Monday, October 29, 2007

Liberty or Death

Via Balloon Juice, I saw this article about Robin Prosser, an activist for medical marijuana legalization in Montana. The article has all the details, but the short version is, Prosser had an 'immunosupressive' disorder that sounds to me like CFS with MCS. She was unable to use traditional pain medication because she was allergic, and the medications made her very ill (or, like my doctors say about me, "she was unable to tolerate the side effects"); marijuana was the only substance that improved her condition, so she used it. Since she was an activist, she was on the Feds' radar, and they caught her with half an ounce. The article doesn't say whether or not they were prosecuting, but they really didn't need to. When they took away her pain relief, Prosser killed herself.

I was hesitant to write about this, because obviously it's very upsetting. I look at this situation and it brings up a whole slew of issues that I struggle with. Chronic pain is absolutely devastating in so many ways, and it's compounded when the solutions that are supposed to make you better only make you worse. That situation would be bad enough, but then once you find something that gives you some relief, authority jumps in and crushes you again. I've read a few blog posts here and there, and the occasional commenter who laments giving up hope in the face of all the wonders of modern medicine makes me so angry and sorrowful I want to puke. It's hard to understand, if you're basically healthy, what it's like to live with a body that tortures you every second of every day, and to be unable to stop the pain.

Most people are able to live imagining that if they were ever a prisoner under torture, they would be able to hold up their head and say, "Do your worst, I defy you." I used to hold that illusion. I don't anymore; I know the truth, like Prosser knew it: there are things worse than death.

I'm reading Dead Certain, the biography of President Bush that came out a few months ago. I had forgotten that W. ran on a platform of "compassionate conservatism;" I think he may have forgotten it also, this many years later. As impossible and hopeless as it might be, compassionate government in any form, conservative or liberal, seems like a grand idea to me. Because the way the system is run these days, people in need get the message that it would be better for everyone if they were to go off and freeze to death under a bridge than to expect a helping hand from anyone. Politicians would rather appear to be protecting kids from drugs than allow someone living in hell on earth a minute of relief. Like Sullivan said, the government has come down to "protecting people from the alleviation of their own pain."

Saturday, October 27, 2007

If only I could program

Someone needs to put up an online recipe database you can search based on the ingredients in the recipes. Every recipe database I've seen is just your basic search tool where you type in a word or phrase and get every result with that word or phrase in it. What would be 100 times better would be a search system like Wowhead, where you can set up a filter based on characteristics of the item, only this would be just a basic search page with with several inputs, and instead of searching for, say, "Chicken Parmesan" you would search for "chicken breast" "onion" "apple" "garlic" and "green pepper." And instead of getting every recipe with "Chicken Parmesan" in the title, you would get recipes with your ingredients in them.

I know I can't be the only one who looks at the items in my refrigerator and just can't think what to make with them. This website would make millions.

Friday, October 26, 2007

Illness as Metaphor

I read Illness as Metaphor yesterday and today, and I would like to write about it. The most appropriate way of writing what I'm thinking may be a contrast study with The Bridge of San Luis Rey, but I don't know if I'll have the mental energy to do that. I have other things I need to write in the next week or so. However, for a start, here are some quotes from the book that I thought to be rather edifying.

"According to the mythology of cancer, it is generally a steady repression of feeling that causes the disease... the passion that people think will give them cancer if they don't discharge it is rage. There are... cancerphobes like Norman Mailer, who recently explained that had he not stabbed his wife (and acted out "a murderous nest of feeling") he would have gotten cancer and "been dead in a few years himself.""

"So well established was the cliche which connected TB and creativity that at the end of the century one critic suggested that it was the progressive disappearance of TB which accounted for the current decline of literature and the arts."

"Doctors and laity believed in a TB character type- as now the belief in a cancer-prone character type, far from being confined to the back yard of folk superstition, passes for the most advanced medical thinking."

She quotes Katherine Mansfield, who died of tuberculosis: "A bad day... horrible pains and so on, and weakness. I could do nothing. The weakness was not only physical. I must heal my Self before I will be well... This must be done alone and at once. It is at the root of my not getting better. My mind is not controlled."

