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CHAPTER 2

INTO THE FOG

THE SECOND TIME I visited Dr. Radev, the first thing I said to her was, “So I’ve got hemochromatosis?”

“No, it looks like something else,” she said. “You need another test.”

I was relieved that I might not to have to give blood frequently for the rest of my life, so I marched over to the lab without hesitation. I submitted another requisition to the medical assistant, lay on the cot, took a deep breath, clamped my eyes shut, and spread out my arm. The blood test was over in a literal pinch.

The idea that I might have “something else” sparked questions in my mind, but they fizzled away as I made plans for a vacation with Al in Mexico. Whatever the diagnosis was, it couldn’t be too bad. I had always been healthy.

A week later I got another call from my doctor, asking me to come into the office. I thought she probably wanted to tell me about a minor problem the test had found, or maybe she just wanted to say I was 100 percent healthy. The worst I expected to hear was that I had a vitamin deficiency or high cholesterol. Instead, Dr. Radev said, “You have antibodies to hepatitis C.”

“What?”

“Hepatitis C,” she said. “It’s a disease that affects the liver.”

I had heard about hepatitis C on the radio. I remembered listening to a documentary about a lawsuit over blood products that were infected with the virus, but other than that, I knew little about it.

“How could I have that?” I asked.

“You must have come into contact with it somehow. It’s transmitted through blood,” Dr. Radev said. Someone else’s blood that carried the virus must have mixed with mine, she explained. She said that hep C could linger in the body for decades without showing symptoms. The virus might eventually scar the liver to the point that it would stop functioning. The result would be liver cancer or the need for a liver transplant.

“What?”

“Don’t worry,” she said in her soothing Philippine-accented voice. “About 20 percent of people who contract hepatitis C come down only with the acute form of the virus. It goes away on its own. People who just get acute hepatitis C may turn yellow or feel run-down for a few days or weeks, but their bodies fight off the infection. After that they no longer have the disease. They continue to produce antibodies for the rest of their life.”

Dr. Radev asked if I had ever injected drugs. “No,” I said.

She asked if I’d ever had surgery. “No,” I said, “except for tonsils.” She seemed puzzled (perhaps because tonsillectomies seldom require blood transfusions). She said that in rare instances hepatitis C can be transmitted through sex. I recalled that Jessica’s father had once become jaundiced. Maybe Peter had contracted hepatitis C during his frequent flings and had passed the infection to me. “Jessica’s father may have had hepatitis,” I told Dr. Radev. “Maybe I got it from him.”

But I had never become jaundiced, and I was a lot healthier than he had been. He got little exercise and was careless about his diet. I did lots of yoga and never ate junk food. Even if I had contracted the disease from him, I was sure I was among the 20 percent able to shake it off.

ACCORDING TO JULY 2016 figures from the World Health Organization, hepatitis C infects up to 150 million people worldwide and causes an estimated 700,000 deaths each year.¹ Between the United States and Canada, close to 3 million people are infected with hepatitis C. In 2015 Public Health England reported 214,000 cases in the UK, while Australia reported 230,500.

Despite these huge numbers, most people infected with hepatitis C don’t know they have it. Many of them don’t even remember they had any possible contact with the pathogen in their youth (the prime time to contract hep C) or suspect they might possibly carry the disease. I didn’t, not even when my doctor said I had the antibodies.

Hepatitis has plagued humanity for thousands of years. The word hepatitis comes from a combination of the ancient Greek word hepar, meaning “liver,” and the Latin word itis, meaning “inflammation.” An epidemic of hepatitis was reported in China about five thousand years ago, and later an outbreak occurred in ancient Babylon. The Babylonians wrote of an illness that caused yellowing, fever, fatigue, and stomach problems. In Greece, in the first century BC, Hippocrates referred to a disease that yellowed the skin. The Hippocratic Corpus, a library of ancient Greek medical writings by many authors, described hepatitis at least seven times and predicted the outcomes of the disease according to a person’s degree of yellowness. In the second century AD, the Greek physician Aretaeus of Cappadocia studied the symptoms of hepatitis and wrote that the illness weakened “the liver’s power of nutrition.” Only recently has the yellowing disease been called hepatitis and been given alphabetical designations. In early 1969, when Peter’s face turned yellow, the hepatitis alphabet had stalled at B. While I lay unconscious, waiting for a transfusion in 1971, the medical system had yet to screen donated blood for hepatitis C. Scientists didn’t differentiate it from hep A or B until 1975.

