a tiny prayer to father time

I was going to write a bit of a rant about the framing of Gov Palin's decision not to abort her youngest son, who has Down's Syndrome, but this post at Shakesville pretty much says it better than I was going to.

Instead of my fascinating thoughts on politics, then, here are some pictures of my latest project, Lion Brand's #1100. The yarn is so thick that it only took me a few days to knit it, even though my first version ended up too big and I redid the front and back pieces. The sweater is still pretty bulky, but its oh so warm, and it suits me.




Now that that sweater is done, I'm starting on another one, for my little brother. My grandmother used to knit quite a bit, and when she died my mother inherited a half-finished sweater, which has been sitting in the closet for at least fifteen years. My mother never did anything with it, because there isn't enough yarn to finish the original sweater, but I have a new pattern (Durrow) and I'm excited to start working on it. The cables on this pattern are much more difficult than anything I've done before and the yarn is antique and if I keep this up I may one day produce a sweater that's actually stylish.


I am becoming quite the knitting geek. I have an account on Ravelry (my username there is Tayi also) and the last few books I got from the library are books on tape so I can listen to them and knit at the same time. I wonder if this is some flaw inherent in my personality, that I am apparently unable to do anything part-time, even knitting.

pull the tricks out of our sleeves

For various boring personal reasons, I'm looking into creative ways to live under a roof with an income of about $750/month. So far I've come up with:

• Working as a nanny for a family with one or two quiet school age kids in exchange for room and board. This plan hinges on the kids being extremely easy to take care of and no one needing me to clean or cook anything on a regular basis, but I think if there was a family out there who understood chronic pain... so basically its a very long shot.
• Living in the projects. Specifically these projects. The major drawback to this plan is the huge waiting list for spaces. That, and the fact that making my way through government paperwork gives me a blinding headache just thinking about it.
• Buy some cheap rural land and live in my car while slowly building a tiny house like this one from the Tumbleweed Tiny House Co. Making this affordable might be impossible, and living in my car would be uncomfortable, but this is the solution I like best in the long term. My dad has done a lot of renovations on his house, and I know he and my brothers would help me were I to try to build a house like this, so building it might not actually be that hard. Just the money would be the issue, really, and the VA does cheap-ish home loans... but this one is a bit far-fetched.
• Living with my parents while I fight the VA for the full benefits to which I am entitled. This is what my parents want me to do, but I have to say, I'm not enthusiastic.
  

My other real option is to forget about the roof over my head, take off in my car and live in a Walmart parking lot somewhere. It would be an interesting life experience, I'm sure, but I think it would freak out my parents a little bit, and I'm actually afraid that if I do the homeless thing I'll get too separated from normalcy and I might have some trouble getting back to normal if the situation ever improved. Also, being homeless is quite dangerous for women, or so I hear.

If anyone has any ideas to add to the list, feel free to share.

Cold Hard Reality

In the past couple of days I've read Molly Ivins' Bill of Wrongs and John Grisham's The Innocent Man, and I think I've had my dose of cold hard reality for a little while. But before I retreat to my hammock to read pulp fantasy novels, I just have to comment on this post at Obsidian Wings, "Unless a Solder Has a Personal Fortune...". The post quotes an Army Times articles to emphasize how little disabled vets are left with after they're discharged; it amuses me that the article gets it so wrong, like while the writer wanted to bring some light to how vets are treated, she couldn't bear to actually admit just how bad it can be. Hence, this quote:

(I)njured service members are discharged on just a fraction of their salary and then forced to wait six to nine months, and sometimes even more than a year, before their full disability payments begin to flow. (...)

Most permanently disabled veterans qualify for payments from Social Security and the military or Veterans Affairs. Those sums can amount to about two-thirds of their active-duty pay. But until those checks show up, most disabled veterans draw a reduced Army paycheck.

It gives the impression that a disabled veteran, upon leaving her military base with discharge papers, receives a reduced paycheck until the VA and/or SSA get their shit together to evaluate that veteran. And once the VA does evaluate that vet, which happens within a year, she can expect to actually get two-thirds of her active duty pay. And this is supposed to be an example of the system failing- which I guess it is. It makes me wonder if the writer even realizes that this horrible scenario of hers is orders of magnitude better than what happens to many, many vets.

