According to the Center for Disease Control, more than four million people in the United States have hepatitis C; that’s more than five times as many people infected with HIV. And in article, Newsweek’s senior medical editor Geoffrey Cowley wrote, “Now thousands of people are getting sick. By 2010, it may strike down more Americans each year than AIDS.”
Through the fall of 2001, a wave of us across America received a life changing letter from the American Red Cross informing us that the blood we donated after 9/11 tested positive for the hepatitis C virus (HCV). Discovered in 1988, the virus invisibly incubates in the liver for decades possibly causing cirrhosis, cancer, and liver failure. Or one can live their lives never knowing they have the disease. Boomers are being hardest hit, because of the timing, some are learning they have hep C when the get their life insurance physical results.
“Those people who got it in the late 70s, early 80s, are now at the point where that five percent (of the four million with HCV) is showing up. Death rates are going to increase because those people who have been marching along, are now hitting the time where they’re at risk of death,” noted Dr. Fredric Gordon, liver transplantation director at Lahey Clinic in Burlington, Mass.
It wasn’t until 1992 that blood used for transfusions was tested for the presence of HCV, putting those who had transfusions or organ transplants before then at risk. Since then, new cases of the disease have declined. However, keeping in mind that the virus takes twenty or more years to become symptomatic, if at all, that takes those most at risk back to the 70s.
It was an era of an emerging counter culture. People were protesting the Vietnam War, experimenting with intravenous drug use, and living communally sharing peace, love, toothbrushes, razors, and nail clippers, creating opportunities for the virus to spread. According to Dr. Gordon, hepatitis C can live for four days in the blood residue left on shared surfaces. Sharing syringes with an HCV infected person may have shot the virus directly into the veins.
After the stunning events of 9/11, many of us functioned in a state of numbness. Despite the brilliant sunlight illuminating the fiery reds, oranges and yellows of the leaves on an autumn New England day, my view of the world had become a two dimensional display of muted shades of gray. My melancholy mist enveloped me for weeks.
Relenting, admitting that this sadness wasn’t going anywhere soon, I took the anti-depressant my doctor prescribed. Looking back, the pills were a layer of protection against the deep depression that was a possible side effect of the then experimental drug cocktail I would take to treat hep C.
After I learned about my infection, I began researching on the Internet. I stumbled onto a new test that measures the virus’ activity in the body. I called the manufacturer and got the name and phone number of the sales person for my area. He told me about another drug, Pegasys, his company had in clinical trials to treat the disease and gave me the names of doctors at hospitals conducting studies. That conversation created the sequence of divinely guided steps of a journey that changed my spiritual perceptions, physical being, and marital status.
From February through March 2002, I was blood tested, liver biopsied and introduced to a hospital culture previously unknown to me and with which I became intimately familiar. On April 12, with my then husband and list of questions, I met my doctor to review the results.
Smart, highly regarded, and impeccably dressed, he stood at a white board, explaining numbers to us with diagrams and charts that he drew with dry markers. Sitting down, Dr. Gordon said that the disease had damaged my liver, but because it scars and deteriorates the tissue slowly, I would probably die of something unrelated to HCV. However, I would still have this virus loitering in my liver. The numbers showed scarring and required monitoring or I could pursue treatment – the choice was mine.
A proactive patient, I continued researching, contacting experts to get their opinion of Pegasys. After sharing the gathered information with my doctor, I asked for his input. The side effects range from none, mild flu-like symptoms or most unpleasant, including hair loss, fatigue, depression, suicidal thoughts, and anemia. (After I started, the drug study nurse told me that due to side effects 15 to 20 percent dropout). At twelve-week intervals, tests would determine if the drugs were working and if so, I would continue taking them for another 12 and then, 24 weeks. If the results continued to show no viral detection, I would take the drugs for a total of 48 weeks – a long time. Leaving Lahey, my head throbbed from so much information. I had to decide – to treat, or not to treat.