Since that time, medical scientists have identified a string of viral diseases that attack the liver. The hepatitis alphabet now goes up to G. Each is a distinctive disease caused by a different pathogen:

•Hepatitis A: This is transmitted through food or water that is contaminated with feces. It’s common in children. It is usually a mild disease and can be prevented by a vaccine.

•Hepatitis B: Like hepatitis C, it is transmitted through blood. It can also be spread through sex with an infected partner. Only 5 percent of cases become chronic. There is a vaccine for hepatitis B but no cure for the chronic illness.

•Hepatitis C: HCV is passed along through blood-to-blood contact. As Dr. Radev told me, about 20 percent of those who are infected experience only acute hepatitis C. These lucky people clear the infection with no treatment, but though they develop antibodies, they can get reinfected. Another 80 percent of infected people develop the chronic form of the illness. Their infection continues until they die or are cured.

•Hepatitis D: This is a coinfection that occurs with hepatitis B. It causes severe liver disease.

•Hepatitis E: A common disease in India and many other developing countries, hepatitis E is transmitted through feces-contaminated food and water. It worsens any type of liver disease and may cause liver failure.

•Hepatitis F: This rare virus was found in 1994 in patients in Western Europe and India who had undergone blood transfusions. The virus was injected into rhesus monkeys and caused hepatitis. However, later studies suggested it was a mutation of the hepatitis B virus, and not all researchers recognize it as a distinct disease.

•Hepatitis G: This is transmitted through blood but isn’t known to do harm to the human liver. The infection, which produces antibodies, is usually cleared within two years. One of the few studies on this virus showed that it can infect marmoset monkeys, which may suffer liver damage.

A healthy liver is mushy like a jellyfish. In reaction to the hepatitis virus, fibrosis ruffles through the liver, forming branches of scar tissue. In a healthy liver cell, DNA in the nucleus sends out RNA. The RNA tells the cell how to turn specific amino acids into healthy protein. But when the hep C virus invades the liver, it forces liver cells to make copies of itself instead. The virus reproduces incredibly fast, producing ten to the twelfth power (one million million) copies of itself each day.

The normal liver weighs just over two pounds and is the body’s main blood-processing plant. It filters blood, removing harmful substances, such as alcohol. It also manufactures proteins that defend against infection and help the blood to clot; regulates the supply of vitamins, minerals, and hormones, including sex hormones; and produces, stores, and regulates glucose and fat. It makes and eliminates cholesterol and also converts it into lipoproteins that deliver energy to the cells. Altogether, the liver performs more than five hundred bodily functions. It continues to do these jobs during the early stages of fibrosis, but later, when the liver hardens into cirrhosis, it progressively loses important abilities.

WHEN DR. RADEV told me I carried hep C antibodies, I was so certain I had avoided the chronic form of the disease that even possible symptoms didn’t worry me. I felt I was healthy compared with friends who were aging in lockstep with me. I believed my joint problems came from a car accident many years before. I believed my acid reflux came from doing too much yoga, which I thought had pulled my esophagus out of place. I thought my muddy mind came from lack of sleep caused by the joint pain and from overwork, which retirement would cure. These were all mechanical lifestyle problems. A nasty virus could never get me, I believed.

Dr. Radev said an acute case of hepatitis C might seem like the flu. I recalled that about a year after I had noted Peter’s yellowness, we both came down with an awful flu.

Was it really the flu? Maybe it was hep, I thought as I left Dr. Radev’s office. Peter and I had both probably experienced the acute form of hep, I reasoned, and our flu-like symptoms were its manifestation. Now I was safe from the hep C virus forever. In fact, I was so confident I was healthy that the next week I submitted a formal letter to my employer. I’d be resigning from work as a teacher—and from a gold-plated medical plan that most people with hepatitis C would envy. I planned to celebrate my coming retirement with a vacation.

