No Apparent Distress

by Rachel Pearson

  There was also a type of patient whom Dr. Houston didn’t let me touch: his Botox patients. Botox is a commercial form of botulism toxin that is used to paralyze muscles. In patients with torticollis—a painful forced twisting of the neck—Botox can be used to relax the neck. It’s also sometimes used in the esophagus to relax a chronically tight muscle. And, famously, it’s used to reduce wrinkles on people’s faces. Dr. Houston’s patients were using it for the latter.

  When a Botox patient came in, Dr. Houston would transform from a serious-faced doctor into a chatterbox, animatedly discussing the pros and cons of paralyzing various facial muscles. One patient insisted that he wanted his forehead so paralyzed that his eyebrows would be totally immobile. Another lamented that she couldn’t make it to the Botox party this month—after-hours gatherings in the clinic where Dr. Houston would serve wine and multiple patients would come together to have their facial muscles chemically paralyzed.

  When these patients would come in, I would just stand in the back and watch as Dr. Houston inserted the tiny needles into their skin. It was strange—I’d been allowed to do so many more invasive procedures, so why not Botox? It was a pure luxury transaction: patients paid to have a professional—a doctor—manage their beauty. There was no place for a student in this transaction.

  THE EXCESSES OF LUXURY CARE I saw in Dr. Houston’s office seemed mostly benign, but they made me think. Excess was not always benign, as I knew from my mother’s story.

  In 2000, when she was forty-six, my mother donated blood at the high school where she worked as a biology teacher. A few weeks later, she got a letter in the mail that said, on the top, “THIS IS NOT A LETTER TELLING YOU THAT YOU HAVE HIV.”

  Why would they write that? my mother thought, and her blood ran cold.

  The letter said that her blood had tested positive for something called “non-A, non-B hepatitis,” and that she should see a doctor. There were no details, but a memory floated up before my mother’s eyes: years ago in the 1990s, something similar had happened. A doctor found something in her blood—she couldn’t remember what—but then the second test for it was negative. He told her not to worry about it, and so she didn’t.

  But the doctor my mother found this time was worried. Knowledge about hepatitis C—the virus formerly known as non-A, non-B hepatitis—had progressed since the 1990s. Now, it was understood to be a virus transmitted from blood to blood (through blood transfusions, IV drug use, and sex that causes bleeding). The virus attacks the liver, gradually causing scarring. When the liver is so scarred that it can no longer clean the blood, patients go into liver failure and (in the absence of a transplant) die.

  What was not entirely clear in the year 2000 was what my mother’s particular chances of going into liver failure were. Her tests showed that her liver was not yet scarred, although she did have a high level of virus in her blood. And because hepatitis C had only been recognized as a distinct clinical entity since 1989, long-term studies of the outcomes of people infected with the virus were not yet available. Some people with the virus progressed to liver scarring, and some did not—they lived full lives and died of other things without ever being affected by the hepatitis C. The reasons for these different outcomes were not entirely clear.

  So the doctor could tell my mother that she had this thing in her blood, and that it had the potential to make her horribly sick. To kill her. But she couldn’t say if that would happen for sure, or when.

  Sitting in the chair of the doctor’s exam room, gripping my father’s hand, my mother felt her body change. The body that had hopped on the back of my father’s motorcycle and ridden through the Ozark Mountains in the autumn of 1978, had borne two children and held our hands walking through a hundred forests, gone to college and become a teacher, hammered nails into the roof of our house—suddenly her body could not be trusted. Suddenly it harbored a monster that could turn on her at any time.

  The doctor was serious and calm.

  “How did I get this?” my mother asked.

  “It’s hard to say,” she answered. “The virus travels in the blood, so exposure to infected blood is how you get it. Were you ever a nurse or a health care worker?”

  “No, but I worked for the Health Department in Montgomery County,” my mother said.

  “Any needle sticks or exposure to blood there?”

  “No.”

