Читать книгу Demon in My Blood - Elizabeth Rains - Страница 8

CHAPTER 1

FATIGUE

SALT WATER SPLASHED my face and soaked my shirt. It lapped at my feet in the bottom of the sleek sea kayak. My hands gripped the paddle, plunging it in and out of the surf, but not fast enough. Not hard enough. Waves knocked the side of the kayak, threatening to swamp me. A cedar home on the bluff above the rocky beach to my right, which I had admired ten minutes earlier, was still directly to my right. The kayak bobbed and pitched, but I was making no headway against the current.

I struggled to will away the fatigue that had plagued me lately, but I couldn’t find the energy to coax the boat even a foot forward through the sea. Wind blew at me. I was so, so tired. I worked the rudder but couldn’t make the boat turn toward shore. I thought the kayak would fill with water and I would drown.

I was on a visit to Mayne Island, in British Columbia, with two of my colleagues at the college where I taught. We knew that the currents between Lizard and Samuel islands would become turbulent around noon, so we had planned to glide through the passage by eleven. But we had lingered over coffee and had stopped a few times to take pictures.

An hour into the paddling trip, my friends Cheryl and Abbe had become used to my pausing for rest and camera shots, and we had set a pattern of one or both of them cruising ahead and waiting. Just after we had turned into the passage, they advanced out of sight. They were probably far ahead, past the rough stretch, waiting for me. They could wait forever, it seemed, and I would never catch up with them. I realized that if the boat were to capsize, I would stay conscious only for a while. I was too tired to paddle, so certainly I was also too tired to swim. Too bad I had never learned the kayak roll. Too bad that somehow the strength I used to possess had ebbed.

I stopped paddling to see where the current would take me and also because I could hardly move my body anymore. I couldn’t catch my breath. A wave breached the rail and spat into my mouth as I was yawning.

I had always been muscular for a woman and believed I had retained above-average stamina. During my thirties I had lifted weights in a gym about ten hours a week. During my forties I had been a yoga fanatic. But now, in my fifties, I became easily exhausted. I felt generally weak and would give up on household chores after half an hour because of a desperate need for a nap. Maybe the fatigue was a normal consequence of getting older, I thought.

Just as I was about to let the sea take me wherever it would, I saw red hair gleaming in the sun. It was Cheryl in her kayak, plowing through the surf. She roped my kayak to hers and towed me until we were near the shore. Then I paddled sluggishly alongside her to Potato Point on Mayne Island, where Abbe waited, smiling and cheering me in. Cheryl and Abbe were close to my age, and they had plenty of energy. What was the matter with me?

After that experience, I decided that the problem was that I was overworked. I had two jobs, too many students, and little time to spare. Retirement would cure me, I was sure. To prepare for it and for our dream life of ease, in the late summer of 2012 my husband and I moved away from Vancouver into an ocean-view home on forested land on the Sunshine Coast of British Columbia. My plan was to work there for a few more years and then to enjoy my family and travel.

The Sunshine Coast is a peninsula, lying twelve miles from Greater Vancouver across Howe Sound. A ridge of the Coast Mountains surrounds the sound, creating eye-popping seascapes but making road travel to Vancouver impossible. To get from the rural coast to Vancouver’s frantic metropolis, we had to take a ferry. Al and I both worked there. We commuted two hours each way—on the boat, bus, and SkyTrain—for our jobs.

Leaving at 5:45 a.m. to catch the ferry was tough because I rarely got enough sleep. Besides being tired in the day, I suffered joint pain in my arm and shoulder at night. I was also unusually jittery. No matter when I got to bed, a stabbing pain would jar me awake close to midnight. The only relief was to sit upright for at least an hour. I kept both a Kindle and an Android reader on my bedside table, each loaded with several books. I would fire one up, place three pillows behind my back, and read. Eventually I would flop into sleep, but I would suffer a couple more bouts of anguish before dawn. The routine often woke my husband. Al, ever tolerant and an easy sleeper, would half open his eyes and ask what was wrong. I remember a night when I answered by snapping, “Don’t you know?” I tossed the Kindle aside and knocked my lamp onto the floor, shattering its bulb. I had thought living on the quiet Sunshine Coast would keep me relaxed, but it didn’t.

Soon after the move, I learned that my doctor in Vancouver was thinking of retiring. After thirty years of a doctor–patient relationship, Dr. Louise Halliman and I had become friends. I told her I planned to retire soon too. So as Louise tested my damaged arm for mobility, we talked about opening up time in our lives during retirement. It seemed the right time to try a doctor on my side of the ferry route.