Like a comforter that’s been around for years, lovingly stitched together in places that had ripped apart, my marriage was frayed. Because of his job, my husband was often absent. I wrote for a newspaper part-time, while caring for our son, Sam, and taking him to his seasonal athletic games and practices.
With grandparents in Florida, no family nearby except for a few close friends, who would be there for him during the next 48 weeks if the side effects were extreme? Who would be there for me? Bombarding myself with questions for days, I got my answer one night on the tag of an herbal tea bag, “Now is the time, the time is now.” I pay attention to those kinds of messages. Evaluating the circumstances, I knew that at 48 years old, my healing abilities were ebbing away with age, I had a superb doctor, and knowing I would eventually treat; I decided that the time was now.
My chiropractor found an immune building regimen of vitamins and herbal supplements, which I began taking after clearing them with Dr. Gordon. Further study of alternative medical treatments naturally led me to the guru of integrative medicine, Dr. Andrew Weil. While reading Spontaneous Healing, I learned he didn’t favor the chemotherapy-like treatment for HCV. However, toward the end of the book, I found Weil’s Seven Strategies of Successful Patients. Number six was to “regard illness as a gift.”
Weil wrote, “Because illness can be such a powerful stimulus to change, perhaps the only thing that can force some people to resolve their deepest conflicts, successful patients often come to regard it as the greatest opportunity they have ever had for personal growth and development – truly a gift.” I re-read that sentence throughout my treatment and it became my rallying cry for a period in my life that I refer to as Revolution #6.
On Friday, June 14, 2002, I injected myself with the first weekly dose of Pegasys. Along with the daily doses of ribaviron, the internal pharmaceutical war began. The battle included weekly, then monthly trips south on Route 3 to Burlington to meet with the study nurse, answer the drug company’s study questionnaire rating my side-effects, and then sit in the large waiting room where they draw blood, until I hear my name being called.
The entire spectrum of American society sat in that room. From well dressed to threadbare, people of all ages and degrees of healthiness waited – some in wheelchairs with clear thin plastic tubes taped to their noses. If the Democratic National Committee continues its quest for a more diversified primary than New Hampshire’s, they should have it in that phlebotomy waiting room.
As I have done throughout my life, I kept a journal. After the first five weeks, I wrote, “It is so foreign and frightening to feel like this. Is it good that I do? Are the drugs working? Is this just the massive initial attack on the virus and then things will settle into a steady simmer?
“Walking up or down steps makes me dizzy and out of breath. Standing too long makes me break into a sweat. My body is here and my mind is floating over there. I may look and sound normal, cognitively astute, but I assure you, mentally I am in a thick fog. My brain is a big cotton ball.”
On Sunday of the seventh week, I seriously contemplated quitting the study. Nauseous, achy, and mentally disjointed, I was in emotional turmoil and during a tearful telephone conversation with my father; he encouraged me to hang in there.
“Anxiety envelops me. Red patches of psoriasis cover my body, my hair is falling out, and the ebb and flow of energy makes me feel like a dog on a choke chain, just about to run. Start, stop, start, stop. I removed my jewelry. There is no desire for adornment. In fact, I wish I could function invisibly,” I wrote.
Fatigued, I read Neale Donald Walsch’s Conversations with God. The trilogy contains God’s responses to Walsch’s questions. God told him, “I am always with you, in all ways.” According to Walsch, all I had to do was start the conversation, pay attention, and God’s response comes in the next song I hear, movie I see, or tea bag tag I read. In those days of isolation, I had many silent conversations.”
On September 29, 2002, a huge crowd of 150,000 protesters in London held signs, “Don’t Attack Iraq.” Our government’s war chatter grew louder and seemingly, a simultaneous transmission of Thunderclap Newman’s song, “Something in the Air,” reached the planet: “Call out the instigators/Because there’s something in the air/We’ve got to get together sooner or later/Because the revolution’s here, and you know it’s…right/And you know that it’s right/We have got to get it together/We have got to get it together…Now”.
