If I hadn’t known before, then I knew on the plane. Everything was different. It was the first time I could remember that I wasn’t afraid of flying. I couldn’t drink, but I didn’t want to. I didn’t even need the alcohol.
Stan and I were on our way to Utah to go hiking. The previous year, we’d broken up. But within a few weeks, we were having dinner together. Then we started to go on hiking trips, first to the Catskills, then to the Adirondacks. Pretty soon we were talking about buying a Subaru Outback and visiting every national park in the country.
Somewhere over the Rockies, when the plane flew into turbulence, Stan turned to me and said, “You’re not clutching my arm.”
I looked up from my magazine and said matter-of-factly, “I know I’m going to die. So I’m not afraid anymore.”
“You’re not going to die,” he said. “The treatment is going to work.”
When the plane landed in Salt Lake, we picked up our rental car and drove five hours south through a pink and tan moonscape to Moab. We were staying in a hotel just outside Arches National Park. It was a brand-new Best Western, with big windows, a skylight and a storage room for bikes, something I’d never seen before in a hotel.
At breakfast the next morning, I noticed a couple of tables of people who were twenty years older than we were, but looked incredibly fit and youthful. They had on olive drab hiking clothes with zippers and pockets everywhere. Then there were the people who were twenty years younger, in black spandex bike shorts and colorful, clingy jerseys. The girls had shiny pony tails sticking out of their baseball caps. The boys wore wraparound, reflective sunglasses perched on their heads. We didn’t fit into either group.
At the breakfast bar I noticed a tall, plastic contraption with four narrow cylinders, each one for a different kind of cereal. When you turned a knob on the side, a single serving spilled out of a chute at the bottom and into your bowl. I had never seen anything like that before either.
“This place is amazing,” I said to Stan when I returned to our table. “From now on, we can only stay at Best Westerns.”
That day we hiked in Arches. Almost as soon as we left the parking lot, we were all alone on the trail, surrounded by fantastically shaped red rock formations that jutted up against a psychedelic blue sky. A little after noon, we stopped in the shade of a massive boulder and ate the peanut butter and jelly sandwiches we’d made at breakfast.
That night, after an early dinner, I dropped him off outside Arches so he could go stargazing in the park. Then I drove back to town for an AA meeting.
The previous year, my younger sister Rachel had gotten sober, and I thought everyone in the family should go to Al-Anon to support her, especially Ma, who just didn’t understand addiction. She thought that if you really wanted to quit drinking, you could. She had no use for 12-step or, for that matter, any kind of therapy. The idea of sitting in a grungy church basement with an aluminum coffee urn, store-bought sugar cookies and sad-sack people was just too much for her.
In Al-Anon, I learned that it didn’t matter what kind of meetings you went to, as long as they were 12-step. So, with an alcoholic friend, I started to go to an AA meeting in an Episcopal church on the Upper East Side. It was in a landmarked building, with soaring Gothic arches and stained-glass windows. The people in the room were tall, lanky, and looked like they’d either played varsity squash at Harvard or were retired CIA.
When I was in Pittsburgh to see Ma, I attended NA meetings at the First or the Fourth or the Sixth Presbyterian Church with a friend who was recovering from a prescription cough syrup addiction. Whenever we went, she liked to get dressed up in leather boots and dangling earrings. Most of the others in the room were youngish guys who came in ball caps and Steeler jerseys.
Finally, in the winter of 1999, I made my way to an OA meeting, where, at long last, I felt at home. It was held every Sunday morning in a dingy room beyond two locked doors in an Upper East Side psychiatric hospital. To get there, you had to walk past a gantlet of mental patients on the sidewalk, obsessively smoking cigarettes.
There were women – and it was mostly women then – who threw away food to keep from bingeing, then picked it out of the garbage, even if it was doused with Drano. Who got into cars in the middle of the night, leaving their children unattended, to buy food. Who wandered the streets on their lunch hour looking for public toilets to throw up in so they wouldn’t have to do it in the office bathroom. Who locked themselves in their apartments after work on Friday with shopping bags of food, then pulled down the blinds and didn’t come out until Monday morning. Who called their sponsors from events that most people think of as joyous – weddings, bar mitzvahs, and Thanksgiving dinners – because they were afraid that once they started eating, they wouldn’t be able to stop. Women who weighed and measured everything they ate. Whose tooth enamel rotted away from the stomach acid in their vomit, who were diagnosed with osteoporosis in their thirties, who wiped down sinks in public restrooms because the 12th Step said we should always try to be of service.
Over and over, people recited the same slogans: “One day at a time.” “Let go and let God.” “We’ll love you until you can learn to love yourself.” No matter how quasi-spiritual or corny they sounded, I discovered that they worked, even for atheists like me. They might not change things right away, I might go directly home and binge, but I knew that when I went back to the rooms, there’d always be someone there who had done the same or worse.