Back at home I called Dr. Iris Radev, who had just begun to practice in Gibsons. Her assistant slotted me into a “meet and greet” appointment for March 10, 2014. As the day approached, I decided I’d interview Dr. Radev, find out if I liked her manner, and withhold my decision whether to change doctors until I had given it some thought. Dr. Radev turned out to be a perky young woman in a trendy gray business suit. Perched at a computer, she tapped away as she asked about my medical history. She started with the usual set of questions: Any history of cancer in my family? Heart problems? Major surgery? No, no, no. The questions kept coming—there were more than I was used to—and she mentioned that she liked to be thorough. She examined my heartbeat with a stethoscope, and she looked down my throat with a tongue depressor. She asked about my medications, and she filled out a prescription for one that was running low. She typed the information into the computer with fingers almost blurry with speed. A printer churned out the prescription. I gazed on in appreciation, my plans to treat the “meet and greet” like a job interview as far out the window as China is from my living room.

The printer kept spitting out pages. “These are for tests,” she said, handing me some of the sheets. “When I get a new patient, I do a lot of tests.”

I thanked my new doctor and headed out of the clinic into the sunlit parking lot. Unlike medical labs in Vancouver and its suburbs, the LifeLabs unit in Gibsons is seldom busy. In fact, a ten-minute wait for anything on the Sunshine Coast except the ferry is considered exceedingly long. So as I walked out of the Gibsons Medical Clinic I had no excuse not to pop into LifeLabs. The sun shone. Spring was coming, and potted pansies bloomed on racks outside the grocery store. Ambling through the parking lot, I glanced through the lab’s sidewalk-to-ceiling windows. The waiting room was empty. I gazed at the top sheet in my hand and read that one of the tests would be a blood test. I turned and walked straight to my car. After all, my dog, Zeena, was alone at home, wanting a walk. I told myself the tests were routine. There was no urgency.

Actually, I knew Zeena could wait. I was skittish around anything that could draw blood. I had fainted twice during blood tests, and once in the 1980s I wobbled with my stomach churning as a doctor sliced a quarter-inch sample of a rash from my young daughter’s shoulder. Both Jessica and the doctor reached out to steady me, and I squirmed in embarrassment. The incident reinforced my squeamishness, which prompted me to sidestep Dr. Radev’s order for a blood test.

Besides asking me to get the blood test, Dr. Radev had recommended that I see a physiotherapist for my joint pain. The physiotherapist wanted a copy of MRI results from tests that had been done on my shoulder the year before. Close to two weeks after my first visit with Dr. Radev, I stopped at the clinic to ask for those. Since I’d be in the same mall, I decided to go to LifeLabs. As I left the medical clinic, I conveniently skipped the second task and drove instead to Tim Hortons.

Driving home with a coffee in the cup holder and a honey cruller in hand, I scolded myself for being a wimp. My husband and I would be leaving the next month for Mexico. Before splashing into the ocean off Tulum, I should make sure I was healthy. So I got off the main drag, made a U-ey, and drove through Upper Gibsons to the mall. My fingers were sticky from the donut, so I took a side trip to a washroom at the nearby supermarket. I continued on to the medical lab, stopping at a clothing store to try on some jeans and at a kitchen store to hunt for a cheese grater. I wandered through the Sears outlet store, comparing major appliances I didn’t need. Then I steeled myself and entered LifeLabs.

The waiting room was empty. I started to leave, but a short, curly-haired lab assistant named Bernice arrived at the counter and reached for my requisition. Once I handed it to her I was committed.

“You can go right ahead,” Bernice said. She led me to a room with a beige padded chair fitted with wide, beige padded arms that went well with the beige-everything look of the clinic.

“I can’t sit. I’ll faint,” I said, thinking my blood would create a startling contrast with the decor.

Bernice led me to another room with a narrow vinyl bed that had a sterile paper cloth spanning its length. I lay down, stretched out my arm, and squinted my eyes shut. I explained I had fainted in the past.

“Don’t worry,” she said. “It won’t take long. You can stay here and lie down afterward, until you feel okay.” She babbled about the weather and stretched a tourniquet around my arm. A needle pierced my skin. Seconds slushed by. My stomach fell, as if I were descending in a roller coaster. “All done,” she said.

My mind spun for a few minutes, and then I slowly rose from the cot. As I passed Bernice at the counter, I grabbed a brochure that told me I could get my results online. I was happy I hadn’t fainted. (It’s hard to swoon while lying down.) I could get the results quickly. And I wouldn’t need another blood test anytime soon, I told myself, unless the test revealed I had hemochromatosis.

