Someone Was Here

Profiles in the AIDS Epidemic

George Whitmore

• Publisher: Open Road Media
• Year: 2013
• ISBN:
  9781480455078
• Topic: Sciences sociales
• Subtopic: Biographies de sciences sociales

Three powerful profiles of men and women whose lives were changed forever by the AIDS epidemic
"Some of my reasons for wanting to write about AIDS were altruistic, others selfish. AIDS was decimating the community around me; there was a need to bear witness. AIDS had turned me and others like me into walking time bombs; there was a need to strike back, not just wait to die. What I didn't fully appreciate then, however, was the extent to which I was trying to bargain with AIDS: If I wrote about it, maybe I wouldn't get it. My article ran in May 1985. But AIDS didn't keep its part of the bargain." — George Whitmore, The New York Times Magazine
Published at the height of the AIDS epidemic, Someone Was Here brings together three stories, reported between 1985 and 1987, about the human cost of the disease.Whitmore writes of Jim Sharp, a man in New York infected with AIDS, and Edward Dunn, one of the many people in Jim's support network, who volunteers with the Gay Men's Health Crisis organization in the city. Whitmore also profiles a mother, Nellie, who drives to San Francisco to bring her troubled son, Mike, home to Colorado where he will succumb to AIDS. Finally, Whitmore tells of the doctors and nurses working on the AIDS team in a South Bronx hospital, struggling to treat patients afflicted with an illness they don't yet fully understand.
Expanded from reporting that originally appeared in the New York Times Magazine, Someone Was Here is a tragic and deeply felt look at a generation traumatized by AIDS, published just one year before George Whitmore's own death from the disease.

1987

AND THE LORD SAID unto Satan, Whence comest thou? Then Satan answered the Lord, and said, From going to and fro in the earth, and from walking up and down in it.

—The Book of Job

LINCOLN HOSPITAL, THE SOUTH BRONX

BARELY HALF AN HOUR from midtown Manhattan, the big red-brick hospital is located in the South Bronx, a world apart. The hospital was founded in 1839 by a group of white women to provide relief for aged blacks, many of whom had been slaves. The hospital’s coat of arms reads—Health, Dignity, Compassion.

The present, thoroughly modern hospital building cost $250 million and was opened in 1976. A part of the municipal hospital system, it was built to accommodate 750 beds and currently operates with 539. The hospital’s occupancy rate is 97 percent, the highest in the system.

In early 1987, the Democratic party power establishment in the Bronx is in turmoil following a series of scandals involving bribe taking and political corruption. Since the upper echelons of the hospital administration tend to get filled with patronage appointees, this disarray has extended to the hospital. The most recent administrator resigned amidst allegations that he’d received kickbacks from hospital hiring practices.

The organization of the hospital is compartmentalized and the member-states don’t always communicate. Apart from administrative departments, there are departments for adult psychiatry, medicine, gynecology/urology, surgery/neurosurgery, plastic surgery, oral surgery, orthopedics, obstetrics, and pediatrics. The hospital’s emergency department handles over 220,000 patient visits a year; its outpatient clinic, over 500,000. The hospital transfuses nearly 7,000 units of blood annually. Support services include chaplains, patient advocates, social workers, and volunteers. The hospital has a barber shop, a beautician, a playroom, a coffee shop, and a gift shop.

The hospital stands on East 149th Street beside commuter railroad tracks. To reach it on foot from the Grand Concourse, you walk across a bridge over the tracks. There is a chain-link fence along the bridge to keep people from jumping off it or throwing things onto the trains. Even during cold winter days, street peddlers hang brightly colored skirts on the fence and set up tables sheltered from the biting wind in the lee of semi trailers the post office parks along the street. The peddlers sell fruits and vegetables, flowers, sweaters, jackets, handbags, jeans, cosmetics, incense and ointments, framed prints—glossy photos of sports cars, exotic flowers, women in skin-tight pants and spiked heels—even bed pillows. You have to keep walking, past the hospital, up a long, long block to Third Avenue, to buy drugs.

1. THE LIST

FEBRUARY 17, 1987. IT’S Tuesday after the long weekend and no one wants to be back at work, so the meeting starts a little late. This morning three people in white lab coats sit at the table. A reporter is also here, so everyone’s a little nervous. It isn’t often that someone who isn’t manifestly ill comes into this closed world from the outside.

The hospital AIDS team meets in this room every Tuesday morning, almost without fail, to review the inpatient list. In the beginning of the epidemic, when there were only one or two people with acquired immune deficiency syndrome in the hospital, there wasn’t any need to consult on a regular basis. But by this time last year, on any given week, there were a dozen or more AIDS patients in the hospital in addition to many more being seen in the outpatient clinic, so the team was formed to advocate for them. Now there are routinely more than two dozen names on the weekly inpatient list and the epidemic shows no signs of peaking—not here at least, among the poorest of the poor. Here whole families have died of AIDS.

