The recent surgery to correct the hideous curvature of my spine has put me in mind of all my other accidents and illnesses, present, past and chronic. I am struck by the number of stories which are associated with all these misfortunes, not to mention the irony of being so strong and agile even now. The spine story will have to wait until I’ve recovered, but the kaleidoscope of images associated with hepatitis C came to me very strongly. I thought I’d write about that. 

I was first aware of symptoms when I went with a woman lover to her family’s country place. She wanted to have sex. I wanted to take a nap. She was hurt, but I really couldn’t do it without a nap. It seemed reasonable to me to want to sleep a lot on vacation. I had a high-stress job and my mother was ill, and I thought nothing of all the naps. I broke up with her some time later over the fact that she was so gullible and an actively competitive hypochondriac. It’s odd to have a lover who needs to be sicker than you. When I was later diagnosed with hep C, some quack chiropractor told her she had liver flukes and she believed it. I broke up with her because, as cute as she was, the hypochondria wore on me. 

Shortly after, my husband and a friend who was a pre-transition transsexual decided that we would participate in the 1993 “March on Washington for Lesbian, Gay, and Bi Equal Rights and Liberation,” which some organizers believed drew a million protesters. We flew to Washington on a red-eye filled with gays of all descriptions. Our friend wore girl clothes and a wig, her first outing as a woman. We were all rather giddy. The flight was an all-night party, and I arrived in Washington in need of sleep. We checked into a hotel and I had a long nap. The three of us got up and decided to do some exploring, as the march was not until the next day. I was surprised that I still felt tired, even after having a nap. I was normally resilient. I carried my fatigue with me as we looked at some minor attractions, not having the energy to go all the way to the Lincoln Memorial or anything else worth seeing. 

The next day, the march was as grueling as Army training, but energizing and exciting. People were handing out signs for you to write the name of the town you were from to demonstrate the universal nature of the protest. People from the same place were to march together. We found the San Francisco contingent and there were hundreds, if not thousands, of marchers. The three of us were in a whimsical mood. We all worked at the same company across the bay, in the small town of Emeryville. Emeryville had originally been founded by a guy named Emery to be a municipality without blue laws. It was a gambling and prostitution oasis in its day. It was still in its original architectural state when we worked there, though it was later blighted by housing developments and malls. There were excellent restaurants in former whorehouses. We took our signs, wrote “Emeryville,” and held them up. Immediately, several people joined us, happy to find anyone else from Emeryville. 

This was 1993, before the ubiquitous plastic water bottle. Back then, people simply expected to find water anywhere they went. Stores, stations, parks had water fountains. No one carried water. We lined up as we were directed, way in front of San Francisco as it turned out. And we waited. When you have a million people marching, everyone can’t start at once. You wait until your segment of the line gets to go. Emeryville waited six hours. It was hot. There was no water. No fountains anywhere. Entrepreneurial pirates sold four ounce drinks of water for a dollar. Our friend went somewhere and bought us some drinks. We sweated. Finally, after an eternity, we began to march. 

The right kind of protest march is euphoric. The Emeryville contingent marched proudly, enjoying the cheers of the people lining the streets. Some miracle of adrenalin, endorphins, whatever my body could produce, kept me going and feeling high. When we completed the route I insisted on waiting at the end of the march route, the far side of the Mall, and watching for San Francisco to march in. I cheered everyone madly. 

Back then, my husband and I, with help from friends, published a well-received and nationally distributed zine called Frighten the Horses. (The name came from a well-known Victorian quote regarding your freedom to behave as you pleased as long as you didn’t frighten the horses.) I had recently written a piece on the female serial killer Aileen Wournos and had been photographed for the cover holding my .38. I was wearing my Frighten the Horses t-shirt for the march. Finally, the enormous San Francisco contingent marched in to the hysterical cheers of the crowd. 

Suddenly, a stunningly beautiful girl of about 18 and broke from the San Francisco group and came running up to me. With a worshipful look, she said “You must be Sirenita!” I was shocked. It took me a moment to realize that she read our magazine and recognized me from my cover. “I’m Fawn,” she said. The name suited her perfectly. As if the euphoria of the march wasn’t enough, I was recognized by an admiring fan in that crowd of a million people. Fawn made my day perfect. I greeted her warmly. 

Then I was tired. My friend took a picture of me lying on the grass of the Mall, looking passed out. My body gave out, but only for a short time. My friend was not satisfied to leave me sleeping. I remember us playing on a carousel and getting as close to the stage as we could. I don’t remember getting back to the hotel room but I remember the exhaustion. 

