Friday, December 29, 2006

Feast of the Sacrifice

So the US and its puppet in Baghdad are celebrating a twisted form of Eid al-Adha today by sacrificing that most flawed and defective animal, Saddam Hussein, to the god of whatever the hell Bush et al. are trying to do in Iraq (securing oil revenues? a Pax Americana Empire?).

I feel so ambivalent. Do human beings get more unpalatable than Saddam Hussein? As a Christian, I strive to view each person as made in the image of God. It's why I'm opposed to the death penalty. But, well, if ever I had to lean on the mercy of Christ to view someone through the eyes of Christ, it is with that monster from Tikrit.

So then, why do I feel like crying?

A. told me tonight that his mom said she feels sorry for Hussein. We both remarked that it takes a special talent - which apparently Blair and Bush have -- to make someone actually feel sorry for the Butcher of Baghdad. That and I suspect his mother is a better Christian than I.

No, it's not sympathy for him that has me here on the brink of tears. It's that this doesn't feel at all like justice. He will not have to stand trial now for his most heinous crimes. Iraqis will not have the chance, like South Africans did, for truth and reconciliation. There will be no reconciliation among Kurds, Shia, and Sunni, only throat-slitting, bullet-riddled civil war. The truth about US involvement in Halabja, as Robert Fisk explains, will not come out.

Who encouraged Saddam to invade Iran in 1980, which was the greatest war crime he has committed for it led to the deaths of a million and a half souls? And who sold him the components for the chemical weapons with which he drenched Iran and the Kurds? We did. No wonder the Americans, who controlled Saddam's weird trial, forbad any mention of this, his most obscene atrocity, in the charges against him. Could he not have been handed over to the Iranians for sentencing for this massive war crime? Of course not. Because that would also expose our culpability.

When Hussein was first found guilty back in November, Fisk asked "Have ever justice and hypocrisy been so obscenely joined?" Now that Saddam Hussein is dead, the justice part feels missing and I think it was the last sentence of his article today that explains why: "But we will have got away with it."

On Christmas my mother invited, among others, a loud, opinionated fundamentalist conservative who I had the discomfort (literally -- I could barely move my arms to my mouth!) of sitting next to. He went off on several issues, most of which demonstrated veiled misogyny and homophobia that I just sort of ignored. But then he got around to Iraq and how they attacked us first, blah, blah, remarkably stupid blah. Often I just don't bother much with people like him because he clearly doesn't know anything, even though he thinks he knows everything, and there's not really much point. Yet Monday I found myself just going off on what we've done to Iraq and it's all well and good that we can sit at a table stuffed full from a large meal (or not -- my mother is not known for her culinary skills) and calmly discuss Iraq while Iraqis are dying every day and without electricity and water. He, of course, believed he was an expert on Islam and went home smugly satisfied that Muslims are evil and blowing the shit out of them is a good, Christian thing to do.

Later I sat with myself for a bit to observe why I went off. Why I let him get to me when people such as he usually don't. Some of it had to do with my lack of any authority now because of illness. I have very little voice anymore. I spend most of my interaction with people in a sort of subordinate position -- the patient -- rather than a more authoritative or even equal position. But that's a meditation for another post. What a lot of it came down to was my anguish over the sheer horror of knowing what has been, is, and will happen in Iraq.

Between 1 and 1.5 million Iraqis died during the sanctions regime (yet one more on the list of horrible crimes for which Hussein is now confronting his maker). I remember protesting and weeping during the nineties. During a course on genocides, I talked my small group into using the US-mandated UN sanctions as our example of a form of genocide. My anguish then regarding the Clinton administration's policies seemed as grave as it could get.

Then came the war. At least 655,000 more Iraqis have died than would have had we not invaded Iraq. This now means approximately 2 million Iraqis have died directly because of our actions, and three million are homeless.