"In his Morbidus Anglicus (1672), Gideon Harvey declared "melancholy" and "choler" to be "the sole cause" of TB... In 1881, a year before Robert Koch published his paper announcing the discovery of the tubercle bacillus and demonstrating that it was the primary cause of the disease, a standard medical textbook gave as the causes of tuberculosis: hereditary disposition, unfavorable climate, sedentary indoor life, defective ventilation, deficiency of light, and "depressing emotions.""

"The second [hypothesis] is that every illness can be considered psychologically. Illness is interpreted as, basically, a psychological event, and people are encouraged to believe that they get sick because they (unconsciously) want to, and that they can cure themselves by the mobilization of will; that they can choose not to die of the disease. ... Psychological theories of illness are a powerful means of placing the blame on the ill. Patients who are instructed that they have, unwittingly, caused their disease are also being made to feel that they have deserved it."

"The notion that a disease can be explained only by a variety of causes is precisely characteristic of thinking about diseases whose causation is not understood. And it is diseases thought to be multi-determined (that is, mysterious) that have the widest possibilities as metaphors for what is felt to be socially or morally wrong."

For all that Sontag's writing style is atrocious- she makes me want to tie her to a desk and force her to write outlines until she can complete an argument in a linear fashion- she does have some things to say in this piece that are very apt. I am tempted to write up a little bit about the psychological model of illness to take with me to my next appointment with the Psychologist From Hell.

Wednesday, October 24, 2007

I am the prayers of the naive

I met a psychologist at the VA women's clinic today. I made the appointment to get evaluated for the memory and comprehension/concentration problems that I've been having, but somehow it turned into this woman being really concerned about my attitude about my illness. She told me two things that really stuck out:

"The difference between acute pain and chronic pain is that with acute pain you can expect to get treatment and then not feel pain anymore, but with chronic pain it's just unrealistic for you to expect that your life is going to be perfect and you'll be pain free all the time."


"I work here in the primary care clinic because we've come to recognize that there is no separation between the mind and body. Your mind can really affect the pain your body feels, so I think that if we work together on your expectations for your life and your health that would be really helpful. Positive thinking can be really healing."

I've heard subtler religion pushes from Mormon missionaries on the doorstep. I seriously wish all these crackpots with medical degrees who are convinced that what I really need to improve my life is a massive dose of wishful thinking would all go jump off a cliff. Magical thinking is an incredibly seductive way of approaching life; everyone wants to believe that they're in charge of their own body and wellbeing and safety and popularity and lifespan etc. But just because you want to believe it, doesn't mean it's true. It amazes me how people who can agree with that statement in a religious context continue to believe it in a scientific and medical context.

It's enough to make me agree with the crackpot fundies who regularly freak out about New Age and relativist influence in public schools.
What is one man's and one woman's love and desire, against the history of two worlds, the great revolutions of our lifetimes, the hope, the unending cruelty of our species? A little thing. But a key is a little thing, next to the door it opens. If you lose the key, the door may never be unlocked. It is in our bodies that we lose or begin our freedom, in our bodies that we accept or end our slavery.

-from Four Ways to Forgiveness, by Ursula K. LeGuin

Tuesday, October 23, 2007

a bone thrown from the void

There's an interesting article in Slate today about the placebo effect. Apparently some studies done recently, or rather an analysis of studies done recently and perhaps not so recently, suggests that the placebo effect may be much less effective than most people think. It would be neat to see what would happen to some of the thinking surrounding illness if it was proved that believing you're being treated is not at all useful to your health.

Also on the topic of health, there's been an interesting discussion over at Echidne of the Snakes regarding the demonization of obesity as a health problem that can be blamed on the victim with some degree of social acceptability. Demonizing the ill as a method of causing ourselves to feel secure in our safety from illness is something that I've been thinking about; I've ordered that book by Susan Sontag from the library, even, in spite of my hideous experience with Sontag's Regarding the Pain of Others in that writing class a year ago.

