Wednesday, February 27, 2008

Riva Lehrer

Continuing on the subject of art and disability, I found this site today via Wheelchair Dancer. Riva Lehrer is an artist who draws and paints what appears to be mostly disability themed portraits. Her gallery is an interesting portrayal of a community of people she obviously loves very much, but although I think it's valuable to have someone out there making these pictures, this isn't what I want to do.

This picture, for example, shows a woman who is an amputee swimming with an otter (or seal?). It says a lot of things about the social and psychological consequences of disability but much less about the immediate physical experience. Maybe my problem is just that my experience of disability has nothing to do with other people seeing me a certain way, or with anything visible at all. My experience of disability is almost completely opposite; my body has betrayed me in the most subtle and subjective ways possible, so that I look completely normal when nothing is right.

What I want from art is a path to expressing all the things that aren't obvious. Not that there's anything wrong with expressing things that are obvious, or more accurately things that should be obvious but are still mistaken all the time. It's just that the struggle that I have isn't convincing people that I'm still human in spite of differences in appearance, it's convincing them that although I look the same, my knowledge of life is different because everything I see is stained with pain. Unfortunately, I am not convinced that this message is one that it's possible to convey. Pain is such an oddly hard concept to grasp.

Tuesday, February 26, 2008

No one's taking showers anymore

I've been in a bit of a 90s funk lately, listening to some of the songs that were important to me when I was a teenager: OK Computer, The Lonesome Crowded West. I rediscovered my CD of The Moon & Antarctica, put it on my computer, and I've been listening to it on repeat for the last day or so. I've never really been one to have a favorite song or favorite band, but I think if I did, Modest Mouse would be my favorite.

I've been on a quest to express myself through art. Well, not to express myself so much as to express the sensation of pain. To make people understand, to revive the memories we all have and bury of physical agony. I don't think this sort of art would be terribly popular, but I want to know if it can be done. It's been tried before, of course. The two artists that immediately come to mind are Rodin and Kahlo, but even the explicit physical pain portrayed by those two don't make you hurt if you don't have the memory of pain readily available. Art like this connects on an emotional level, not a physical level. I don't know if it's even possible for art to make you hurt like I think it ought to; maybe this is impossible. Well, impossible without performance art with audience participation, anyway.

I used to write poetry, some of which was pretty decent. These days, though, my skill with language is so poor it disgusts me. Sometimes I can manage a well structured paragraph, but the spark of beauty I used to see in what I wrote eludes me. Now, I only convey information. I've tried off and on to pick up writing again, but have had no luck, so part of my Grand Plan for Happiness involves learning other kinds of art. I'm currently taking a pottery class at the local community college. It's pretty low key, basic stuff, and I'm not very good at it. My unfamiliarity with the medium plus the pain in my hands and arms from handling the clay conspire to make me too clumsy. When I started the class I thought that something I make with my hands ought to express pain the most clearly, but I don't think pottery is going to work out.

Music is out- I tried for years to be good at it and I'm just not. Photography is interesting but frankly most of the things I take pictures of are either beautiful or interesting intellectually; pain is not a purely visual thing, being a collection of invisible nerve impulses, and barring taking a camera into an emergency surgery theater, I don't think photography is the right medium to capture it. Drawing and painting are less literally visual, and although I've never shown any talent for either I'm curious about taking some sort of class. The only place that offers drawing classes, though, (that I know of) is the community college, and the classes there are on a semester system so nothing starts up again until at least the summer.

In the meantime I have some books on basic drawing out from the library, and I'm listening to Modest Mouse for inspiration.

