January 18, 1998
A few people have been asking me about the "mystery" illness I once had. My first instinct is to say, "If
I wanted to talk about it, I'd tell about it in my journal." Because I just plain do not like to
talk about it. This evening I thought a lot about whether it really made sense to keep it private, asked Mark
what he thought. Mark doesn't see any reason why I shouldn't, and I'm tired of having to be mysterious.
But gradually I've come to think that perhaps no one will really think I'm defective.
Anyway, I decided that tonight I'd just tell all about it and be done with it. I'm not really
sure how to start, so I'll just start.
In 1994 I got very sick. I was getting frequent and severe UTI's, I was suffering from increasing depression,
and it became very difficult to work. One doctor told me he thought I was nuts and needed therapy--but definitely not medication--the caveman thought
meds were a crutch. There was nothing physically wrong with me aside from the UTI's, he said.
I went back to my childhood doctor, not wanting to consult a psychiatrist--I was afraid I'd be told that I really was crazy or losing my mind. My childhood
doctor took good care of me and did what he could, but I kept getting worse. I got sick easily, but the worst thing was the
depression--it was intense, paralyzing.
In desperation, I broke down and consulted a specialist. I described everything that was
wrong, and he said, "Oh--sounds like you're not getting enough norepinephrine." [It's a neurotransmitter. I dunno if I
was using too much or not producing enough--either way, I wasn't getting enough of it.] He had some fancy blood tests done on me and that was
exactly the problem. I wasn't crazy--I was just low on one of my neurotransmitters. It wasn't even one of the ones which makes you mentally wonky--just
emotionally wonky. I don't know why I was getting sick so much, except that I've always been frail, and I know that one's immune system is weakened by stress
and unhappiness. But it was a wonderful thing to discover--not crazy! I'd been so scared.
Of course, having gone so long without being diagnosed, I'd gotten really sick. The depression was intense, suicidal, paralyzing. (And the feelings of
shame about it were incredible. I still have to remind myself that it's just like having any other physical problem.) And I kept getting weaker. The medication
used to treat this is one of those which has to be gradually increased in dosage over months and months to keep from killing the patient (this is no big deal--it's very common
with these sorts of medications--not death, but having to increase the dosage slowly to avoid death), and so it was a long time before things began to improve at all.
The happy ending is that I was cured, and equilibrium set in so that I was able to go off the medication entirely. But all told, I lost three years of my life. And
I'm grateful that medical science had come far enough to diagnose and treat me, because that damned thing truly almost killed me. I spent a long time not knowing if the medication
would work, or if I'd just slowly wither away and die, or if I should possibly euthanize myself. Lucky for me, I have this massively strong survival instinct and passed on the euthanization
option.
While I was sick, I could only work a very little bit and my family helped me out. But they didn't really understand. They tried, but they just couldn't fully understand.
So I fear that strangers would also not understand, and would think less of me, or think I'd been crazy. There's different kinds of chemical imbalances, and chemical imbalances
aren't very well understood by the general public. People like me tend to live in fear of being misunderstood or discriminated against. When I worked up the courage to tell my
friends what was wrong with me I suddenly discovered how many people, brilliant people, have various chemical imbalances.
But you know what? No one can hurt me, so why should I keep it a secret? It's hard to keep such a secret in a personal journal--references to it crop up and the censoring becomes
unwieldy. So now you all know. Please don't write to me asking more questions, or telling me about similar cases. I don't mean to be mean or rude, but this is still a very private,
tender spot for me.
Because I'm no longer a young immortal full of fire and ready to conquer the world. I'm just happy to be alive and rebuilding--but part of me feels like so much
less of a person for this and mourns for that lost feeling of endless possibilities. (I know, there's still tons of possibilities, part of this project is about reawakening.)
Because I'm cured, but it's not over. I'll never be as strong as I used to be--perhaps with more medical advances, but as things are I'm quite functional and competent and happy...but working a full-time job
takes a hell of a lot more out of me than it once did. I honestly don't know whether I could sustain it indefinitely or not, since my last stint was only half a year. (I didn't quit because I was sick
though, I was doing pretty well.) Life is a struggle. But Mark supports me, and being able to just work at home and freelance makes things easy again. I suspect being loved and being in love helps a lot,
too.