I just described both of these articles as interesting, so I will call this one something else. Frightening, perhaps. Horrifying, or heart-breaking, or something else equally melodramatic. It reminds me of that clip of a Republican debate where Ron Paul is arguing with one of the crazy fundies, Brownback or Tancredo or whoever, and the guy says that we must continue as we have been going on in the War on Terror for the sake of our soldiers' honor. I wish someone would explain to the politicians that if a soldier's honor requires not doing A (say, torturing helpless prisoners) AND also doing B (say, keeping your oath to obey the orders of the officers above you), requiring a person to choose between doing A or not doing B is not in any way imaginable a good way to uphold that person's honor.

I found this video of a song by Sigur Ros quite by accident. It is the most joyful thing I've seen all day. There's something in it... a sense of being yourself in the world, connected to the air around you and the dirt under your feet. I would like to live like this.

Thursday, October 18, 2007

Colbert 2008

A couple nights ago, Stephen Colbert announced on the Colbert Report that he's running for President, as both a Democrat and a Republican, only in South Carolina. I know it's a joke, a gimmick, something they dreamed up on the show to more effectively mock the candidates and the process of campaigning. This knowledge makes me a bit sad. I would like to live in a world where Stephen Colbert could run for President of the United States and have a serious chance of winning. I would vote for him.

The news is all over the predictable places, basically anywhere on the Internet trafficked by young, disaffected Americans. I went and joined a Facebook group, to see if people were taking it seriously. A lot of the comments I've seen are along similar lines: sure, it's a joke, but we'll write him in on our ballets just because everyone else who's running is so awful. Or as one guy said, "He's the only candidate I even like. All the other candidates are boring or clinically insane, or patently evil."

I have to say, I kind of agree. Politics is so congested right now that even people who have worked on Capitol Hill their entire lives are trying to run as 'outsiders', like Fred Thompson, or, like Barack Obama, are discovering that it's impossible to run a campaign without sucking up to interest groups and sliming your opponents. The appeal Colbert has is the same kind of appeal that Ron Paul has: you get the feeling that he really hates the entire system, and would do his best to change as much as possible. Colbert has a major edge over Ron Paul, though, because while he is a comedian he's not a gold standard/9-11 truther/isolationist nutter. Plus, when you watch his show every night you get to feeling like you have an idea who he is, as a person, and you start to think like maybe even if you didn't agree with him on everything, you could trust him to make important decisions.

I'm not ready to commit to actually voting for him in the general elections, because since I live in a red state now my vote might actually be useful, but the idea is very appealing.

Monday, October 15, 2007

Heat the pins and stab them in

One of the better things about having a memory worse than most retirees is my ability to take up hours and hours and hours watching only the television I like. I hop online and dial up my favorite show, and watch the episodes over and over, never remembering the details or the dialogue, able to watch the same 45 minutes of programming for 3 hours and still laugh at all the jokes and cry at all the tragedies. It really is great, to be able to experience things as though they were new.

Today, I watched Moonlight, a show that just came out this fall. I'm tempted to say that vampire murder thrillers are not usually my cup of tea; that's not really true though. In fact, I'm as big a sucker for melodrama as the next person, and I'm a much bigger sucker for dark and brooding heroes than most modern women. Alex O'Loughlin does a dreadfully handsome tormented hero type.

Even though I can no longer remember the details of the stories I watched, I do retain a sense of what mattered to me in what I saw. And so now I'm contemplating the nature of strength. Not physical strength, necessarily, although that has it's own place and time and is also something I crave, but rather strength of self. That which sustains endurance through the darkest times. That which keeps one moving forward when everything is lost, even when everything stays lost and there is no chance of getting it back. That which shelters and protects little seedlings of hope, when there is no hope. Strength.

I used to think I was strong. Maybe I was strong, once upon a time. And maybe, in spite of everything, I still am.

Thursday, October 11, 2007

See my shadow changing

The weather is finally turning colder and more autumnish, although cold is relative and I think some of it is just that it's not as humid, and it's breezy today. But nights are definitely getting colder, and I broke out the giant hoody sweatshirt yesterday evening. The temperature inside is only about 75 degrees, and I'm cold. I miss the days when I would keep my windows open in winter so that my room was much colder than the rest of the house, because the cold made me think easier.

