One year ago today, I told my colleagues that I was dying of AIDS. I
had been fighting it for years -- the illness and the telling.
I had been taking AZT, and briefly even a drug given to lepers. But
now I was gaunt, tired and rather sure I was losing the battle. I gave
my boss an obituary I had written -- I'm a features editor on Page One
of The Wall Street Journal, so I certainly didn't want anybody else
writing it -- sent a note to my boss's boss and started saying my
goodbyes.
Last week, my doctor, Jerome E. Groopman, noticed that I am getting
fat and said it wouldn't be a bad idea if I went on a modest diet. At
age 53, I am going to the gym again. I need to buy some new clothes. I
am planning to one day retire with my partner of 28 years, who is
HIV-negative.
What has happened in the past year, at least for me, is a miracle
that couldn't have taken place at any other moment. The year 1996 is
when everything changed, and very quickly, for people with AIDS. I have
been grappling with this disease for nearly a decade and a half, almost
since the beginning, when it was called Gay Related Immune Deficiency,
or GRID. I've outlived friends and peers, and now I find myself in the
unusual position of telling people how I've survived this scourge,
something I never thought would happen. My condition could change for
the worse tomorrow. But today I feel well again.
Thanks to the arrival of the new drugs called protease inhibitors, I
am probably more likely to be hit by a truck than to die of AIDS. In
coming alive again, I've learned the value of a good doctor and good
friends -- and the importance of being honest with yourself, your
co-workers and the people you love.
My battle with AIDS, I'm certain, began in December 1982, at a
bathhouse in Manhattan's East Village during a sexual encounter with a
man whose name I didn't catch. Like other gay men, I had kept up with
newspaper reports, beginning with a July 3, 1981, New York Times story
with the fateful headline: "Rare Cancer Seen in 41 Homosexuals."
Nevertheless, going to the baths was a big part of gay culture back
then, and here I was. Old habits die hard.
At the time, the federal Centers for Disease Control and medical
authorities were saying little about this being an infectious disease.
Indeed, they at first thought it probably wasn't. But it was pretty
clear that GRID was caused either by the cumulative effects of too much
sex (so many men, so many germs) or too much butyl nitrite (poppers), a
sexual stimulant sniffed from little vials available for $5 at
newsstands. The third possibility was that it was a sex-borne plague.
A week or two after that encounter, I came down with the strangest
flu. It had the usual aches and respiratory symptoms, but also a high
fever and a rash. It lasted for a couple of weeks at Christmas when my
partner, Lewis, and I were in Denver visiting my mother, just two weeks
before she died. I have since learned that when people become infected
with the human immunodeficiency virus, they often have such an illness.
It was on this visit that my mother asked us over dinner one night
whether we had seen a TV documentary about "the disease a lot of people
in New York are getting." "Homosexual" was a word I never heard from my
mother, and I didn't utter it around her. Sex wasn't anything we talked
about. I had been living with the same man for more than 14 years, and
my mother, who was perfectly accepting of our relationship -- a marriage
in every sense but the legal one -- was still hoping for grandchildren
from her only child.
Yes, we told her, we had seen the program. End of discussion. I
didn't volunteer that I thought I myself might have recently been
infected. My New Year's resolution was to become as chaste as a priest
is supposed to be, and I did. I was determined not to get infected if I
wasn't already, and I didn't want to infect anybody else.
But the signs were there. I tired easily. On a trip to Japan in 1984,
I had the first of recurring night sweats, which can be a sign of
infection. When I dieted, I would drop weight quickly -- 48 pounds in
one four-month period.
When the HIV blood test finally became available in 1985, I wasn't
interested in opening Pandora's Box. There wasn't anything you could do
for HIV then anyway.
It wasn't until 1989 that researchers reported that HIV-positive
people -- and not just patients with full-blown AIDS -- might benefit
from the drug AZT. Now there was a good reason to be tested.
I got the news on Sept. 22, 1989, when a woman named Bea at the New
York City public-health clinic on Ninth Avenue told me I was
HIV-positive. I have always been health-conscious. (Lewis said to me
recently: "You are the answer to the question `Can you have AIDS and be
a hypochondriac?'") But at that moment I suddenly stopped worrying about
twinges, radon and asbestosis and focused squarely on dying of AIDS.
Bea, who knew me as a code number, said to comfort me: "If I considered
this a death sentence, I couldn't do this work." She told me to go to my
doctor and get on AZT.
I wasn't surprised by the test result, but I was upset. I'm not a
crier, but I cried. I took a taxi from the clinic to the Journal and
proceeded to sleepwalk through the day. That morning, I attended a
meeting to talk about a series of articles on public schools. My only
thought as I sat silently through the discussion was, "What do I care?