Now consider the fact that Iraq has about not quite 30 million people. Ten percent of the entire population is homeless -- thirty Hurricane Katrinas, if you will -- and just under that have died because of United States. While we keep going on about the 3000 who died on September 11 -- and make no mistake, it was indeed a great tragedy -- imagine if 20 million Americans died. And for...what? For what great cause have so many children, so many fathers and sons, daughters and mothers been sacrificed to Molech and Iraq turned into a smoldering hell?

Yes, this is the twisted American feast of sacrifice: our sacrificial tyrant surrounded by bullet-ridden bodies and refugees.

Saturday, May 13, 2006

The list of loss

Yesterday was CFIDS Awareness Day. So I thought that I would list the things that CFIDS has taken from me. You know. For awareness sake.


Singing -- I used to sing all the time. In the shower. In the kitchen. Around the house. I even use to cantor at my parish. Just a couple of weeks ago, a woman from my parish mentioned in an e-mail to me that they miss my sweet singing voice. I miss it too. I still sing a little bit every now and then, but since it's so energy intensive, I don't sing nearly as much.

Dancing -- Sometimes when I'm feeling good I boogie a bit to Shakira or Amr Diab. But boy does it wear me out after a minute or two.


Being reliable

Going to church

Motherhood -- I always used to think that the term "biological clock" was a myth. At 33 years old, I'm appreciating that it's very real. And I'm starting to come to terms with the fact that I may very well never be able to bear children. First of all, there's my history of deep vein thrombosis and pulmonary embolism. And then hemorrhaging on the anti-coagulants. And then having to be hospitalized a second time for the pulmonary embolism. Even if I was healthy these would be serious barriers to safely giving birth to a baby. But add chronic illness to that, as well as the fact that each passing year I'm sick decreases my fertility, it looks very unlikely that I will be a mother.

Playing with my nieces and nephews

Reading and processing complex information (See "career" above.)

Riding a bike -- I have recurring dreams where I'm riding a bike. Symbol of being healthy I presume.

Friends -- It's not like any of my friends have stopped being my friend because of my illness. Indeed, for months after the surgery that ended in the DVT and PE, I had at least one visitor a day -- sometimes two -- for several months. It's just that, they all went on with their lives and I couldn't.

Gardening -- Hopefully at some point I'll get a nice little container garden going on my balcony.

Independence -- I depend on the government for my income. Meals on Wheels to cook for me. My caregiver to clean my apartment. My mom to drive me to the grocery story and anywhere else when I have the strength.

Privacy -- As a recipient of SSI, I had to provide all my bank statements to my case worker when I first signed on (after waiting 20-months to be approved for benefits). I'm required to keep all of my bank statements to provide to my case worker when my case is reviewed sometime this year. So, you know, don't wanna make any kinky purchases with my debit card.

Ability to earn a living

Ability to spend time with my boyfriend -- As a UK citizen, he's only allowed to be here for roughly six months (well, technically there are no specific rules but according to the State Department, you're not supposed to "abuse the rules"). If I were healthy enough to get on a plane, I could go and spend up to six months in the UK (and that is a definitive rule). Though because I'm on SSI, there are also limitations on how long I can be out of the country (no longer than 30 days or one calendar month -- I haven't gotten a definitive answer from Social Security).

Interacting with people I can see -- Yes, I chat with people online and if I had a web cam I suppose I could see them too. But it's not quite the same.

Getting out of the house on a regular basis

There are probably things I'm forgetting (what's new, right?). But it's a pretty sobering list nonetheless.

Sunday, March 19, 2006

The Dying Days

Healer of my soul
Heal me at even
Heal me at morning
Heal me at noon
Healer of my soul

Keeper of my soul
On rough course faring
Help and safeguard my means this night
Keeper of my soul
(John Michael Talbot)

There was an episode of the X-Files -- one of the later ones -- where the villain was this guy who would kill his victim by sucking the life out of them. He'd open his mouth and you could see this gaseous form, the person's spirit I presume, slowly come out through of the mouth of the victim and then suddenly they'd collapse dead.

That's what having CFIDS is like.

Yeah, I never die, though there are days when it feels like I will -- the Dying Days. Like someone is sucking the life out of me just like that guy from the X-Files. Like someone missed something somewhere and now I'm going to slip away.