Just to be clear: I have never heard of a vet receiving a reduced Army paycheck after discharge. Maybe that happens if you get a certain disability rating from the Army on discharge; when I was discharged, I got a zero rating from the military board although I was only able to work part-time at a civilian desk job at the time, and I was told that the military board often gave soldiers zeros when they deserved much higher disability ratings. The policy was to give soldiers as little as possible from the Army and just let the VA deal with them. So maybe you get a bit of an Army paycheck if you're a combat amputee or something, but your average disabled vet doesn't.

So you get out of the Army with maybe some severance pay, a few thousand dollars or so, and it takes the VA 3-4 months to get you into the system so you can apply for disability benefits from the VA, and then the VA takes a year or so to decide your claim. But the VA also has a policy of minimizing payments for disability, and so its quite likely that if the VA even admits that your medical problems are service-connected, they'll minimize your symptoms, and therefore your payments, as much as possible-or more. (The most recent example of this in the news was the hearing on VA administrators directing their subordinates to find that vets with PTSD had "adjustment disorder" in order to save on compensation costs.)

So you've been out of the military for a year, not working because of your disability, and you get a disability rating of 30% or 40%. So you appeal, but appeals don't have a time limit at the VA- they have no incentive to process your claim, so it gets tossed on a pile, and maybe a couple years later someone looks at it. If you're lucky, that someone will take the facts into account and get you the compensation you need; if you're not lucky, they won't, so you appeal again and the wait starts all over- and you're still living on $512/mo.

This is what really happens, this is how vets are really treated. It destroys people's lives and is an absolute disgrace; it irritates me that all anyone talks about are best case scenarios.

A Gorilla on the Road

There was this post for BADD, by Mary at This Is My Blog, comparing having a disability with having a gorilla living in your house with you. I find it a very apt description of the process of "taming" your illnesses and injuries until you're able to cope with them in a practical way. Anyone interested in a vivid illustration of what it means to cope with a disability should read that post.

I think in the past year I've come along way in managing my life. It's helped that I haven't been putting pressure on myself to go out and get a regular job and fit into a regular life; in some ways getting the Voc Rehab people to admit that I'm not rehabable has improved the quality of my day-to-day life. I've been able to allow myself to slow down and take all the time I need to get places and do things, but more importantly, I've changed the things I try to do.

And now it's summertime, the time I feel the best, and I'm contemplating taking my new openness to life onto the next level. I've written here before about my desire to travel, and about my poverty due to the VA's denial of the reality of my condition, and now these two things have come together fortuitously. My husband and I will soon be out a place to live due to various factors, and my tentative plan is to start a grand journey, camping out of my car and exploring the world a little bit at a time. My gorilla and I are going on the road.

First stop will be my parents' house outside of Seattle, possibly for several weeks, and then I hope to head south. The trip from here to Washington will take me several days; its my trial run to make sure that I can actually handle sleeping in the back of my VW and driving around strange places without getting too stressed out. Maybe the trial run will fail and I'll be stuck living in my parents' attic or something, but I have high hopes, and faith in my hard-won coping skills.

I also hope that this may help my husband. Quite frankly, while I have made friends with the gorilla in our house, he hasn't. It would have never occurred to me, before, that the person with a seriously life-altering physical event could adapt to the changes in their life better than someone who just has to sit and watch the person affected. But a gorilla in the house fixated on your housemate is still a gorilla in your house, I guess, and he's had a hard time. I hope that giving him some time where I'm not sitting around being sick at him may help him out.

I realize that all my high hopes may be a little foolish, brought on by sunny days and a desire to choose to be optimistic, but even if things go horribly wrong, I'll still have a nice visit with my family and some neat photos to share when I get onto a computer again. My sister's cat had kittens like two days ago, so when I get there they'll be a week and a half-ish old. Honestly, I'm about as excited to see those kittens as I am to see the rest of my family, how sad is that?

Remembering Discrimination

I have this theory about how people remember pain, and how those memories are recalled and used in daily life. I've written about it at length here, but basically the idea is this: pain is a traumatic experience that would harm the mind if it were remembered clearly, so the human brain regularly blurs the memory of pain so that it is more remote. Its easy to remember the fact that pain is unpleasant and distressing, but its not at all easy to remember the actual sensation. My evidence for this theory is both my own experience with chronic pain- which is difficult to remember even when I experience it every day- and also signs in the relatively healthy population that indicate that people don't remember the pains they've encountered in the past, things like drug laws that severely punish chronic pain sufferers, doctors who consider a set amount of daily pain to be perfectly acceptable and not worth treating, people who are otherwise compassionate who just assume that chronic pain sufferers choose not to engage in certain activities simply because they are lazy, and so on. People act like they have no idea what pain is, because they really don't remember it when they aren't experiencing it.