I'm dying."
I didn't know whether I would ever care about anything again, except
that I was worried about Lewis, and I felt strongly that I didn't want
to endure some long, terrible final illness.
Because my helper T-cell count (T4 lymphocytes) was 457, well above
200, which represents clinical AIDS, my doctor didn't recommend that I
do anything but monitor the situation with blood tests every three
months.
The first year that I knew myself to be HIV-positive was the last
year of my friend David Coon's life. He had been the back-of-the-house
manager at the Odeon, a restaurant I liked in lower Manhattan. He gave
me good tables. I bought him a subscription to The Wall Street Journal.
Lewis and I had more than one Thanksgiving dinner at the Odeon, with
David working, and we became friends. Late in 1989, he lost 35 pounds
and was hospitalized with what Keith Younger, a gay waiter who worked
with him, told us was "a bad case of toxo" -- toxoplasmosis, a parasitic
infection contracted from cat litter that can cause encephalitis.
Once out of the hospital, David said nothing of AIDS, but claimed he
was found to be lactose intolerant. That was why he lost all the weight,
he said.
The last time I saw David was the following summer at his apartment
on Second Avenue. He had been in and out of the hospital, complaining
that "there were too many people dying" around him. "It's an AIDS ward,"
he said. He was blind in one eye. He was being fed intravenously. He had
24-hour nursing at home. He was having to sell his weekend house. I told
myself I would commit suicide before I let anything like this happen to
me.
That December, I got a refund from The Wall Street Journal for the
remainder of David's subscription. Someone had canceled it. I called to
see if he was OK. I asked his nurse Roberta Montuori whether I could
speak with him. "You can talk to him," she replied, "but I don't think
he will be able to talk to you." She gave him the phone. I spoke. He
made excited animal sounds that were nothing like words. Two days later,
he spit out his medicine and died. Two months later, Keith was dead,
too.
I wasn't even going to think of dying in such misery. I retreated
into bookkeeping. According to the Kuder Preference Record, an aptitude
test I took in school, my interests pointed toward a career as a
certified public accountant. Fortunately I became a reporter instead, a
writer and managing editor of the New Republic for 11 years in the '60s
and '70s, then managing editor of Harper's magazine in 1979 and 1980.
But with my bent for accounting, and a Swedish fatalism I picked up
from my mother and immigrant grandparents, I started getting my affairs
in order -- revising my will, withdrawing the voluntary contributions I
had made to the profit-sharing retirement plan of Dow Jones & Co., which
owns The Wall Street Journal (so I could spend the money), and making
lists of insurance policies.
The other thing I did was to embark on a campaign of deception.
My doctor suggested I not file for insurance reimbursement for my
regular T-cell tests, which I had every three months and which were
costing about $150. "You can afford it," he said, knowing nothing about
my financial health. The lab test was a tip-off, he said: "Even though
these things are supposed to be confidential, employers have a way of
finding out."
I wasn't afraid that The Wall Street Journal would fire me for being
HIV positive. The company had been good to employees with serious
medical conditions, including the two people I knew of who had died of
AIDS.
But 1989 was a world away from 1996 in the way Americans felt about
AIDS and, particularly, about the routes of contagion. I didn't want to
tell anyone I was infected and thereby change forever the quality of my
relationships.
Lewis and I didn't have a gay social set. Most of our friends are
married couples with children. And though I was discreet about my
homosexuality, Lewis and I are a couple, and I figured people knew I was
gay, if only because I had written an op-ed piece for the Journal Aug.
29, 1985, titled "Need We Guess Why Young Men Are Dying?" In it, I
questioned why in a year of reading obituaries and classified
death-notices in the New York Times, I could find only four listing AIDS
as the cause of death. Back then, young unmarried men in the obituaries
died of pneumonia, leukemia, meningitis and lymphoma, or "after a long
illness," but rarely of AIDS.
I crossed the threshold into AIDS itself on Oct. 15, 1991, when my T
cells fell to 198. At that point, my doctor recommended I start taking
AZT, 100 milligrams, five times a day. He also prescribed a drug I had
never heard of called Dapsone. I went home, looked it up in my
Physicians' Desk Reference and learned that its primary use was in the
treatment of leprosy.
Just filling the prescriptions took guts I nearly couldn't muster. I
was as embarrassed as a teenager buying condoms. I watched the pharmacy
clerk read the prescription, then glance up at me. That was an intimacy
I didn't want. "Would you like counseling from the pharmacist?" he
asked. I did not; I wanted to get out of there.