The plants in my poor abused garden are doing just fine, though. They went through some kind of growth spurt, and I think one of them is planning on being a tree. In addition to the bushy types that were there originally, there's more than a few weeds, which are even more interesting. It amazes me how resilient life is, how it creeps in and sets down roots where it's not supposed to be. Raze it to the ground and bury it in the dark and still it reaches for the sun. I wish I had that kind of courage.

One of the weeds appears to be chives. It doesn't photograph well, being mostly a skinny green line, so there is no picture. But, it tastes like chives. Makes me want to grow a kitchen herb garden or something, that could be done in pots. I would bet that seeds or seedlings for herbs are even more expensive than for common flowers, though. Maybe someday.

Saturday, October 06, 2007

Treat me like the leaves

I've taken up the bad habit of using song lyrics as post titles. I used to do this on my old journal, sometimes I even made posts of nothing but lyrics to songs I was listening to. I go to write, and then I hear the words to the music in the background and all of a sudden I can't think of anything different than what I'm hearing. Music has always been about words for me anyway. I'm very strange like that.

Realized earlier today that when searching for pictures of crows on which to base my tattoo design, I had never searched for pictures of ravens. The two look rather alike, you would think that there would be a fair number of appropriate pictures. However, I found nothing new in the way of birds. I did find this picture, though, which I quite liked.

I'm not interested in a full shoulder tattoo, especially not one that goes up the neck and would be half hidden, half revealed with every single shirt I have. The tentative plan at this point is for the crow to go on my right shoulder. But I don't know. I probably won't even get it for quite a long time, both for monetary reasons and because tattoos should be thought about, anticipated before you actually get them. You should have an engagement period, so to speak.

So I don't want to get a tattoo like this one here. It's terribly pretty, though. I think the delicateness of the lines mean that it will hold up over time better than big blocky pictures do. There's less to smear, and even if it does get a bit less distinct it will still be wonderful art. It seems to suggest that I could consider something more elaborate than a freestanding bird in flight, something more detailed and nuanced than a black cutout figure. I don't know if elaborate is my style... but it's pretty.

In the course of browsing through disability themed blogs, and other blogs that are just written by people with disabilities, I've come across the term disablism (or ableism) quite frequently. The best explanation of the movement I have is this essay by a former "Jerry's Kid" poster child; the idea is that seeing people with disabilities as inherently unable to do things is foolish because if society approached the problem differently, for example spending money on accomodations instead of pure medical research, the lives of people with disabilities would be much better in the present, instead of in some possible future. Also part of this movement is the idea that many of the modern treatments of disability are marginalizing of persons with disabilities in a way akin to racism.

I've found myself having mixed reactions to this paradigm. On the one hand, I can see how it would be really important for someone who is essentially able to do many things with a little bit of help, but who is prevented because of an outward appearance of disability. If you could go to the theater and have a great time if only they would put in a lift to get you to the second floor, it must be maddeningly frustrating to have simple mechanical things thwart your plans. On the other hand, it scares me that someday there might be an atmosphere that expects everyone to be able to do everything in a 'disability friendly' building. I don't use a wheelchair, there would be no benefit from it, but that doesn't mean that I'm able to get around freely. My problems stem from pain and fatigue that are almost totally unpreventable. I can't imagine accomodations that could be put in place anywhere I'm interested in going that would make any difference at all.

So maybe this is selfish- certainly this is selfish- but I kind of think that a focus on mainstreaming disability would be harmful for me personally. If there is the expectation that disabled people can work if you just redesign the workplace, it would be even harder to explain that there are many days it takes me an hour to get out of bed, that doing anything at all on a consistent basis is liable to cause pain because it's the fact of repetition that gets me, that I function on the level of a dyslexic with ADD, insomnia, depression and narcolepsy most of the time, that there are all these things that can't be designed around that prevent me from working. I already have a hard time convincing people that I'm in physical distress; I don't look it; the expectation that I should be able to do 'mainstream' things no matter what disability I have would make my life infinitely harder.

