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Scary because here the languishing can go on for years, and whatever allure the pliant body might have inevitably deteriorates as the caregiver is worn down by his duties. Almodóvar’s movie does give to one of its women the cinematic cliché of the miracle cure, but coming to terms with my illness has forced me to give up on that possibility, which I think caused the relationship between my psyche and my illness to remain childish, meaning that it was presided over by a child’s false sense of immunity to time. While last year’s therapist felt that my giving up on hope had darkened my outlook, I think hope shackled me to my body as it dropped like dead weight to the floor of the sea. And surrendering hope has left me feeling unburdened, lighter, strangely giddy as I float.

There is an erotic component to this surrender — it comes from the self relinquishing control, throwing itself away. Then the body is offered to whatever seizes possession of it — whether the seizer be disease or time or a human lover. Or it could be religious ecstasy — as in Bernini’s sculpture Saint Theresa and the Angel, the saint’s head tipped back with her eyes closed and her mouth hanging slack, again that half-bored, half-sleeping decoy face, signaling that the attention normally given to the world is being turned inward with all the intensity Theresa can muster.

I’m getting my picture of the sculpture from the cover of the book Erotism, by Georges Bataille, French philosopher of the sexual appetite whose thinking derives from a blend of Baudelaire and the Marquis de Sade. Bataille takes for his book’s premise that eroticism is assenting to life up to the point of death. I don’t know what this means in pragmatic terms, but my brain drifts in the same direction as the main current of his thought: that we are each so alone in our bodily organism-ness that our spiritual lives, and our sexual lives, act out our desire to achieve communion with something beyond the edges of our own skin. The egg and sperm’s smashing together is the version of his thesis writ in miniature; in larger form, there is the example of the human falling down enraptured and speaking in tongues, an Esperanto that links the soul to a mystical race from the beyond.

There is also the larger drama that takes place in the bedroom, more serious than a game, sort of like the living tableaux that women would form at garden parties in the nineteenth century, the Three Graces with their limbs intertwined (I know about this only because I had to orchestrate just such a tableau vivant in my role as the mayor’s wife, in our sixth-grade production of The Music Man).

You can see why these activities would be appealing to a cripple. Joining forces with someone else means a respite from fighting the body’s ravages on one’s own. Strife loves company, especially strife in which one is bound to go down the loser. Plus, it seems that if I can get deep enough into my body, maybe all its disturbing symptoms will disappear, the way the storm goes calm at the eye of it. And this does happen — a bit of good biology I chalk up to the pain-relievers called endorphins that are released by the brain.

There are also practical considerations: sex is usually accomplished lying down, a posture that camouflages frailty. Except, of course, now the bulge of the pump is always there.

To be partly human and partly a mechanical thing: this is a cyborg, in the parlance of science fiction. Sometimes the cyborg becomes an erotic object for her very freakishness: I have seen several Star Trek episodes that hinge on this premise. She has the stamina of the machine, plus the mystery of who-knows-what carnal apparatus. She has human beauty, usually manifested in a slightly abstract form, sheathed in silver skin or with a face partially occluded by a metal superstructure. Part of me thinks that being a freak is interesting — the great hunt of my youth was for some distinction that would render me more exotic than the run-of-the-mill other girls. And one of the most arousing memories of my recent life is Jim batting my hand away from where I was using it to anchor the hem of my T-shirt, this when the foreplay was just starting to take, him saying I don’t care if I see it.

All my life, in health and out, I have hunted for communion — drugs, meditation, mountain-climbing, men, a variety of religions; I have sought dissolution of my physical walls, the body cast off like clothing stepped out of and kicked across the floor. Lately I’ve even looked at the maundering of that newest of Bataille’s offspring, the art history professor in France who supposedly had sex under highway bridges with street people and stevedores. I understand why she would want to do it, though I see it a weakness in her character, this desire to cast off the body when there is nothing wrong with hers.

As far as poetry goes, the body in extremis has given us Crazy Jane and Baudelaire — or, for a more homegrown example, we could look at Raymond Carver’s “Proposal,” a poem that is partly about making love after his diagnosis of terminal cancer, surely a justifiable circumstance for self-relinquishment:

Back home we held on to each other and, without embarrassment or caginess, let it all reach full meaning. This was it, so any holding back had to be stupid, had to be insane and meager. How many ever get to this: I thought at the time.

How many ever get to this: see how the diseased want to be an exclusive club, a mensa society of fornicators. We think our love takes greater courage, no matter how limp our secret handshake is.

And it occurs to me that someday I will eat these words I’ve written here, because what I know most surely about my erotic life is the fact that it is provisional. My body will have changed by morning — and, in all likelihood, not for the better. And Cupid is a little guy whose energy seems liable to flag as the body starts grinding through the hard work of decay.

Because decay underlies it all, is both the substance of our graves and the loamy below-porch catshit-littered birthplace of the dirigibles (Yeats’s Crazy Jane pops their balloonlike forms when she says: “Love has pitched his mansion in / The place of excrement”). I should also mention the second of Bataille’s great themes: how taboos arise in order that the body’s interior and exterior not be mixed. Blood and feces are not permitted to present themselves in open air, except under controlled and ritualized circumstances. Civilization simply does not function when one loses control of one’s bowels in the big box store (this was not me, by some lucky stroke, though I said to myself You coward when I did not help the woman whose violating of the taboo I had witnessed in Costco; instead, I scuttled away like everyone else, afraid of how wildly, how flagrantly, she had swung an ax at the ice of my human heart).

Fear of the swampy wilderness in the body’s interior is one of the idiosyncrasies of the human species. Wrote the diarist W. N. P. Barbellion in 1915, to show us how contrary the animal kingdom can be on the matter of this taboo:

The vomits of some Owls are formed into shapely pellets, often of beautiful appearance, when composed of the glittering multi-coloured elytra of Beetles, etc. The common Eland is known to micturate [note: this means pee] on the tuft of hair on the crown of its head, and it does this habitually, when lying down, by bending its head around and down — apparently because of the aroma, perhaps of sexual importance during mating time, as it is a habit of the male alone.