I have a more tentative corollary to this theory: discrimination is like pain in that it is a traumatic experience that is difficult to understand unless you are currently on the receiving end of it. I used to be pretty sure that this was true, but now I'm not as sure.

My evidence in favor of this theory was my experience with disability rights activism. As I've said before, my acceptance of my disability has transformed the way I see the world, my place in it, and the place of other people. I have a stronger sense of the goods of society, which includes a much better understanding of all the ways those in power discriminate against out groups on the basis of race, gender, religion, etc. I understand sexism and racism better because I understand disablism. Obviously there are differences between various outgroups, and there are a lot of ways in which being female, or being gay, or being Latino, or whatever, is not at all like being disabled. But I think that, for example, understanding the ways in which being seen as a "good" crip (that is, inspiring but not socially challenging, asexual and passive and dependent) is just as marginalizing as a negative stereotype, helps me understand how being seen as a "good" woman (that is, motherly and submissive, pretty and a good cook) can be just as marginalizing as negative stereotypes of women. And I think that knowing the cost of trying to "pass" for perfectly healthy helps me better understand what it must be like for a homosexual person to "pass" for straight: not only is there the cost in physical pain, but I have to avoid talking about most of what my life is like, hiding the things that are important to me for the sake of the social comfort of the person I'm talking to. Obviously it's not the same. But I think its similar, and while my understanding of discrimination in all it's forms certainly isn't perfect, its better than it used to be.

The thing is, though, that political events of the last few months have clearly proven to me that experiencing discrimination yourself doesn't necessarily bring understanding of the discrimination that anyone else experiences, even if you understand what is going on in your own situation. When the Democratic primary races started, I assumed that in general people who voted Democratic would think more or less along the same lines I do: people who experience discrimination on whatever basis have more in common with each other than with people who don't experience discrimination regularly. So white women are more likely to have philosophies and voting patterns in common with minorities than with white men. And as far as I know this has traditionally been the case (although its not like I'm an expert on election history). The Democratic party is the party of women and minorities and the poor and those marginalized on the basis of religion or gender or any damn thing, right?

But it seems like I was wrong. It seems like there are a lot of people out there who think that the best way to achieve power for their particular marginalized group is to crowd out anyone else. There is a particularly nasty video making the rounds of a Hillary supporter making racially based arguments against Obama, and the Hillary Sexism Watch at Shakesville is up to installment #104. All this infighting makes me think that I am entirely wrong about the instructive value of discrimination. Maybe its just that you have to chose to learn, and then you have to chose to generalize from your own experience to others' experiences. Maybe we're just not brave enough to empathize with others who are in pain.

I also don't think that this is likely to work, as a political tactic. I mean, as a chronic pain sufferer, if I want to accomplish a political goal like, say, increasing funding into research on pain and brain function, my best bet is to include everyone who suffers into the same coalition. When it comes to policy and social movements that benefit those with chronic pain, there is no difference between people with arthritis, people with migraines, people with phantom limb pain, people with fibromyalgia, or people with diabetic neuropathy. I believe it is the same for those who are trying to fight discrimination. We all have the same goals, and forcing divisions does no one any good.

Disability and Citizenship

(This is sort of for BADD, except that was a month ago. Clearly, I'm much too slow for the internet.)

I am an anarchist at heart. It is an impulse that goes deeper than rational thought; I don't know how it got there, but it is definitely lodged somewhere deep in the back of my brain, this idea that the essence of government is coercion, which is immoral. Perhaps this is the result of my rejection of the paternal God of my childhood, perhaps I simply read The Moon is a Harsh Mistress at too impressionable an age, but whatever the reason I am an anarchist.