It has happened. Casey Fero of Wisconsin, who had been diagnosed with CFIDS, died in his sleep last summer. The autopsy showed that he died of heart failure from a long-standing infection of unknown etiology. When I take into account that the high blood-pressure problem I started having last spring disappeared once I started taking doxycycline (an antibiotic), there are moments when I'm good and truly afraid.

The last few days have been the Dying Days. I tell myself I'm being incredibly hypochondriacal, which is the last thing I should be with an illness like this. But what if my fear of seeming hypochondriachal is keeping me from expressing to the doctor just how seriously ill I am?

Nightime feels particularly frightening. Normally when I have the Dying Days, I tell myself that yeah, I've felt it before. And I woke up the next morning. And I'll wake up tomorrow morning. And then I go to sleep. But every since this last fall after the experience with the doxycycline and the story about Casey, that no longer works to allay my fears.

Last night I found myself afraid to close my eyes. Insisting that nothing is going to suck my spirit out of me. Thinking of that old prayer: now I lay me down to sleep, I pray the Lord my soul to keep. And if I die before I wake, I pray the Lord my soul to take. Then I thought about a lot of the Orthodox morning prayers from St. Basil and other early Church Fathers in which there is some sort of thanksgiving for living through the night. Superstition may have played a part in that, but I think it also reflects what living was like before EKGs and MRIs and sophisticated lab tests. You never really knew if you had something that might kill you.

Again, sorta what it's like having CFIDS.

There are no blood tests to tell you if you have it or not. There's not a machine they can hook you up to that says there's something wrong with your heart (or is there?) or your brain (well, fMRIs do show that we process pain differently). We just have all these little signs here and there saying something is not quite right. And, of course, living on the inside of it you sure as hell know something is wrong.

I find that all I can do is simply acknowledge that I have no control over this situation. That worrying will not change whether I'm dying or not. I simply surrender my need to know. Focus on each moment I have right now, though at times even that is frustrating because, well, it's hard to live life to the fullest when you're laying flat in bed. But then, usually the assumption there is in doing stuff and while I suppose I need to work on the being -- whatever that may mean.

And maybe I should make sure my mom has A.'s email and phone number in the U.K.

Tuesday, February 28, 2006

The born again feminist

I'll admit it. I'd never really thought about feminism much.

Not that I haven't known that I'm only able to not think about it because of the sacrifices many women before me have made. When I went to visit my great-grandmother before leaving to go to my freshman year of college, she grabbed my hands and remarked wistfully about how I have opportunities she never did. I can tell you at that moment I tingled with gratitude from my toenails to my split-ends.

Yet, those days of discrimination and oppression were over, right? I was never told I couldn't be anything I wanted to be because I was a woman. I was never treated any differently by my professors. I was accepted to top graduate programs in my field (Middle East/Arab Studies). The only time gender ever came into anything was when I was having my period or got the unsolicited lecture about "don't you know how they treat women over there?" when I would state what my research field was (because, you know, though I've studied three Middle Eastern languages as well as visited the region, I wouldn't know ANYTHING about that...).

Sure, I was aware that women were still significantly underrepresented in the academy. That the same struggle to gain tenure that our male colleagues faced also just happened to coincide with the time we were most fertile. And they were points I argued with those same male colleagues who would try to assert that they had to make the same choices about family during that time too.

But was I a feminist? Well, perhaps in a vague sort of way. It certainly wasn't the first label I'd give myself. I mean, feminists were those bra-burning, abortion-obsessed, Ms. Magazine-writing man-haters from the 1970s.

So I had to laugh with Germaine Greer when a Vatican letter in 2004 excoriated feminism. Seriously, had Ratzinger not left the Vatican in thirty years?

And then several months back I was surprised when, during an email exchange with a guy from a Usenet group that I participate in he described himself as a feminist. People still called themselves that? Yet that time I also felt rather sheepish. If a guy was taking feminism seriously, why the hell wasn't I?