It was the end of the spring 2014 semester. I had been having trouble with my jobs, one at a university and the other at a college, so I had taken a partial leave. Together, the jobs involved teaching four courses to a total of ninety-plus students. I had been finding it hard to switch my mind from one topic to the next and from one student to the next. That had been easy in the past, but now it seemed inordinately complex and stressful. I was experiencing severe arm and shoulder pain at night. I thought the pain caused my sleeplessness, which in turn impaired my ability to multitask. The problem went beyond teaching and into my home life. The last couple of years before I knew I had hep C, I had begun to feel edgy any time I had to tackle more than one activity at a time. When my cell phone chimed while I was paying bills online, tremors would climb into my shoulders. One day I was putting socks on my dog, Zeena, to protect her chronic sore feet, and my husband asked about ferry times. Thinking about two tasks together made me jumpy. I scowled at Zeena and tried to hide my irritation from Al. Zeena loved the comfort of socks, but she must have sensed that something was wrong. She struggled to get away from me, twisting and yelping. Al glanced over and said, “Go easy on her.” Later I was sorting laundry and he asked for the car keys. I shouted, “Not now!” Similar scenes occurred again and again.

The most irritating task was cooking. Chefs, homemakers, and occasional cooks should know that preparing a balanced, several-course meal and serving everything on time, warm but not charred, can be one of the most complex multitasking exercises in the universe. I had always enjoyed cooking healthful, many-course meals. But with hepatitis C swimming though my system, inflaming my organs, and sending crazy messages to my glands, something went awry. One day a couple of friends came by and I volunteered to make dinner. I decided to prepare chicken with mushroom sauce, broccoli, and a salad. I had to time the chicken in the oven, stir and watch the sauce, cut and steam the broccoli, slice and dice veggies for salad, press a couple of garlic cloves, mix an oil and vinegar salad dressing, and toss the salad. Making sure each dish appeared at the same time on the table was too much for me. I grumbled at Al as he watched me chopping tomatoes at the cutting board. Our friends were outside on the deck, and I was glad they couldn’t see me as I bashed my elbow into the salad dressing, which splattered all over the counter.

In the meantime, the sauce for the chicken was burning. I lunged at the stove to turn down the heat and barked at Al, waking a snoozing Zeena, who looked at me as if I were a strange, threatening animal. Al wisely left the kitchen. As I checked the sauce again, I burned my palm and spilled half of the lumpy liquid on the floor. The guests were now chatting twenty feet away in the living room. Fortunately, they didn’t notice the gooey spoon I hurled at the floor and my muffled cry of “Crap!”

While I could hide most of my edginess at home, I had a hard time concealing it from students. One of the joys of teaching had been getting to know them personally. I had discovered early in my career that once I knew a bit about individual students, I would like them, which would motivate me toward better teaching. During the first class, I would ask students about their hobbies, part-time jobs, travels, and ambitions. As they took turns introducing themselves, I would memorize their names and distinctive qualities.

In the past I had learned two-thirds of my students’ names as they chatted on that first day of class, and I’d learn the other third within a week or two. But during the two years before my diagnosis, it seemed there were far too many names to learn at once. I become increasingly unable to remember who was Jean and who was James. I couldn’t recall which student bred labradoodles, which one worked as a house painter, and which in which class came from Thailand. By the middle of the semester, the year before I learned I had hep, I could recall only five or six names out of the ninety-four students I taught. It was maddening.

The semester before my diagnosis, I decided to give up on the memory work. Why try to remember names when you know you’ll forget them in an instant? It got to the point that when a student raised a hand, I’d just nod. It wasn’t a great way to establish rapport. I started drawing little pictures of my students’ faces on index cards. I added arrows to facial features and labeled them “honey-brown hair” or “squinty eyes” and made notes such as “born Thailand, high school England, trekked through Italy with her dad.” That helped somewhat, but it was hard to riffle through a stack of cards when a student or two raised their hands.