It would be nice, though, if there wasn't a social stigma associated with being unable to work, or go out shopping or partying, or even being unable to keep one's house properly. If I can't convince myself that being unable to do these things isn't a moral failure, though, I don't see how there's any hope of convincing people who don't have to deal with this on a regular basis. Maybe if our society was completely changed, so that there was less importance placed on work and money as the measure of a person's value, so that individualism was less important and community was more important, so that there was an expectation that everyone at some point would need the help of the people around them so help should be freely asked for and freely given. Some of this reminds me of Echidne of the Snakes' posts on how modern feminism requires the involvement of men in the domestic realm, in that if this has any chance of working out, it requires that the current culture be torn down and started again from the beginning.

I'm realizing that most of my prescriptions for the problems I write about boil down to the same thing: burn it all down and start over.

I suspect that this may say something about me that isn't all that flattering.

Friday, October 05, 2007

Now we'll say it's in God's hands

I guess it's old news by now that President Bush vetoed the bill that would expand SCHIP to cover more children who currently don't have health insurance. I think almost every blog I regularly read mentioned it at least in passing; there's even a post on the ProHealth Fibromyalgia/CFS forum about it (registration required). I don't think anyone in the US would be willing to make the claim that our health care system is functional, and I wouldn't be surprised if health care was a major issue in the next election, maybe even as important as the War.

I have a hard time following the various proposals for change that have been put forward. I would like to be able to analyze the merits of Clinton's plan v. Edward's plan v. the Republican plan (do they even have one?), but every time I try to wade into the technicalities, I fall asleep after about the first paragraph. Technicalities are no longer my strong point.

However, there are a few basic ideas that I think I have a handle on. As far as theories about the appropriate government role in health care, I believe it comes down to the government either managing regulation of the industry to keep costs low or pouring money in to pay the industry for the care of poor people or some combination of the two. There are a lot of side issues, like research and development and the control of medication due to the War on Drugs, but the main issue is what government should do to make the system work.

I wish I knew the answer to this question. I guess a lot of people wish they knew the answer, because obviously no one does, or the ill would not be automatically destitute while insurance bureaucrats gorge on the last penny of the elderly and dying. I don't trust the government- I regard it with a visceral suspicion. Even if I thought it were possible for a government agency to run a really efficient and friendly and effective health care program, I wouldn't believe that's what would actually happen if the government took over the industry. But as someone who never expected to be disabled but who is almost entirely helpless now, I am even less eager to throw myself on the mercies of the market.

I can't see my way to unequivocally supporting SCHIP funding for families that make $60-80k a year. That kind of income seems like riches from where I'm sitting. I don't see how you could be poor, making that much money. And raising taxes on cigarettes seems like an especially cruel way to pay for it. If you're going to tax something that's socially unacceptable in order to make ends meet, at least be gracious enough not to tax something that's horribly addicting. Tax sugar, tax sitcoms, tax rich people's children, tax blond hair dye, whatever, don't tax something that people can't give up without medical intervention.

On the other hand, serious illness is catastrophically expensive, and all too often the expense hits right when you lose your job because you're too ill to work. Having insurance doesn't mean you're safe, and neither does Social Security. Serious illness is devastating all by itself, even without financial ruin, and it's not like the safety nets we currently have make your life easy. I regularly lurk on the ProHealth board, reading the stories of people who have fibromyalgia and aren't lucky enough to be veterans. The luckiest of people have spouses who can support them and houses to sell to pay their medical debts; the unlucky are young and alone, living in abject poverty for years in order to qualify for a measly couple of hundred dollars a month of welfare and a Medicare system that will deny them coverage for the treatments that help the most. It's heartbreaking. For all my libertarian tendencies, I believe that there should be a better system for these people. If society means anything, I think it must mean taking care of those who are unable to take care of themselves.

I guess my real opinion on the matter is that the whole system is broken, not just how we pay for medicine but how we do medicine. I would like to see a complete, from the ground up re-do of American medicine, that changes things from how strictly we control medicine to the whole concept of hospitals to how doctors are educated. In some ways, American medicine is great. Cancer treatment, for example, is one of the things that we usually do right. But so many things are wrong with it, and I don't have any expectation that changing payers will cure the deep structural problems.

