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.

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.

Thoughts while unpacking

Several days of spending several hours unpacking box after box of my life has given me a lot of time to contemplate the changes I have made, both recently and over the course of my life accumulating all this crap. I've found it to be a bittersweet time. A time of lingering grief mixed with relief and even a little excitement.

I'm adjusting to the shift from an academic-centered life to the illness-centered life as symbolized by my replacing the thesis material that I usually keep in the portable file on my desk with folders of Social Security and HUD paperwork. Accepting that since I don't have as much storage space in this apartment, boxes of my old Arabic, Persian, and Hebrew flashcards and textbooks, as well as notes from undergraduate courses can probably find a new home in my mother's storage shed as they will not be readily needed anytime soon. Unpacking novels first and placing them on the most convenient shelves where my Middle East section would have been before. Indeed, those books are still in their boxes waiting until I have the time, energy and money to get another eight-foot plank of particleboard.

But I have unpacked gardening and craft books that remained unpacked in my last apartment. As a student I never had time for them, especially as I was so sick I hardly had time to even be a student. But now, well, when I'm feeling good, I can make a new lampshade or plant a winter container garden if I want to.

And that's when I realized I was so relieved to finally not be a student anymore. Despite all the snide comments I'd hear from people that I was becoming a "professional student," it was not a profession I chose. I wanted to be done. To move beyond the ambivilance that comes with being a student to the permanence of being a professor. No, I didn't end up becoming a professor, but I am done with being a student (at least for the forseeable future). I have the stability one lacks while in school. Which is funny in a way because school was always what provided stability throughout my chaotic childhood (or lack of one) and in having to give it up, I was terrified I would lose that precious structure it brought to my life. But, you know, structure can be so overrated.

There are still a few more boxes to go through, more remnants of my old life to remind me of what it was like to be on the academic fast track. But now there's enough room in this new apartment to live the life of novel-reading and domestic contemplation my illness has brought.


AUTUMN EQUINOX

I feel my body letting go of light
drawn to the wisdom of a harvest moon.
I feel it welcome the lengthening night
like a lover in early afternoon.

My dreams are windfall in a field gone wild.
I gather them through the lengthening of night
and when they have all been carefully piled
my body begins letting go of light.

Indian summer to leaf-fall to first frost
the memories that were carefully piled
become the dreams most likely to be lost.
My dreams are windfall in a field gone wild

now that memory has abandoned them
now that Indian summer, leaf-fall, first frost
have become the same amazing autumn
skein of those dreams most likely to be lost.

I feel my body letting go of light.
I feel it welcome the lengthening of night,
the windfall of dreams that have long been lost
to Indian summer, leaf-fall, and the first frost.

-- Floyd Skloot

In each others' hearts and lungs

Ha'aretz: Family of boy shot dead by IDF donates organs `for peace between peoples'

When Israeli soldiers shot and killed his son, Ahmad Al-Khatib remembered his older brother who had died of kidney failure from lack of a suitable transplant and decided to donate his son's organs.

"I don't mind seeing the organs in an Israeli or a Palestinian. In our religion, God allows us to give organs to another person and it doesn't matter who the person is," said Jamal al-Khatib, the boy's father, who added that he hoped the donations would send a message of peace to Israelis and Palestinians.

And indeed, they went to three Israeli girls, two Jewish and one Druze.

It's not the first time those who have lost their lives to terrorism of either the state or individual sort have gone on to provide life for those on the other "side." On September 22, 2002, the Catholic news agency Zenit reported that the parents of a Jewish student killed in a suicide attack in Tel Aviv donated his organs, including a kidney that was transplanted into a seven-year old Palestinian girl. The year before that, the organs of a Palestinian man killed by a Jewish settler provided life for one Arab and three Jewish Israelis.

For those who think that Palestinian Islam is all about hate and revenge, consider the reasoning the family of the Palestinian man gave for their gift.

"I consulted the Muslim authorities, who assured me that the gesture not only could be carried out according to the Koran, but that, in addition, it is a meritorious and just act, regardless of the religion of the recipient of the organs,"

A sentiment shared by our own Holy Father while he was still Cardinal.

Yep. Palestinians and Israelis share more than just borders. They carry each others' hearts and lungs.

This was the point that my friend Nur Masalha (one of the nicest guys ever!) made in the current issue of the Nation regarding Iran's unfortunate comments about Israel.