Sunday, February 17, 2008

In the abyss

I was going to go out to the park today and take some pictures. There's a park I found on the internet that isn't too far from here and appears to have both a cave (although you need a permit to go spelunking) and a good view of the Mississippi River, and someday soon I swear I'm going to go and take pictures there. Not today, though, today the trees are whipping around and it's been raining off and on and the sky glowers like we should be expecting a thunderstorm. I suppose it would be possible to take pictures in those conditions, but it doesn't sound all that appealing. So instead of a nice photo post, here's a quote from the book I'm reading:

[Suffering] alienates me from my established moorings, blurring what was once clear discernment of the order of things. As the microcosm of the body crumbles in pain, so does the cosmos itself. The world that once made sense, that was once meaningfully whole, founded and guaranteed by a God who sits enthroned over chaos, suddenly crumbles under overwhelming torrents. Suffering is radically uncreative. It undoes the world.

Pain is an abyss. To be in pain is to be in the abyss. And indeed, when I am in it, even when I am with another who is in it, it is as though the abyss of suffering is overtaking the entire world. ... [T]he body in pain is an embodiment of chaos, a chaos monster, whose chaos spreads like poison from the individual body to the entire universe.

From Religion and Its Monsters, by Timothy K. Beal. The book is not on the atrocities committed in the name of religion, which is what I first thought when I saw the title on the shelf at the library; it's about the monstrous as portrayed in religious texts from the ancient Near East and also the religious as portrayed in monster stories, although I haven't read that far yet. The above passage is from the opening of a chapter on the book of Job, and the portrayal of Leviathan, Yam, and the sea monsters in that story. What I've read so far has been quite interesting.

Friday, February 15, 2008

the sticky-sweet taste of vomit clinging to my teeth

I stopped taking fluoxetine today. Today was only the fourth day since I started taking it; this is certainly not a record for me, but still I worry that I'm not giving the medication a fair chance. Maybe I'm really not.

It's gotten so that I expect that any new medication will make me ill right off. My memory for pain and illness is hazy but somehow the fear doesn't diminish with the sharpness of the memory, so although I no longer remember exactly what it felt like the time trazodone made me ill, or the time Effexor made me ill, I do remember laying in bed wondering if I ought to call 9-1-1, wondering if I was dying. I remember the vomiting, and the wanting to vomit, the dozing for a day and half broken by bouts of pain, the tremors and the rapid heartbeat, the feeling of being about to faint, the feeling of things being very not right.

I remember that no doctor has ever even tried to explain why this happens to me.

Some of this I remember more clearly because it happened again this morning. The nausea, the lightheadedness and tremors, the spacey fatigue. My stomach clenches remembering it.

The worst part of it all, though, is the fear. I got lucky this time. The sickness passed in only a few minutes; by anyone's standards it was almost nothing at all. But when it hit me, I didn't know that was how it was going to happen, and the fear was almost overwhelming. It scares me deep down, this sensation that my body is going wrong. I look into this pit of unknown sickness and I see death, or rather, since nothing is clear but the conviction of danger, I smell death. The scent of it sticks to me and although I don't really believe that taking one more 10mg dose of fluoxetine will kill me still the fear has a solid hold of me and I just can't make myself take it.

I honestly don't know if I'm being prudent and reasonable and coping well, or if I'm just a coward. Fear makes it easy to justify a decision and I suspect that the wise thing to do is to continue taking these pills until they either make me seriously ill for days or my body gets used to them. There's just something about making a clear choice to do something that you believe will harm you (and won't benefit anyone) that is incredibly difficult. It's what kept me from starting this medication for so long, and maybe now it's keeping me from giving it a fair chance to work. I wish I knew, but I can't tell.

Tuesday, February 12, 2008

look me in the eye

I was wandering through the library the other day and, on the New Books shelf, I noticed look me in the eye: my life with asperger's, by John Elder Robison (and now I see Mr. Robison has a blog, which I will have to add to my reading list). The book is, obviously, a memoir that focuses on life with Asperger's Syndrome. I've been interested in autism and autism-spectrum disorders for awhile now; oddly enough, a lot of the crackpot alternative "cures" for things like fibromyalgia and chronic fatigue are also billed as cures for autism, or are closely related to the "cures" for autism. Techniques like the elimination of metallic tooth fillings, or candida, or mold in your house, the use of acupuncture, or massive doses of the vitamin of your choice, or eating only organic whole food, or positive (magical) thinking, are all sold as cures for both autism and fibromyalgia. There was even a scientist on the Chronic Fatigue Syndrome forum I used to frequent who hypothesized that a regimen of dietary supplements developed for autistic children was actually the cure for CFS (registration required). (As a side note, the Methylation Protocol did seem to have some effect, as it made some people feel slightly better before making them horribly ill. The world of alternative medicine is a disturbing place.)

