Contrary to popular belief, there are many great books about illness. My favorites are those that make a literary space out of illness, make material out of brain fog, show the fragmentary texture of thought-in-pain, thought subject to medications, plots punctuated by blood draws, the embarrassment of attempting to communicate through declining cognitive ability, the fundamental question of what to do with an unsaved life.

Following the success of his 1990 book, To the Friend Who Did Not Save My Life, and his rapid deterioration due to AIDS, Hervé Guibert stopped writing. Perhaps he no longer needed the money, or didn’t think he could outdo its success, or simply couldn’t lift his water glass. Guibert had been ambivalent about whether he wanted to know if he was seropositive for HIV: what was the point, he wondered, when such knowledge could drive someone like him to suicide? His book, a roman à clef of his experience being diagnosed with and losing friends to AIDS, was a scandalous release in France, largely because it revealed the death of “Muzil,” a thinly veiled Michel Foucault, to have been caused by AIDS. Guibert writes an extended portrait of his friend and mentor’s last days and wonders if it is a betrayal to do so. Foucault’s writing on the medical gaze is illuminated by Guibert’s portrayal of him: Muzil “told me he’d forgotten how completely the body loses all identity once it’s delivered into medical hands, becoming just a package of helpless flesh, trundled around here and there, hardly even a number on a slip of paper.”

Guibert chose not to hide his illness the way Foucault did. To the Friend Who Did Not Save My Life becomes the project of documenting the illness. Early on, Guibert writes that even once he sensed the structure of the book, he imagined multiple endings, and that “the whole truth is still hidden from me, and I tell myself that this book’s raison d’être lies only along this borderline of uncertainty, so familiar to all sick people everywhere.” Along the borderline of uncertainty, illness’s plot is revealed: Illness progresses. Friends react. Quack doctors and naturopaths capitalize on the finitude of the vulnerable. Each blood draw brings with it information: depletion of T4 cells, a prescription for AZT—a kind of ending, because someone about to take the drug is “already dead, beyond hope of salvation.” Rightfully, Guibert does not grasp at lessons or wisdoms to be passed on to the next generation of sufferers or to the healthy, but instead documents the illness, “sleek and dazzling in its hideousness, for though it was certainly an inexorable illness, it wasn’t immediately catastrophic, it was an illness in stages, a very long flight of steps that led assuredly to death, but whose every step represented a unique apprenticeship. It was a disease that gave death time to live and its victims time to die, time to discover time, and in the end to discover life.”

He also does not, as was the case with Muzil, seek out morbid silver linings: “Between fits of coughing,” Muzil “was eager to report on his latest escapades in the baths of San Francisco. That day I remarked to him, ‘Those places must be completely deserted now because of AIDS.’ ‘Don’t be silly,’ he replied, ‘it’s just the opposite: the baths have never been so popular, and now they’re fantastic. This danger lurking everywhere has created new complicities, new tenderness, new solidarities. Before, no one ever said a word; now, we talk to one another. We all know exactly why we’re there.’”

It’s easy to see why, given such character sketches, Guibert felt closer to selling out his friends when he wrote about them versus when he photographed them. The novel charts his own exorbitant efforts to leverage his celebrity status to procure special treatment and be cured by an experimental vaccine, so no one is depicted especially charitably. More striking is the way in which solidarity among Muzil and his friends creates, to some degree, the ability to live.

The term la belle indifférence, used to describe a strange lack of concern about one’s own illness, particularly in patients of hysteria or conversion disorders, gained popularity after Freud used it to describe ‘Elisabeth von R’ in Studies in Hysteria. It isn’t clear how useful this categorization is as a diagnostic criterion, but it’s largely considered to be part of the broader phenomenon of anosognosia, or “denial of illness.” An example given to students studying for the psychiatric board is that of a man who suddenly goes blind after the death of his mother. No physical cause for his blindness can be found, and the man is completely unconcerned with his inability to see. This hints to his caretakers that he may be a conversion patient.

Is the lack of concern really so strange? Might it be a way of telling oneself one story so as to avoid another? The kind of frantic grasping-at-the-life-force that happens when pain sets in might look like carelessness, but I think of it as grieving in advance, as clinging to shards of the peak experiences of life that you might lose access to too young. It is why, even after receiving a diagnosis, I continue to live, whenever possible, as I like—in denial, perhaps, but also, occasionally, liberated. When I can do it, it’s easy: the invisibility of my disease is on my side, after all, especially after a round of steroids, which give me an insatiable appetite and the edge of a healthier appearance through a few extra pounds. While I resist the idea of intoxicants being “for” anything, I couldn’t agree more with William James that they offer clear benefits for those whose pain has no end in sight—when Alice was diagnosed with breast cancer, he urged her to “take all the morphia (or other forms of opium if that disagrees) you want, and don’t be afraid of becoming an opium-drunkard. What was opium created for except times such as this?”

Sections of the book you’re reading now were written on opiates, with amphetamines to push through the opiate haze, steroids to suppress flares, benzos to temper the steroid frenzy, and various other drugs causing nausea—for which marijuana (which I called “slacker Xanax” in my ballet days) is, unfortunately, the only effective antidote I have found. Various intoxicants and the relief they offer allow me to be okay—okay because I want to be okay, to be able to drink and eat and have a social life and forget pain once in a while, even at great delayed cost; or okay because I have to be to keep my job to keep my health care to treat my disease. In either case, I cannot handle as much as other people can. In both cases, I must appear well enough not to draw concerned attention to myself. Both are fake. Both are temporary. Only the former, in combination with the ideal substances, provides the mania of feeling okay. You can spend your whole life with a voracious appetite and then, when the tide of chronic illness comes in, no longer desire food or sex or art or even mind-numbing, frivolous distraction—and it doesn’t matter too much. You just have to wait for the tide to ebb; for desire for something, anything, to return. I binge and purge health.

Guibert’s final entry: “My book is closing in on me. I’m in deep shit. Just how deep do you want me to sink? . . . My muscles have melted away. At last my arms and legs are once again as slender as they were when I was a child.”