At the time, my mother had Alzheimer’s Disease. She lived near me and I had two people working for me to provide 24/7 care for her at home. I could not afford a regular agency, so I hired immigrants (I speak Spanish), and trained them in how to take care of my mom. I had one very good caregiver, but I still had to keep in close touch, stopping at my mother’s house after my long work days. I was never free of the thought of my mother. Sex with my husband happened less and less often. I attributed it to thinking about my mother constantly. You can’t have sex while thinking about your mother. I hope. But maybe there was more to it. 

I began to feel less and less interest in doing anything. My poor husband was essentially abandoned, though he was the only one in the family who actually helped with Mom, taking her to church and then to lunch afterward to give me a few hours of a break. At the time, I took care of her Sundays myself, largely to keep in touch with her changing needs. But I was tired. If Mark suggested a movie or concert, I begged off. I one day realized that going to a dinner in a restaurant with my husband was about equally interesting as cleaning the toilet. Really. Something was wrong with me. Mark, who was always skeptical when I claimed to be too tired to do something, said, “I’ll get you out of bed.” He put on a salsa tape and offered to dance with me. He dragged me around the kitchen floor for a few minutes, and then looked at me with sudden concern. “There is something wrong with you when you can’t dance.” It was absolutely diagnostic. 

I went to the doctor and told him I had a clinical depression and needed to be on Prozac, as I felt I could not keep up with my responsibilities. (I have always helpfully figured out my diagnosis before going to the doctor, but he was of course free to revise it.) My doctor had a way of making you feel that he had all the time in the world for you, as if he had not started performing procedures at 6:00 a.m and was getting awfully tired. He sat and listened to me explain how my difficulties had finally weighed me down so much that I had become clinically depressed. Since he was also my mother’s doctor, he was aware of the constant stress. He said, “I’ll be happy to prescribe Prozac, but we don’t we run some tests, just to eliminate any other possible issues.” I don’t remember everything we tested. I had Epstein-Barr, but so does nearly everybody else and I had no other symptoms of mononucleosis. I didn’t have Lyme disease. I didn’t have HIV. I didn’t have diabetes or a cardiac condition. I went back once or twice, and we still didn’t find anything.

Then, finally, I began to feel ill, as well as tired and detached. I found I was running a temperature every day, not much of one, just 100 degrees, but it was constant and added to my fatigue. I went back to the doctor and he had the clue he needed to know what to test for. I heard from his nurse two days later: I was to come back immediately. We had a positive result. 

I had hepatitis C, only recently diagnosable with a blood test. Before a test was available, it was called “hepatitis non-A, non B.” But in the couple of years before I turned up at the doctor’s office with it, a test had been developed and was now being used to keep it out of the blood supply. The question was, how had I caught such a disreputable disease? It was generally a disease of junkies, except for those unfortunates who had had a contaminated transfusion. I had never had a transfusion. The doctor said, already sure of the answer, “And you don’t use drugs. There are a lot of cases where the source of the infection is unknown.” At the time it was thought that the disease could be sexually transmitted, similar to HIV. Since so many patients denied needle use, it was assumed they caught the disease through sex or some other as yet unknown method. (Hepatitis C is no longer believed to be sexually transmitted under normal circumstances, and government health sites do not recommend precautions against it for sex. Many people who have the disease who deny drug use in fact did try shooting up, often just once or twice on a lark, when they were young. It was so long ago, they were not regular users, their shooting partners were clean, middle class kids like themselves – these things made them believe their minimal exposure to needles could not be related to their having the disease now.)

I was a successful, responsible, hard-working, family-oriented middle-aged lady when I came down with hepatitis C. I was 18 when I met Crazy Jim the Hype, which we called him because he was a needle user. He showed up one day at our crash pad, having come all the way from New Jersey, in that mysterious way that traveling hippies knew where to find a place to stay. The rest of us hippies at the crash pad used drugs, but we didn’t shoot up. I certainly didn’t. I had never had the opportunity. His being a reformed junkie, combined with an intriguing insouciance, attracted me to Jim. He liked me as well. I had always (in a way, still do) lived on the edge. We talked about shooting some speed. I was curious, interested in trying anything that was offered back in those days. I didn’t feel part of the society that said drugs were bad. Jim didn’t seem to see anything wrong with introducing a teenage girl to IV drug use. Jim had already made friends with the junkies who lived in the cottage behind us, whom we hippies ignored. Jim and I pooled our money and he acquired a set of works (really, a simple syringe and needle; Jim didn’t go for the converted eye-dropper type of syringe that was used to pump the drug in and out of your vein). We got some crystal meth from the junkies, who sold what they could to buy what they needed. 

