THE BLOG

What We Talk About When We Talk About AIDS

02/21/2013 11:08 am ET | Updated Feb 02, 2016

"I'm not interested in that kind of love," he said. "If that's love, you can have it."
--Raymond Carver, "What We Talk About When We Talk About Love"

The August before last, I got sick again.

I have a peculiar form of epilepsy. I don't collapse. There's no thrashing about. No tongue-swallowing. No drama.

The lesion on the right temporal lobe of my brain is just a squiggle on an MRI. Like a tiny volcano, its eruptions are unpredictable and they rain down chaos for weeks at a time. Life becomes fuzzy, veiled by neurological lava. Consciousness is altered, not lost: simultaneous déjà and jamais vu. My world becomes both unreal and hyper-real. My body seems to belong to someone else.

Because of its odd presentation, I was misdiagnosed and treated unsuccessfully for years. In med school, future physicians are trained to look for the prosaic horse -- not the exotic zebra -- when making diagnoses. So I've been told, variously, that I'm a migraineur, a hypochondriac, a schizophrenic. But I'm none of those: I'm a zebra.

It was a gruff neurologist in a cluttered, shabby office on the Upper East Side who first identified hundreds and hundreds of pointy little seizurelets in my EEG, each followed by a fleeting interictal interval. He prescribed an anti-convulsant. The electrical storms in my brain cleared; my symptoms ceased.

But the summer before last they returned: the meds I'd been taking for more than 20 years betrayed me. It again felt like my head was stuck in a goldfish bowl; walking to the subway at night was like walking on the moon. I couldn't concentrate. I couldn't work. I thought I'd never get well.

* * * * *

In a recent essay, I wrote about the death in December of ACT UP member Spencer Cox, who authored the FDA's efficacy protocols for drugs that today keep millions with HIV alive. Spencer died of AIDS after choosing to stop taking those drugs. His perplexing death has staggered his ACT UP comrades.

ACT UP has been portrayed as a cavalry of angry, single-minded, slogan-chanting, traffic-blocking attention seekers. But that description is simplistic: ACT UP members were manifold. Yes, some learned how to lie in the middle of Wall Street without getting their heads cracked open, but others learned to be their lawyers. Spencer taught himself pharmaceutical science; I taught myself to be a journalist. Although meetings were raucous and sometimes combative, we were also taught how to take care of those of us who got sick.

Deb was the second person I met in ACT UP; I befriended her because I had a crush on the first person I met in ACT UP, with whom she was friends. My infatuation fizzled, but our friendship did not.

Deb had never forgotten those caretaking strategies, and the summer I got sick, she was, fortunately, immersed in them, exploring in her dissertation how they inflected the lives -- and deaths -- of ACT UP members. When she found out I was ill, she insisted on going to the doctor with me. She was a formidable advocate. She helped me chronicle and then describe my symptoms. When I didn't understand a question, she translated it from medical-ese. She took notes and explained the doctor's recommendations afterward. She pushed back when the doctor condescended. She made being sick easier.

My new neurologist prescribed different drugs. It was a rocky transition. Their initial interactions made my hands shake so uncontrollably I couldn't use a cell phone. They caused ataxia and I landed in the emergency room. There were axe-blade migraines with LSD light shows. But it was Deb who insisted on a second opinion. We hiked up to Columbia Presbyterian together. I was seizure-y when I went. The nurse didn't want to allow her into the exam room. Deb prevailed.

* * * * *

My essay about Spencer proposed that while it was AIDS that killed him clinically, it was a constellation of trauma-related self-destructive behaviors now also afflicting many of his contemporaries from which he ultimately died. There were many negative reactions to my essay (reactions worthy of their own essay), but most readers have responded kindly. ACT UP comrades' polite disagreements have been outpaced by prolonged, dizzying Facebook threads: discussions and tocsins and links to current research. Bibliographies have been distributed, emails exchanged, data examined, meetings scheduled. We're good at this because we taught ourselves how to do it two decades ago.

More striking is the response that did not materialize. To illustrate what those who have survived the most lethal years of the AIDS crisis are now encountering, I had written intimately about the deaths of lovers and friends, the eclipse of my emotional life, my antipathy toward relationships. Yet no one asked, "Are you going to be OK?"

Friends' medical upheavals -- like AIDS, like epilepsy -- are, if not tangible, at least somatic, and can therefore be addressed straightforwardly. There are appointments to schedule, social workers to phone-zap, medications to sort out, bills to pay, and then, sometimes, apartments to clean out, memorial services to plan. We are expert at all of that. But if it was difficult to be publicly, emotionally raw, it can be even more difficult to respond to such vulnerability in kind -- especially after years of gradually being numbed by death and grief.

There was someone who expressed concern. After I wrote about Spencer, I received an email from a woman who had once worked for me and has since become a rabbi. She wrote, in part, "Your essay was hard to read, as I care deeply about you. I still struggle with the loss of my mother -- I cannot imagine what it would do to me If I'd lost 50 friends and lovers. If I can do anything specific, let me know."

Heidi is a lovely, caring person, but so are many of the friends who preferred to discuss the quality, rather than the content, of my prose. She is a professional caretaker, but therapists, social workers, doctors, nurses, and at least one other rabbi responded to my essay. She is also a straight woman years younger than I, with a husband and two beautiful daughters, who has never had to watch her friends and lovers die one by one or fear infection by the same virulent parasite that wiped them all out.

This is not an object lesson, a rebuke or a plea: I know my friends and comrades care about me. But there is ongoing emotional fallout from the psychic convulsion that is AIDS. Empathy is hard to muster when your reflection stares back at you; accepting it can be even harder. It never occurred to me to ask Deb for help when my seizures again erupted. And I'm not sure I would have asked, "Are you going to be OK?" either.

And I don't really know how to answer that question. I've been better, I've been worse. The neurologist's prescriptions were successful: my brain's volcano is again dormant. I feel grateful. And if I'm overwhelmed by Spencer's death and the tide of anger and sorrow -- mine and others' -- that now seems never to ebb, I'm also relieved that no one but Heidi has asked if I'm OK, because the more solicitous someone is, the farther away I'm likely to push them.