HEMOCHROMATOSIS IS A rare genetic disease that causes a dangerous iron overload in the blood. It affects more than 1 million Americans and 100,000 Canadians. It’s most common among people of northern European descent. Its symptoms include abdominal pain and memory fog, which I had been experiencing. I knew the source of my stomach pain. It was a hiatal hernia, in which stomach acid flushes upward through the diaphragm and flows where it shouldn’t. I attributed the memory fog—which I later learned is also a symptom of hep—to a loss of sleep because of shoulder pain. However, my dad had suffered from hemochromatosis, so he carried the gene. He had advised me to get tested. For many years I had put his warning aside.

It had come a few weeks before he died, and less than a month after 9/11. The highway borders between British Columbia and Seattle had thickened with security. Lineups for cars were inordinately long, and most people avoided cross-border trips. I couldn’t do that. My dad was suffering from heart disease, bone cancer, and kidney failure. My mother was having a hard time managing the half-hour drive from their condo in Kent to downtown Seattle to take my dad to his dialysis appointments. I crossed the border once or twice a week to help out.

After driving forty minutes from Vancouver, I’d line up with hundreds of other frustrated drivers and wait. Eventually I’d inch up to the Customs and Immigration window, hold out my passport, and explain I would be visiting my parents. I’d drive another three hours to Kent, which was halfway between Seattle and Tacoma. I would head out from Vancouver in the middle of the day and by the time I arrived in Seattle, I’d be caught in the rush hour. I was working at two jobs (and had hepatitis C without knowing it), so I would be tired, exasperated, and not in the mood to hear any of the invective my dad typically spewed whenever my mother or I said or did anything that wasn’t entirely to his liking.

One day, while I was driving my parents to the kidney dialysis center, traffic became unusually heavy. I took a left turn at a busy intersection, where I knew of a shortcut. My dad snapped, “That’s the wrong way.”

“This is a shortcut. It will get us there,” I said.

“You’re an idiot. You don’t know your way around Seattle.”

“I’ve driven through here many times. Check the map. This is the right way, and it’s quicker,” I said, fumbling in the glove compartment and pulling out a map.

He refused to take it. “You’re wrong. You’re an idiot,” he said.

“Maybe there’s more than one route,” my mother said from the back seat.

“You don’t know anything, Julia. You’re stupid and you’ve always been stupid. Now shut up,” he boomed at her.

I pulled the car to the side of the busy road, onto a gravel driveway. “You shut up and apologize to Mother,” I said.

“I’m not going to apologize. Turn around. Do what I say! Go back the way I told you.”

“This is the right way, and I’m not going anywhere until you apologize to Mother.”

My dad’s rage rose toward the boiling point. He called me names much worse than “idiot.” He called my mother “mindless” and “useless.”

His rant continued for a minute or two, but it seemed to last an hour amid the hum of cars at the intersection. My hands tensed on the steering wheel, but I said nothing until he had stopped. “You’re an old man,” I said. “I assume you need to go to your dialysis appointment or you’ll die sooner than you thought. But I’m not going anywhere until you apologize to Mother. You’ve abused her too much over the years. Now apologize.”

He said nothing.

My mother said nothing.

“I’m not going anywhere,” I said. Traffic whizzed by. I looked at my watch. It was a late-afternoon appointment and the dialysis center would soon close.

“I’m not an evil man,” my father said.

“Then apologize.”

“I apologize,” he said.

“You apologize to Mother?”

“I apologize to Mother.”

He spoke gruffly, without a sorry tone, but I had freaked myself out wondering if my stalling would kill him. I drove on. The shortcut worked. We reached the dialysis center on time.

My father didn’t talk to me again that whole weekend, but the next time I arrived for a drive to the dialysis center, he pulled me aside and said, “There’s something I’ve got to tell you. You should be tested for hemochromatosis.” He explained that it was a genetic disease. If my mother had a gene for it—she had never been tested—I would have a 50 percent chance of inheriting the illness. Hemochromatosis inhibits the elimination of iron from the blood. It causes excess iron to collect in the organs, including the heart, the kidneys, and the liver, and can make them fail.

ONE WEEK AFTER the blood test, I was sipping a morning coffee and reading the news on my tablet when I received a phone call from a medical assistant in Dr. Radev’s office saying that Dr. Radev wanted me to come in. After I made an appointment, I turned to my computer and looked at My Ehealth, British Columbia’s and Ontario’s online system that provides lab results to patients. The site showed that my hematocrit and hemoglobin levels were beyond the normal range. Hematocrit is the percentage of red blood cells in the blood. Every red blood cell contains 280 million molecules of hemoglobin. Each molecule of hemoglobin contains four proteins of heme, an iron-based pigment that picks up, carries, and releases oxygen. Excess iron is the problem in hemochromatosis, so I figured that with too many red blood cells, hemoglobin, and iron-carrying proteins, I was a sure candidate for the disease.