I am suspicious of government in all its forms. Even when I know, rationally, that governmental power is required to accomplish a good goal, the incarnation of government irritates me. Sweating pot-bellied men in orange vests on the freeway demanding that everyone drive 45 mph, incomprehensible instructions on tax forms that make my eyes blur painfully, impersonal and disinterested bureaucrats at the Social Security office or the DMV who make you sit in a hard plastic chair waiting for your number to be called while they go to lunch: I hate it all. This morning I read that the improved GI Bill had been passed in the Senate with a veto-proof margin, and even though I am strongly in favor of social support for veterans I still cringed when I saw that the bill passed because it was attached to all kinds of other government spending, because the fact is, you could show me that a spending bill was perfectly efficient and effective in funding only good programs, and I would still be uncomfortable with the amount of money and power that was being funneled through the government. I'm an anarchist, I can't help it.

I used to assume that my gut reaction to government was evidence that government was actually a bad thing. In my freshman year at college, I worked on a campaign for a Libertarian Party candidate for state Rep, and in 2000 and 2004, I voted for the Libertarian Party ticket from local city elections to President. Any agency monitoring my library records would have put me on a watchlist: I read things on tax protesting and survivalism, Ruby Ridge and basic bomb making (I was just curious, I swear), secession and how to obtain official citizenship from obscure countries in the South Pacific that will give you a free passport and let you do just about anything you want.

I still think a lot of this stuff is very interesting. A few months ago when there was news about parts of the Lakota Nation filing papers to revoke the treaty they signed with the US a hundred or so years ago and effectively secede, I was cheering them on. I'm pretty sure now, though, that whatever my gut feeling on the matter is, any kind of social structure requires a government with coercive power- a monopoly on violence as anarchists are so fond of saying- in order to remain stable. And although I still feel that coercion is wrong even if a majority approves it, I think in most cases coercion in the form of taxes, regulations, and government-provided services is actually a lesser evil than pure individualism.

The thing about anarchism is, to the extent that it is asocial, its very foolish. When you're young and healthy and idealistic, its possible to believe that you can transcend society. But you can't. Not even a pseudo-Aspie like me can ever really truly be alone; everyone relies on other people. As soon as you have two people in the same space, you have interactions between them, compromises and annoyances, all the things that make up a society.

Societies can't be avoided, so they must be managed. The anarchist says that societies don't need to be managed by any authority: they will organize themselves along natural (usually economic, either free-market or communist) laws. But people don't really work that way. When I was healthy I could believe that people would naturally help those around them if they saw that there was no other social safety net to help the helpless. I really believed that there would be enough people who cared on a personal level that no coercion would be necessary, that the impulse to charity, which is very real, would be enough to make society a friendly place.

Obviously I was naive. It took illness to teach me that without law, enforced literally if distantly with the barrel of a gun, society is more than happy to take from any productive person as long as she can work and then when she can't fit into a pre-formed space in the economic machine toss her out on her ear to die cold and alone. People do have good in them, but, as any starving child in Africa can testify, out of sight is out of mind and society works to maintain the comfort of the many by hiding the pain of the few. Before I got sick, I didn't understand the reality of living with illness, so I didn't understand the role society is able to play in making life accessible to the ill, and I didn't understand how difficult and necessary it is to channel the impulse to charity through society into actual physical benefits for those who are in need.

Anyway, this is really long and possible a bit incoherent. The point is, at heart I'm still an anarchist. My votes, though, go to Democrats, and although I may cringe at the veterans' benefits/spending bill that was passed the other day, I know intellectually that this bill is a good thing, because I am disabled, and being disabled has made me a better citizen.

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.

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.

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.

A lot of blogs have been doing an end of the year thing where the writers pick out their best post of the year and repost it, or pick out their favorite post by someone else, and link to it. I'm not much for this end of the year nonsense, and I don't have a post of my own to put up again. I suppose I shouldn't even pretend that I think this is the best post I've read all year; I don't think you can make that kind of statement when you can't remember 85% of the year at all, although I suppose you can't stop people from saying these things anyway. All that aside, here is a post from Elizabeth at Screw Bronze!, that says some of the things I would like to say about pain. Her pain is not the same as mine, but the experience of agony marks us in the same ways and what she writes is true.

Things happening for no reason at all.

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.

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."

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."

and

"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.

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.

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.