I knew I didn’t have Alzheimer’s because my grandmother, who was stricken with the illness, experienced different memory problems. Her memory lapses had been like sudden gaping holes that filled themselves with confusion and hurled her backward into earlier times. I remember visiting my parents’ home in Manhasset, a chichi suburb of New York City. I had just reconnected with my parents after avoiding them for almost a decade. My grandmother, in her late seventies, had moved in with them so they could help her through her dementia. In her lucid moments she was a jolly white-haired lady, but those moments could dissipate fast. Once she took me to her room and pulled a shoe box from under her bed. “I’ve got some nice ribbons for you. You can wear them in your hair,” she said, yanking a tangle of ribbons from the box.

“Thank you,” I said, unraveling a length of inch-wide blue satin. “This one’s nice.”

She grabbed it from me. The kindness in her face evaporated and fury replaced it. “You’ve been stealing from me! Give that back,” she wailed. Later that day she dressed in her finest blouse, hat, and gloves, and she slipped out the door. My mother found her wandering along a sidewalk a few blocks away in a neighborhood of sprawling single-family homes, muttering, “I’m looking to rent an apartment. Where is the apartment building?”

No, I didn’t have Alzheimer’s. I was just getting to be an absent-minded professor, I decided. But I didn’t like the situation, so I would move on. I started planning my retirement from teaching. Later, after hearing I had hep, I realized my teaching problems had come from brain fog, a common complaint of people with hepatitis C—and one that usually vanishes after treatment.

IN SPRING 2014, I wanted to get far away from work so that I could put my head back together, so to speak. Flights to Cancun were cheap from Vancouver, and the eastern strip of the Yucatán Peninsula seemed to be just the place to go for R&R. I still thought my cloudy thinking came solely from pain-caused sleep deprivation. I had been getting less than three hours’ sleep a night, not enough to enter deep, slow-wave sleep, without which the memory suffers. I imagined that having nothing to do under a hot Mexican sun would lull me into prolonged slumber. I would enjoy a mindless vacation and regain my mind. I knew nothing yet about brain fog and little about hepatitis C, and I was certain that other than having an unrelenting case of fatigue, I was as healthy as a puppy. So I booked the flights and a stay at a resort near Akumal, Mexico.

The resort curled through lush, tropical forest along a white-sand lagoon on the Yucatán Peninsula about halfway between Playa del Carmen and the Mayan ruins at Tulum, with swimming pools, pyramid-shaped residences, restaurants, tiki bars, poolside bars, and beach bars. Part of the relaxation I sought was the sleep inducement of free-flowing liquor, which was included in the resort fee.

We arrived around midnight at the Cancun Airport. The cab that picked us up drove sluggishly along the Mayan Riviera highway and crawled slower than a snail through a Federales roadblock along the route. Finally, the cab turned into the resort’s winding entry road, which was shrouded with palm trees lit from below by spotlights. We shuffled up the grand staircase and past a wall of blue glass into the lobby. The desk clerk said we had missed the dinner buffet, so we strolled into a bar in the main building. A band played contemporary rock. About a hundred people milled about. A few were dancing, but most were drinking. The bar reached along one of the walls, where eight bartenders poured every color of alcohol, ceaselessly. I slid onto a stool and asked for a drink. It was the first of quarts of margaritas I downed at the resort. For someone like me who tends to avoid in-pool volleyball games and goofy poolside contests designed for kids, there wasn’t much to do. So I did what most visitors did most of the time at the resort: eat, swim, and drink. I must have drunk at least forty alcoholic beverages during our five-day visit.

When we arrived back home, I left my bags scattered on the living-room floor and walked out onto the deck that runs the length of our home. The phone rang, but I didn’t bother to go inside to pick it up.

Four days later I dialed my voice mail, and a message asked me to call Dr. Radev’s office. After a blurry week on the Riviera Maya, the threat of having hep antibodies had slipped my mind. I figured that since Dr. Radev was new as my doctor, her office probably wanted information about me they had yet to collect. I waited another few days before I called back. Exactly one week after the end of my vacation, I poured a morning mug of coffee and dialed the doctor’s number. “You called last week?” I asked.