Ahmadinejad's rhetoric...raises a key issue at the heart of the Israel-Palestine conflict: the need for Palestinian Muslims and Christians to make a clear distinction between our political struggle against institutionalized racism and ethnic cleansing in Palestine-Israel and the fact that we and the Israelis will, ultimately, have to live together as equal citizens under some form of secular democracy--rather than wipe each other out. Muslim fundamentalists (Ahmadinejad included) have miserably failed to understand the reality in historic Palestine. In the process of brutal colonization of the country, a Hebrew-speaking "nation" has emerged, with its own distinct language, culture and flourishing literature. There are 5 million to 6 million Hebrew-speaking Israelis, and no one has the right to talk about wiping them out. Acknowledging the current binational reality is completely different from legitimizing the colonial process by which this reality has come about.

You can build exclusive by-pass highways and walls higher than the old Berlin Wall. You can refuse to acknowledge the Zionist entity and establish diplomatic relations. But the plain fact of the matter is that the future includes Israelis and Palestinians together and there's no getting around it without genocide either way.

Just ask Ahmad al-Khatib, who sees his son in the little Jewish girl who has his heart.

[Cross-posted at Sollicitudo Rei Socialis]

Bibliophilia

All the talk about books in the comments section of the post below has me thinking a bit more about my library. Tubbs quite rightly chided me about even thinking about getting rid of books. So, thought I'd write this post as penance.

Poeisia commented that books are like friends and I have to say that's very true. When I first left home to go to college and was feeling homesick, an afternoon in the library made me feel a lot better. And now that I spend a lot of time in bed, looking up at the long shelves snaking their way around the ceiling and down the walls makes me feel less lonely because those familiar novels, plays, historical monographs, and theological treatises are here along with me.

A lot of the books I have I don't remember exactly where I got them. Others, of course, I do. An old bookstore in West Salem. Gifts from friends. Thrift stores. Open houses at the Middle East Studies Center.

Many, many of them are from Powells Books, either at their store or during their annual Square Deal Sale when they fill up Pioneer Courthouse Square with overstocks and books they otherwise can't seem to get rid of. It takes hours to go through the tables winding their way along the etched red bricks. The store, of course, takes even longer. Indeed, though I've lived between 5 and 20 minutes away depending on whether you take the streetcar or walk for most of my adult life, I don't think I've actually ever been through every aisle of the store, though I believe I have been in every room. It's really that vast. But I've certainly spent hundreds of hours there. Sitting on the floor or standing with my head crooked to one side as I skim the names. My godfather, a cynical guy from the East Coast now stuck on the wrong coast in Seattle for grad school, thought I was totally overhyping Powells. Until he stepped inside. After a few hours he admitted he was overwhelmed. Our favorite thing to do when he comes to town is to head to the Middle East section at Powells and sneer or salivate at what they've got.

And now with the Internet, I've reached new heights in book collecting. Books that I've had to constantly request through Inter-library loan and finally spend money and hours at a copy machine because they've been out of print so long I'm now finding through the far reaches of the Web. It's made me smugger than ever of my library. Especially I when wrote a book review of John Joseph's, Muslim-Christian Relations and Inter-Christian Rivalries in the Middle East: The Case of the Jacobites in an Age of Transition (Albany: SUNY, 1983) for a professor, who upon reading it said, "we should get this book for our library" to which I responded cheekily, "I own it."

To those who say that the public library is a lot cheaper, I say that they've never seen my overdue fines. I've probably built a wing of our university library with my tardiness and as the Internet makes book buying so easy and cheap, I've decided that it's far more economical to just buy the books I need or will want to read eventually rather than pay for my forgetfulness. I mean, then I get to actually keep them.

As fate would have it, the movie that I popped in the DVD player tonight from Netflix was a book about bibliophiles, 84 Charing Cross Road. The main character is a New York screenwriter, Helene Hanff, who also has a particular taste for hardbound English literature. But, being a writer, she's not particularly wealthy and has a hard time finding affordable editions. Upon finding an ad for a British bookstore, Marks & Co., she writes hoping that they might have what she's looking for at reasonable prices. The manager of the store, Frank Doel, responds with a polite letter, a few of the books she requested, and an invoice. Thus begins a 20 year correspondence among Hanff, Doel and the staff at Marks & Co. in which Hanff is the witty, outspoken New Yorker and Doel the reserved, but polite Englishman. It's a great movie regardless of whether you like books or not. Subtle and sweet but not at all sappy. However, if you're a book lover, this movie has you thinking about that wonderful smell of books. That soft touch of leather bound. The slight sparkle of gilded edges. It totally made me think of you, Sylvia.