I could get sick again. I have to work hard at staying happy and keeping stress down. This is how I stay well without having to be on medication (this is something I had to do even when I was on medication), because
I can keep things in equilibrium. It's very common for people to stay in equilibrium once they're cured and taken off medication because, well--things in a state of
equilibrium tend to remain that way.
But if I get depressed, if I don't take care of myself and fall out of equilibrium, then I could rapidly get bad again. And that's something I want to avoid at all
costs. At the tail end of my illness, I found that I needed more than the medication to recover fully. And I was forced to learn how to worry less, how to put things off and prioritize, how to be more positive. I had no other choice,
so I finally learned. I suppose there are people who can learn this easily, but I learned only out of desperation.
And so I'm very nice to myself, allow myself to appreciate good things, keep myself busy with things which make me either happy or give me a feeling of accomplishment or both--and am very happy. Because I'm not just trying--I
really did learn how to be a lot happier. And that's why I tend to be so disgustingly cheerful in here and yammer on about inanities which please me, or ramble on about philosophical things which interest me. Because my illness
taught me how to appreciate things so much more. And finding myself still alive, and well again, has given me back a lot of childhood wonder and enthusiasm, I think.
Sure, sometimes I am bitter, sometimes I cry my heart out. Would I be human if
I didn't? But that's rare, I don't let the sad things rule my life. I feel very lucky that I'm able to keep them from ruling my life, because it's not an easy thing, not something one can simply decide, just like that. Instead, I decided, tried,
waited, and perhaps also got lucky--somehow I developed that ability as a new survival trait.
So. To recap--I'm ok, not perfect, but ok. I was never crazy. I deserve no pity because I'm probably happier than most people, because I'm well now, and because I truly despise pity. Sometimes things are hard, sometimes things are easy. There's a reason why I have such
a disgustingly positive attitude. I don't mind sympathy and compassion, but I do not welcome questions, condescending attitudes, pity, unsolicited advise, or stories about Crazy Aunt Sue. Because sometimes I feel defective, as if I was born with a weak heart valve or something.
I know I shouldn't feel this way any more than someone with a weak heart valve should, but I need more time.
Oh, and I'm 5'6&1/2" tall, so 96 pounds is very skinny. It's just not healthy, so I'm trying to gain weight. It's taking forever and a day because I have a super fast metabolism. And a very small tummy which ought to be fed five times a day, which I'm too absent-minded to do. Another
thing which I need to work on. But I've never had an eating disorder. I just can't seem to put weight back on when I lose it. The first big loss was in college when I got codeine poisoning--fun way to discover an allergy (I'd had my wisdom teeth taken out)--and my stomach shut down
for a few days. The other factors would be becoming lactose intolerant (and taking forever to figure it out, I just figured it was a getting older thing why I was having digestive probs), and the Big Illness.
I think that covers all the important points, at least for now. Oh--letters saying "I don't think you're a freak for having had a chemical imbalance," are welcome. I do worry that other people will think I'm defective. I shouldn't care, but part of me does.
In other news, Mark and I went out for dinner tonight and then out grocery shopping. A toy mouse was bought for Sammy--because he always shares his toys. Mark's doing some more testing with the server now. We think we're almost to the point where Tim can telnet in and take over for awhile, get
things set up. Very exciting.
Telling my story tonight has left me feeling pretty wrung out inside. I think I'm going to just go take pictures and then goof off now. I'll probably be back to my cheerful, rambling self tomorrow.
quote
"Soon the child's clear eye is clouded over by ideas and opinions, preconceptions and abstractions. Simple free
being becomes encrusted with the burdensome armor of the ego. Not until years later does an instinct come
that a vital sense of mystery has been withdrawn. The sun glints through the pines, and the heart is pierced in a
moment of beauty and strange pain, like a memory of paradise. After that day...we become seekers."
--Peter Matthiessen
poem
Morning breeze
riffling
the caterpillar's hair.
--Buson