Now that I'm no longer on the academic fast track and instead spend my days painfully aware of how little control I've had over my body for a very long time, feminism has begun to make a lot more sense to me.

My feminist awakening has come via my study of Orientalism, something all good little grad students in Middle East Studies do their first year. We trudged our way through Edward Said's fifty-word sentences and learned that the Orient was a concept created by elite Europeans in order to dominate them politically, militarily, and economically. These elites then became the authorities on the Orient, rather than those who actually lived there. Indeed, Orientals couldn't possibly be experts on the Orient because, well, they were Orientals and therefore weak, emotional, misogynist, sensual, and violent. In other words, incapable of being experts. At best they could be taught, like little children, how to have democracy and a market economy.

While I struggled to make enough sense of Said to write my paper in grad school, I suddenly understood Orientalism as a patient. If you've ever been in the hospital when residents are doing their rounds, you know what it's like to be imagined and objectified. You are simply there for them to learn about. They are the experts about you. Indeed, you can't possibly be the expert because you are the patient, the constructed.

One might argue that there isn't the same political agenda behind what doctors do. They are not out to colonize their patients and use them to further their empires. They are there to help people. And it's very true that a lot of doctors go into medicine to help people. But patients are the means for their, often large, incomes. And indeed, sometimes even empires -- academic or otherwise.

I keep replaying my experiences over the last several months with the urologist I was seeing for these persistent urinary tract infections. He'd always walk in and call me "kiddo." At first there was an appeal about that. It made me feel sort of young and vibrant at a time when I felt anything but. At the third appointment he slapped the chart shut and said, "alright, I gotta get in there." So, his medical assistant came and prepped some instruments and then I undressed from the waist down and took my position on the table with my feet in stirrups. Then Dr. P came in and stuck something up my urethra. Now, I've felt a catheter in the past and it was uncomfortable, but this was excruciating. I could feel liquid going in and out and when it went out it hurt even more. "Ah, see, that's a sign of Interstitial Cystitis." He left for a moment and came back. "I'm going to do something called a DMSO wash," he said as he inserted something up the tube in my urethra. "Now you won't have to keep going to the bathroom all the time." But...I didn't have to go to the bathroom all the time and had never even said that I did. "And you won't keep having to get up all night to pee." But...I rarely get up at night to pee.

Was he even listening to me?

As some of you may remember, two hours later I was in the ER having to be catheterized because I couldn't pee at all. You are not more aware of how much control over your life you lack than when you're peeing unconsciously into a bag strapped to your leg.

The next morning when he decided to leave the catheter in for a few days, he gave me a sample bottle of Flomax. "This will help things calm down a bit," he said with such certainty, despite the fact that just three minutes earlier in response to my ER visit, he exclaimed, "I don't know what's wrong. I've never had that happen before."

When I got home I looked up the drug to make sure it wasn't going to interact with any of my other medications and found that Flomax is a drug for prostatitis. Um, he is aware that I don't have a prostate, isn't he?

He removed the catheter a few days later and had me come in every couple of weeks to check my pee for infection. I had told him that I usually don't show leukocytes in my urine. You have to culture it to find the infection. He did the first time, though assumed it was clean when he did the DMSO wash only to find out three days later when the results came back that I did indeed have an infection. But after that he never bothered with culturing. And when my urinanalyses were clean twice in a row, he sent me home with a "good girl" and "nice to see you again, kiddo" and a promise that he'd do a biopsy if I had another infection.

I knew something was still wrong. I mean, I was still in a hell of a lot of pain. But all I could think of at the time was what the hell is wrong with my body? Why wouldn't it just show leukocytes like it was supposed to? Why wouldn't the pain just go away now that nothing was apparently wrong with it? Why wouldn't it just be a good girl?

Yet there was also a part of me that kept feeling like the problem wasn't with my body but with him. Was all the "kiddo" and "good girl" a way of reinforcing the patriarchal dynamic in medicine? A way to remind me of my place?