The meeting in Moab was nothing like the ones on the Upper East Side. Sitting on those folding chairs were five of the most serious alcoholics and drug addicts I’d ever seen, men and women chapped from the wind and weather, who had on ragged jeans, scuffed boots, and leather belts with chains, because that’s what you’d need to wear if you had to live outdoors. They all looked like they’d ridden Harleys until they got too messed up to ride anything.
“Hi, my name is Ann, and I’m an addict,” I said, too embarrassed in that crowd to call myself a compulsive overeater. “And I just found out I have hepatitis C.”
Everyone nodded. Unlike my family, they knew what it meant. It was less surprising than a New Yorker in expensive hiking clothes showing up in their midst.
To be honest, when the doctor called me at work, I hadn’t known what it was either. I didn’t even know where the liver was, let alone what it did. Later that day, when I called Ma to tell her the bad news, she figured out pretty quickly that it wasn’t good, even though she, too, knew nothing about it. “Oh, hon, I’d give you mine if I could, but it’s probably pickled in alcohol.” Then I called my older sister Janet.
“I’m sure it’ll be fine,” she gushed, trying to be reassuring. “Whatever it is, I bet I have it too.”
“I don’t think so,” I said. “This isn’t the kind you get from eating tacos.”
The doctor who diagnosed me referred me to a gastroenterologist whose Fifth Avenue office looked out on Central Park. The doctor told me I had a mortal illness, but if I started treatment right away, I had a fifty-fifty chance of being cured. In any case, he said, it was better to treat than not to treat. That way, you could knock back the virus a little.
I looked around his office at all the charts and plastic models of reddish-brown livers. “What if it doesn’t work?”
“It’s the gold standard,” he said calmly, tapping the sample box of meds on his desk.
“But I’m afraid it won’t work.” I could hear the panic rising in my voice.
“Don’t be.” He gestured toward the window over his shoulder. “You could go out there on Fifth Avenue and get hit by a bus.”
The day after Arches, Stan and I hiked in Canyonlands, a national park about a half an hour away with rock formations like dripping ice cream cones. In the late afternoon we stopped to rest on a dusty trail that wound along the side of a canyon. Hawks soared over the sandstone cliffs on the other side. A slender green river threaded its way along the bottom of the gorge, hundreds of feet below us. From where we were sitting, it didn’t even look like it was moving.
“I think we should get married,” I said.
“Why?” Stan had never seen the point of getting married, not when we started living together, and not now, when we were back together.
“Because when I die, I want you to have my money.”
“You’re not going to die,” he said. “I mean, not from this. And besides, you have to get better because we have to visit all the national parks.” It made no sense, but it made me feel better.
“You don’t want to get married?”
“Sure, I’ll get married if you want to,” he said mildly, “but the treatment is going to work.”
I got up and brushed the sand off my pants. “I’m glad that’s settled. Let’s go.”
“Just a minute,” he said. Then he reached into his backpack and pulled out his camera. The sun was behind us, casting long shadows over the burnt orange and sienna rocks.
“Look at the light!” he said with astonishment.
I was never quite sure what Stan meant when he talked about the light, but he talked about it all the time. I wanted him to explain it. “How is it? How’s the light?”
“It’s low and it’s warm.” He peered into the viewfinder, pointed the lens at our shadows, and snapped a picture of us on the rocks.
When we got back to New York, I took the image to CVS and made ten prints. If you knew who we were, you could tell it was us. My shadow was shorter, a little rounder. We were both wearing hats. His sat on the top of his head. Mine had a neck flap, which obscured the line of my shoulders.
After the pictures were printed, I stuck address labels on the reverse side, and that was our wedding announcement. We mailed them to the ten people who’d want to know.
Three weeks later, after taking a sick day at work for an unspecified procedure, I went to Mount Sinai for a liver biopsy. My boss sent flowers, but no one at the office knew what was the matter. I wasn’t about to tell a roomful of journalists that I had the disease of drug addicts and aging rock stars.
First of all, I was ashamed. The media was just starting to pick up on the “silent epidemic,” with cover stories about unsuspecting boomers, all successful professionals, married with children, who’d fooled around with IV drugs in college and found out twenty-five years later they were infected. My colleagues weren’t exactly sympathetic. I was on the desk when Pamela Lee Anderson revealed she had hepatitis C, and no one believed for a second that she got it from sharing a tattoo needle with Tommy Lee. And when David Crosby had announced that he needed a new liver, people just made jokes. It was the price you paid for a skanky lifestyle.
The man beside me in the recovery room didn’t seem to care. He was in advertising.
“Weren’t you mortified when you found out?” I said, glancing over at his bed. His eyes were glued to the TV set on the wall.
“Nah.” He turned to face me as well as he could since we weren’t supposed to move our abdomens. “That was party time, man. Sex, drugs and rock ’n’ roll.”
“The treatment sounds scary,” I said, “and the odds are terrible.”
“Que sera, sera.” Then he went back to watching TV.