It also made me miss England. Reminded me of that little bookshop near the British Museum that specialized (or should I write specialised?) in books on the Middle East (or the Orient as their sign said). A. practically had to drag me out of there by my ear if we were ever going to leave. And speaking of my British boyfriend, my favorite line in the movie is where Hanff is chatting with her friend and her friend's British boyfriend. He says something about raspberries, but being a good Brit pronounces it rahspberry. "Raaahhhhspberry," Hanff says. "Can you believe a whole country of people pronounce it like that?" LOL Lord knows A. and I giggle at the way each other pronounces things. Like herbs vs. herbs-with-an-h. Or fillet vs. FILit. Or drawing vs. drawring. Then there are their weird-ass names for things. Instead of Graham crackers, they have "digestive biscuits." Does that not just sound like a cookie made of Maalox?

So, at any rate, I gave my dad another twenty bucks tonight to get some more packing tape, as well as some Fix-all to fix the walls as the brackets for the shelves stuck to the walls when they were screwed in and after being extracted, took hunks of plaster with them. And this time next week we'll be figuring out how to fit shelving for some 1100 books or so into an even smaller studio. Cause, ya know, while I've seen lots of friends come and go over the years, these ones are still hanging around.

Meaningless titles

I finally broke last night.

Actually, I started breaking in the elevator as I went to meet with a professor yesterday afternoon. Nauseous and exhausted and nearly twenty minutes late, it’s like it finally hit me: I can’t handle school. Even just a little bit of it. Just my piss ass 5 credit hours. And if I can’t handle it, I’m going to have to drop out again. And if I drop out this time, I don’t see how I’m going to go back anytime soon. Not only is a Ph.D. apparently out of my grasp, but it’s becoming increasingly clear to me that so is an M.A.

I HATE this fucking illness.

I HATE how much it’s taken from me.

I HATE how much it just keeps taking.

In my moment of profound self-pity last night I exclaimed to my walls lined with books that it’s not right. I’m too smart not to have a PhD. Didn’t my advisor say when I was an undergrad and rattling off all sorts of unique research ideas that I was going to create my own new field and be publishing like crazy? I’m too smart not to have an M.A. I mean, I’ve even published a little. Not even a damn Master’s degree from my piss ass state university?

Of course, there are plenty of people who are at least as smart as I am who don’t have Masters or doctoral degrees. I’ll survive without them as well.

They are just silly, meaningless titles in the long term scheme of things.

But they’ve been important to me.

Important if I ever want to teach.

And I so miss teaching.

Hell, at this point I even miss grading those pathetic undergrad papers where they don’t even understand the difference between a run-on and a fragment, not to mention a clearly articulated thesis.

Well, okay. Maybe not quite that much.

Not that I’ll be able to manage teaching in a classroom anytime soon. I can’t even make it to class as a student regularly enough as it is.

And Monday I have a social worker coming to assess my situation for assistance with housekeeping and grocery shopping.

I can’t even take care of myself by myself.

I remember two years ago when I had my Social Security hearing in front of an administrative law judge regarding my claim that had been denied. The judge asked the vocational expert if, based on my past education and symptom history, there was any type of work I could do. The vocational expert said that because of my poor health there was no job for me in the national economy. My Legal Aid lawyer was ecstatic. I’d won my case. When the ruling came a month later fully in my favor, it was bittersweet. On the one hand I was so relieved that after two years I was finally going to have an income. But I was approved because I was essentially useless.

I know at this point it’s time to let go of those last remnants of my old life. Of that energetic student who could study three languages and pull off “A” research papers at the rate of a page an hour. I know God is leading me elsewhere and that where ever that is, it’s not a bad thing. Indeed, it’s probably quite wonderful in its own way.

But this week it’s been hard to let it go. I miss it.

CHANNEL

In time the fork my life took
as illness changed its course
will wander to the main stream
and there below the long waterfalls
and cataracts I will begin to rush
to the place I was going from the start.
I imagine looking back to see
the silted mass where a huge bend
holds sunlight in a net of evergreen
and the sky unable to bear its own
violet brilliance a moment longer.
Out of shadows where the channel
crumbles comes the raucous sound
a great blue heron makes when startled.
Scent of peppermint rides breezes
from the valley and I catch hints
of a current beneath the surface
just as darkness unfurls.
There I imagine what was lost
coming together with what was gained
to pour itself at last into the sea.

By Floyd Skloot (a fellow CFIDS victim) from his book The Evening Light. (He's got some great poems, so do buy it if you can, or any of his other books.)

My Little Michelle

My little Michelle broke her foot the other night. She fell off the bed when I turned over in my sleep and crashed onto the hardwood floor. The next night as I curled up in bed with her, I noticed a clinking sound in her right sock. Probing softly in the darkness, I could feel pieces of porcelain where her foot should be.

A broken right foot.

Just like me.

I bought the doll a few years ago at my therapist’s suggestion. She thought it would be good for me to have a tangible representation of my inner child. I balked at first. It just sounded so very cheesy, pop-psyche like. Something forty-five year old yuppies from San Marin wearing crystals do. But, I figured I would humor her. Show good faith on my part in getting better.

