Some people I interviewed who have been afflicted with hepatitis C asked that their names be withheld. I have honored their requests by using pseudonyms. In some instances, I have altered other identifying information. I have stuck as close to reality as possible while aiming to respect people’s wishes. Other sources’ identities have been withheld for personal reasons.
I talked with people and looked at research from all over the world. However, most of my sources are based either near Vancouver, British Columbia, or in San Francisco. Vancouver is a typical Canadian city when it comes to hepatitis C treatment, and has been home to many clinical trials of hepatitis drugs. I live close to Vancouver and underwent treatment there. San Francisco, however, is not a typical American city in its approach to hepatitis C but a progressive city that is arguably home to North America’s best support network for people seeking hep C treatment or counseling. When I asked for help in researching this book, hepatitis C patient advocates in San Francisco poured out an enormous welcome and led me to a wealth of resources. As a result, a large portion of the information in this book is from San Francisco.
When I first talked with my publisher, he encouraged me to dig deep into my hippie days, when I most likely contracted hepatitis C. He asked me to bring out the flavor of the sex, drugs, and rock ’n’ roll era. I tried to reconstruct some of that past in this book to show ways I may have acquired hepatitis C. Some incidents include quotations. Most of the words were uttered so long ago that I have probably not repeated them accurately. However, I’m certain the words I’ve chosen reflect the speakers’ intentions and meanings. I have aimed to characterize people and to explain their actions and emotions, which I remember well.
I’ve written about family incidents from my childhood and talked with my older sisters Mary and Kathy to check for accuracy. Each of us recalls events differently. I am much younger than they are, so the events I refer to were probably more traumatic for me. While I was considering our different viewpoints, I talked with John Lavette, a San Franciscan whose story is in this book. He described a scene with his father that was so disturbing to him, “it became like a photograph.” The traumatic scenes from my own childhood were etched in my memory too. When all was said and done, I decided to go with my own version of childhood events, modified somewhat by my sisters’ recollections.
I have blended these long-past experiences with my thoughts during treatment, with stories of other people who have hep, and with recent events surrounding hepatitis C. Coming through the disease, through the shock of the diagnosis, through the pain of learning of its stigma, through the relief of knowing I had people to support me, and through the insight I gained from meeting people who had bravely fought their own infection, I made some unexpected discoveries. I learned about friendship, medical science, and greed—and I learned that throughout my experience with hepatitis C, I was incredibly lucky.
By 2017, more than two years after the end of my treatment, the traditional hepatitis C remedy, six months to a year of grueling interferon, had diminished to a blip on the medical landscape. New drugs had turned treatment into a simple two or three months of easy pill-taking. Governments, health organizations, and at least one multinational drug manufacturer announced plans to eliminate the virus entirely.1 Yet most people with hepatitis C still find it daunting to pay for the miracle drugs.
Thankfully, market forces have begun to shift, making hepatitis C treatment more affordable. I believe there is hope that one day this disease will be eradicated.
PROLOGUE
DECEMBER 1971
A FLUFF OF CLOUD parted and sun danced through the windows as I entered the downtown Montreal apartment with my beautiful tiny baby. The four-room suite took up the whole second floor of the landlord’s house. Peter, Della, and I had just moved in. The floors creaked and white paint was peeling from the wainscoting, but there was ample space for a soapstone-carving corner and for four-year-old Della to run around. Unlike Peter, I had wanted a second girl. My new child was unexpectedly fair, with pink cheeks and fine, wispy hair that was almost white. She gurgled in my arms. We would name her Jessica. I was reading Dune, and Jessica was the wise woman in the story.
Because I was young, healthy, and strong, I didn’t let the doctor’s order to get some rest stop me from playing with my four-year-old. I believed she needed assurance that I’d love her the same as always, even though I couldn’t help grinning at the cute little honey bunny I had just brought home. I sat on the floor with Della, rolled out huge sheets of parchment, and opened a dozen jars of poster paint. Together we painted sheet after sheet of grassy fields that burst with flowers. We painted happy faces on suns that shone above the fields. When Della grew tired and curled into a nap, I made a mobile of ribbons, which I hung over Jessica’s crib. I woke Jessica to feed and diaper her—she was, at first, a sleepy baby—and then fatigue dusted over me.
I awoke an hour or so later when I heard a knock. Peter answered the door and greeted Norman, a friend who was an intern at the Jewish General Hospital, where Jessica had been born. He had come to congratulate the new parents and to see the baby. As I was about to get up to say hello, I noticed that a blizzard was blowing outside and the mattress on the floor that served as my bed was soaked red with blood.
Norman saw what was happening and rolled his palms over my belly, trying to push out pieces of placenta so that the hemorrhage would stop. We used up all of my Kotex pads to sop up the flow, and then all of the baby diapers. But the red, sticky stream didn’t abate. Norman carried me down the stairs to the snow-covered sidewalk and into his car. I remember the little beater Datsun swerving and screeching through icy streets. I remember snow blowing against the windscreen faster than the wipers could wipe. After that I passed out.
I awoke for a minute or two in the hospital emergency room. A nurse said I had lost so much blood that she couldn’t find my pulse. Needles attached to tubes stuck out of my arms, and one was flowing crimson. I passed out again, unaware that the demon that would threaten my life forty years later had most likely just sloshed into my veins.
PART I
INFESTATION
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,