Over the next two years and three months, I met other people like the ad man, who had no regrets about their drug-using days. A woman in a support group at Mount Sinai told me that the two years she spent shooting heroin were the best years of her life. But she knew it couldn’t last, so she quit. By the time the meds worked for her, after seven unsuccessful tries, she had a fabulous house in the country, a couple of grandkids, and a cirrhotic liver. Luckily, the liver is the only organ in the body that regenerates, which the Greeks must have known when they invented the story of Prometheus. His was devoured every day by an eagle, only to grow back at night.
I had regrets from the very beginning. I didn’t like the drug. I didn’t like the people I did it with. The fact that I did it at all was the end result of a series of bad decisions that began my sophomore year of college. First, getting involved with a guy who’d moved to Northampton specifically for the purpose of taking advantage of rich, naïve college girls. Unfortunately, I didn’t know that the night that I met him in a jazz bar off campus with exposed brick and track lighting. I was just impressed that he liked Gil Scott-Heron. The second stupid decision was getting involved with an even shadier character in order to get rid of the first one. The first guy was a shoplifter who aspired to be a gigolo. The second guy was a burglar and a junkie, who broke into houses and stole TVs to support his habit. He was the one who introduced me to heroin, which I ultimately started using because it seemed unsociable not to. Some of his junkie friends were actually pretty nice. It took me a year or so to realize that I was in way over my head, and another twenty-five years to find out I was infected with the virus.
I often wondered what my older brother Howard would have said if he’d been alive when I found out. Yes, he’d keeled over from a massive heart attack at age forty. But I had the strong suspicion that he never used a needle, and never would have used a needle. He had enough money to keep himself well-supplied with oral pharmaceuticals. Also, he was too impatient to bother with belts, spoons, lighters, glassine envelopes, and syringes. But most of all, unlike me, no one ever told him what to do. He called the shots in any group of people, whether they were his street friends or Ma’s friends. There was just no way that some semi-literate, small-time hustler and wannabe pimp was ever gonna get him to stick a spike in his veins.
That summer was eventful. Stan and I bought an apartment. In late June I started taking interferon and ribavirin. The gastroenterologist’s nurse showed me how to inject myself in the fatty parts of my body: first the belly, then the front of the thighs, then, when you ran out of room, the backs of the thighs and the butt. She demonstrated on an orange. Then she sent me home with the kit.
In late July, Stan and I got married. The wedding was at City Hall on a Friday afternoon, two days before the end of the Tour de France. That was the year that Marco Pantani beat Lance on Mont Ventoux, and my younger brother Robert was so delirious with joy that Stan and I became fans of the Tour too.
I had bloodwork after two weeks and again after six. Then my hemoglobin started to drop. If it fell below ten, I was getting into dangerous territory. If it fell below nine, I’d have to go off the drugs. So, the gastroenterologist referred me to a hematologist to keep up my red blood cell count.
The hematologist was a big, shaggy man with an exuberant personality, and a strong supporter of Israel. He’d burst into the examining room, his white coat flapping around his thighs, and after a few minutes of schmoozing, launch into a tirade about how the Palestinians didn’t really want peace. I didn’t agree, but I didn’t argue with him either. I would have sat on his examining table and listened to him rant about the PLO forever, as long as he kept my hemoglobin above ten.
Over the 48 weeks of treatment, I became obsessed with my bloodwork and mastered all the lingo. There was the PCR, or polymerase chain reaction test that detected the presence of the virus. The SVR, or sustained viral response, which you wanted after treatment. But it was the tests that measured liver function – the GGT (gamma-glutamyl transferase), AST (aspartate aminotransferase) and, most important, ALT (alanine aminotransferase) – that preoccupied me most. As long as they were good, I was happy.
Over the course of that year I also learned a lot about the gastroenterologist. He had a house in the country. He collected antiques. And when he was in the military, he was stationed at an Army base in the South, where he performed autopsies on beagles. He said he’d never seen such magnificent livers: bright red, pristine, engorged with blood. I told Stan when I got home.
“When the treatment is over,” he said gaily, “you will have the liver of a beagle!”
At twelve months, the virus was undetectable. But six months later, it was back. In the meantime, my thyroid was destroyed. The gastroenterologist referred me to an endocrinologist to fix the thyroid and then to a second gastroenterologist, who worked with hard-core cases. He called him a cowboy, but said he got results.
So, in the spring of 2002, after being treated for a hyperactive thyroid, I started a second round of treatment, this time with a better kind of interferon. By then, it was possible to self-inject with EPO, the drug I needed for my hemoglobin, so I no longer had to see the hematologist. But I missed him. He was quirky and fun to talk to, like all of my doctors. Stan and Robert called them “the team.” They’d gone to the best medical schools, had interesting and expensive hobbies, and loved to make snarky remarks about other doctors and hospitals, especially Sloan Kettering. One of them used to complain that he couldn’t listen to Eric Clapton anymore after Clapton’s four-year-old son fell out of a window and died, as though Clapton had somehow done something bad to him.
The cowboy gastroenterologist kept me on the meds for a year and three months, and this time, they really worked. He told me to celebrate with a bottle of champagne, but the celebration didn’t last long. Nine months later, he found a big, honking tumor in my stomach.