The treatment for hemochromatosis, which my dad had begun too late to save his organs, is frequent phlebotomy, or removal of blood from the body with a syringe. I knew I had automatically inherited one of my dad’s two hemochromatosis genes, and now I thought I must have picked up a recessive gene from my mother. I believed I would be subject to the most awful treatment I could imagine and would have to endure it for the rest of my life.

1953

CHILD

THERE IS A small chance that I contracted hepatitis C when I was four. My parents had just bought a green stucco house in Bayside Gables, couched on the eastern edge of Queens where Long Island juts into the Atlantic. The Gables was nothing like what most people might imagine as New York City. The eight-block cluster of high-end homes adjoined a swamp, a mud-bottomed bay, and undeveloped forest. Most of our neighbors’ homes hid behind scrolled-iron gateways or rock walls covered with vines. Our front lawn lay open to the street, which made our house somewhat modest, in an area where “modest” meant stately but slightly less than upper crust. My father had leveraged every asset we had to buy the house for $32,000 (it is probably worth more than $2 million U.S. now) because he wanted people to think our family was rich. We weren’t.

To mark our early-winter move-in, he put up a twenty-five-foot Christmas tree. It climbed toward the peaked ceiling of the living room, which was the size of a basketball court. My three older sisters took turns clambering up a ladder to adorn the upper branches. My father shambled up the metal steps to place a star at the top. My younger sister and I, with our mother’s coaching, sprinkled tinsel and placed ornaments on the bottom of the tree. There was peace in the family for a day.

Most days either my father was away working, playing bridge, or playing golf, or he was roaring at my mother and my three older sisters. He never drank alcohol, but he endured frequent migraine headaches. When a headache rolled in he would hunch over on a chair or couch. Then he would thunder around the house, hollering and smashing things. If I wasn’t in his sight when the rages flared, I would scramble into any hiding place I could find and clamp my hands over my ears. Once my father broke my mother’s hand, and she often wore bruises. He never hit me except for a lone spanking.

Sometimes he tried to play with me. After the peaceful day decorating the tree, I was thinking that maybe my father wasn’t really a bad man. After all, he had suffered from polio as a child. He couldn’t run around like me and had to spend his childhood in a hospital. And the morning after Christmas, when he tried out one of his presents, a new razor and set of blades, he proudly showed me the art of shaving. I watched in amazement as he stood before the mirror in the upstairs bathroom with his belly bulging over the top of his pajama bottoms. They covered his mangled left leg, which was sticklike from his childhood disease. While he was shaving, he cut his cheek, so he plastered it with a small bandage.

Later, when no one was looking, I tiptoed back up the stairs to the bathroom. I couldn’t see myself in the mirror because I barely reached the top of the sink, but I ran the razor across my preschool cheeks. I scraped at the skin a few times and traipsed into the living room to show my family my handiwork. Blood poured down my face and spotted my blouse.

“What did you do?” my father shouted. He stormed and screamed and bellowed at me. I began to whimper and then to bawl. “Stop crying or I’ll give you something to cry about,” he roared. I pressed my lips together, trembling. He grabbed my arm and wrenched me up the winding staircase to the bathroom.

Snatching me around the waist, he lifted me up and forced my head into the sink under the running tap. Water washed through my hair and trickled pink over my face. I sputtered and sniveled and whined. “Stop crying!” he shouted again. I locked my mouth and willed my tears to stop.

Decades later, I wondered whether the razor cuts might have given me hepatitis C. The Centers for Disease Control and Prevention in the United States advises anyone with any kind of hepatitis not to share personal items that could carry their blood. These include razors. My father died in 2001, succumbing to heart disease, kidney failure, and cancer. I seldom talked with him about his illnesses, and I would never have thought to ask him whether his disease-riddled system was also harboring hep.

Often people infected with HCV (the hepatitis C virus) die from other causes, so there’s a possibility he may have been infected. Because his childhood bout with polio had affected his leg, he underwent frequent surgery that required blood transfusions. Those surgeries would have occurred in the late 1920s or early ’30s. Around that time transfusion blood was often collected from professional donors, who were told merely they should keep themselves in good physical condition, be careful about cleanliness, sleep in a well-ventilated room, and get daily exercise. They were never asked about hepatitis C. It wasn’t even identified as a virus until 1989.

The U.S. Army reports that doctors in the ’20s and ’30s noticed “epidemic jaundice.”¹ If some of that had been hepatitis C, my father may have had hep C most of his life. It may never have resulted in symptoms, since hepatology researchers report that the earlier in life you contract the virus, the longer it will take to seriously affect your liver. Although there is only a slim chance that I could have contracted the virus from my father’s razor, it is possible. And if I had contracted it early in life, according to the research, that may be why I went for decades without symptoms.