from the Foreword to Sensing Light
In my office, at the back of a dusty file drawer, are stacks of three-by-five inch index cards. From 1986 to 2000, each time a patient at San Francisco General Hospital was diagnosed with retinitis, a complication of AIDS we rarely see now, I wrote their name on a blank card and used it to keep track of their medication doses, the extent of their eye damage, and their ability to read letters at twenty feet, or at least count fingers or see a hand waving across the room or, if nothing else, sense light from dark.
My drawer has six hundred and twenty cards. Most are very short narratives. Nearly all end in death within two years. The few who survived longer were fortunate enough to have received a new generation of anti-HIV drugs that became available in 1996 and allowed their immune systems to recover and stop further eye damage as well as other complications of AIDS. I still see some of these people in clinic today.
This book is dedicated to those who did not survive.
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Note to the Reader: While I aimed for historical accuracy in portraying the scientific, medical, and political aspects of the AIDS epidemic’s first decade, the characters in this novel are purely fictional creations. None are even remotely based on any real person.
from the first section: The First Case, 1979
On Wednesdays, Kevin had a morning clinic and came to work early to look in on his hospitalized patients beforehand. Today would be Mr. Miller’s fourth day in the ICU, and Kevin wasn’t hopeful about his recovery. He decided to see Miller last, after checking on two ward patients who had Pneumocystis pneumonia.
One was nearing the end of treatment, able to stomach medication by mouth and being weaned from nasal oxygen. He could likely go home tomorrow. A thirty-five year old investment banker with a private doctor in Pacific Heights, he had never been to City Hospital before collapsing in his office downtown and being brought to the ER by ambulance.
The banker was staring at the wall, expressionless, when Kevin peeked into the room.
“How’s it going?” said Kevin as he entered.
“How much time do I have?” asked the man in a monotone. “A few months? A year?”
Kevin sat down on the edge of the bed. He had learned by trial and error it was better to listen first, get a handle on a patient’s understanding of his disease and what he feared, then discuss prognosis. But this man’s replies to open-ended questions had been “I don’t know” up to now. He had shown no curiosity about his condition. Kevin presumed he was reacting to his diagnosis with disbelief and numbness—it can’t be happening to me. Clearly, he had moved to the next stage, depression. No, Kevin reconsidered, anger and bargaining are supposed to occur before depression.
The banker was mute, waiting for him to speak. Kevin couldn’t deflect the question and maintain credibility. He had to take a stab at it.
“Maybe longer, if you’re monitored closely, if we get on top of infections like this one sooner.”
“That’s pathetic! You don’t even know what’s causing the disease, do you? All you can do is try to treat the complications of having a crippled immune system, right? And mine has already been destroyed, hasn’t it? It’s not going to get better, so it’s just a matter of time. And not much time. And most of it spent feeling shitty, right?”
Kevin was at a loss. The banker had moved the wrong way, from depression to anger, in a blink. These stages of grief weren’t as orderly as one would think from reading the literature on death and dying. And patients like this were the most difficult, the ones with penetrating, merciless intellects that turned on themselves and their physicians. The best he could do now was to apologize.
“I’m sorry…I can promise we’ll do whatever we can to help you. There is research going on. We might have answers soon.”
Still refusing to look at him, the banker screamed, “I am fucked. Fucked!”
He lay down, covered his head with a pillow, and asked Kevin to leave.
Across the hall was a patient Kevin knew well, Danny, a fifty-two-year-old denizen of the South of Market bondage-and-discipline scene. Underneath the metal spikes and chains was a puckish, sweet-tempered man reconciled to the inevitable. Danny had been admitted the previous night with his third episode of Pneumocystis, a severe one. What little was left of his lungs was full of frothy fluid that blocked oxygen from diffusing into his blood. The pulmonologist on call had told Kevin it was futile to put him on a ventilator. Kevin hadn’t argued. Danny would die in a few days no matter what they did.
He stood in the doorway watching Danny’s labored breathing. Though he saw morphine dripping into Danny’s vein and knew his patient wasn’t conscious, Kevin couldn’t help but imagine being frantic with air hunger, the desperate compulsion to expel smothering liquid inside his lungs, the clawing need to inhale more air, the inability to gratify either urge. He left the ward trying to erase the intrusive picture in his mind of an abandoned car being crushed by a metal compactor.