By land, by sea, by dirigible

I got my paraffin melter today, a nice young UPS man brought it to my door, but it was a bright and beautiful day even before that. In spite of everything, I'm so glad to be alive.

I am the stuff of happy endings

Arches National Park, Utah

Goblin Valley State Park, Utah

Quite a few years ago, my family and I visited Moab, Utah. Possibly more than once, for probably more than a week- I don't remember exactly. I've been thinking, though, that it would be neat to go there again. The past couple of weeks we've been packing up stuff in this house so that we can have a giant garage sale, clearing things out so the house can be sold. Grandma is finally accepting that she needs to live in assisted living care, so the house is going to pay for that, which means Michael and I are out a place to live.

Things are kind of dissolving into chaos at the moment, but I'm oddly OK with it. Its occurred to me that not actually having a place to live might be just the excuse I need to take the roadtrip of all roadtrips. Not that gas prices this summer are conducive to roadtripping, but the idea of just taking off and seeing where I end up is incredibly enticing. And if I were to do this, I would go to Utah first I think. I could sleep in the back of my car, and spend days slowly creeping about these gorgeous canyons, maybe bring a sketchbook and work on pretending I'm an artist.

The practical, responsible me thinks that this is a very bad idea for any number of reasons, but on the other hand, it's not like I have a job or anything holding me to a specific place. I am interested in seeing the world, and although I am sick and poor these days, I don't have any particular reason to think that I will be less sick or poor five years from now, so if I'm going to travel anytime, why not now?

I wish it was the sixties

Its one of those days where everything seems wrong, and since I can't do a thing about the real problems I have, I try to concentrate on the small, ordinary tasks in front of me. I find that the best therapy for helplessness is to reach out and touch something real: plants in the garden or dirty dishes or yarn on a needle. Physical objects are both more solid and more malleable than fears about the future, more solid than pain or fatigue or worries about money.

Whenever a doctor reads my medical records and sees that I've been diagnosed with depression, they try to refer me to counseling, and I have a hard time explaining why I have no desire to go. Talking about things does make you feel better, but it can only help so much when your problems are genuinely unchangeable. No one can take away the pain I feel, and no one can make the VA give me the benefits to which I'm entitled; talking about things won't change that a bit, but talking is all the help that doctors ever offer.

Completing tasks that decrease the amount of entropy in my immediate environment is my primary method of coping. What I mean is, I plant seeds and knit sweaters because changing some small thing so that its different than it was before is a way of affirming my connection to the world, to life, to happiness. I put my world in order to prove that some things are improvable. I hate to assume that anyone is reading this, but if you see this and have a particular coping mechanism that you've more or less invented on your own, it would be neat to hear about it.

I completed the finishing on two sweaters in the past couple of days, and filled the tires of my bicycle this morning. I'm going to teach myself a new knitting pattern here in a bit, and things are growing in my garden. For now, the sun is shining, and I took some pictures.

What the Water Gave Me

Emotional pain is often the inspiration for great works of art, but physical pain doesn't act the same way on the mind. Physical pain does not inspire, it grinds. It pares the soul down to the barest essentials of survival, so that there is only a bright spark of self in a sea of agony. Pain is not in any way beautiful. It is shit and piss and vomit; it is mean and common, and most of all it is boring.

Frida Kahlo's art is not about pain, not directly. She painted the fear of pain, the love of death, political upset, tension between modern life and historical roots, the distress of being a woman. But she painted all this while in pain, and her work is subtly disturbing because of it. The amazing thing about her is that instead of allowing her pain to deaden what she felt and how she expressed herself, she somehow transmuted dust into gold.

When I am king

Sitting in my email inbox right now is a letter from a caseworker at the VA Regional Office of Vocational Rehabilitation and Employment, St Louis (Voc Rehab). This is the office that works with veterans who are disabled by a condition caused by their military service in order to retrain them for the workplace and help them find employment by providing things like assistive devices: voice recognition software, specialized wheelchairs or whatever you need in order to get back to work. They also do things like paying for college if they think that's what you need to be a productive member of society, or small business planning advice and loans. Voc Rehab interviewed me in January to see if there was anything they could do for me, a disabled veteran.

The letter in my inbox confirms that a paper copy of my official rejection letter will be sent to me as soon as possible so I can add it to my medical and employment history. The VA office here has found that I am unemployable, not rehabable, not worth spending tax dollars on, so I am not eligible for their program at this time. Incidentally, they made this decision in January, told me they sent me the letter in January, and are only now getting around to resending it.