I also didn't want to take the medicines. Definitely not a drug for
lepers. And not AZT, which had potentially bad side effects, including
liver damage. I took the pills for five days and quit.
Lewis and I had always thought we would grow old together, and now it
looked as if I was going to be bailing out. Together we prepared for my
decline and how the two of us would get through it. My bookkeeping
proclivities had me signing and notarizing a living will, a limited
power of attorney for health care, and a general power of attorney. I
arranged for my cremation with the Neptune Society. I wanted to be sure
that if I got very sick, Lewis would have the authority to pull the
plug.
I told my doctor I wanted to be treated in the most minimal way, that
I wanted no heroic attempts to prolong my life if I were to become
terribly ill. He said that even if I chose not to take the Glaxo
Wellcome drug AZT, and had no appetite for the Jacobus Pharmaceutical
drug Dapsone, I should be taking a generic version of double-strength
Bactrim, an antibacterial drug that staves off Pneumocystis carinii
pneumonia.
I wasn't accustomed to ignoring the advice of doctors, and I decided
to be a good boy and take my medicine, joylessly. I started with a daily
dose of Bactrim on Feb. 22, 1992. I went back to AZT on May 22. At
first, I thought AZT ruined the taste of food, but I have never missed a
dose. I would have been more enthusiastic had the doctor really believed
in it. Does it do any good? I asked. "Maybe some, probably not a lot.
Nothing does much good," he said.
I thus began a long slow slide in immune function, measuring out my
life in 12-week increments between blood tests. My T-cell results
trended down, culminating in a count of 138 on Sept. 27 last year. We
tried adding to the mix the antiretroviral drug Videx (DDI), made by
Bristol-Myers Squibb. Taking it made a drink of alcohol feel like a kick
in the stomach. I went on the wagon and wondered what vices I had left
to give up.
By November, I was sad and defeated. I weighed 161 pounds. I am
6-feet-2-inches tall, and, naked in a mirror, I could see how emaciated
I was. I was exhausted at the end of the day, and I was feeling that
life consisted of taking pills, going to work, sleeping very long hours
and going to work again. The routines of daily living had become a
burden.
Over the years, I had observed in my doctor's office and on
Christopher Street -- the center of a largely gay neighborhood in
Manhattan -- men walking with canes, men with sunken temples, wispy hair
and sadness in their eyes. I would often encounter one of these sad men
and exchange knowing looks. I knew they had AIDS and I believed they
could tell I did, too. Nothing needed to be said.
My friends, it turns out, swear they couldn't see it and didn't know
I was sick, though people were saying "How are you?" in a particularly
earnest, heartfelt way.
It seemed that all that remained was to wait for some opportunistic
horror to kill me, and I thought it would happen in 1996. I had had my
first AIDS-related infection, thrush, a kind of athlete's foot of the
mouth that is readily cured by a costly Pfizer drug called Diflucan.
I asked my doctor's partner, who diagnosed the thrush, whether it
meant my immune system had gone over a cliff. He said no, it didn't. But
I felt that now was the time to do something.
The something I decided to do was to tell my boss, John Brecher, the
Page One editor, and Paul Steiger, the managing editor of the Journal,
that I had AIDS. I could see the slide I was on, and I didn't want to
have to lie about workdays missed and possible hospitalizations.
Besides, I assumed that because I was so haggard they must already know.
Remembering what my doctor had said, I was also sure that they had
heard all about it from our group insurer. For a while I did pay for my
T-lymphocyte subset tests myself. But when I began taking AZT, I started
to file for everything, and last November I told my doctor to begin
writing AIDS -- not "viral infection" -- as the diagnosis on insurance
forms. Call it another step in my coming-out process.
I wrote a difficult letter to John and to Paul. "I need to tell you
this directly. I have AIDS," I wrote. "I do not know how long I have to
live, and I am ripe for AIDS-related diseases. But I would like to
continue working on Page One as long as I am making a contribution and
am trusted to do good work." I concluded it: "This is a bummer, I
realize, and I am sorry to add it to your burdens."
No, it turned out, they hadn't suspected I had AIDS. Yes, I could go
on working. Both men offered carte blanche assistance: "If you need
anything at all, let us know." They used about the same words.
I asked Paul if he thought it would be a good idea to send out an
"all-cities" memo to the newspaper's bureaus that I had drafted for his
signature. Paul didn't merely edit and sign my draft, he attributed it
to me and added this in his own words: "I know you will join me in
sending David our deep love and high respect, in affirming his enormous
contributions and continuing value to this newspaper -- and in wishing
him many more happy years here." The memo went out Nov. 8. I thought of
it as a death notice, but it turns out to have been more of a rebirth
announcement.