Some of this overlap is no doubt due to the thinking of the sellers of these "cures," which is "medical science can't solve Problem X, so the solution for Problem X is clearly this bit of quackery that makes me so much money." But there is also this sense that both autism and fibromyalgia are somehow caused by significant systems in the brain going subtly wrong, and this, to me, is very interesting. This kind of connection makes me wish I could stand formal schooling long enough to have a chance at becoming a scientist on the cutting edge of research into these questions; how typical of the world that the pain that motivates me to ask these questions is the very same thing that keeps me from being able to find the answers.

The science of pain isn't the only thing that interests me in autism-spectrum disorders, though. Robison's stories of growing up with Asperger's reminded me very forcefully of what it was like for me growing up. Not that I think I have Asperger's; I know how easy it is to read a description of anything like this and self-diagnose, simply because the mind is complicated and diverse enough that whatever it is you're looking for there, you'll probably find it. However, so many of his stories that focus specifically on what Asperger's is are things I can relate to that the whole idea of Asperger's intrigues me.

For example, he writes about being yelled at for not looking people in the eye during conversations; no one ever really yelled at me, but I certainly agree with him that looking people in the eye is unnatural and weird and uncomfortable. He talks about learning to drive, and then having problems driving and talking at the same time; when I'm in traffic and my husband is sitting next to me and he tries to talk to me, even to give directions, I ask him to stop because the distraction makes me panic, and I even have to turn down the radio so it's quiet. I relate to his description of how being petted- constant gentle physical contact- is so soothing to his nervous system that it keeps him from fidgeting without even noticing it, and some of what he says about how he relates to machines reminds me of the way I used to relate to political ideas, before I got hurt. The usefulness of training oneself to converse in ways that other people will find normal is something that I discovered as a teenager. Also, the clarity of focus that he describes as part of his savant-like ability to work with sound circuits is something that I have experienced. The single-minded abstractness required to work at a certain level of brilliance is something that I had, on occasion, but that I've lost since fibromyalgic fatigue clouded my thought processes.

The most emotional parallel between my life and Mr. Robison's life, though, is his stories about making friends as a child- or rather, failing to make friends. The bewildering emptiness of being unable to connect with the people around you, the desperate loneliness of knowing that the people you want to be friends with think you're weird and alien, all of that is very familiar to me. My childhood was, if my memories are accurate, thoroughly unhappy. It is tempting, as my brother said in comments on this post, to blame that unhappiness on my external situation, on the church or the school or the kids at school or my parents, but if I am quite honest with myself the truth is that nothing in my childhood, including my parents' religion, did quite so much damage to me as did my failure to make friends.

It's enough to make me wish that when I was young, someone had told me that I had Asperger's, even if that diagnosis wasn't justified. If I had had a diagnosis to explain why I felt no connection with other people, would I have believed for years that there was something wrong with me that made me impossible to love? I don't know. It's impossible to know what things would be like if the past was different, but I can't help but think that if someone had just recognized that I had a problem I could have been a whole lot happier.

Saturday, February 09, 2008

In my dreams I've found this place

About a week and a half ago I went to the emergency room with blinding abdominal pain accompanied by frequent vomiting and that intense feeling you get of things being not right. Turns out I had kidney stones and an infection to go with them. At the ER, I got a prescription for Vicodin, among other things, to deal with the pain, but I didn't get it filled right after being discharged because I've tried Vicodin before for my fibromyalgia pain and it does nothing whatsoever to alleviate the pain, but it does make me vomit, and I was doing enough of that already.