The team meets in the Infection Control unit on the seventh floor in a large room with four desks that are usually occupied by nurses. There’s a bulletin board covered with greeting cards, printed notices, and a bumper sticker that reads “Infection Control Nurses Get The Bugs.” Like many of the staff rooms in the hospital, this one feels claustrophobic. There are only three portholelike windows high up on the wall and they can’t be opened. Little light penetrates. It could easily be dark outside. It is 9:40 a.m.

Judith Lieberman, clinical director of the Infectious Disease service, leads the meeting. The others sitting at the table are B.C. Gerais, a pharmacological psychiatrist, and Robert Carter, a social worker. The team is short two members. The nurse assigned to it full time is on leave and, because the pay is low relative to that at a voluntary hospital, no one has yet answered the advertisement placed in the papers some time ago for an outreach social worker. The Catholic chaplain, Sister Fran Whelan, is a sixth, ad hoc member of the team. Sr. Fran has been working with AIDS patients since the beginning of the epidemic—in fact, she was the only one visiting them for some time. Sr. Fran does a lot of bereavement counseling.

Head down, elbows on the table, wearing a button that reads WASH YOUR HANDS, Dr. Lieberman plows through the patient list, taking each in turn, reciting facts and figures, exhibiting uncanny if not total recall of the circumstances of each case. Dr. Gerais—a petite, irrepressible woman, called Babe by her friends—sits next to her making notes on three-by-five cards imprinted with patients’ names and hospital registration numbers.

Today the list consists of 23 names with chart numbers, admission dates, room numbers, and diagnoses, recorded on a form in neat black Palmer penmanship and photocopied for the team early this morning.

Almost invariably, the column headed “Diag.” on the list simply reads AIDS, but in a few instances it reads R/o AIDS because some patients are waiting to find out if AIDS can be ruled out in their case. The majority of AIDS patients on the list have pneumocystis carinii pneumonia—and for some reason, February is a peak month for pneumonia—and/or opportunistic infections like crypto-coccal meningitis, centomegalovirus, and toxoplasmosis. These are AIDS-related infections that sometimes went unrecognized and undiagnosed a few years ago—patients were dying so quickly—but were included in the revised 1985 Centers for Disease Control definition of AIDS. Dementia, an illness similar to Alzheimer’s disease, and emaciation, a wasting away, are now considered by doctors virtually to define AIDS as well.*

There are no transfusion-related or hemophiliac cases on the list—few, if any, are ever seen at this hospital. And only a small minority of patients in this hospital displays the skin cancer, Kaposi’s sarcoma, that was at first a primary indicator of AIDS. Kaposi’s sarcoma is still most often seen in homosexual males, and now—for some reason—less frequently at that.

Most of the people with AIDS in this hospital have a history of intravenous drug abuse. The staff calls them IVDAs. These patients got the so-called AIDS virus from sharing contaminated needles. Other AIDS patients here were their sexual partners or children. They acquired their HIV—for human immunodeficiency virus—infection via sexual intercourse, in the womb, or during birth.

Four patients who have been diagnosed with AIDS-Related Complex, or ARC, have been placed on the list, yet the list doesn’t represent the total number of AIDS-related cases in the hospital. Between 70,000 and 97,000 New Yorkers have ARC, over seven times more than have AIDS, but six years into the epidemic, ARC still constitutes a vast, shaded area of diagnosis.

People who never reach the point of an AIDS diagnosis can die from diseases associated with HIV infection anyway. Endocarditis, for instance, is a heart disease often seen in drug addicts. A full 90 percent of endocarditis patients in this hospital also have candidiasis, or oral thrush, a good indication that they are immune suppressed. If those patients were added to this morning’s list, there would be twice as many people on it. Even in 1987, the full ramifications of HIV infection are not yet fully appreciated. For example, three of the ARC patients on the list today have TB—epidemiologists speculate that HIV infection accounts for the first rise in the incidence of tuberculosis since 1953. Chronic renal failure is also emerging as another, more subtle byproduct of AIDS.

The list has all the ingredients of a soap opera:

One woman with AIDS was discharged over the weekend because hospital police found vials of crack on her.

One man with AIDS can no longer recognize his sister.

One woman with AIDS who is ready to go home can’t because her daughters, addicts, threatened to harm the home-care attendant when she came to introduce herself.

One man with AIDS walks around the ward, wheeling his intravenous stand along with him, socks crammed with cash.

Dr. Lieberman plows through the list.

Not infrequently Dr. Lieberman looks exhausted, and today is no exception. For one thing, she’s due at the dentist’s for root canal work. But if you were to ask her directly, Dr. Lieberman would willingly admit that the job is getting to her, too.

Dr. Lieberman is under a lot of stress and much of it is simply due to “the system”—the great, amorphous, many-tentacled system that holds her hostage along with everyone else in the hospital. Like everyone who works inside the system, Dr. Lieberman is constantly frustrated by it and fighting against it. The system sees to it that patients’ charts disappear, that specimens are lost on the way to the lab, that sometimes obtaining a necessary service or commodity from another part of the hospital depends mainly on the goodwill—and skill—of individuals.