For the next month, I was utterly unable to do my job because I spent
the days talking to callers and speaking to friends at work. The cards
and letters poured forth. The experience was a lot like attending my own
memorial service, something I have always wished I could do. I hadn't
truly expected the hugs and the tears and the rest -- even the laughs. I
was consoling people who were trying to console me. I had already gone
through all the stages of mourning for myself.
I also sent out my first-ever personalized Christmas letter to tell
friends and relatives, some of whom I hadn't seen for 20 years. Lewis,
who sees clearly, warned me not to become a poster boy for AIDS, and I
knew that sending health bulletins far and wide was to invite every
conceivable reaction. I did expect to see some sign of disapproval, but
there really wasn't any, certainly no outright hostility. A cousin in
Denver did start sending me religious tracts -- and a Billy Graham tape.
One of my holiday letters went to Martin Peretz, editor in chief of
the New Republic. I hadn't seen him in the 19 years since I left the
magazine, but time hadn't diminished our friendship, and I wanted him to
know what I was telling everybody but the deli man on the corner. The
letter to him changed my life. Marty called me immediately. He said his
friend Jerry Groopman, who practices medicine in Boston, "treats AIDS
very aggressively." I really ought to see him.
Marty said he would be glad to make the introductions. He called me
again to say that Jerry could see me in three days.
It was too soon for me. I was happily dying -- and about to go on a
Mexican vacation. I felt I had made my peace with death and, in a way,
was looking forward to it. I had blown my mother's estate, about
$180,000, on living for the moment, eating in the best restaurants and
taking three or four foreign vacations a year. There was no time to
lose, and I was determined to go out in style.
Did I now want my AIDS to be approached aggressively? I wasn't sure.
But I decided to make an appointment, and on Jan. 23, I flew to Boston.
Marty had told me a story about Dr. Groopman. They were at temple,
and during the misha berach, the prayer for the sick, Jerry was reading
off a list of his patients. When everybody else had finished praying,
Jerry was still reciting his list. Marty later asked him about it:
"Jerry, but you are a man of science." The doctor replied, "Yes, but I
am also a Jew."
Jerry confirms that the conversation took place. He is a wonderful
mixture of scientific expertise and religious faith. He has been
treating AIDS patients since 1980, before anyone even knew the meaning
of the pneumonia and Kaposi's sarcoma he was encountering as a
28-year-old doctor at the University of California at Los Angeles. The
6-foot-6-inch gray-bearded Harvard professor also juggles his time among
his wife, Pam, and three children; a book he is writing; and the
patients he sees as chief of experimental medicine at Beth Israel
Deaconess Medical Center.
The day I met him was one of the most important days of my life. His
secretary, Youngsun Jung, had asked me to scavenge what medical records
I could and bring them with me. I had graphed all my T4 numbers, the
results of 19 blood tests between Sept. 11, 1989, and Jan. 3, 1996. The
high was 580 on April 19, 1990. The low, on Sept. 27, 1995, was 138. The
numbers bumped around, but after January 1991 the trend was gently
downward.
Jerry ("Only my mother calls me Dr.") Groopman, 44, took my medical
history and said it appeared I had a very weak strain of the AIDS virus.
I wasn't in as bad shape as I thought. He was very optimistic that my
life could be prolonged by the Roche drug Invirase, a protease inhibitor
that had been approved by the Food and Drug Administration just the
month before. He said I should take it in combination with AZT and the
Glaxo Wellcome drug Epivir (3TC), a "nucleoside" in the same class as
AZT.
He was equally reassuring when he moved on to the physical
examination. I was skinny, but I wasn't wasting. My muscle tone was
fine. Looking at my tongue, he said, "You've got thrush again." I should
be taking 100 mg of Diflucan prophylactically every day, he said.
I filled the prescriptions in Boston and popped my first pills on the
Delta shuttle back home. There were so many pills. Generic Bactrim
(SMX-TMP) and Diflucan every morning. Three capsules of Invirase three
times a day, AZT five times a day, Epivir twice a day.
It would be some kind of yuppie whine to complain about how
burdensome it is to swallow a lot of pills on a complicated schedule,
particularly if they keep you healthy. It isn't all that difficult. But
you can plan a slow day entirely around taking medicine. Each of the
drugs comes with a long list of possible nasty side effects, ranging
from liver and kidney damage to pancreatitis and neuropathy in the
limbs. So far, I have experienced none of that.