So when the inevitable infection came (this time two separate bacteria at the same time!), I decided I needed to go in there remembering that I'm not a child but a woman with a serious health problem that needs to be adequately addressed. I wore my hair up to try and look as "grown-up" as possible. My appointment was first thing when the office opened. And though he may have double-booked the appointment so that this guy also had an appointment first thing, he saw the thirty something male lawyer wanting a vasectomy first. And though none of my appointments with Dr. P have ever lasted more than five minutes save for that disastrous DMSO wash, he spent 40 minutes shooting the breeze with this guy (I could hear because neither of our doors was closed). When he finally did come into my room, I stated that the infection had come back, and that I was returning to him as he had instructed and that my doctor said I needed to have a cystoscopy. He nodded curtly, slapped the chart shut and summoned the medical assistant to prep for the cystoscopy.

Huh? Everything I'd read about cystoscopies said that they took place under a general or local anesthetic, usually in a hospital OR. When I mentioned this to the medical assistant, she snapped that they weren't doing that today.

I undressed, but kept thinking, with memories of that awful pain from before, Michelle, you can't let him to do this do you.

When he came in, I lied and said that my doctor told me this was supposed to be done under anesthetic. He stopped for a second, then nodded and said, "yeah, let's do it in the hospital."

On the one hand, I was horrified that this guy was going to do a surgical procedure (minor though it was) without any consideration of my discomfort. Yet, on the other hand, it was the first time in my life I think I ever stood up for myself with a doctor. But even then, I did it by appealing to another doctor's expertise, not mine.

A few weeks after the cystoscopy, (which was normal), the anniversary of Roe v. Wade approached and Nate, my fellow editor at SRS, wanted to have an editorial post on abortion. He put together a nice post about consistent ethic of life and social justice and all, but ultimately I found myself uncomfortable with my earlier ambivalence about abortion. With all that I had been through with my body, with doctors making assumptions about it that have left me in the ER with a pulmonary embolism or my knee joint hemorrhaging or unable to pee, I could no longer privilege what might be a life over what is definitely a life. I couldn't agree with men in Washington or the Vatican deciding what should happen to my body. With them not trusting me enough to make the decisions I need to make for my body at any given moment. For the first time, I so got that old pro-choice slogan my body, my choice.

And a few weeks after that as I read through the posts in the Big Fat Carnival, I thought even more about how doctors and lawmakers and insurance executives and ad agencies are telling me what my body should look like and be like and feel like.

After years and years of being bullied for being fat or ignored because my illness doesn't fit a recognized medical narrative, I found myself wanting to scream at those who have for so long controlled my body, ENOUGH! It's my body, not yours. I have to actually live in this damn thing. I have live with whatever assumptions and decisions you make about it. I have to make choices that feel best for me, and I shouldn't be made to feel guilty about it. I shouldn't be shamed into doing what others, who don't personally have to live with the consequences of said choices, believe I should do. I'm the expert on it, not you. I know every little thing it does or doesn't do, even if I can't explain it with whatever terminology you hide behind.

And ultimately, I'm not the first to insist on a right to decide about what happens to me. That's what feminism is for. Why it's still here for me to connect to.

We'd come a long way, baby, indeed in the 70s, but feminism is hardly passe. I'm grateful for it here, right now.

Sunday, February 05, 2006

A fat girl goes wooing

Some of my earliest memories of doctors involve the pediatrician we saw when I was seven or so. He put me on a diet in which I couldn't eat corn (my mom only cooked three kinds of vegetables: green beans, carrots, and corn so that eliminated a third of my vegetable choices) and had to drink these Sego shakes that tasted like chocolate and vitamins mixed together. I also wasn't allowed to eat the candy hearts my Girl Scout leader gave me for Valentines Day while my skinny sister could.

At ten years old I was pushing 120 pounds and the new pediatrician I had was particularly peevish about obesity, as the nurse in a quiet, frightened voice warned me after weighing me before he came in. Dr. P scolded me in a voice that was about as scary as my browbeating stepfather. He demanded to know how much I was eating (not any more than my scrawny siblings) and how much exercise I was getting (two-mile-round trip walks to school as well as kickball at recess). "You're lying," he insisted. Turning to my mother he said, "she has to be secretly eating." I didn't know what to do with that. I knew I wasn't lying, but he was an adult -- and a doctor at that.