More medical drama

This week is shaping up to be quite unpleasant. I had an appointment at the VA on Tuesday, for my claim for increased compensation based on unemployability. The doctor who interviewed me wasn't unpleasant, but they didn't have my records and didn't know where my records could possibly be, so I don't have any confidence in them reaching a conclusion about my medical history that's based on fact. I have another appointment tomorrow morning, with a psychologist I think, where I'm going to have to lay out my theory about how unending pain and crushing fatigue can lead to mental distress and hopelessness. Who knows if they'll buy it; even if the shrink thinks it's reasonable, without my medical records they're likely to conclude that my medical history doesn't uphold a diagnosis of depression stemming from my fibromyalgia.

On top of the loss of my medical records, my appointment tomorrow is at 9am, which means I have to be there at 8:30, which means I have to leave the house at 8:00, which means I have to get up at 7:30 at the latest. Last time I tried to get up so early on bad sleep, my body went into freak out mode. I was getting adrenaline rush ickness from standing in the bathroom brushing my hair. Its like any deviation from a set schedule makes my body think I'm in mortal danger; unfortunately, the irrational reaction to mortal danger makes me nauseous, shaky, headachy, fatigued, and weak to the point where I can barely stand up.

To try to counteract this effect, I've been getting up half an hour earlier each day for about two weeks now, to try to spread the ill effects out and thereby dilute them. It's worked to a certain extent: I have certainly felt ill the whole time I've been doing this. The last few days have been the worst, as I get up earlier and earlier. Its starting to feel like I never actually wake up, I only dream about getting up and feeling ill while trying to go about my life. This morning, I got out of bed, walked to the couch and sat down, and then sat and stared at the carpet for about half an hour. Then I went outside to the porch, sat down on the steps, and stared at the grass for a bit. The fresh air helped some, but I still don't feel like I'm actually capable of thinking more than one coherent thought in a row.

Maybe being half-asleep during my psych appointment tomorrow morning will actually work in my favor; if I can't understand speech due to my inability to comprehend whole sentences at once, surely they will see that something is wrong with me.

I have another appointment on Monday morning, even earlier but closer to home, so I have to get up about the same time. This appointment is for SSA, not the VA, which I think means I'm not eligible for federal disability. If they can't find me eligible based on the 10-page report they got from Laurel Hill saying that I was not able to work in any capacity, I don't think an hour-long medical review is going to do anything but convince them that I'm capable of working. I guess I never really thought they would find otherwise, but it's frustrating. If the people who are supposed to help disabled people find work say they can't help me because I'm too disabled, and the people who are supposed to support disabled people when they can't work say they can't help me because I can work, what do I do then?

There's a shadow just behind me

I used to be the kind of person who was sure that I was right. Always, no matter what, I knew that I had thought things through and seen all the complications and formed the right opinions based on The Way Things Really Were. I was able to get away with this because I was young, and because I was intelligent and eloquent enough that people listened to me with respect even when they thought I was wrong, which only proved to me that I was right. Like many young women, I was not confident about myself in many ways: I thought I was overweight and ugly, and I thought that I was obnoxious and no one would want to be friends with me if they knew who I really was. I still don't know how much of this is true or not; these are things that are hard to determine from the inside, sometimes. But I was always sure that when it came to ideas, I was competent and capable and I knew that people should listen to me.

And then I went and made a series of the worst decisions I could possibly have made in the circumstances; I joined the Army, which was not only a totally stupid thing to do as someone who had ideals about how power should be used, considering the timing of it all, but was also a bad idea on many other, more personal, levels. Then I got hurt, and the whole medical farce played out, and as much as I hate to blame myself, I didn't insist on the kind of treatment I needed, because I didn't know that I was allowed to insist, and here I am today.

Even if I didn't have the fibro fog to deal with, I think I would no longer trust my own judgment. The irritability, inability to concentrate or make small decisions, and poor short term memory are difficult, of course. The impression that my memories are being erased, leaving me without a past longer than a few months, the feeling that nothing that happens is permanent because I know I won't be able to remember it in just a few weeks, is worse. But even if all I had to deal with was the pain, without the doubts about my mind, I would not trust myself. I got myself into this mess all while thinking it was a grand idea; I can no longer be sure about my ability to determine the wisdom of any course of action.

This state of mind has hindered me from accepting that I am disabled, or rather from getting used to the idea. Disability, and the circumstances around it, have destroyed the basis for all the confidence that I had in myself. It seems as though now I'm going about without any skin on, so that everything that happens causes me pain. My body and my mind mirror each other; it is a feedback that can lead very quickly to despair, and I do not know the way out.