It is strange, and trivial, and serious, and ambiguously embarrassing: to write about my own skin, about my psoriasis.
The factual: I've had psoriasis since I was eighteen (I was devastated when the doctor told me, as though I could already foresee what it would mean throughout my life, or perhaps what I would make it mean); it doesn't matter at all, as it doesn't hurt or itch. It gets a bit better at times, it gets a bit worse at other times. Extensive mucking about with steroid creams, sun beds, and various treatments can improve it a bit, but not all that much (at one point in the mid-nineties I was taking a semi-experimental retinoid that helped immensely, but it was hard on my stomach and disastrous for the liver and pancreas, so I'm no longer allowed to take it). Not to mention – vitamin E, evening primrose oil, homeopathy, diet, avoiding proteins, avoiding dairy, acupuncture, and all sorts of other promised miracles. It's genetic, systemic rather than infectious – my father had small patches on his leg; my eldest sister has it, not as badly as I did when HIV made me more fragile, but probably about as much as I have it when I'm normally healthy.
In the real world it doesn't matter at all. People hardly notice, most of the time – though when I was intermittently at my most ill in the late 1980s and early 1990s, a large part of my skin was affected (the phrase 'seventy per cent of skin surface' comes to mind, but I can't believe it was ever really that bad – on the other hand I can't really remember; one of the tricks is that psoriasis appears, not because the immune system is weak, but because the HIV virus is present – an unexpected and counterintuitive aspect of treating people with AIDS and psoriasis). I looked fairly terrible for a long time – which was fine when I was dying (or when I thought I was), but which I resent when I feel otherwise just fine.
And I do feel fine: and it's summer, and I got some sun. Now, and for most of the extended now that is my late forties and fifties, it's only patches on my elbows and knees, and a bit of scalp; it doesn't matter at all. And yet it does: I hate it – it changes my relation to younger, prettier, healthier, happier people; it makes it impossible for me to get past my other physical defects (of which, as Fran Leibowitz once said, everyone has at least twelve). In the late 1980s, when I met the guru Ma Jaya Sati Bhagavati, she made me jump in a swimming pool as a healing ritual; my skin didn't change, but I was obscurely grateful that she confronted it in that strange way, rather than seeming not to notice it.
Ultimately, what is hard to convey is how deeply embedded it is in my sense of self: the ambiguity of beauty and ugliness, of health and disease, of pride and shame, are fixed in these skin lesions, these scales, at every level of my experience. I often tell students to pay attention to the immediate psychologies of the writers they read, including the supposedly above-the-fray scholarly ones: that everyday details of people's lives can completely change the way they write music, the way they write words, the entire shape of the universe for them; that bodies matter to biographies, and biographies matter to ideas.
Well, for me, this ridiculous and trivial skin disease, which no doctor would consider worth a moment's serious attention, is a constant wound – an Amfortean wound, strangely enough (and I've never thought that until tonight, but now that I have it's clearly true). It is a mark on me, that thing that shows me to be not quite right, not healthy, not acceptable; it is the thing that bars me from happiness, from sex, from, well, everything. Absurd; utterly. And yet true.
(Think of Marat in his bath: but no, Marat must have had eczema, not psoriasis – he must have itched, been perpetually miserable, almost mad with the endlessly changing discomfort of it. Otherwise the baths would not have been worth it; he merely would have concealed himself in layers of clothing....)
I remember once, at a time when it was particularly bad, and my life particularly unstable and hopeless; when I was at Bill's apartment in San Francisco, in the kitchen, next to the window and fire escape in the middle of the apartment, my gentle, melancholy friend Mark Rhynsburger responded to my oblique but endless complaints about my skin by saying: Take your shirt off. I said, what? He said: take your shirt off: let me see. I took my shirt off; at that time there were red lesions and scales scattered in a band across my chest, in the same place where I had shingles another year. Mark looked at me thoughtfully and said, I would think somebody could see right past that.
I remember being stunned, shocked almost tearful, at his words, which are of course simple and obvious and evidently true.
For me, I cannot see past my psoriasis, which I have constructed as a terrible wound, as a dreadful armor against the world, against happiness: but he pointed out the revolutionary, radical possibility, that someone could simply not care, that they could see through it: and see me....
Thank you for expressing some of the same frustrations I've been feeling about psoriasis - thank you for not giving in to it.
Posted by: Jimmus | November 19, 2007 at 04:31 PM