in Superman comics where outlaws from Krypton are banished and serve their sentences as insubstantial beings. They can observe our universe but are invisible to anyone in it. Drawings of the Phantom Zone often depict its inmates howling for mercy with their eyes bulging in fear. As the diagnosis shrouded my consciousness, I must have looked like the most tortured criminal from Krypton.
“What?” I asked. “I thought I only had antibodies.”
Dr. Radev said when someone contracts hepatitis C, the immune system produces antibodies that specifically attack the virus. The blood continues to make them, regardless of whether the person kicks the disease. “I’ll send you to an excellent specialist,” she said. “He does clinical trials, and he knows all about the latest treatments. There are some new, very effective drugs being developed.”
“Oh, good,” I mumbled.
“The new treatments can be very expensive,” she said.
“Expensive” made me think the drugs might cost $10,000. I soon learned that the newest treatment cost well over $100,000—one thousand percent of my guesstimate (that was in 2014). That would kill my travel budget for fifteen years. I was sure my extended medical plan covered prescription drugs, but I would soon be leaving my job and the plan. It was too late to take back my resignation. I’d have to move quickly toward whatever treatment I needed. “When can I see the specialist?” was my number one question.
Dr. Radev said she would send him a note explaining that I needed quick treatment. If my insurance wouldn’t cover it, she said, I might be able to get into a clinical trial.
I had recently read the novel The Normals by David Gilbert. In it, an unemployed recent Harvard grad signs up for a paid drug trial. He lives for many weeks at a drug-company campus. The book describes a prison-like setting with oddball participants, uncaring nurses, and appalling side effects. The plot was meant to be funny, but it scared the bejesus out of me. Why would I want to get into a clinical trial? I could wind up with a placebo, I thought, and never get rid of my disease. I’d later learn that placebos were seldom involved in hep C drug studies. Instead, the trials tend to compare different treatments in terms of cure rates and side effects. But in Dr. Radev’s office the suggestion of a clinical trial made me squirm. I didn’t even think of asking the specialist’s name.
“He will need to know your genotype first,” Dr. Radev said.
The genotype test is a blood test. I winced at the thought of it, but I was afraid to waste a second while the virus was building demon roads through my liver. I raced out of the clinic and ran across the parking lot to the lab.
In the two weeks between the time I heard I had hep and the time I learned my genotype, I talked with my closest family about my illness. My husband, my two daughters, and my two sons-in-law were ultra-nice and ultra-concerned. My grandchildren, a preteen girl and a teenage boy, heard about the hep as they listened to family conversations, and they were ultra-nice too. Everyone got tested for hepatitis C. Despite family habits that included occasional toothbrush sharing with my husband, I was the only one infected.
Sharing household items that come in contact with hep-tainted blood is on the list of possible means of transmission. In a study published in 2006, a team of eight researchers from the University of Regensburg in Germany found that twelve out of thirty patients who had hep showed small amounts of HCV-RNA in their toothbrush-rinsing water. The study concluded that there is a “theoretical risk of infection by sharing these objects.”1 Another study, from Spain, published in the journal Oral Diseases, noted that specific receptors for the virus have not been found in the mouth and HCV particles in saliva are not very infectious. The German team summed it up:
The mere finding of HCV-RNA on the surface of contaminated tools does not prove potential transmission of the virus by these tools, of course, and the low infection risk usually published for household contacts of hepatitis C patients provides good evidence against a significant role of transmission by household objects.2
Still, when I was diagnosed, I did what I could to discourage borrowing. I get lots of guests in the summer. One of them might have a toothbrush that looks like mine. I moved my toothbrush to a cabinet where a guest couldn’t find it and left new, packaged toothbrushes on the bathroom counter for anyone to use.
When I talked with other people who had hep, I learned they took a similar approach. John Lavette, a retired flower merchant, came down with hep C while living the hippie life in Haight-Ashbury. Hippies tended to share everything, but when John learned he had hepatitis C, he became strictly personal with his toiletries. “When someone asks to borrow my toothbrush, I tell people, ‘Use your finger, dude. You’re not putting my toothbrush in your mouth,’” he said. “A friend recently asked me, ‘When you shave with a razor, something like a Bic, do you throw it out?’ I said, ‘I’ve thrown them out for the last ten years.’”
Andrew Loog Oldham, manager of the Rolling Stones from 1963 to 1967, is also scrupulous about not sharing anything that has even a tiny chance of picking up blood. His list of items is longer than John’s and includes cocaine straws. In the sixties, lines of cocaine were often laid out on tables at rock stars’ parties for guests like Andrew to snort.
He and I sat across from each other drinking chai on the patio of Terra Breads in Vancouver’s Olympic Village. Andrew had just come back from Pilates and Rolfing and was wearing a black T-shirt with a gold herringbone pattern across the front. Wispy white hair accentuated the narrowness of his face. His hazel eyes were framed by pouches on the bottom and thin eyebrows that arched so close to his eyes, I couldn’t see the lids. His shoulders were square and erect. He appeared to be in great physical shape for a seventy-year-old man, especially one with hepatitis C.
He must have been cool and handsome when he managed the rhythm and blues band, I mused. I thought back to a summer day when I was fourteen, when I milled among a crowd of sixty groupies in front of the Hotel Century on 47th Street near Times Square. The Rolling Stones’ limousine rolled out of a parking garage and stopped, waiting to make a turn. A horde of screaming teenagers rushed the car. They pressed against its shaded windows, trying to glimpse their idols. I lurched closest to the back of the limo. The other girls pushed forward. They bashed me into the bumper and pushed me atop the trunk. More than ten other girls piled on top of me, smacking my face against the rear window of the car. Brian Jones sat in the back seat. He scowled at me. He rapped his fist against the inside of the window right at my face. He pummeled the window again and again. His silky blond hair swayed as he pounded at me through the glass. The window vibrated. The car began to move. Gradually it moved faster. Gradually the other girls fell away. Last, I slipped off the back of the car. I was shaking and breathing hard. I had thought I might be run over, but only my knees were bruised from hitting the pavement.
I thought Andrew would have been in the limo with the Stones that day and couldn’t have missed the incident. I asked him whether he had seen me getting bumped about against the window.
“Well, I don’t know,” Andrew said. He had traveled the world with the Stones and had encountered countless mobs of groupies. He was partying a lot in those days, he said, and many scenes had become a blur to him.
In the heyday of rock ’n’ roll he hobnobbed not only with the Rolling Stones but also with many other rock stars whose music he had promoted or produced. His label, Immediate Records, produced music by Eric Clapton, John Mayall, Small Faces, Fleetwood Mac, Rod Stewart, and Nico, whom I had hung out with at the Scene nightclub in New York when my first husband’s band opened for hers (and Lou Reed’s), the Velvet Underground. I’d had a taste of the rock ’n’ roll party life, but Andrew Loog Oldham had consumed the full meal, imbibing, snorting, and injecting all sorts of drugs, including heroin and cocaine.
Eventually
