I made this video a month and a half ago, when I was obsessed by the whole hope vs. acceptance thing. I came out squarely on the side of hope, and squarely against my tendency to over-intellectualize everything. From now on, I'm letting cute bears-or-whatever-they-are duke it out for me.
Thursday, April 21, 2011
Monday, April 4, 2011
Cliche Wisdom, David Foster Wallace
I read a good book the other day. If you have some time and a dictionary and want to lie very still for several weeks and have your mind taken out of your body (anyone?), I very much recommend "Infinite Jest" by David Foster Wallace. It's about a lot of things (it's about...1173 pages long) but part of the book follows former addicts at a halfway house, going to AA meetings and slowly realizing that the tired cliches at the heart of the program, the "One day at a time"s and "Faith in a Higher Power"s insulting their intelligence, are actually the only thing keeping them afloat in a sea of their compulsions and diseases.
At one point, when Don Gately is in the hospital for heroic injuries, another addict makes him a needlepoint-synthesis of several cliches, which has lately become my personal motto: "Get well soon, one day at at time, if it's God's will." I put these words on a dog I found on the Internet to illustrate my point.
It so happens that I just joined a support group, an online symptom-management class for CFS. It's less pseudo-religious than AA, but it also employs a lot of cliches that make me want to tear my eyes out. I have no idea what "Taking control of your illness, so that it doesn't take control of you," means. But I am finding that following simple advice is comforting, and not very simple when you actually start to do it. I think about the words on the dog a lot.
Get Better
I can't help it, I am an optimist by nature. I absolutely believe that I will get better. There are no amount of discouraging statistics or horrific stories that will dissuade me. I don't know if I'll get all the way better (for some reason the phrase "get better" is never taken literally), but I do think I will get somewhat better. I think I can get back to where I was a year ago, the glass overflowing, half-full of health.
Soon
Well, it probably won't be soon. This seems to be a lifelong infection, and the stories I hear of recovery and remission all have in common a geologic time scale. They say that progress isn't apparent day-to-day, or even week-to-week, but over months and years, healing happens.
One Day at a Time
This here is the cliche of cliches, the one true self-opthalectomy-inducing platitude that I used to hate with a blood-spitting passion. Yes, days occur individually! They follow one another in sequential time! What bearing does that possible have on me, my sickness and misery?
But actually, this is really important. When I get overwhelmed with my illness, it usually isn't that I'm sick right now. It's the imaginary projection of the illness indefinitely into the future. I imagine being sick forever, and that is the unbearable thing. I used to think that acceptance, the most basic and important step a sick person can take, meant acceptance of a lifetime of illness. And I could never do that. But I don't need to "accept" the future, because I don't know what the future will bring. I can accept that I'll be sick today, probably tomorrow and on for a while, but worrying about what's going to happen years from now is completely unnecessary. I can think of things that I am able to do, today, that will make me happy, today, and leave the rest alone. If the days don't really add up to something greater than themselves, there's nothing wrong with that.
If It's God's Will
I'm not really into believing in things I can't see. I'm not going back to acupuncture school because of the lack of evidence that it actually works. See two posts ago for my opinion on the spiritual principles of hippie doctors (it's low). But nonetheless, there are things I believe in for no rational reason, simply because I feel that they're true. I believe in them because I believe in them, okay? It's the second rule of tautology club.
When I got sick this time around, real sick, I did my share of fist-shaking and God-cursing. But really, you can only do so much of that before you start feeling ridiculous. There's no shortage of pain in the world; "Why, God, why?" has no answer. I tried my best to dispense with the self-pity. And I found that, even though the amount of horror and suffering in the world is in no way rationally reconcilable with any idea of a benevolent "God," I still feel guided, and supported, and graced. So I don't choose to believe, but just sort of happen to believe, that there is a divine logic at work that I can't understand, "Karma" or "God's will" or whatever.
To me, this means that even though shitty things are happening, they aren't necessarily things going wrong. Who am I to know what's ultimately best for me? Even if I'm not being "productive" in the outside world, I'm doing what I can to face this illness with as much dignity and equanimity as possible; maybe that's what my life's supposed to be about right now. And even if chaos and entropy rule the universe, why react differently? Why not, you know, try to be happy with what you have? So even though I particularly hate the phrase tossed around in certain circles, "Bloom where you're planted," and wish I would never again see those words in that particular combination, I must admit it makes a certain amount of self-evident sense. And like following the advice of most of these cliches, what choice do you actually have?