“Doctor Radev wants you to come in,” a pleasant voice said.

“How about two weeks from today?”

“We can take you much sooner,” the medical receptionist said.

“When?”

“Today?”

“No. I can’t make it.” I sipped some coffee.

“Could you be here Friday morning or early afternoon?”

“How about Monday?”

“There’s an opening first thing in the morning. How about 8:45?”

“Sure,” I said. I was pleased that Dr. Radev’s schedule had so many open times, when I was used to having to book two weeks ahead for a doctor’s appointment. The spacious waiting room had been buzzing with patients the last time I was there. A lot of her patients must already have left for summer vacations, I thought.

I was wrong. I learned that Dr. Radev wanted me to come in as soon as possible because my situation was pressing. At 8:45 a.m. Monday, May 12, I sat in her examining room. Dr. Radev took a long breath, lowered her voice, and said, “You have hepatitis C.”

1964–1967

GROUPIE

DURING THE DECADES between the razor cuts and my father’s death, I avoided not only bloodletting but my father as well. In high school my strategy for this was to become a groupie. The pastime required a lengthy bus and subway trip that kept me away from home the maximum amount of time my parents would allow. On most days after school I would travel from Queens into Manhattan with a few other girls. We would gather in front of a midtown hotel and wait for Herman’s Hermits or the Moody Blues to show up. Then we would try to sneak into the hotel. A pack of doormen usually kept us out.

One night, returning from a round of rock-star stalking, three friends and I jumped onto a subway car. The theaters had just got out, so it was hard to find a seat. My friends reached for straps that hung from the ceiling. I was too short to grasp the swaying loops, so I edged through clumps of passengers to the floor-to-ceiling pole between the exit doors. A tall young blond guy clung to the same pole as me. As the train chugged and lurched, my head bumped his shoulder. He looked like Richard Chamberlain, my favorite actor, who starred in the TV series Dr. Kildare. We started talking. Kevin told me he was a musician. When the train stopped at his station in Jackson Heights, I raced out the door with him. My groupie friends looked on, dismayed. Kevin gave me a tour of his neighborhood that night, and within a few weeks we were going steady.

Because I had skipped third grade, I graduated from high school at age sixteen. I found a job as a file clerk for the head office of the Allegheny Ludlum Steel Company on Park Avenue. I was soon promoted to switchboard operator and then teletype operator. After work, sometimes I’d meet my friends in the East Village, where hippies would give us flowers or offer us a joint. While roaming through the area one day, I saw a For Rent sign on the window of a ground-level apartment. I rang the superintendent’s bell, and a scraggly-haired woman in coveralls stumbled out. When I asked her if I could rent the place, she gazed at my work attire and nodded. I exchanged that week’s pay envelope for a set of keys.

Back in Flushing, confronting my parents in the living room, I said, “I’ve got my own apartment. I need the thousand dollars you owe me.” They had held the money in trust from a settlement I had received after having been thrown to the floor in a car accident as a child.

“What? Not on your life,” my father said, making squishing sounds on the plastic-covered sofa where he sat.

“You’re too young to be on your own,” my mother said, also making squishing sounds.

“You told me you wanted me to leave when I graduated. I’m doing exactly what you asked.”

“You’re not getting the money,” my father said. He limped around the coffee table, scowling at me.

“It’s my money.” I backed away from him.

“Not on your life, you little slut,” my father said.

That inspired me. I said, “I need money to buy furniture. I guess I’ll have to stand on a street corner and earn it the way the sluts do.”