Thursday, October 04, 2007

It's been unseasonably warm here lately; we don't have a temperature gauge outside, but inside today the thermostat said it was 83 so it must have been 90 or so in the sun. I love the heat, since it softens some of the muscle cramps I get, but this long summer may not be a good thing. The trees are dropping leaves without turning color, which may be usual here, I guess, though I don't really think so. What isn't usual is the green sprouting plants coming up in the garden that got mulched for winter.

It's a bit hard to see, but in the below picture, the leaves with multiple lobes are sprouting off the base of a plant that got cut off to the roots, as though it's spring and time for new growth. I suppose this won't really hurt anything as far as the plant's ability to grow back again next spring- which is silly to worry about if I'm just going to turn it into a vegetable patch anyway- but it all seems very odd and out of sync. I hope this crazy summer doesn't turn into a ridiculously long and cold winter.

It's my understanding that global warming is expected to lead not to slightly warmer temperatures year round and nothing else, but rather to greater fluctuations in weather, which would include hotter summers and colder winters and more storms. I don't know how I'm going to deal with colder winters, but I think it would be great if warmer weather combined with rising heating and cooling costs lead to great swathes of people adopting the midday siesta as a way of life. Temperature efficient architecture and sleeping during the day sound like improvements to me.

Monday, October 01, 2007

The Warrior Spirit

There's lately been a lot of talk in the blogs I read about Rush Limbaugh's comments about soldiers who oppose the war in Iraq. Media Matters has a transcript of the radio show in question, and it's clear that Mr. Limbaugh and his (second) caller really honestly believe that there is an essence of soldiery that causes a soldier to wish to kill and die- because that is what it is to fight- and also, I think, to wish to obey orders without question. This attitude is not so uncommon among other published opinions that I've read, particularly the opinions of those who support the war, but not only them.

I've encountered this idea before, but never been able to put it into words quite the way I'm thinking of it now.

I finished reading, just this morning, Wolfskin, by Juliet Marillier. One of the main characters is a Viking warrior, a devotee of Thor who lives to kill. Marillier writes of the red battle haze that takes over a berserker in the heat of combat, the insanity of blood hunger that causes men to kill without mercy, without thought for their own safety or even knowledge of what they do. These warriors were formidable in battle but nevertheless didn't live long; four or five years of service was about what they could hope for before being taken to Valhalla by Valkyries to sit at the hand of God.

This image of the Warrior is not at all like what I knew of soldiers while I was in the Army. The best of them, the ones who had seen combat, lost friends and killed, were quiet men. The sergeant who was head NCO of the ROTC program at UW who was a part of the unit that lost men at Mogadishu, the drill sergeant at Fort Jackson who was a Marine sniper, before, the Army Ranger officer in my Korean class who dropped out to deploy to Afghanistan, were all men I respected. They were dangerous and hard, and not very happy, but above all they were professional. They didn't lust for battle. They knew better; all their efforts were devoted to training, preparing, not because they loved death but because they hated it. They knew that if such a thing must be done, it should be done with skill, to keep their comrades alive and to settle the conflict as quickly and decisively as possible, for everyone's sake.

These men have more in common with my father, who is a good man and takes joy in his work, than with a Viking berserker, but I think that many people in America do not know this about soldiers. Maybe this is because of the much lamented disconnect between the military and the rest of society due to the volunteer nature of our military; perhaps its just part of human nature to be eager to see other people as alien and unlike oneself. For whatever reason, it seems to me that people who argue that withdrawing from Iraq would be an insult to the honor of our soldiers do not know what a soldier is.

I think that if everyone knew that soldiers are not death-demons by nature, the argument over withdrawal from Iraq would be very different. If a soldier is a hunger to fight for honor or vengeance, then perhaps it is right to keep soldiers in the middle of a battle that can't be won. But if a soldier is only a man with complex motivations, who is willing to fight if it is necessary but who hates to kill for no reason, then we- the people of America who nominally run this place- have betrayed them horribly.