I took this year off from “rabbi-ing” with the grandiose plan of conquering my illness through sheer intention, alternative therapies, anthroposophical miracles, et cetera. Instead, I’ve been humbled by how much bigger this lupus is than I am—and I’ve spent the last few months productively coming out of denial: I’m not a healthy person with a little bad habit called lupus; I’m a chronically ill person who is beginning to recognize that a radical reinterpretation of daily life and goals is the only way to proceed. (George Orwell’s Winston Smith said, “If you want to keep a secret, you must also hide it from yourself”)
The rewards of being honest with myself for the first time about being chronically ill are great, and the self-respect and self-esteem that follow from this perhaps cannot be explained to someone who has not had the personal experience of coming out of a “closet”—whatever that closet may be. I would guess that there are plenty of people in our congregational community who have a meaningful relationship with one “closet” or another.
I didn’t realize the extent to which I had been leading, for so long, a double life—a sick person posturing as healthy. I had pushed myself for so long—my whole adult life. So there were always two people operating in my one body, and one of them was a liar. Secrets have poisonous effects even on the reflective, inner conversations that those of us with secrets hold with ourselves. Keeping a secret made me sicker, and letting it go—acknowledging to myself and others how ill I am, what needs I have—helps me stay within my physical means for the first time ever, and thus to recover. I’ve descended into seriously increased reliance on hard-core lupus drugs this year—more than I’ve ever been on before—and some brand-new belly-of-the-beast symptoms, like a disabling allergy to sunlight, mouth ulcers, rashes, arthritis so bad that sometimes I can’t use my hands to eat lunch, unspeakable fatigue, too much pain at night to sleep—to name just a few of lupus’s revolving problems.
On the other hand, I’ve come to realize that fully nine-tenths of my illness is a matter of social definition. That is, if I push myself to put in a five-day workweek, to get through a day without a nap, to run errands, to do activities at night, to think that I can manage with fewer drugs (because I’m secretly healthy), et cetera—then I make myself extremely sick. But if, instead, I create new norms (and why not? who says the conventional ones are so fulfilling?), then I can function very well. I can read in bed (and who doesn’t want more time to do that?), snuggle lots with my husband Lenny, be here when the kids come home from school, spend lots of high-quality lazy time around the house and family. If I am totally planful with my days I can accomplish a lot, because I’m not doubly crippling myself through my own “complicity with oppression,” as bel hooks puts it.
Living truly within my physical means for the first time in over two decades I’ve come to realize how many of the essential beauties of life I loved, but rendered as decorations, when in fact they are life—how much pleasure there is to procure from the embroidery on one’s pillowcase, the feel of a hand-carved ladle, candlelight (my all-time favorite comforting, transitional object!), layers of antique paint on an old drysink.
I have learned a lot about the spiritual potential of an indifferent world, about how healthy people’s view of illness is often just a defense of their values (“It must be awful to be in bed,” means that I put a high, probably unexamined value on running around), about how driven I am/was—and what a relief it is to have a different way to access my brief relationship with this planet. I generally feel blessed and optimistic; I hardly do anything that I don’t want to do—what a luxury. Sometimes I think that my illness is just a matter of precocity: we’ll all be “there” real soon—I’m just ahead of some of the pack.
So I’m trying to spend these months becoming “visible” to myself as a chronically ill person. Of course, I understand “visibility” not only as a call-to-arms of minority political rights movements (including the disabled), but as a close relation to Kierkegaard’s idea of “transparency.” Kiergkegaard understood transparency as being the fundamental quality of a spiritually whole person. Transparency means that our “real” self, and the self that we present to others (including the face in the mirror) is exactly one and the same. In “passing” (and “passing” can be any way in which we quietly trick ourselves or others—including tricking ourselves about our own importance), we diminish ourselves and live a life that can be collapsed at any moment.
Still, I also recognize, as the Yiddish poet Katya Molodowsky put it, “People are equal, but the lame still hobble.” Sometimes I have days, or nights, or a spell of time here or there, that strain even the poet in me, and I thank God when those anguishing moments are over.