After I was discharged from the ER, though, the pain got bad again quickly and I eventually sent my husband to the pharmacy to pick up my Vicodin prescription. I took it, and it dramatically reduced the amount of pain I was feeling from the kidney stones. However, at the same time I was in pain from my fibromyalgia because I'd been laying down for over twenty-four hours at that point, with breaks only to go to the bathroom or vomit. My shoulders and back were compressed from being immobile and the pain grew to the point where it was about 3/4s as bad as the kidney stone pain was without any medication at all. Once I took the Vicodin, the kidney stone pain was reduced by 85% or more, but the fibromyalgia pain was not affected at all, just like usual. I only had one episode of vomiting that I think was due to the medications, too; despite the lack of relief of my fibromyalgia pain, I was pretty pleased with this outcome.

I assume doctors are aware of this difference in medication efficacy between pains; thinking on it, they must be, or why would they develop drugs like Lyrica specifically for nerve pain? I haven't heard a doctor articulate this difference before, though, and you'd think that, as a patient with a chronic pain condition, I would have a fair chance of hearing it if they were in the habit of talking about it. It makes me curious, though, if whether in my lifetime I will see the development of pain treatments that acknowledge all the different kinds of pain. I have this theory that the way our bodies sense pain is much more complicated than medical science currently acknowledges. My experience with kidney stones suggests that if you view opiates like Vicodin as acting primarily to block pain receptors in the brain so that pain signals don't get through (which I believe is more or less accurate), there has to be more than one set of pain receptors, or more than one way in which those receptors accept information, and perhaps whole different systems built for sensing different kinds of pain.

In Pain: the Science of Suffering, by Patrick Wall, Dr. Wall describes the traditional medical model for pain as something like a contraption where at one end you knock a ball with a hammer to start it rolling on its path and then at the other end once the ball gets there it rings a bell: injury equals nervous system reaction equals pain. This traditional model is clearly sadly lacking, and often cruelly misleading, and I'm interested to see what medical science is going to discover to put in it's place.

Thursday, February 07, 2008

and you were walking sideways too

I forget how I got there (perhaps via The Digital Cuttlefish), but I was reading Pharyngula yesterday and this morning. The author of the blog recently was in a debate with a creationist on the radio and so several of the posts were about intelligent design as a scientific theory and its lack of merit in the scientific arena. It's all very interesting. To say that my scientific education was neglected in high school is an understatement; I don't think my parents would have allowed me to study evolutionary biology in any form were they consulted about it, and my own lack of interest in the hard sciences at the time ensured that I didn't put the effort in to pursue it behind their backs (unless you count reading science fiction of every variety, which certainly exposed me to ideas my parents didn't approve of, but sadly didn't educate me in the specifics of biology).

Recently, I've been on a kick to educate myself independently, as part of accepting that I won't be able to go back to formal schooling as a path to employment any time soon. I want to know things, and my general desire to know everything has focused more on science lately, mostly because of some reading I've done about the medical science behind pain, the nervous system and the brain and so forth. My knowledge is horribly shallow, but one of the benefits of this is that when I come across things that I ought to already know, they seem incredibly fascinating. Take, for example, the evolution of whales. Ever since I read David Brin's Startide Rising and The Uplift War as a freshman in high school, I've thought dolphins are probably the coolest animals ever. Now, thanks to Pharyngula, I've learned that the not only are dolphins and whales amazing as they are, but their evolution is also endlessly fascinating. And here's a Wikipedia article that gives similar but less information, but has pictures.

It kind of makes me sad that my level of interaction with this information is on the level of a sixth grader with dolphin posters on the wall: "ooo, what neat pictures!" I should probably think about taking a community college class in biology or something. If only I were, you know, rich.

