper to make sure she could get on and off the bus. She was utterly gleeful about having accomplished her quest; she hung out with us for maybe half an hour, then went on to her parents' house to sleep before going back to school the next day. I don't know if they returned by the same arduous path, or if, having made their point, they took Greyhound or Amtrak instead.
She graduated from college and eventually moved to Portland, where she shared a house with my older stepdaughter and several other women. By then, she was using a wheelchair most of the time. While Glenn was a student at Clarion West in 1995, that household came up to Seattle to go to the annual gay pride march. I don't think we marched in that one, though we often did march with PFLaG. Most of them stayed with us, but our house is not wheelchair-accessible. The dorm Clarion West used at Seattle University in those days was accessible, so Glenn came home for the weekend and lent his dorm room to our friend and her partner. We could have used more accessible space for another of their friends who stayed with us, but we did the best we could at the time.
Our younger granddaughter was born that summer. When she eventually learned to stand, it was by pulling herself up on the spokes of our friend's wheelchair. It was an endearing but annoying habit, since it immobilized our friend until someone else could come move the baby.
The large household broke up, and my stepdaughter, her partner, and their daughter moved with our friend to another house in Portland. That household eventually broke up as well, but we would still see our friend at our granddaughter's or grandson's birthday parties, and we would hear about her from time to time, as we heard and hear about all my stepdaughter's friends (Sam makes friends easily and hangs on to them tenaciously. It's a trait I love in her, but it does make catch-up conversations with her go on forever).
I think she was a programmer; certainly she was a computer geek of some sort. Sam said she was working until not long before she died. She worked for the same employer for many years, and I assume she did a good job. Certainly she had all the characteristics needed to do well as a geek: she was bright, creative, logical, and stubborn (I have gone back and forth about whether the word I should use here is "stubborn" or "persistent"). She didn't talk about her work when we saw her; we all tended to be focused on the grandchildren, an interest she shared, and adult conversation about anything not having to do with the children would be squeezed into random corners or left out altogether.
Although I was always happy to see her, I was aware that she was not always a little ray of sunshine. I was fond of her over many years without ever being close to her. I know that she was a difficult person for those who were close. Losing mobility, bit by bit, was horrible, depressing, and painful. She was a child of extremely controlling people and was herself a very controlling person, a tendency made worse (I surmise) by the fact that she had so little control over the most basic element of her personhood, her own body. Her disease didn't make her personality, but it was a pressure on her personality.
She had an identical twin with the same disease, progressing at the same speed. When they were young (the only time I had any contact with the twin), they seemed to have nothing in common except their genes and their affection for and exasperation with each other. They didn't really look like each other, despite having identical features. Their voices were the same, but their inflections were different.
In the long run, we're all without control over our own bodies. They all fail, in stages or all at once, and we die. We still know that there is a difference between the eventual failure of the basically sound body and the early failure of a body considered lucky to make it to age thirty. She was lucky, but it was the luck of someone who had first been deprived of ordinary animal luck to a huge extent. Lucky to have had an excellent education, lucky to have had good medical care and the family resources and insurance to pay for it, lucky to have found a career that depended on her mind working even as her body failed, lucky to have found an employer who didn't have to be bludgeoned into reasonable accommodations (nagged sometimes, but not bludgeoned), and unlucky enough to need all of that.
She didn't die of the disease. She took an overdose of her pain meds, was found in time to be clawed back to life for a few days, regained consciousness at the right moment to ask for morphine and turn down a feeding tube, and then died. Her choice, her control, as much as she could manage.
Goodbye, my friend. I will mourn you and remember you with as much clarity and as little sentimentality as I can manage. Goodbye.
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no subject
Date: 2008-10-23 08:50 pm (UTC)