My next big problem was what to do about my doctor in New York. On
Feb. 7, I told him I had been given a chance to see Jerome Groopman at
Harvard. "Do it," he said, recognizing the name. "I've already done it,"
I replied. "Good. What did he say?" The doctor agreed to follow Jerry's
regimen, but warned: "Nobody knows what harm these drugs are going to do
to your body or how long they will keep you alive."
Invirase was put on the market in December after 26 weeks of clinical
trials that had such heartening results it got the quickest FDA approval
of any new medication in history. (The record was broken in March by the
other two protease inhibitors currently on the market, the Abbott drug
Norvir and Merck's Crixivan). Who knew what would happen to patients
after a year or two?
Dr. Groopman, who agreed to become my "primary-care provider," uses
his own sophisticated "viral-load" test that counts viral RNA in a
milliliter of blood down to 100 viral units. Below that is considered
undetectable. The more AIDS virus one has coursing through his or her
veins, the greater the likelihood of AIDS-related disease.
My very first viral-load test, taken before I went on Invirase, was
only 5,795, which is very low, even with treatment. A viral load of
5,000 is correlated with a 100% chance of surviving five years; at
100,000, you are in bad shape.
I stopped the presses on my obituary. After several weeks on the new
therapy, I also started feeling well, better than I had in 10 years. I
started gaining weight, 25 pounds to date. I no longer was fading.
Oddly enough, the return from my near-death experience was at first
very annoying. I had a few adjustments to make. I had to start thinking
again about my bills. Lewis and I had salted all the money we could into
a co-op apartment and untouchable retirement accounts, and with my
mother's money running out, we now had to start living within our means.
My life-insurance benefits weren't heading his way as soon as I had
reckoned. Enough money was coming in from our respective jobs to pay
bills, but there was no discretionary income to speak of.
Fortunately, my work is fulfilling, so I didn't need to reconsider my
ambitions. But I have had to re-energize myself for the daily grind. I'm
even thinking about cleaning the basement.
But I'm not out of the woods. This treatment needs monitoring. My
second viral-load test, after a month on Invirase and the other drugs,
was 470, a spectacular decrease. But my third and fourth tests taken 10
weeks apart showed increases in viral load, to 1,000, then to 2,000. The
number was still low but headed in the wrong direction.
On June 26, Jerry doubled the Invirase to 3,600 mg a day (18 big
yellow and green capsules). In August, he added the just-approved Roxane
Laboratories drug Viramune, which is like AZT and 3TC but different; it
is a "nonnucleoside." In September, Jerry took me off AZT, which may
have played itself out after four years, and substituted the
Bristol-Myers Squibb drug Zerit (D4T), another drug in the same class.
The viral load on Sept. 3 had come down to 600. "An A+," Jerry said.
The battle plan has been to move to Norvir or Crixivan if the AIDS
virus is still detectable. I won't get my Oct. 29 results until next
week. The goal is to get the viral load down to a level that can't be
measured, so as to reduce the likelihood that the virus will mutate into
a drug-resistant form.
Perhaps the best news I've had is that my T4 cells rose over six
tests from 157 to 292. The new drug "cocktails" haven't been
resoundingly successful in raising the T4 counts of patients with truly
devastated immune systems, even when viral loads decrease. But 292 is a
level that can probably sustain me.
Some HIV-negative men are guilt-ridden that they aren't infected when
they see so many of their friends dying. I feel guilty that I am getting
the best possible medical care, because it is unavailable to most of the
world's AIDS sufferers, and to the poor and uninsured in this country.
According to the CDC, as of June 30, 343,000 people in the U.S. have
died of AIDS. The agency estimates that as many as 900,000 are infected.
About 100,000 are taking protease inhibitors.
My prescriptions for the year ended May 31, 1996, cost Dow Jones
$7,634.06. Next year the bill will be higher.
Last week, on my sixth visit to Dr. Groopman's office in Boston, I
had an hour to kill in his waiting room to read an issue of Poz -- a
magazine for the HIV-positive -- and to watch eight or 10 other AIDS
patients coming and going. The extraordinary thing about the scene was
that everyone was smiling, almost constantly.
People in doctors' offices had always struck me as bored or
frightened. These men bantered with Nancy Leary, the secretary, smiling
all the while. The fellow sitting nearest me stepped to the desk to
speak animatedly on the phone about his Crixivan prescription.
Ten months ago, he was skeletal. He had an infection and his doctor
believed he had weeks to live. Now, thanks to Crixivan, his viral load
is too low to count, and he looks like the professional model he once
was, handsome and healthy. To see him, you would have no idea he has
AIDS or, as he said, that "this has been going on for about 10 years." I
told him that I believe I was infected in 1982. "You're lucky," he said.
Most people infected that long ago are dead."