We shot up together for the first time in that crash pad. He went first, then he did me. Whether he even rinsed out the syringe and needle I don’t remember. Soon, shooting up at parties — cocaine, not meth — was the craze among a circle of my friends. I had learned to shoot up myself in the brief time I was with Jim and I didn’t need anyone to do it for me. I somehow learned to do other people, too. At first, the girls let their their boyfriends, who figured they could do anything because they were men, shoot them up. The boys injected them with the same finesse with which they worked on junk cars. One friend got a six-inch bruise from her boyfriend that she had to hide from her parents for weeks. It annoyed the hell out of the boys, but the girls began to insist on being injected by me when we were all together. 

I had a preternatural ability find the invisible veins in girls’ arms and not damage them. I was a damn sight better as a teenager than some of the people sticking needles into me today. I’m also obsessively clean. When I shot up a group at a party, I cleaned the works between every user, rising with water, then alcohol, then water again, over and over. I always went last. Jim gave the disease to me. I never gave it to anyone. My friends were all tested when I was diagnosed. None of them had it. My skill and clean-freak nature kept them safe. (Alcohol is not a disinfectant. It is a cleaner. It is not guaranteed to prevent contagion by hepatitis C. I believe my friends did not catch the disease because I washed the needles so well, there was simply no blood left. They also benefitted from luck.)

At the time, the only therapy was interferon injections that gave you what the brochures called “flu-like” symptoms. The package instructions recommended taking Advil or something similar before injecting. I figured it couldn’t be that bad and didn’t bother. I was wrong. I ended up lying on the bed shaking and moaning, my husband desperately piling blankets on me as I shivered uncontrollably. I had to inject three times a week. After a couple of weeks, the side effects lessened a bit, but it was still a miserable time. Once someone called us and asked if we wanted to go out. Mark said, “Well, we can’t go out tonight, but you can come over and watch Sirenita shake if you want.” I had no social life to speak of.

Since I’d been diagnosed, the protocols and treatments for hep C have changed. In 1992, the first antibody test was approved, in time for my diagnosis. In 1993, when I was diagnosed, Interferon was the only treatment. In 1995, the first viral load test was released. I had it done and found I carried a monstrous amount of virus in my blood. In 1996, my doctor recommended a liver biopsy, to determine the degree of liver damage I had suffered. In the initial interview with the eminent transplant surgeon who was to do the biopsy, I learned that it was possible to have a latent illness for 20 years. I learned for the first time that I had most certainly caught it doing drugs. 

The news was a shock, like finding the cops at the door for the crime you committed in another lifetime, when you were another person. At those times, it felt like a long-delayed punishment for my youthful wildness, the willingness to try anything. But I couldn’t sustain the moral certainty that such a conclusion required. Mostly, it felt like shitty luck. Remembering the lost, aching kid I was, I did not really believe she needed to be harshly punished, much less 20 years later. Mostly, I wished more had been known at the time and that the adults had not been so hysterical. Had anyone known about, warned me about, hepatitis C when I was 18, would I have believed them?

It’s hard now to convey how absurd and dismissable the messages we kids heard about drugs. Every period has its hysteria — communists, Satanists, child molesters — and the hysteria of the moment was drugs. The authorities seemed to get their information straight from from Reefer Madness, the ridiculous movie about kids gone wild on marijuana. We kids knew that marijuana did not lead to heroin. We knew that LSD did not make you insane. What we learned about the bad effects of drugs we learned by experience, not by listening to our elders. Would I have believed that serious diseases could be transmitted through needle use? Possibly, if such a message did not get lost in the hysteria. I was a smart kid with a decent education, which I acquired before being permanently expelled from San Francisco’s finest public school. I might have heard it. I flashed on Jim, my vector. He was unlikely to have cleaned up like I did. He’s probably dead now.

Miraculouly, my biopsy showed I had a near perfect liver. I had no fibrosis, no hint of cirrhosis, certainly no cancer. Inflammation is unavoidable with the disease, but I had a minimal degree: 1 out of 10. There was no virus present in the core sample of my liver. Oddly, the virus chose to stay in my blood and leave my liver alone. I had a rather unusual version of this disease. As I realized during my mother’s illness — and much later, going to law school — stress makes the disease active. But it causes fatigue in me, not liver damage. My liver is admirably resilient. I drank like a sailor on shore leave for years, and now I have to take all sorts of medications. The liver has the capacity to regenerate itself, the only organ that can do that. I guess I gave mine enough of a break early enough in life by quitting drugs and drinking (mostly) that it managed to fix its own self up by the time the doctors took a look at it. I do have the occasional drink nowadays. Seems to do no harm. 

After the unsuccessful treatment with interferon and the horrifying viral load test, I finally had some good news. This disease was not going to kill me. My liver took what I threw at it and came up roses. 

(Part 2 will appear tomorrow)