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