  “Have you ever used IV drugs?” the doctor asked.

  “No.”

  “What about any blood transfusions?” And my mother began to answer no, but then she remembered: there had been one. In the summer of 1983, after my mother gave birth to me, the doctor ordered a blood transfusion for her. She felt okay at the time, and hadn’t fainted or anything. But the doctor said her blood counts were low, so she got the transfusion.

  “Yes,” my mother said, “there was one.”

  “And when was that?”

  “Nineteen eighty-three.” And that was the magic number, because between 1978 and 1989, scientists knew that some of the people getting liver infections after blood exposures were not getting them from hepatitis A or B—thus the term “non-A, non-B hepatitis”—but there was not yet a test for hepatitis C. And so my birth, and my mother’s transfusion, fell into the high-risk window for infection with hepatitis C.

  “So what do we do?” my father asked, and that was the question that led my parents from the world of the healthy into some twisty netherworld of treatment, where they would stay for many years, and from which they still have not recovered.

  THERE WAS A NEW TREATMENT on the market, an experimental treatment, and my mother’s doctor was eager to enroll her in a study so she could get this experimental medicine. It sounded very appealing: She would be at the forefront of medical care, taking a promising new drug that was not yet available to everybody. With my father’s encouragement, she quickly agreed to join the study.

  The first year of treatment was mundane and brutal. It consisted of pegylated interferon and ribavirin, two drugs that had a lot of the same effects as chemotherapy for cancer: my mother lost her hair, she was exhausted all the time, and she grew thin. But that year she was able to keep working. She’d drive around the bay to teach, then drive home and fall exhausted on the couch to sleep. She took to eating sweets—something I’d never known her to do—in an effort to keep weight on. Even so, she lost forty pounds. Her high school students, who only knew she was “taking chemo,” made her hats. And so my mother, a longtime hat lover, was able to fully indulge herself. She wore straw hats, felt hats, and hats that her environmental-science students had decorated with little sharks and aquarium plants.

  At home, she napped and apologized. “I’m sorry,” she would say, just after vomiting. My father fretted around her in a cloud of inarticulate tenderness, then held her quietly on the couch when she was too nauseated to move. As she grew thinner, he feared that she would die, but he couldn’t say it.

  My brother and I were gone most of that year—he was at college, while I was away in the Spanish Canary Islands on a Rotary Club scholarship for high schoolers. I called home one day to suggest that we take a big family camping trip that summer, and my mother vaguely replied that she wasn’t feeling too well that year, and wasn’t sure she’d be able to make it.

  “What do you mean?” I asked. “Not feeling well all year?” I was calling from my Spanish cell phone, sitting on some outdoor steps that led down toward a grocery store. I could see the ocean spread out below me, glittering, stretching away toward Morocco.

  “I’m just a little weak,” she said. “I’m taking some medicines. But I’m fine.”

  “Medicines for what?” I asked, beginning to cry.

  “Don’t cry, sweetie, don’t cry. I’m fine. I’m really okay,” she said.

  “Medicines for what?”

  “I have an infection in my blood, a virus. It isn’t HIV. It isn’t cancer. It’s called hepatitis. I’m taking these new medicines all year, and they should make the virus go away.�
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  “Mom.”

  “Don’t worry, honey,” she said. “I’m fine. I just don’t want you to be too surprised when you get home, and I’m a little thinner and more tired than usual.”

  For the most part, I didn’t worry. When I got home, I was tested for the virus. I was the last family member to be tested, and the one they’d been most worried about. Could I have been infected while breast-feeding, before I had an immune system of my own?*But I was not infected, and my mother wept beside me when I was back home and my results came in. I was surprised by her crying, and said “Mom. It’s okay, I’m fine.” Then I went off to college in the last months of her treatment.