At one point, when Don Gately is in the hospital for heroic injuries, another addict makes him a needlepoint-synthesis of several cliches, which has lately become my personal motto: "Get well soon, one day at at time, if it's God's will." I put these words on a dog I found on the Internet to illustrate my point.
It so happens that I just joined a support group, an online symptom-management class for CFS. It's less pseudo-religious than AA, but it also employs a lot of cliches that make me want to tear my eyes out. I have no idea what "Taking control of your illness, so that it doesn't take control of you," means. But I am finding that following simple advice is comforting, and not very simple when you actually start to do it. I think about the words on the dog a lot.
Get Better
I can't help it, I am an optimist by nature. I absolutely believe that I will get better. There are no amount of discouraging statistics or horrific stories that will dissuade me. I don't know if I'll get all the way better (for some reason the phrase "get better" is never taken literally), but I do think I will get somewhat better. I think I can get back to where I was a year ago, the glass overflowing, half-full of health.
Soon
Well, it probably won't be soon. This seems to be a lifelong infection, and the stories I hear of recovery and remission all have in common a geologic time scale. They say that progress isn't apparent day-to-day, or even week-to-week, but over months and years, healing happens.
One Day at a Time
This here is the cliche of cliches, the one true self-opthalectomy-inducing platitude that I used to hate with a blood-spitting passion. Yes, days occur individually! They follow one another in sequential time! What bearing does that possible have on me, my sickness and misery?
But actually, this is really important. When I get overwhelmed with my illness, it usually isn't that I'm sick right now. It's the imaginary projection of the illness indefinitely into the future. I imagine being sick forever, and that is the unbearable thing. I used to think that acceptance, the most basic and important step a sick person can take, meant acceptance of a lifetime of illness. And I could never do that. But I don't need to "accept" the future, because I don't know what the future will bring. I can accept that I'll be sick today, probably tomorrow and on for a while, but worrying about what's going to happen years from now is completely unnecessary. I can think of things that I am able to do, today, that will make me happy, today, and leave the rest alone. If the days don't really add up to something greater than themselves, there's nothing wrong with that.
If It's God's Will
I'm not really into believing in things I can't see. I'm not going back to acupuncture school because of the lack of evidence that it actually works. See two posts ago for my opinion on the spiritual principles of hippie doctors (it's low). But nonetheless, there are things I believe in for no rational reason, simply because I feel that they're true. I believe in them because I believe in them, okay? It's the second rule of tautology club.
When I got sick this time around, real sick, I did my share of fist-shaking and God-cursing. But really, you can only do so much of that before you start feeling ridiculous. There's no shortage of pain in the world; "Why, God, why?" has no answer. I tried my best to dispense with the self-pity. And I found that, even though the amount of horror and suffering in the world is in no way rationally reconcilable with any idea of a benevolent "God," I still feel guided, and supported, and graced. So I don't choose to believe, but just sort of happen to believe, that there is a divine logic at work that I can't understand, "Karma" or "God's will" or whatever.
To me, this means that even though shitty things are happening, they aren't necessarily things going wrong. Who am I to know what's ultimately best for me? Even if I'm not being "productive" in the outside world, I'm doing what I can to face this illness with as much dignity and equanimity as possible; maybe that's what my life's supposed to be about right now. And even if chaos and entropy rule the universe, why react differently? Why not, you know, try to be happy with what you have? So even though I particularly hate the phrase tossed around in certain circles, "Bloom where you're planted," and wish I would never again see those words in that particular combination, I must admit it makes a certain amount of self-evident sense. And like following the advice of most of these cliches, what choice do you actually have?
Friday, April 1, 2011
A measured and Calmly-Worded Letter to my Doctor
This is a letter I wrote and actually sent to my doctor. I felt pretty good about it. I'm putting it on my blog.
Dear Ms. Doctor,
I doubt you'll remember me. I came into your office sometime in January about tendinitis in my wrist, and I've been thinking about the interaction we had ever since. I hope you take this letter in the spirit in which it is written, which isn't out of anger or hostility at all, but a sincere desire for better understanding.