One intelligent thought that I do have on the subject is related to an idea I saw at Greta Christina's Blog. Well, the idea originates in a book she talks about, Mistakes Were Made (but not by me): there is a process by which we humans, instead of confessing mistakes and changing our actions, justify and excuse our wrong decisions, sometimes building huge constructs to show why we weren't wrong to do what we did. And part of that process is that when we've convinced ourselves that a mistake was wisdom and then we're confronted with a counter argument, we can't confront it rationally, because we can't admit mistakes. So instead we get defensive and angry and so on. Everyone does this, it's a feature of the brain.

So how does this relate to evolution?

Evolutionary biologists, and I suppose other types of scientists who argue for evolution, try to argue with creationists on a scientific field, and creationists have attempted to argue back, developing things like Intelligent Design and the Creation Museum. The problem is, in a purely scientific arena, creationists can't win. There is a pretense in creationist circles that they can, but it's pretty clear to me that in fact they can't. Scientifically, the case against creationism is made and scientists who know this and still have to argue with creationists about it are frustrated by the fact that these people don't realize what's going on.

The problem is, creationism is a necessary part of the supporting rationalization that has been built to sustain a belief in a God who is good, omniscient and omnipotent. Scientists who attack creationism are attacking part of a belief structure that is mistaken, but getting people to admit a mistake, particularly one of this magnitude, isn't a matter of simply laying out a true argument, it's a tricky finagle that, depending on the person you're trying to persuade, isn't always possible.

There are a lot of people who claim a general belief in God while also acknowledging that evolutionary theory is true, so this claim that creationism is necessary for belief in God might seem to be a little out there. It's true, though.

This is how it goes. There is a classic philosophical question to do with the existence of God, the Question of Suffering, as in, if God is good, powerful, and all-knowing, why do random storms come out of the sky and kill dozens of people? It seems that this could happen if God didn't know about it, or couldn't stop it, or didn't care, but doesn't seem compatible with the definition of God in the major monotheistic religions.

There are two explanations that I've heard for this question in the Christian tradition in which I was raised, and although I could be wrong, I think they're the answers generally accepted to be correct by Christian theologians. First, there's the idea that God created a perfect world and then humans came along and messed everything up, and second, there's the idea that in fact this is a perfect world, the best of all worlds, and it only seems to be flawed and full of suffering because we don't understand God's ineffable plan which is actually both morally good and beneficial for us in the long run.

The creationist underpinnings of the first answer are pretty clear: in the beginning there was a perfect Eden, God made Adam and Eve and everything was perfect until Eve ate the apple. Once you introduce the idea of a gradual emergence of human intelligence over generations, in a world that pre-existed humanity by a great deal of time, you can still posit the existence of sin, but you can't blame suffering on it. If sin is a human invention, but tornadoes and landslides and forest fires predate humanity, sin can't be to blame for these disasters. Even if you assume some sort of evolutionary step in one generation where pre-humans gave birth to humans and this first generation of humans is responsible for the existence of sin because one of them 'ate the apple,' real or metaphorical, you still have the problem of the time when those first humans were children, innocent and yet subject to cold and hunger and natural disaster. As this whole fanciful scenario shows, if you accept evolution you cannot blame sin for suffering, and honestly I don't think anyone really tries anymore. If I recall correctly, this was one of the early arguments for why evolution couldn't possibly be true, though.

The second answer, that God is Unknowable, is a little more complicated because sometimes it's invoked as a way of simply saying, "I have no idea what's going on but instead of trying to figure it out I'm just going to embrace these conclusions about God that I already have and like." It can also be used as a genuine argument, though, and often is, by people who are smart and thoughtful and fairly openminded, for example some of the community at Slacktivist. This idea- that God has a plan that we humans can't comprehend because it's so complicated or whatever, so what appears to be completely gratuitous and inexplicable horror is actually part of a good plan- isn't decimated by the time line of evolution, but the two still cannot co-exist.