  The most mundane and brutal part of the whole ordeal was that it didn’t work. The virus ebbed in her blood while she was on the drugs, but after the yearlong course was finished it came back as strong as ever. So all of that—the exhaustion and nausea, the weeping, the fear—all of it had been for nothing.

  My father could not quite release his fear, and began to hold her more closely. He tried to keep her from driving at night, or in the rain. Unable to control the virus that threatened his wife’s life, he began to try to control the things he could.

  TEN YEARS LATER, I studied hepatitis in medical school. By that time, in 2010, we knew a fair amount about the different subtypes of hepatitis C, and about the relative risk of progression to liver scarring. We knew about the natural history of the disease and the molecular mechanisms that lead to liver damage. And we knew the epidemiology: about one in two hundred Americans had hepatitis C. Rates were highest in the prisons, where IV drug use, rape, and consensual unprotected sex were common. (Hepatitis C is sometimes considered a sexually transmitted disease even though rates of sexual transmission are extremely low; sex that causes bleeding can transmit it.) So hep C had become one of those stigmatized conditions: an illness of poverty, depravity, immorality.

  Stigma works in a funny way. My mother says that every random health care worker feels entitled to ask her how she got it. She doesn’t look like the patient they expect—a burnt-out IV drug user or a former prisoner. And she could protest her innocence, but the whole paradigm offends her, so she usually says, “I’m sorry, but that’s none of your business.”

  My mother has friends who have been to prison, family members who have suffered from addiction, and has lived under the poverty line herself. She knows that nobody deserves to suffer as she has.

  My mother’s disease, however, is likely related to the illness of those thought not innocent. In one lecture during my second year of medical school, the professor described the history of hepatitis C. “In the 1980s,” he said, “we solicited blood donations from prisoners in Huntsville. The prisoners were an easy source of blood, which we desperately needed. But at that time, hep C was already rampant in the prisons, and we didn’t know it. So in the 1980s, untold numbers of people in the Houston area were infected from transfusions of blood that had been taken from the prisons.”

  I sat there in the classroom, stunned. My mother was one of those people, I thought. She gave birth in Conroe, a half hour from Houston and a half hour from the prison in Huntsville. There’s no way to know for sure, but the blood that infected her very likely could have come from the prisons.

  It is no longer legal to solicit blood donations from prisoners. The practice was not only unsafe but also coercive. I cannot help but think, however, that the brutality of prison has affected my family just as it has so many others. If we were not incarcerating so many people; if prisoners had access to condoms; if rape were effectively prevented in the prisons . . . perhaps my mother would not have had to suffer so much.

  MY MOTHER’S SECOND ROUND of hepatitis treatment was not mundane, but cruel. It began in 2011, in my third year of medical school, with another experimental treatment. Her liver was still healthy, but the possibility that the virus would one day kill her scared my father so much that mom agreed to the treatment.

  When she called to tell me about it, I was working on the internal medicine service. Just that week, I had seen a patient dying of liver failure from hepatitis C. He had lain in his hospital bed, his belly swollen and skin yellow, his arms and legs thin. He was on medications to prevent the sudden bouts of psychosis that poisoned blood can cause, but no medication could control the sweet stench that filled his room. The nurses rushed in and out, hardly able to bear it.

  “You’ll never forget that smell,” my resident told me. “That’s liver failure.”

  So when Mom said she was going to take the treatment, I agreed.

  It was two medicines this time, to be taken for nine months. One had to be digested with fifteen grams of fat. And so, nauseated as she was, she had to find ways to consume forty-five grams of fat per day, for each round of medication. She ate bagels with cream cheese, ice cream, cheesecake. But she could hardly bear to swallow food, and so we tried to find ways for her to get the fat in with the fewest number of bites. Eventually, we found a kind of full-fat yogurt that has enough fat in a single serving, and my brother would make road trips to Austin to buy the yogurt for her.