My qualitative and quantitative numbers in October showed that the drugs were working, so despite the fatigue, constant sadness, and physical maladies, I continued the treatment, writing, “I am withering. I feel ugly and am spiritually depleted. I summon energy for my Revolution #6 and remind myself to regard illness as a gift, while wondering if my marriage will survive this ordeal.
“Bill is gone again and I have to take Sam to basketball tryouts. Some people have two or three chins. I have three eyelids. They are so swollen that when I blink, the skin rolls under the next soft rounded layer. The skin under my eyes is dry, flaky, and reptilian textured – no more eye make-up for me. Barry Reynold’s song, “I Scare Myself” comes to mind.”
When I walked into the crowded gym with Sam, I saw the other parents whom I knew from years of Sam’s participation in different seasonal sports. Although no one said a thing, I felt the penetrating visual examinations. It was the most psychologically uncomfortable moment I’d experienced since starting this process. Dying inside, I wanted to hide. But this wasn’t about me – it was about the promise I made to myself to keep Sam’s life as routine as possible.
Always self-sufficient, for Sam’s sake I learned how to ask for help. After dropping him off for basketball or soccer practices at night, his coaches kindly brought him home. Exhausted, I got into bed and read or meditated until Sam returned. During this time, I refused to think of myself as a victim. I saw myself as a pioneer in the search of a cure for hep C, consciously choosing hope instead of anger at my circumstances. Lying in bed alone again, I tried to figure out what to do with these feelings of being a leper. The message came that I am not my body – I am my soul.
The dying leaves and shorter spans of sunlight signaled it was time to prepare for hibernation during the harsh New England winter. As the drugs seeped further into my body, my mental clarity and ability to breathe decreased. An asthma inhaler was added to my medications. Like a whale diving deep below the surface of the sea for long periods of time, I was going under and there was nothing I could do except go with the flow.
I found solace in music. It became my lifeline. Hearing it reassured me that there was still someone inside able to hear sound and make a connection with the notes. Rhythmically, Peter Gabriel, Paul Simon, and Pete Townsend fanned my flickering flames. In Rosanna Arquette’s documentary about music, All We Are Saying, she interviewed many artists including punk priestess, Patti Smith, who said, “Music is such a powerful force. Music is the only way … that collectively, we all can understand. Music can heal.”
Echoing that concept, Sting noted, “It’s a kind of religion and religion essentially is about reconnecting. Music is one of the ways we can connect with the world of spirit, with something I don’t even pretend to understand. But I know it’s there, and I know it’s very important to people on the planet.” Amen.
A new year, a new phase of this drug induced state. I’m being sucked dry from the inside, starting from my head. I just thought it was time for new glasses, however, after scanning my eye, the doctor said it was so dry that the surface of the cornea was cratered – a condition called viral keratitus. I started using viscous eye drops that when dry, created spider-like webs in my eyelashes.
My dry lips required frequent chap stick applications. I put together a hydration bag filled with saline nasal spray, hand lotion, lip balm, and eye drops. Wearing it over my shoulder, so that the thin strap crossed my chest and back, the bag went everywhere with me as I crept around the house. I wondered how many other lab rats in this study were experiencing similar reactions.
Watching me succumb to the effects of the drugs, Sam was having a tough time emotionally and acting out in school. Wondering whether it was puberty or the fact that his father is rarely around and his mother has become a female version of Ozzie Osbourne, complete with unsure movements and spaciness, I sent an e-mail to his teachers explaining the current circumstances and enlisted their help – it takes a village.
Heavy hearted, I woke up at six a.m. one morning to get Sam ready for school. Bill was in Rochester and then heading to Utica. It’s cold, Sam is unhappy with me because I questioned him about the television being on before he was fully ready for school. After reading our agreement regarding morning television, he retorted, “Dad let’s me.” Great….