My parents gave me the money. In mid-October 1966, two weeks after my seventeenth birthday, I moved into the bachelor suite on East 6th Street. I decorated it with a thousand dollars’ worth of furniture. In those days a thousand dollars went far. I bought a table, chairs, dressers, and a convertible sofa to sleep on, and I splurged on a spiffy, curved-front TV, a hi-fi, and even a reel-to-reel tape recorder. I hung hand-printed Indian tapestries on the walls. Kevin came by to help me get organized. Being a newly independent hormone-filled teen, I invited him to spend the night. We fumbled at our early attempts at sex, but my hormones were happy and Kevin didn’t want to leave. I said I had planned to live alone, but he objected. I had been morphing from a miniskirted groupie into a Village-style hippie who wore waist-length hair and tie-dyed shirts. After a few more fumblings with Kevin, I figured I might as well do as the hippies did. Cohabitation was becoming the norm. “I guess we’re living together,” I said, but that didn’t mean we’d have a sexual free-for-all.

Kevin grew up in a Roman Catholic family. He spent time as an altar boy and often listened to priests who railed that sex was for procreation only. He was eighteen when he moved in with me, and the missionary position was his only position.

My parents cooled down and I visited them for Christmas. In January they came to see my apartment. Kevin answered the door. My mother’s face paled and my father’s grew stern. They left without speaking to me. To my surprise, within weeks they were planning a wedding. Kevin and I were relieved. A priest in my Catholic high school had recommended the rhythm method of birth control. Kevin and I had practiced it, but it didn’t work. I had always wanted to be a mom, so I was happy.

Kevin—at first—fulfilled my parents’ key requirement for a husband: he had an income. His band, the Inner Sanctum, was appearing in the musical The Golden Screw at the Provincetown Playhouse in Greenwich Village and getting union rates as actors. We got married within a month at the famed celebrity hangout Sardi’s and had a write-up in Variety. Around that time, I hit the iron ceiling at the steel company. Only men could be promoted to the sales desk. Thinking The Golden Screw was truly golden, I quit my job. But the off-Broadway musical closed a week after the wedding. Kevin was now an unemployed rock musician with a pregnant wife. We could barely afford the $87 a month rent on our East Village bachelor suite or the $15 a week it took to buy groceries. Kevin said he would sell his blood and contended that I should become a paid donor too.

“I can’t do that,” I said, patting my soon-to-grow tummy. I was seventeen and pregnant. I was relieved to have an excuse.

IN THE 1960s in New York City, people who sold a pint of their blood would receive between $5 and $200, depending on blood type. Kevin discovered he could get $50. Soon, though, he found a job as a shipping clerk with Sun and Health magazine. He spent his work days wrapping and mailing magazines. He brought stacks of them home, where we gawked together at photos of nudists playing volleyball and basking on the sand, wearing nothing but sun hats and sandals. Kevin also began bringing home a paycheck and didn’t have to get his blood siphoned for money.

It might have been good if he had, though. As far as I know he didn’t have hepatitis, and his blood might have saved someone from getting it. Dr. Harvey Alter, from the National Institutes of Health in the United States, explained in a BioCentury TV webcast in 2014 that in those days people who received blood from volunteers rather than paid donors had only a 7 percent chance of contracting hepatitis. Even a 7 percent chance of getting hep would be scary, but it was a lot better at the time than the 30 percent rate for all blood transfusions.

While Kevin worked at Sun and Health, I found a job as a page at MGM Records, where I traipsed from room to room delivering documents. I remember watching Petula Clark stroll down a hallway and seeing Frank Zappa and other kooky rock stars cavort in the employee cafeteria. I loved the job, but in those days, women could be fired for being pregnant. It was the time of loose-fitting sack dresses, so I took to wearing extreme examples of the fashion. Nonetheless, co-workers began to stare at me.

I told Kevin I’d have to quit my job. His job hardly paid our rent, and he again suggested he’d donate blood. Just in time, his agent got the Inner Sanctum a gig opening for the Velvet Underground. Once again there would be no blood selling.

A lot of other people were selling their blood, however. There were countless thousands of paid donors in the sixties, many of them prisoners and those who needed cash to support drug habits. Their blood would kill many future transfusion recipients, whose livers would fail because the donors’ blood carried hepatitis C.

I gave birth to Della two days before my eighteenth birthday. Six weeks later, my doctor suggested I go on birth control pills. That was the first time I had heard about them. I went to the Planned Parenthood clinic and fainted while the nurse was drawing blood.