  The medicines made her thin, nauseated, and weak. Her hair thinned, her body changed. Her immune system was beaten down to a level where she couldn’t go into public without a mask on. She became severely anemic, and when her blood counts got so low that she was short of breath, the doctors would order a transfusion. She began walking with a cane, and carrying a lightweight camping chair so that she could sit down suddenly if she needed to. When I went home for holidays, my father would meet me at the door and cook me a steak with red peppers, while my mother lay on the couch and smiled up at me. With my mother disabled by chemo and myself away at medical school, my father and brother, the carpenter and the fisherman, had become the primary caretakers of our family.

  Things got pretty bad at home. My parents, who had always flirted and kissed in front of us, were no longer touching. My dad started smoking again, and would sit up nights in the living room alone. They moved out to Montgomery to be closer to specialists in Houston, and so—isolated out there in the country—their lives revolved around my mother’s care.

  Then, on the morning of the test for my ob-gyn clerkship, my brother called.

  “Hey, sis,” he said.

  “Pearson,” I said.

  “Hey.”

  “Hey.”

  “So,” he said. “I’m at the hospital with Mom. She wants to talk to you.”

  I sat down, while he passed her the phone. “Hi, Rachel,” she said. “Listen, I’m okay.”

  “You’re in the hospital.”

  “Well, I fainted in the bathroom last night, and your brother brought me in. They think my heart stopped.”

  “Your heart.”

  “I’m okay,” she said again.

  “Your heart stopped.”

  “Well, I’m okay. They’re going to put in a pacemaker.”

  “You’re in Houston?”

  “I’m at the Woodlands. I’m okay.”

  “Okay, I’m on my way,” I said. And she tried briefly to prevent me from coming, but her surgery was scheduled for that afternoon and my father was out of state, and I could not let her and my brother go through that alone. I knew she would be okay, but I could not let Matt sit out in the waiting room alone while she was in surgery. So I called to cancel my exam—no problem—and picked up barbecue on my way to Houston. With the hospital familiarity of an upper-level medical student, I climbed into my mother’s hospital bed to give her the first big hug she’d had since fainting. My brother was sitting beside her, pale and worried. After a while, we walked out to the parking lot together, and he finally ate something, and finally cried.

  “She screamed,” he said. “When she fell. And I heard this noise, her falling. I thought she was dying.” He had helped her out to his pickup truck and driven to the hospital with his flashers on.

  Mom’s heart had stopped at least twice—when she fainted at home, and again in the hospital. This is n
ot a common side effect of the medications. It was complex, having something to do with her anemia and maybe something to do with an abnormal heart rhythm that had never been exposed before.

  I knew how easily she could have died. She could have hit her head on the shower floor when she fainted, and bled into her brain. Her heart might not have started up again. She was out in Montgomery, in the house my father built off a dirt road that leads off another dirt road that is still a twenty-minute drive to the nearest hospital.

  The pacemaker surgery made a small scar on her chest. The machine is there today, ready to throb out an electrical pulse if her heart should stop.

  WHEN MY MOTHER WENT for her first round of blood tests after finishing treatment again, she was told that the treatment had failed. The virus was back. She kept the news between herself and my father for several weeks, then told my brother and me.

  I was so angry.

  “Don’t you hate medicine?” I asked her. “You must. That doctor put you on all these experimental drugs, and your heart stopped, and nothing. No cure. Two years out of your life. Nothing.”

  But she didn’t hate medicine, or she wouldn’t tell me that she did.

  When my mother gave birth to me, she was uninsured. She and my father and brother were living in that trailer in the woods in Montgomery, and he was working construction jobs for nine bucks an hour. They paid out of pocket for the birth, and for the transfusion that infected her. Obstetricians no longer routinely do transfusions on women with low blood counts after birth, unless they have symptoms such as a racing heart or lightheadedness. The practice is considered unnecessary, and too risky, so women are given a chance to recover and to gradually produce their own new blood. The transfusion that infected my mother was likely unnecessary: an excess of care, even though she was uninsured at the time.