After Sam left, I sat downstairs in the living room, put my headphones on, and listened to Pete Townshend sing, “Let my love open the door.” All I have to say is, ‘come on in’. I looked at my name printed in the magazine’s masthead listing me as assistant editor. I recall driving around town interviewing people, writing articles on deadline, and happily reading the published results. Where is that woman? Where is the energy that allowed me to function? Where’s my hair?
“A permanent tint of what looks like diluted dried blood colors my eyelids and a dark smudge defines the area between my eyes and cheeks. Fluids of varying thickness seep from the openings in my face. I must constantly peer into a mirror to clean the dried excess of lubricating drops required to ease the viral keratitus that resides in my eyes or the dried skin around my nostrils and lips.
Peter Gabriel sings, “…in your eyes/the light the heat/in your eyes/I am complete…” I can’t imagine what people see in my eyes. When I stand in front of the mirror, two dull, lifeless eyes look back at a woman I no longer know. “I am not the person I was…perhaps a good thing – a new Pam in the making. I am Frankenstina,” reads a February journal entry.
Cold came in from every seam of the house. Usually, I put the storm windows in and although it is painfully apparent that it would have reduced the cold, I just didn’t have the energy. Bill isn’t around enough to notice the temperature. I felt so wasteful, knowing that we could have done more to insulate, saving precious energy.
I missed the Sonoran desert and the intense heat of the sun that I left behind years ago to be with Bill on the East Coast. The effort to will the warmth and serenity I felt in Tucson eluded me. And so I curled into a ball under blankets in my bed listening to Hot Tuna play, “Sunny Day Strut,” an instrumental piece that makes my soul soar – until it ends.
Reduced to a blubbering mass of molecules, I allow myself to wallow in the frustration of my limitations. It’s not a frequent indulgence. Today however, despite the emptiness in my heart, I am full of tears, and my body is numb from the cold that surrounds me. A tornado of sadness swirls inside. Removed from the living, I forced myself to write through the physical fatigue and mental haze. Paul Simon sings, “Why deny the obvious, child?” Resisting is futile.
As January ends, the war drums were beating. The Buffalo Springfield song “For What it’s Worth” an anthem of the 60s, resonates with relevance today: “There’s somethin’ happening here/What it is ain’t exactly clear/There’s a man with a gun over there/Tellin’ me I gotta beware/I think it’s time we stop/Hey, what’s that sound/Everybody look what’s going down.” Gathered in cities around the world people protested the possibility of war. This administration has provided only rhetoric, no substance, and no evidence to justify a preemptive strike. It’s insanity.
The first virtual antiwar demonstration on February 26, 2003 allowed me to join the protest from my bed. The e-mail from moveon.org asked us to call our Congressional representatives and one Senate leader. Although alone, I felt like I was a part of something.
The meditation for March in my One Spirit Book of Days is the Energizing Shower, appropriate considering my dried insides. Sitting, breathing deeply, “…imagine cleansing spring water pouring into the crown of your head, flowing deep into your being, and then pouring out through your feet…” Mentally my parched insides soak in the imaginary water like a sponge – making me momentarily moist like ripe fruit.
Opening my eyes, I was still the being that required hydration for my eyes, nose, and cracked, cold sore marred lips. I swished L-Glutamine inside my mouth, a non-essential amino acid that my drug study nurse suggested, to get rid of the sores on the sides and bottom of my tongue. Then for the next half an hour, I grab tissue after tissue, catching the fluids that flowed from eye sockets, nasal cavity, and mouth. Charming.
Seven more weeks on these wacky drugs. I think back to the encouraging phone call from my father on the seventh week at the beginning of this treatment. Like a desert cactus, this lab rat has learned to survive on so little and for that I am grateful. I no longer hoped for warmth from my husband, who checked out emotionally, long ago. Physically depleted, there is nothing I can do. Accept, accept, accept.