There is another VA office in town, Disability Compensation and Pension (Comp & Pen). This office is tasked with taking care of veterans who have been disabled by their service; and by 'taking care of' I mean 'giving money to.' This is the branch that gives out disability payments, which are scaled based on the severity of disability from almost negligible, something like $110/month, to completely disabling, over $2k/month. If your disability is so severe that you can't find any kind of employment, you are officially entitled to the full 100% disability payments, which gives you about $25k a year to live on. It's not money that anyone would call riches, but at least it's above the poverty line.

You would think, that since the branch of the VA responsible for helping veterans find employment has found that I am unemployable- and this particular office is the fourth in two states, on the state, federal, and nonprofit levels, to find this- the Comp & Pen branch of the VA would be obligated to also find me unemployable, and therefore give me disability payments that I can live on. Well, you would think that IF you don't know the way the VA works. So here I am, poking at my library account online, bored because someone else has all the Buffy DVDs checked out and I can't afford to buy them so I must wait, contemplating the day when I am no longer able to access the internet from my home because my savings will have run out and I will no longer be able to afford internet access. In my bleaker moments, I contemplate a day when I will no longer have a home from which to not access the internet; but I know that this will probably never happen, because I have family. But if I didn't have family... it already would have. The VA provides me with enough to have a nice car to live out of.

All of which leads me to comment on this article that's been floating around, from the Christian Science Monitor: "Homeless: Can you build a life from $25?" Basically some former athlete white boy with a college degree and rich parents went out to prove that it's possible to go from being homeless to renting a place, even if you're ... a young, healthy, rich white boy with a college degree. Some choice quotes:

To make his quest even more challenging, he decided not to use any of his previous contacts.

Ten months into the experiment, he decided to quit after learning of an illness in his family.

"I was getting by on chicken and Rice-A-Roni dinner and was happy."

"I had a credit card in my back pocket in case of an emergency. The rule was if I used the credit card then, "The project's over, I'm going home.""

[In response to a question about whether his game would have been more difficult if he had child support payments or was on probation] "The question isn't whether I would have been able to succeed. I think it's the attitude that I take in."

"This isn't a "rags-to-riches million-dollar" story. This is very realistic. I truly believe, based on what I saw at the shelter ...that anyone can do that."

Speaking as someone who doesn't have the luxury of "quitting" my life when someone gets sick, who doesn't have an emergency credit card or any "previous contacts" that would do me any good, I just have to say that eating chicken and Rice-a-Roni for dinner sounds like the lap of luxury to me (meat is expensive, even chicken), and I deeply resent the implication that the reason I'm in the situation I'm in is because my attitude isn't focused enough on tugging at my own bootstraps. Yeah, I made some stupid decisions. I joined the Army- that was, in hindsight, blindingly stupid. But I'm not sick and unemployed because I'm lazy, and this kid's condescension makes me want to punch him in the face. Knowing that in the future people are going to point to the book he wrote as "proof!" that poverty is a choice that the government shouldn't subsidize with things like food stamps makes me want to puke.

There's a more eloquent takedown of this at Resist Racism: Playing at poverty.

I'm finally feeling better after being sick for a week; I have a phlegmy cough and I'm still blowing my nose every so often but I think the fever is gone at last and I don't feel as miserable as I did. The great thing about being sick is that you can get better, and once you get better life just feels grand. To celebrate, I went for a walk around the block.

Unfortunately, although it's sunny and cheerful-looking out, it's about ten degrees. My feet are still frozen into little blocks. The sky is terribly gorgeous, though.

you can't see the thin air

I had a medical appointment today. I was under the impression that it was supposed to be a referral for Cognitive Behavioral Therapy, so I went in all ready to explain that techniques for correcting irrational beliefs in order to improve one's outlook on life are all well and good, but if my beliefs are rational CBT isn't going to be helpful. I firmly believe that my expectation that my health is not going to significantly improve in the future is realistic, and furthermore, that accepting this hard truth is more helpful and healthy than continuing to deny it in the hope that positive thinking will magically cure me.

Turns out this referral wasn't actually for CBT, it was for drugs. The doctor I saw wasn't at all interested in hearing about my memory, concentration, or comprehension problems, and she wasn't at all interested in my history of extremely bad reactions to ridiculously low doses of various medications. What she was interested in was writing me a prescription for Prozac.