The mechanics of evolution require suffering to work. Natural selection, environmental pressure, and competition with other species are all abstract ways of saying misery and death to the innocent. Without pressures that kill those who can't cope, species would never differentiate. Suffering is a feature of the process that resulted in the world as it is, not an anomaly, not something that the world could do without.

When I was a good little church kid, I used to memorize Bible verses. One of the tear-jerkers was Jeremiah 29:11: "For I know the plans I have for you," says the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." It's possible to reconcile evolution, and the suffering it entails, with the idea of a God with a plan, but not the God who promises a plan to prosper his people. People who accept evolution and the suffering it requires are left with either a God who is amoral at best and sociopathic at worst, or no God at all.

All of this means that, for people of a certain religious persuasion, creationism absolutely must be true. Evidence of fact doesn't enter into the equation because evidence for evolution threatens these basic elements of their worldview, and scientists who try to argue for evolution are using rational arguments to combat a gut terror of a Godless world. It's an interesting situation.

Wednesday, February 06, 2008

On qualifications

So the primaries were yesterday, and I was well enough to go out and vote. I didn't vote for Clinton, mostly because of her foreign policy. The last thing this country needs is another warmaker, and she's shown that she doesn't have a strong ideological objection to preemptive war. I couldn't vote for her, but I sure wanted to.

I don't watch TV news, since my attention span can't take a lot of blow-dried people saying the same thing over and over for very long. I get my news from various points on the internet, so I sometimes miss the memes that infect the TV. However, I've picked up the impression that a lot of the talk about why people vote for Clinton has to do with whether or not women are voting for her just because she's a woman (and I guess whether or not men aren't voting for her just because she's not a man, although there is a slight possibility that that question gets asked less often). I think the way the meme goes is that of course people who vote for a woman simply because she's a woman are emotional, irrational and politically ugly people who shouldn't be allowed to vote, because elections should be decided on the issues and not gut reactions. If I were a proper blogger I'd have links to people like Chris Matthews backing up this interpretation of the situation, but sadly I'm not a particularly proper blogger, so if you want that go read Echidne or Shakesville; they know what they're doing.

I'm just going to suggest that maybe voting for a woman just because she's a woman isn't such a bad thing. Being a woman is a singularly different experience than being a man. In every area of life, in everything you do, the expectations people have for you are different, the challenges you face are different, and the shit you have to put up with to get along is much, much different. This is true not because of some biological difference between the sexes but because of the way our society operates. A woman who has risen to Hillary Clinton's position has faced and overcome challenges that a male politician in her position has never encountered in his entire life. Hillary Clinton, simply because she is a woman, is a stronger person than most of the other candidates have to be, and I have immense respect for because of it.

Not only has her rise to power demonstrated greater strength than a similar male rise to power would demonstrate, but because she is a woman she knows what it's like to deal with discrimination. She knows what it's like to be completely and utterly dismissed because of her gender. Like I wrote about a few weeks ago, the only way to really sustain a belief in the reality of discrimination is to be subject to it continually, and honestly there's no way in the world that she will ever be free of the attempts at humiliation. The "iron my shirt," "make me a sandwich," "get back in the kitchen" comments will never end until she stops trying to be a part of public life, and by this point the hate is so ingrained that I expect that the mouth-breathers will continue to insult her until after she's dead. This means that she knows what its like to be powerless, and while not everyone who believes in discrimination champions the down-trodden, the belief itself is a valuable asset for anyone who seeks to lead a country.

Being a woman doesn't make you more qualified to be President than being a man does. But being a politically powerful woman in modern America does, I think, make you more qualified to be President than being a politically powerful man does. It makes me wish she wasn't such a hawk so I could have voted for her with a clear conscience, and honestly, like Melissa at Shakesville, if she does end up the Democratic nominee I will vote for her in November and then cry with joy because I'm just so goddamn happy to have a woman in the running.

Of course, a lot of this applies to Obama as well, although the discrimination he faced/faces is different, and although I don't have the personal connection of sharing the experience of the same kind of discrimination, I'll probably get all misty if I end up voting for him also.