October 26, 2006 at 2:44 pm (Uncategorized)

Andrew has learned defensive strategies for two sports. His “basketball defense” involves sidestepping quickly across the room in a fairly impressive show of fancy footwork. His “football defense,” though, is even more realistic. Thanks to careful tutoring from his father, my two-year old son now drops into a three-point stance, lowers his head, and charges, as he bellows “TACKLE!” at the top of his lungs.

Andrew may be small, but he is dense. He has flattened our daintier guests, and taken down both Jay and me when he catches us unaware. While Andrew’s mastery of the technical aspects of tackling is pretty cool, having forty pounds of boy intersecting with your vital organs can be bracing. So we’ve been chatting with him about the appropriate times to unleash “football defense.” Charging dinner guests is not OK, we’ve said. We can only tackle each other when we’re roughhousing in the playroom. Defense isn’t defense unless it takes place in the ritual formalities of a game. Taken on its own, the defensive tackle becomes an act of offensive thuggery.

I should follow the advice I dispense so sagely to my son.

The other night, as Andrew’s Mommy-and-Me gymnastics class was winding down, I did my own interpretation of Andrew’s “football defense.” While we were waiting for our kids to get their hands stamped with a Halloween design, the mothers watched older kids doing the splits. “Wow. Could you imagine being able to do that?” one woman, who is a friend of mine, idly wondered aloud. I happen to be pretty flexible, so I said, “I can do the splits.” “Really?” my friend said, in a completely unobtrusive, unremarkable way. Which I completely misheard. “Contrary to present appearances,” I said in a nasty, sarcastic tone, “I used to be fairly athletic.” Thank God I stopped myself from dropping into the splits right then and there. I probably would have ripped open my wool dress pants and then had to skulk to the car with my skivvies showing. Nevertheless, I still managed to suck most of the oxygen out of the room.

Why would I assume that a friend would imply that there was no way I was capable of executing a moderate test of flexibility? Why would I internally transform the innocuous conversation mover of “really”– another way of saying, “tell me more” or “uh-huh”– into an act of verbal aggression? In other words, why did I crouch down and barrel ahead with my head down?

Defensiveness – manifested as touchiness – is a side effect of chronic illness. I’m not alone in this. I know several folks with fibromyalgia (a debilitating disease that defies diagnosis or easy categorization as well as treatment) who have had their complaints ignored by too many doctors and their suffering disregarded by too many friends. When the topic of their illness comes up, they tend toward aggression because they assume everyone will minimize their difficulties.

I suppose I should feel lucky that I have an illness like sarcoidosis that can be biopsied in a laboratory, tracked in scans, and studied in clinical settings. I should also feel fortunate that my sarcoidosis was detected early. I have met plenty of people who had sarcoidosis for years before it was diagnosed. They were sent home from doctors’ appointments with referrals to see psychologists rather than with orders for tests that would have caught the disease rampaging through their lungs, livers, and brains. As a result, some of these people wear their diagnosis and the severity of the disease like a badge of honor. “See. I’m really so sick that I need supplemental oxygen all the time,” they seem to say, as they recount the illness’ path.

I’m also lucky that my family and friends have supported me as thoroughly as they have. I’ve read too many posts on the various sarcoidosis list-serves from people whose husbands have told them to stop whining, whose mothers have doubted they felt that bad, and whose friends have whispered not so quietly behind hands that really, it is time to feel better.

No, my defensiveness is different. I’m not concerned about people taking my sickness seriously enough – probably because everyone has always taken it too seriously for my liking. I feel prickly about losing who I was before the sarcoidosis. Many people in my life –my fellow Mommies at gymnastics, included – have only known me post-sarcoidosis and post-prednisone therapy: bloated, fat, perpetually tired, constantly sick. All it takes is one off-hand “really?” to make my throat constrict, to make me feel as though I am shackled to my illness, as if the “real me” is lost forever in the folds of flesh and fatigue that limit me.

I think the underlying cause of defensiveness in the chronically ill – whether it’s about actually being sick or about being able to do the splits – is really about worth. Sickness makes you question your place in your family, your place at work, your place in your community, your place with yourself. Are you still a mother if you’re too exhausted to cook dinner? Are you still employed if you miss weeks of work for treatment? Do you still have value even though you’re tired, sick, miserable, and feel like you can’t go one more step? What are you worth, now that your lungs don’t function properly, or your heart beats erratically, or your nerves are dead?

My sense of worth has always been external. I derive a large piece of my identity from what I do and what I produce. I think most of us do. For me, being a writer has meant writing – finishing articles or books, teaching classes, publishing. The activities I most enjoyed like hiking or cycling could also be externally measured. I could think of myself as an athletic person because I hiked twenty miles or kayaked for a hundred. Even the more nuanced aspects of my character had external validation. I thought of myself as an explorer and a traveler – mainly because I lived abroad and also because I traveled voraciously to remote locations. Illness took away many of my markers of success. I had to give up exciting writing projects; I gained a lot of weight and couldn’t hike twenty miles; my health demanded I stay close to a major medical center and not go traipsing around Burma anymore.

I am in the throes of reworking my identity, of finding an internal compass. I am writer who doesn’t necessarily have the capacity to write every day. I have an athlete’s heart and drive, but I turn that intensity to fighting my disease. I am an explorer, but, right now, I discover the hidden in the everyday. The only problem is that sometimes, I rear into the old self-definitions, and the question of something as trivial as my flexibility causes me to spiral into a cycle of questioning and self-doubt.

I recently had to see a podiatrist about a stress fracture in my foot. As I usually do when I see doctors, I rambled on about how much prednisone weight I’ve recently gained. It’s almost as if I am telling them, “Look, I’m not this overweight, sick person. I’m really someone else underneath it all.” He listened quietly, and then said, “Well, there’s really not much you can do about that. You’ve had some bad luck.” And something infinitesimal shifted inside me. There’s not really much I can do. This is who I am. If the world doesn’t like me and doesn’t see my capabilities, what can I do? But I need to see myself and remember how strong I really am.

Or else I could just tackle people.

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