Twenty years
Twenty years ago today I started to feel like I was coming down with something. I had planned to go to First Night with a couple friends, but I decided it was more prudent to stay home and rest. They were worried about me, but I told them not to be: it’s just a virus, I told them.
For the next three months I had constant fevers that peaked at 104, an intensely sore throat, all-over body aches and overwhelming fatigue, and sometimes an irregular heartbeat. About once a week I dragged myself to some doctor. Don’t worry, they told me: it’s just a virus.
After the fevers ended the fatigue and achiness continued. I felt like I had the flu, all the time. After a year and a half, I often wanted out of this life. I couldn’t see any way to be a contributing member of society, any way to be anything other than a financial drain on my mother. I was constantly thinking about suicide, and I made a bargain with myself: I would put such thoughts out of my mind for two years; if after two years I still saw no way to be anything other than a drain on the world, and I still wanted out, I’d let myself seriously consider that option. That helped, and over the next two years things improved enough that I could enter grad school. I wasn’t healthy, but I felt like I’d been given a new chance at life, and I was delighted.
Then my arms went bad. For two months my left hand had to be immobilized, and all the muscles atrophied. The right arm was a little better, but I couldn’t, for example, pick up a full glass of water. For nine years my arms and hands hurt pretty much constantly.
My ulnar nerves got inflamed. For two years it felt like I had just hit my “funny bone,” on both sides. Always. Incessantly.
My knees went bad. They had stabbing pain when I stood up or sat down, and throbbing pain the rest of the time, especially when I walked or climbed stairs. Sometimes walking or stairs meant stabbing pain. That first round lasted only about five months, but there have been more rounds than I can keep track of.
The fatigue and all-over achiness continued. Not always, but sometimes for months at a time. I came to call it “gravity wins.”
There were apparently cognitive effects. I can’t pay attention to more than one thing at a time for very long without making mistakes: do not turn on the stove before all the vegetables are chopped. And my memory goes glitchy sometimes, especially when I’m tired. If my brain deteriorates as much between 42 and 62 as it did between 22 and 42, I’m going to be in trouble with basic daily functioning.
I’m enormously healthier than I used to be. Except the initial fevers, nothing has gone away. But I now measure bad times in days or sometimes even hours, rather than months and years. I’m in pain less than half the time, and that helps immensely.
For twenty years one of the major structuring themes of my life has been learning how to manage pain. How to prevent it, how to mitigate it, and how to cope with it when it is present.
And for twenty years I’ve tried to find ways to feel like I’m contributing to the world, and living a life worth living, while giving myself the flexibility I need to manage my body. It hasn’t been an easy balance to find.
Three years ago I gave up on finding it through a paid professional career. Seventeen years of forcing myself through pain, for a career that wasn’t going anywhere, with frequent physical crashes and many failures, was enough. I’d always thought of myself as having a strong will, but my will broke. I was, and am, very grateful that I could depend on Randy without feeling too much like a burden on him. I’d fought against that solution for years: I’d never expected to be a kept woman, and giving up any aspiration for financial independence felt like yet another loss. But it came to be better than the alternatives.
A year ago I thought I’d found a solution in volunteering at First Parish. That became much more problematic after Carlton left and Butch died, and sometimes this year I’ve wondered whether I have to leave First Parish altogether. I’m not going to leave, at least before the new minister comes in September, but at this point First Parish cannot give me the sense of service, growth, and colleagueship that it used to. More loss.
I’m still looking for a pattern of life that gives me some sense of using my abilities to contribute to the world, some interesting things to think about and some people to work with, and the ability to keep functioning. Sometimes it seems like an awful lot to ask. Sometimes it doesn’t seem like much to ask from a life at all.
Twenty years. It seems like a long time …
For the next three months I had constant fevers that peaked at 104, an intensely sore throat, all-over body aches and overwhelming fatigue, and sometimes an irregular heartbeat. About once a week I dragged myself to some doctor. Don’t worry, they told me: it’s just a virus.
After the fevers ended the fatigue and achiness continued. I felt like I had the flu, all the time. After a year and a half, I often wanted out of this life. I couldn’t see any way to be a contributing member of society, any way to be anything other than a financial drain on my mother. I was constantly thinking about suicide, and I made a bargain with myself: I would put such thoughts out of my mind for two years; if after two years I still saw no way to be anything other than a drain on the world, and I still wanted out, I’d let myself seriously consider that option. That helped, and over the next two years things improved enough that I could enter grad school. I wasn’t healthy, but I felt like I’d been given a new chance at life, and I was delighted.
Then my arms went bad. For two months my left hand had to be immobilized, and all the muscles atrophied. The right arm was a little better, but I couldn’t, for example, pick up a full glass of water. For nine years my arms and hands hurt pretty much constantly.
My ulnar nerves got inflamed. For two years it felt like I had just hit my “funny bone,” on both sides. Always. Incessantly.
My knees went bad. They had stabbing pain when I stood up or sat down, and throbbing pain the rest of the time, especially when I walked or climbed stairs. Sometimes walking or stairs meant stabbing pain. That first round lasted only about five months, but there have been more rounds than I can keep track of.
The fatigue and all-over achiness continued. Not always, but sometimes for months at a time. I came to call it “gravity wins.”
There were apparently cognitive effects. I can’t pay attention to more than one thing at a time for very long without making mistakes: do not turn on the stove before all the vegetables are chopped. And my memory goes glitchy sometimes, especially when I’m tired. If my brain deteriorates as much between 42 and 62 as it did between 22 and 42, I’m going to be in trouble with basic daily functioning.
I’m enormously healthier than I used to be. Except the initial fevers, nothing has gone away. But I now measure bad times in days or sometimes even hours, rather than months and years. I’m in pain less than half the time, and that helps immensely.
For twenty years one of the major structuring themes of my life has been learning how to manage pain. How to prevent it, how to mitigate it, and how to cope with it when it is present.
And for twenty years I’ve tried to find ways to feel like I’m contributing to the world, and living a life worth living, while giving myself the flexibility I need to manage my body. It hasn’t been an easy balance to find.
Three years ago I gave up on finding it through a paid professional career. Seventeen years of forcing myself through pain, for a career that wasn’t going anywhere, with frequent physical crashes and many failures, was enough. I’d always thought of myself as having a strong will, but my will broke. I was, and am, very grateful that I could depend on Randy without feeling too much like a burden on him. I’d fought against that solution for years: I’d never expected to be a kept woman, and giving up any aspiration for financial independence felt like yet another loss. But it came to be better than the alternatives.
A year ago I thought I’d found a solution in volunteering at First Parish. That became much more problematic after Carlton left and Butch died, and sometimes this year I’ve wondered whether I have to leave First Parish altogether. I’m not going to leave, at least before the new minister comes in September, but at this point First Parish cannot give me the sense of service, growth, and colleagueship that it used to. More loss.
I’m still looking for a pattern of life that gives me some sense of using my abilities to contribute to the world, some interesting things to think about and some people to work with, and the ability to keep functioning. Sometimes it seems like an awful lot to ask. Sometimes it doesn’t seem like much to ask from a life at all.
Twenty years. It seems like a long time …