Wednesday, January 16, 2008

Meet Your Mods: Annaham


I saw the noted film director John Cameron Mitchell speak on my college campus a few nights ago, and he told an interesting anecdote about being a "sextra" in his most recent film, the sex comedy Shortbus. He went through the process of being an extra--except, in the case of the film (which features explicit sex, and is, to that end, unrated), he had to have sex, on camera, just like his actors did--in order to "demystify" his status as a film director. He concluded with a particularly salient point: it is important, when undergoing a creative project that involves working with other people, to remind them that you are all in a similar situation.

So, to demonstrate the importance of this point, I will now tell the story of my own experience with fibromyalgia. This is not to say that all of our experiences are the same. We could be, however, in similar situations.

I've been a Type A personality for as long as I can remember. Everyone knows someone who is like this: they're usually motivated to a degree that can sometimes cost them their sanity; they tend to take criticism very personally; they tend to obsess over situations both large and small. In my case, my desire to do well at everything stemmed from personal insecurities surrounding my mild cerebral palsy that I'd had since birth. Many of these insecurities sprouted like particularly annoying weeds, and would continue to grow through the years. Though I was plagued by serious depression during my teenage years (starting somewhere around the time when I hit puberty), I nonetheless continued to push myself to be "great" at everything--especially at academic pursuits.

It wasn't until my second year in college that a few mysterious symptoms descended upon me, somewhat like unexpected houseguests that you barely know (maybe through a friend of a friend of a friend), and they call you out of the blue to say, "We're in town! Can we stay at your place for a while?" They'll leave eventually, you figure. You'd be rude to not let them stay--and you don't want people thinking that you're rude, do you?

I woke up one day feeling unusually tired, with bizarre, unexplainable joint pain to go along with it. The next day, I felt worse—-this time, I had muscular pain and weakness to go along with the tiredness and joint pain. I figured that I was having a bad week, and that it would resolve itself within a few more days. The cycle of strange symptoms continued for more than eight months as I visited doctor after doctor attempting to find out what was wrong and why I was feeling like roadkill. Finding out what was wrong became something of a part-time job, and it was not until a full ten months later that I found a doctor who did not simply tell me that my
symptoms were psychosomatic.

Now, this once-mysterious group of symptoms has a name—-Fibromyalgia. It is a difficult disease in all aspects—-difficult to pronounce verbally, difficult to explain, difficult to diagnose. The symptoms can vary from patient to patient, which is partially why it is so hard to diagnose, and later, to treat.

Out of all of my symptoms that are regularly or semi-regularly occurring—-among
them nausea, irritability, mild to severe muscle and joint pain, and difficulty maintaining focus for long periods of time—the most affecting has been the persistent fatigue. I constantly have the urge to lie down and go to sleep; I know that if I could get away with it, I would probably prefer to indulge these urges and take long naps at least once per day.

Whenever my to-do list for any given day pops up at me like a sinister Jack-in-a-Box, I am immediately tempted to give in to such a base urge and sleep my way into (hopeful) restoration. The way some people are driven by simple human instincts such as sex or nourishment, I am driven by the promise of eventual, ultimately restful sleep. The catch, of course, is that this restoration never works—-I am always exhausted, even after a full eight hours. Yet, I keep pursuing this rather mythical notion of “the perfect sleep,” hoping that all of my efforts to manage my condition will one day be rewarded with such a prize. In some aspects, then, I subscribe to the cultural “myth of control” that the feminist theorist Susan Wendell, who has Chronic Fatigue Syndrome, so aptly describes:

When people are blamed or made to feel responsible for having nonideal bodies despite their reasonable care, when unproveable theories are generated to explain how someone could have avoided becoming ill, when people with disabilities are seen as having their psychological, moral or spiritual failures written upon their bodies, and when every death is regarded as a defeat of human efforts, the myth of control is at work. (94)

It frustrates me deeply that I subscribe to this mode of thinking, and our culture's pathological love affair with the pull-yourself-up-by-your-bootstraps rhetoric certainly doesn't help. I can acknowledge that I do, indeed, accomplish quite a bit: I go to school full time at one of the top public universities in the U.S.; am on the Dean's List of said university; have a job that I enjoy; maintain another blog; and take care of a small, annoying, and very loving dog (Winston, pictured above). However, the peculiarly American obsession with control of every aspect of one's life still haunts me. It's in the disbelieving looks and comments that some people feel so entitled to express when I tell them about my condition. It's in The Secret. It's in our mainstream media's bias against people with chronic health conditions that don't quite have those markers of disability that we've all come to rely on. It's even in out advertisements (Nike's "Just Do It" comes to mind). The message is that if you can't control your body, you have somehow failed.

I believe that this can change, and that it is up to us to change it.

Annaham also runs HAM.BLOG.

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