It's been a strange couple of months. People getting sick, getting biopsies, getting tested. Berkeley legend Betty Ann Webster died, disappointing all of us who believed she was immortal. I've wondered whether it's just a sign of aging; I'm just more likely to know sick people now. But four months ago I was only four months younger, and everybody was doing fine. And some of the recently sick people in my life are, sadly, way younger than I.
It's just my turn in the barrel of fear. I've heard the word "stent" used in conversation way too much recently. It gives me the jimjams; it gives everyone the jimjams.
So I talk to the afflicted, and almost always I say, "Please let me know if there's anything I can do." It's a thing that people say. They say, "I'm sorry for your loss," if an actual loss is involved - would that include amputations? They say, "Everything happens for a reason," and then a large bolt of lightning turns them into a mound of charcoal, and a ghostly voice says, "What have we learned from this experience?" -- Jon Carroll, San Francisco Chronicle, Jan. 28, 2008
I began to get sick in the late summer of 1984, with a series of days where I just felt “off,” nothing terribly specific, but a feeling of not being well.
The first serious symptoms were episodes of what I now identify as smooth muscle spasms, abdominal cramps, esophageal and bronchial spasms, that sort of thing. I saw a doctor, who prescribed donatal. Later, I was given tagamet, for acid reflux. These were entirely symptomatic palliatives, and are distinguished as being the only things that any physician ever gave me to positive effect. Everything else, including diagnosis, was completely futile.
The phrase “chronic fatigue syndrome” is close to pernicious. It sounds like your only problem is being tired. Well, hell, everybody is tired. That’s just modern life. I lost count of the number of people who told me how tired they were. Sometimes I was perverse enough to ask them if they also had the feeling that someone was driving an ice pick into their solar plexus, or what they did when they woke up at night with the sweats so bad that it pooled in their ears, or dripped from their nose if they got up to use the bathroom.
Usually, though, I just didn’t have the energy.
I made a mistake in my first interactions with physicians. I responded to their questions about stress by admitting well, yes, I had been under a lot of stress, job, romantic entanglements, various amounts of high end partying. So that made my malady “stress related.” It took me a long time to decode that. Stress related = psychogenic = psychosomatic = mental = it’s all in your imagination and in any case, it’s your own fault, so get out of my office and start living right.
That’s one of the lessons learned. Doctors hate their patients when they don’t get better. All those phrases like “taking control of your own health” and “the importance of attitude in health,” are actually ways to make it okay to blame people for getting sick.
There were other lessons learned, few of them happy. It’s okay to be sick if you get well quickly. It’s also okay if you “tough it out,” if you “play injured,” if you don’t inconvenience too many people, in other words, and if you demonstrate the proper “mind over matter” attitude. But don’t stay sick for long; people might think there is something wrong with you.
A long term illness brings in the jackals. There are plenty of people who will take the opportunity to tell you all the things they don’t like about you, or use the occasion to get even for whatever you’ve done that they don’t like, sometimes for slights you don’t even remember committing. You think that you’re so well-liked that no one would do that to you? Try having an extended illness and find out for sure.
A lot of people simply can’t handle others’ illness, so they just stop calling. That’s one of the more benign manifestations, of course, since a bad illness leaves you without the energy to be sociable. Worse are the people who feel compelled to “help,” said help consisting of giving you advice on how to deal with the illness. I noticed that such “advice” frequently consisted of telling me things to do, the best ways (according to them) to spend my limited resources of money and energy, and that it often (who would have imagined?) involved trying to be more like them. After all, they weren’t sick and I was. Clearly they were doing something right and I had done something wrong.
Eventually I whittled it all down to practically nothing. I found that I had the energy to do maybe one thing per day. Pay bills. Go shopping. Clean my room. Do the laundry. Go to the doctor. Each one took a day. It was that realization that caused me to give up on seeing doctors. It took energy I didn’t have and it never helped, so I quit.
My typical day became one of getting up in the morning, having breakfast, then going back to bed. Around noon, I’d get up and have lunch. Then I’d watch television or read for a few hours. On “accomplishment days,” I’d then do one of those tasks. Then I’d have dinner. Maybe another hour or two of television, then back to bed. I was sleeping maybe 16-18 hours a day.
That was pretty much the entirety of 1985, excepting one six week period when I went to Georgia to stay with my folks. The daily rhythm was about the same, though.
Slowly, very slowly, I got better. Less and less sleep was needed. I could get more and more done. I went for long walks to get reacquainted with exercise. I also took up various projects that could be done in my bedroom, like learning about personal computers. Professionally, I managed to attach myself as a subcontractor to several projects, including some more smog chamber modeling and atmospheric data analysis. I think my average workweek was down around 10 hours a week in 1986, but that was enough for my, as it were, restricted lifestyle.
Over the next several years, my health slowly improved. The flexibility that I needed for work made it possible to travel a bit, and I spent more time with my folks, and also time visiting old friends “back East” including high school and college buddies. This flexibility also allowed me to be home after my father was diagnosed with cancer in 1989, and I was there when he died. I was still sick, sleeping maybe 12-14 hours a day at that point, but seeing my father die put it into perspective.
I also spent substantial amounts of time in New York City, at one point spending several weeks following a scholarly tic that involved my reading several years worth of newspapers from 1910-1912. My time flexibility allowed me to court Amy when the time came, and to marry her and kidnap her back to California.
Everything is connected, of course. Even minor events change the future; major events change who you are. I have no idea what life would have been like without the illness. I got sick; I got better. It took a long time. I went to sleep when I was young and I woke up middle aged.
I don’t actually remember what it was like. Selective forgetting is one of the things we do to protect our sanity. Occasionally, when I get a cold or a stomach bug, I’ll catch a flicker of a memory of some long departed symptom of the long illness and I will briefly fall prey to a Fear. Then it will pass, and I’ll remind myself that we’re mostly in the hands of Dr. Time, who cures and kills with equanimity.
Nowadays, when someone I know gets sick, or has some difficult period, I seldom offer advice. I do ask them if there is anything I can do to help, but there's more to it than that general question leading to avoidance of the issues. I ask if they need some grocery shopping done. I offer to do some housework. I’ll take food over and give it to them so they don’t have to cook.
Compassion? Altruism? I tend not to think of it in those terms. I’m more inclined toward the notion that while I don’t remember what it was like to be that sick, I do remember the anger at having been treated so badly by so many people who thought they were well meaning. I look on it as the dues I pay to not betray that anger, and to maintain my own high opinion of myself.