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