The day I saw you, I wrote on my medical history intake form, under the question about ongoing illnesses, "I've had Chronic Fatigue Syndrome for six years." You read my form, and then looked at me and said, "So you seem really healthy." I was shocked, and I didn't know what to say. I had only come to see you about my wrist and didn't feel like making a speech, so I just said, "Yeah..." It was an expedient lie that I wish I hadn't made.
The truth is, I'm one of millions of people in this country who have Chronic Fatigue Syndrome. Despite its pejorative name, this is a very serious illness. The first five years or so, I was actually wildly healthy for a person with CFS; I was about 50% functional, able to work part-time and have an active social life. I spent the other half my time in bed feeling like I had a terrible flu. Then my condition deteriorated, partly because I pushed myself too hard (moving, grad school), and for the past several months I have been almost completely bedridden. I am able to rally every so often, like when I came to see you about my wrist, but then I pay for it later.
The purpose of this letter isn't to blame you or to complain, it's to raise awareness about CFS. CFS is twice as common as multiple sclerosis, and more common in women than HIV. The etiology is unknown, but most scientists believe it is caused by a virus, possibly the retrovirus XMRV, but this research is still fairly new. Researchers at the University of Miami and the Medical and Dental University of New Jersey have both found biomarkers for CFS in recent years. Even so, most doctors aren't educated about it, or even more insidiously, believe that it is a psychological condition. I assure you it is not! For more information about CFS (also known as Chronic Fatigue Immune Deficiency Syndrome and myalgic encephalomyelitis) you can go to the CFIDS Association of America's website, http://www.cfids.org/ . This is a great review of the state of CFS research, statistics, and professional resources.
Over the last few months, I kept thinking of how I didn't respond to your statement with the sad and uncomfortable truth, and the effect that will have on your next CFS patient. There isn't a lot I can do about my condition, but raising awareness and promoting correct information is the first step towards a cure. Thank you for taking the time to read this letter and think about CFS.
Sincerely,
I doubt you'll remember me. I came into your office sometime in January about tendinitis in my wrist, and I've been thinking about the interaction we had ever since. I hope you take this letter in the spirit in which it is written, which isn't out of anger or hostility at all, but a sincere desire for better understanding.
The day I saw you, I wrote on my medical history intake form, under the question about ongoing illnesses, "I've had Chronic Fatigue Syndrome for six years." You read my form, and then looked at me and said, "So you seem really healthy." I was shocked, and I didn't know what to say. I had only come to see you about my wrist and didn't feel like making a speech, so I just said, "Yeah..." It was an expedient lie that I wish I hadn't made.
The truth is, I'm one of millions of people in this country who have Chronic Fatigue Syndrome. Despite its pejorative name, this is a very serious illness. The first five years or so, I was actually wildly healthy for a person with CFS; I was about 50% functional, able to work part-time and have an active social life. I spent the other half my time in bed feeling like I had a terrible flu. Then my condition deteriorated, partly because I pushed myself too hard (moving, grad school), and for the past several months I have been almost completely bedridden. I am able to rally every so often, like when I came to see you about my wrist, but then I pay for it later.
The purpose of this letter isn't to blame you or to complain, it's to raise awareness about CFS. CFS is twice as common as multiple sclerosis, and more common in women than HIV. The etiology is unknown, but most scientists believe it is caused by a virus, possibly the retrovirus XMRV, but this research is still fairly new. Researchers at the University of Miami and the Medical and Dental University of New Jersey have both found biomarkers for CFS in recent years. Even so, most doctors aren't educated about it, or even more insidiously, believe that it is a psychological condition. I assure you it is not! For more information about CFS (also known as Chronic Fatigue Immune Deficiency Syndrome and myalgic encephalomyelitis) you can go to the CFIDS Association of America's website, http://www.cfids.org/ . This is a great review of the state of CFS research, statistics, and professional resources.
Over the last few months, I kept thinking of how I didn't respond to your statement with the sad and uncomfortable truth, and the effect that will have on your next CFS patient. There isn't a lot I can do about my condition, but raising awareness and promoting correct information is the first step towards a cure. Thank you for taking the time to read this letter and think about CFS.
Sincerely,
Lee Davis
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