From my journal, “Mornings begin with muscle spasms, banging headaches and feeling like I am moving through mud. With five weeks left, mental clarity eludes me, tiredness envelops me, and yet, sleep denies me. I sustain myself with hugs from Sam, and my silent conversations with God, whose responses I know when I see or hear them.”
On May 16, 2003, I took my final shot. Although proud of myself for finishing the trial, I felt like I was sitting at the bottom of a ravine rubbing my throbbing head trying to figure out how I got there and with a groan, looked at the terrain I had to climb to get back to level ground.
Within months, Bill asked for a separation and moved to an apartment. I cried, nodded, and stepped aside, believing that everything happens for a reason. My heart was broken, but I blessed his decision, because isn’t that what love does?
I spent the summer recuperating physically and emotionally. As part of rebuilding my obliterated immune system, essential in strengthening a body’s defense against illness, I went back to Spontaneous Healing. The book opened to the page marked with a worn, bright pink post it. Seeing “6. REGARD ILLNESS AS A GIFT,” I closed my eyes, took a deep breath, and silently chanted my mantra. When I opened them, my eyes fell on: “5. DO NOT HESITATE TO MAKE RADICAL LIFE CHANGES.”
Continuing, I read, “Many of the successful patients I have known are not the same people they were at the onset of illness. Their search for healing made them aware that they had to make significant changes in their lives: changes in relationships, jobs, places of residence, diet… In retrospect, they see these changes as steps that were necessary to personal growth, but at the time, the process was wrenching.
Change is always difficult; major change can be very painful. Illness often forces us to look at issues and conflicts in their lives that we have ignored in the hope that they would disappear. Continuing to ignore them may block any possibility of spontaneous healing, while willingness to change may be a strong predictor of success.” Hmmmm.
Healing has been a turbulent journey, including counseling and drugs for Sam, then 16, and me. After nearly a year of minimal human contact, I made my social re-entry by getting involved in New Hampshire’s first-in-the-nation-presidential primary, ultimately becoming the New Hampshire correspondence director of retired General Wesley Clark’s campaign.
Bill took a second chance on marriage with his first love from high school. The once white walls in our house, the only color Bill allowed, were repainted with colors of the desert. Sam is growing into a kind, responsible human being, and together we share a love of Matisyahu’s music. Performing music described as Hasidic reggae, Matisyahu’s songs are soul inspiring and great for dancing. I heard “King without a Crown” on the radio a couple weeks before leaving for a Caribbean vacation and was stunned by the joy and hope that I felt in his music.
It was my first vacation as a single woman – my celebration of survival. The island sun sparked my sputtering spirit; life pulsated through me as I danced to reggae rhythms in the crowded beach bars. It was my bon voyage to the diminishing dissonant note of disease and treatment. Although relevant to the whole song, its tonal contributions are muted in relation to the barely perceptible sound of the next note. I endured and am able to physically and emotionally function in the world again. Still wobbly, I am getting stronger and surer of who I am becoming.
Evidenced by four media mentions since September 25, 2006, news of hep C is seeping into our cultural mainstream. Steven Tyler, lead singer of Aerosmith, announced that three years ago he was diagnosed and treated for hepatitis C. Stan Miller, a 51-year-old news anchor for Channel 8 in San Diego was talking about the disease and treatment on the air,[1] and in my mind, the most significant reference was in the opening of the October 29 episode of Desperate Housewives whenSusan describes Edie as, “Just a neighbor. She visits Mike after her hepatitis C treatments.” [2]
I recently had a physical and the blood test revealed that after four years, I remain hep C free. The disease is real and many people are living their lives unaware that this insidious virus is lurking in their liver, silently scarring its healthy tissue. A simple blood test confirms its presence and like many other diseases, early detection is critical as it may prevent the catastrophic need for a liver transplant. Get tested and if positive, you will have to decide to treat or not to treat. And the beat goes on.
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