Unfortunately, after I started getting sick a lot when I was eleven or so with what may have been the early stage of Chronic Fatigue Immune Dysfunction Syndrome, I had to see doctors a lot. Most of the time weight wasn't really an issue. I mean, you can't blame pneumonia or dysmenorrhea on being overweight. But then again, I've had an ear, nose, and throat specialist advise me about my weight even though he was seeing me for benign positional vertigo. And it was that constant possibility that I might be harassed for being fat that has had me terrified every time I go to see a new doctor. Last spring as the appointment with a neurologist approached, I thought I was going to start having panic attacks.

I find myself preparing for a new appointment like I might for a date. What outfit should I wear? I want to look like I take care of myself, so something somewhat nice. But not too dressy that it would be hard to get in and out of. Or look like I'm not really sick (yeah, having an illness that is not taken seriously hasn't helped). Maybe something sporty...

Of course, if they make me undress into one of those paper tops, it doesn't really matter anyway.

Studies (yes, nameless ones that I can't be bothered to look up) show that people who are overweight have a harder time getting jobs and are often paid less. Yet I've never found that to be the case with me. Jobs usually love me. The academy has adored me (well, most of the time). I have this way of wooing people with a combination of intelligence and charm.

But get me in a doctor's office, it's a whole different story. I don't even think to woo. I'm bad, and I know it. I timidly review what the problem is and submit to whatever the doctor decides.

It occurred to me a few weeks back to ask myself why. What have I to be ashamed of? Why can't I woo the doctors the same way I woo professors and employers? I'm hardworking when it comes to taking care of myself. Indeed, last month when we checked my blood sugar for diabetes because, well, you know, my obesity puts me at risk, it was 96. Not even close to diabetic.

And I know my shit. Sure, I have only a rudimentary knowledge of human physiology (I mean, damnit, I'm an historian who studies Arabic and religion, not the autonomic system and leukocytes). But that rudimentary knowledge is a hell of a lot more than most of the patients who walk through their door. Plus, I live in my body. I know every little thing it does. I know it way better then they ever will.

And yes, I'm fat. I haven't been below 200 pounds since I was 15, and it's very unlikely (barring a major medical breakthrough) that will ever change. That diet the first pediatrician put me on, along with all the dieting I've done since, has made my metabolism run so efficiently I could live through a biblical famine (though probably not through the accompanying diseases). The damage is done, and I have to live with the body I have -- as do they.

I've been practicing my wooing at the free acupuncture clinic I go to. A year or so ago I admitted sheepishly to the acupuncturist that I'd been eating some Ben and Jerry's frozen yogurt. "Oh god, if that's the worse you do, I wouldn't worry about it. Seriously, you take care of yourself better than most of the patients I see." Since then I've amazed the other acupuncturists (mostly students) I've seen there with my tales of making congee and doing qi gong. Just last week as I left my appointment, I could see that look in the new acupuncturist's eyes that I'm used to seeing in new professors.

So as I approached my appointment with the new urogynecologist, I decided to be that Michelle who got accepted to grad school at Harvard, Chicago and Georgetown. I prepared the night before by putting together a list of meds, supplements, and hospitalizations, as well as a review of symptoms, treatments, and other pertinent information. And yeah, I did put some thought into what to wear, which in the end didn't matter because I met the new doctor with my feet in stirrups. After the catheterized clean catch (the antiseptic way to get urine) and pelvic exam, I returned to a slightly more dignified position to discuss my problems with her. Like two equals.

Sure, it helped that this was a clinic devoted exclusively to women. That the doctor supervising the resident treating me was named one of the 400 best doctors for women in America (and held my labia open with a kind hand during the pelvic exam). But for the first time I left a first appointment feeling like I had effectively advocated for myself. Left feeling empowered. Left knowing this fat girl can woo doctors just as well as I wooed cynical, judgmental, well-published academics.