I'm not excited about the prospect of taking Prozac, although I agreed to it, of course; I don't ever feel comfortable not agreeing to a suggested course of treatment, because I'm very afraid that if I am ever the least bit non-compliant, for ever after every doctor will point to it and say "Well, it's too bad you didn't agree to this treatment, or you'd be well now. It's your fault you're ill." I'm not sure how rational this fear is, although it has some basis in how I was treated in the Army. Anyway, taking Prozac isn't that big a deal. I am fairly certain it will make me ill just like Effexor did, and I will vomit for a few days, lay about in bed feeling like I'm dying and then I'll recover and not take it anymore. I just wish that I could hurry up and get past the phase of treatment where doctors insist that making me more ill is the best way to treat me.

When going through my medical history with this most recent doctor, we discussed previous medications' lack of benefit on the pain relieving front. She was concerned that I may not be taking medication with the right attitude; her worry is that my cynicism is actually preventing the medication from working like it's supposed to, causing medications that would otherwise relieve my pain to do nothing.

This philosophy that attributes supernatural powers to my emotions is, I think, the worst thing about going to the doctor. I'm not a religious person, nor am I superstitious. I let go of my childhood faith when I could no longer convince myself to pretend to believe in a gigantic Santa in the sky causing good things to happen to good people and bad things to happen to the bad; I couldn't even believe in fate. Things happen because they are caused to happen by real things that exist in the real world, not because you wish they would happen, or pray for them to happen, or believe that they will happen, or deserve for them to happen. This is true of disasters and good fortune alike, and it's true whether I like it or not. It's also true whether you like it or not, which is why mostly I don't give a crap what other people believe about the world. I recognize that there is a human inclination to assign causation to things, and as this seems to be a fairly universal trait (that even I haven't missed out on) I might as well accept it.

It does get to be a problem, though, when it interferes with my health care. I wish I knew how to change things.

Social Safety Nets in Action

Gary Farber is just some guy. I don't really know him; he has a blog, but I don't read it, and he comments on Obsidian Wings, which I read, and maybe a few other places but I've never really talked to him. He has health problems that keep him from working, that have kept him from working much for years and years; because he's been ill for so long, he doesn't have enough credits in the Social Security system, and so he is not eligible for Social Security Disability. He's applying for SSI, which he's been denied and is appealing, but even if he does get approved for that, the maximum amount he's eligible for is $623/month. It's been a year since he applied, and best case scenario is it'll be another year before he knows if he's eligible or not for any aid.

In political circles, people talk about welfare like it's easy to get on, and once you get on you're set because the government pays for everything you need. In reality, if you're poor and ill in America, the government would really rather you just lay down and died. I am not sure if its really true that society has some sort of obligation to the weak and ill and poor. If there is no obligation to help your neighbor, what's the point of society? But I'm hesitant to say there is an obligation, that anyone is owed anything. Prescriptions for the behavior of others are always dangerous.

However, even if it isn't necessarily morally wrong not to help those who genuinely need it, it would still be neat if we could figure out a way to structure society so that the ill, the disabled, and the needy were treated with dignity and respect, and were provided for when they can't provide for themselves. The only other options are what Gary is facing: eviction, hunger, medical needs going unmet, homeless in the winter in Colorado, death by freezing under a bridge somewhere. Maybe there is no moral obligation for society as a whole to help the people who face these things, but it would sure be nice.

And it's not like anyone reads this thing, but still, Gary has a set up for donations and subscriptions to his blog so that maybe he can keep living indoors.

Also on the social justice front, a Lt. in the US Army, Elizabeth Whiteside, is being court-martialed for attempting suicide while in Iraq. Its a complicated story- what suicide attempt isn't- but the bare details are these: she was in charge of a trauma team in Iraq, working nonstop in the middle of the results of war; she became more and more depressed about the situation, which included a senior male officer who harassed his female coworkers and subordinates; she regularly received very high marks on performance evaluations and was loved by the team she led in Iraq; she had a dissociative panic-attack-type episode and shot herself in the abdomen, but hurt no one else; charges against her include "wrongful discharge of a firearm, communication of a threat and two attempts of intentional self-injury without intent to avoid service;" if convicted, she may be put in prison for life and will absolutely be ineligible for any kind of veteran's benefits, including physical and mental health services.

This unhealthy impulse to blame victims for their circumstances in order to deny them any help scares me. I don't want to live in a world that is so heartless and difficult, and I don't understand the people who work to make things this way. I mean, I get that if you have compassion for someone, that means empathy creeps in, which means you start to imagine what life would be like for you if you were in that situation, but I don't understand the depth of cowardice that refuses to face that fear and instead chooses to deny all possibility that disaster could befall Our Kind of People.

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.

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.