So, I headed for the Goodwill thrift store. After looking through the piles of plastic, cloth and rubber dolls on the shelves, I found a brown-haired doll with hands, feet and head made of porcelain but a body made of cloth. She was dressed in a velvet green pinafore over a black and white blouse with a lace ruffle collar. Little ivory cotton bloomers and socks. No shoes but she did have a display stand. And though her eyes were brown and mine are green, and her hair was far thicker than mine will ever be, she felt like what I’d imagine myself as a little girl would look like.

Once I got her home, I ditched the stand. Decided maybe her hair could use a comb. Before I knew it, I was sitting on the floor brushing and braiding her hair. Planning little clothes to make for her. Trying to figure out the best way to shod her feet.

And when those times have come when the sadness of the past has overwhelmed me, I have found it very comforting to hold her and rock her and stroke her hair. Of giving some part of me the affection and care I did not get.

It’s not that my parents where horrible people. They were flawed, but not evil. Young and unsure about what to do with a child they weren’t expecting.

Actually, I say parents with a plural, but it was really just my mom. At least, until she finally told my father about me when I was eighteen. They met at a party when they were nineteen and broke up before my mom realized she was pregnant with me. But she was in love with somebody else by the time she did realize and decided what my father didn’t know wouldn’t hurt him.

Or me.

Or who would have been my grandparents and aunt.

And so she married this new guy she was in love with, thinking that he’d be my dad and everything would work out happily ever after.

Sorta like how teenagers think.

And when I started talking as a toddler and people thought I was a midget because I used big words, she figured I’d probably do just as good a job being left to “keep an eye” on her adulterous husband as any other adult would.

And I’d be just as patient and understanding at four years old when she divorced him as any other adult would.

And when she married again when I was eight, I’d be just as good a candle-lighter at her wedding as any other adult would.

And when she had another baby girl when I was ten, I’d be just as good at caring for her as any other adult would.

I mean, how many other ten-year-olds get to spend their summer vacations and holidays and days when the babysitter was sick with their own real baby doll to bath and change and feed and dress and push around in a stroller?

When I was a teenager I began writing a novel about my inner little girl. I named her Allie and set her in a small Oregon town in 1897. She had everything I lacked: a caring father, a healthy body, a willful spirit, a childhood.

I lost my healthy body a month before my baby sister was born when I broke my right ankle. At first I just thought it was another broken bone. I’d broken my arm the summer before and it healed up perfectly. During the three months I was in various casts, I understood that I couldn’t walk the mile to school and be on safety patrol. But nobody told me I couldn’t play kickball, so I did.

And when I played right after the cast came off, I ended up back in the emergency room where another one was put back on. After months of playing and more casts, I finally understood what no adult had bothered to tell me.

But not playing kickball anymore meant that I got even fatter. And it’s not like I wasn’t fat enough already as the doctors constantly harangued. And as my stepfather made certain to point out to me.

He also pointed out, in verbally and physically painful ways, that I was not allowed to have a willful spirit. After one particularly traumatic incident in which he broke it like porcelain on a hardwood floor, I created Allie. Gave her my willful spirit for safekeeping.

And my dream of a healthy body.

And someone to care for me.

And a childhood.

But now I want my spirit and dreams back.

I began trying to figure out how to get them back when I was getting to know my biological father, who six years earlier abruptly found out he had an eighteen-year old daughter when my mom called him up one day. And even more after he decided he couldn’t do the father-daughter thing. And particularly after I got to know my grandfather and he instructed me to be my own person a few months before he died.

I hunted for them madly after I had surgery on that right ankle and in the knee above it six years ago and ended up with blood clots in my lungs and then hemorrhaging on the blood thinners and clotting some more and developing some ephemeral but palpably debilitating condition called Chronic Fatigue Syndrome.

But, several months ago when my nieces were spending the night, one of them saw my little Michelle doll sitting on my chair. “She kind of looks like you ‘Chell,” she said as she picked it up.

My doll.

Who is not fat.

Who has brown eyes.

Who has thick hair.

I wanted to grab my niece and kiss her and tell her that was one of the sweetest, happiest things she could have ever said. Instead, I smiled at her softly as she turned to argue with her sister about whose turn it was to use the computer.

Yep. My doll.

Who somehow absorbed the willful spirit I gave away for safekeeping all those years ago.

The willful spirit that refuses to be ashamed of my curvy body and has finally come to accept the leisurely life my illness has brought.

That insists on caring for myself rather than only caring for others.

That clings to my doll with all I have these days as I work at sifting through all the pieces of me.

The doll whose porcelain right foot I glued back together. Yet, whose feet still remain unshod.