Mr. Husseni, for example, is recovering from pneumocystis pneumonia, but lately he’s been exhibiting certain personality changes. The other day, Dr. Lieberman was able to persuade him that the diagnostic spinal tap he had long refused to permit wouldn’t hurt too much. She promised him it would be easy but it wasn’t. It was very difficult. His spine was clenched tight and the interns just rammed the needle in through the vertebrae. Mr. Husseni screamed in agony throughout. As an intern herself, Dr. Lieberman developed a shell, and she moves about the hospital inside it, but she still can’t stand to hear a patient scream.

The system can be almost diabolically unresponsive to patients with AIDS. Technicians are preparing to perform a crucial liver biopsy. The patient coughs. They refuse to stay in the room. The distraught 11-year-old daughter of a dying woman can’t get counseling. The child psychiatry department hasn’t yet perfected its policy on children of patients with AIDS.

Sometimes you can only laugh.

Of course AIDS is not the only fatal disease in the hospital. Many patients die here of cancer or liver disease from alcoholism. But Dr. Lieberman did not train to be an oncologist treating cancer patients. In fact, she deliberately chose infectious diseases as a specialty because she wanted to be able to make people well. She certainly did not expect to see people in her care die in such numbers—only three other city hospitals have more AIDS patients than this one.

In addition to her hospitalized patients, Dr. Lieberman sees outpatients in the weekly parasitology clinic—no one wants to call it the AIDS clinic—so each week she’s in contact with lots of people who have AIDS. Dr. Lieberman is in her thirties. Since people with AIDS are on the average from 29 to 35 years old, many of her patients are her contemporaries. Just as she does, they have family concerns, concerns about money, surviving in New York. Some of them, she knows, are felons on the street. But the hospital is a leveler. Naked, sitting on a table in the examining room, under the white glare of fluorescent lights, waiting for the doctor, perhaps fearful, a man or woman is most vulnerable, most human.

Dr. Lieberman likes her patients almost without exception. They aren’t objects to her. They’re people. She gets to know each one of them intimately. She also must daily live with the fact that she will usher many of them with AIDS in and out of the hospital time and time again—until the end comes.

The problem of burnout among doctors, nurses, and other health-care workers in the hospital who have to face a seemingly endless procession of deaths from AIDS is not often confronted directly. Like everyone here who treats patients with AIDS, Dr. Lieberman has learned to rely on sharing her feelings of grief and anger with colleagues. Sometimes, in order to continue functioning, she must simply set feelings aside, like a letter from the I.R.S. you put off opening. If she allowed herself to cry as often as she felt like crying, she would be crying a lot of the time.

Dr. Lieberman routinely has success treating the opportunistic infections that initially accompany AIDS, with medications like Amphotericin-B, Septra, and Pentamidine. She can buy time for patients. The experimental drug AZT, much in the news at present, has given doctors new hope. Though toxic, it seems to arrest the spread of the HIV virus and has clearly shown promise among a few categories of AIDS patients. Nevertheless, Dr. Lieberman knows that she will probably continue to be a relatively helpless witness to her patients’ decline and demise for many years to come.

There are no routine AIDS cases. Today, for instance, the list is full of anomalies. One man on the list will die this afternoon, presumably of an infection generally considered treatable nowadays. In the absence of this underlying, incurable immune deficiency, such cases might have represented unusual, even stimulating challenges to Dr. Lieberman and her colleagues—including the young residents under her supervision who earnestly sweat through Socratic instruction over a stack of pink patient status sheets with her during weekly rounds. But in the shadow of AIDS, this reading of the weekly list sometimes resembles a macabre bookkeeping chore more than it does the practice of medicine.

So Dr. Lieberman plods on.

Part of her problem is semantic. What should she call an alien, untoward abscess that has emerged out of a wasted body like a special effect in the movies? Resorting to euphemisms is an inescapable tic. This morning she calls it “something weird.” General deterioration, fever of unknown origin, empirical diagnosis.

Dr. Gerais is at least free of that burden. Dr. Gerais knows psychosis when she sees it and her pharmacopia is ample. With a single injection Dr. Gerais can knit up the raveled sleeve of care until it unravels again. Dr. Gerais must only listen. Last weekend, for instance, she spent an hour listening to Mr. Cintron, who she discovered liked best to be called Roberta. Mr. Cintron was in the early stages of a sex-change when he came down with AIDS. He is very weak but his spirit is strong. When Dr. Gerais asked him if he had a lover, he snapped back, “I can’t be in love now, my machine is out of order.” Mr. Cintron’s family—his mother, his brothers and sisters—has rallied around him and they all visit him in his room. He is “she” to them, too. In his cross-dressing days, Mr. Cintron was a prostitute. “Name it and I did it,” he told Dr. Gerais...