warrior*pirate*monk

Hep C – Changing Your Whole Life

When someone says they “changed their life” in response to this disease, what exactly does that mean? My life changes have been both deliberate and haphazard, an adding in of some elements but equally a taking away of others. I move forward and back, prey to false starts and unreasonable ambitions. I want to live “perfectly” and, spinning with my dime, immediately resent and resist perfection. I want to eliminate stress and suddenly create more with my attempts at transformation. It becomes the crazy chaos journey of a blindfolded traveler alone on a renegade train. There is no conductor. There is no map. I am making up the language that will be spoken at my destination, a place that does not yet exist.

I quit drinking. This was the most fundamental change, for me. It required more than empowered decision. It demanded letting go of some of my beloved friends, whose lifestyles were defined by alcohol. I was not a drinker who drank because she was sad or angry; I drank to celebrate life, to relax, to feel free and reckless, to counter the seriousness of my nature.

We live in a culture in which most social groups drink alcohol joyfully to spend time together. My friends drank at every gathering – bowling, playing pool in a bar, playing cards in my dining room, or celebrating a wedding. Although I tried to retain many of these folks through my changes, there were many tedious coffee dates in which I found people glancing at their watches or making stilted conversation, biding their time loyally until they could get to the real party. I stopped calling, they stopped calling, and they were lost to me.

I was left lonely.

I had to find meaning and happiness in sobriety. It felt awkward, and even though I have always enjoyed hiking through the autumn woods, or reading cuddled under a quilt on the comfy chair, or playing didge mightily in my empty house, I had to suddenly be comfortable with that being it...all...the fun. It is a quieter sort of fun, mellow and restrained. Without alcohol, or the people who had accompanied it, I found that the air grew still around me. There wasn’t raucous laughter, head-thrown-back frivolity. My day was happy because the mist looked beautiful amongst the fall trees, and somehow, this felt embarrassing, as though my solitude was a punishment and I was only pretending to happiness.

Slowly, I am building different sorts of friendships. Serious, grown-up feeling friendships. Productive, sensible friendships. They are not the same.

I have to allow myself to feel the loss, to mourn it, and to also accept it. It was a death in my family. My old self lies bared in the coffin, arms folded across her chest. I cannot expect to be unchanged by it.

People ask me “why don’t you simply hang out with the same people and just not drink?” If you are struggling with the same issues, you know the answer to that. Because it can’t ever be the same. Because it would be like pretending everything hadn’t changed, when it has. Because when you’re sober in a crowd of beer inspired merriment, it just isn’t as funny. Often, it is not funny at all.

Sober, you suddenly see through the earnest, repeated slurred speeches. Undrunk, you know that the project they are planning will not happen, the number you gave him will not be called. When you’re suddenly thinking about life and death and meaning, you just don’t care if that cute guy standing over by the bar checked out your friend or not.

It is a crisis of meaning.

The rest has been more straightforward. I take vitamins and herbs, started going to the gym, get alternative healing treatments, meditate, and eat organic healthy food. I quit eating junk food and fast food and rarely drink a soda. I don’t eat meat, although I eat some fish and poultry. I don’t use any drugs, including quitting my psychomeds for ADHD and rarely taking painkillers.

I’ve found it interesting to experiment with myself, an entertainment really. I tried eating raw for a while, macrobiotic for a couple of months, and, last year, went 100% vegan for six months. My final decision on these eating experiments was that, for me, any system of eating which complicates my relationships with others is not viable. If, when I am eating at someone’s home, I have to bring all my food in little Tupperwares, I am sacrificing an aspect of community that I don’t care to relinquish. In this new place, this uncharted territory, in which I so consciously value my time with other people, I need to be able to break bread with them on occasion without fishing the package from the garbage to scrutinize the ingredients.

No, these steps to health, to caring for my body, were not the hard part. The exhausting, difficult, terrifying changes that have emerged from this disease have been in the question of what am I doing here on this Earth, what my purpose is, and whether I will have fulfilled it when I die.

I find that I can’t concentrate on those questions or their answers while bowling with the drunken rowdies.

And so the task seems to be in getting to know myself all over again, learning myself as though I were a fascinating stranger, which, really, I am.

Life is only the becoming, and the becoming again, and again. 

Hep C – Natural/Alternative Healing

 

If you are fully committed to undertaking treatment of your Hepatitis C with Interferon and Ribavirin you might want to stop reading now. Move to another of my posts, and hopefully you will find information and support that will complement your choice of treatments. I don’t want to undermine or discourage your choices; the empowerment of this disease lies in the process of all of us making our own decisions about how to deal with it. I’m not a doctor, and what follows is a very personal essay on choosing to forgo conventional treatment.

I began this blog because I wanted to provide another perspective on possible approaches to having Hep C, and my personal decision has been to challenge the disease using only natural methods. This posting is an explanation of the reasoning that went into that choice, and is being written for those who are trying to figure out whether they want to do conventional or alternative treatment for this disease. One evening of Internet surfing will supply you with hundreds of sites that propose using drug therapy in the fight against Hep C; far fewer discuss and support the concept of all-natural healing.

Since I have been diagnosed, I have attempted a myriad of alternative therapies with the goal of strengthening my body so as to make space for it to heal itself. Does that mean that I expect the outcome to be a final extermination of the virus, as is the hope in conventional therapy? No. My goal is simply to build up the positive aspects of my health so that I am able to live in a balanced, non-destructive symbiosis with the virus that inhabits me. I want my liver to remain undamaged, even while it hosts a potentially dangerous viral tenant. If I am successful, I will live to a ripe old age, fully active and alert, and die peacefully with my impotent little Hep C viruses passing with me.

I do not rule out the possibility of ever attempting chemical therapies. Right now, with what is currently available, I find the odds too unwieldy, the costs too high, and am not willing to pay the price in my well being for what strikes me as a chancy outcome. If those statistics change or if my health becomes too precarious to trust to my own handling, I will certainly turn my body over to western medicine and see where it takes me. We all hope that new drugs will be discovered that have fewer side effects and higher success rates. Until then, I feel more confident in my own capacity to heal using natural methods than through the use of highly toxic drug therapies.

I do go and get regular blood work done, so I can monitor my progress honestly. I have had to push to get my full lab results sent directly to me, rather than being buried in my files and synopsized in vague letters from doctors. I wanted numbers, numbers to track and chart and use as mile markers as I traveled through this. It was important to me to have a way to measure my situation beyond subjectivity. I got a liver biopsy in my second year of knowing I carried Hep C, to gather even more information. I want to carefully use those aspects of western medicine available to enhance my understanding of my disease.

I decided not to do conventional drug therapy largely because I do not feel that the success rate is proportional to the potential side effects. I did a wide-ranging amount of research and find that, although figures vary slightly between different sources, the success rate (measured by being free of the virus, or clearing) is only at about 30% for people who have my genotype, 1a. I’m a bit of a risk-taker, but if you asked me to invest in your enterprise and there was only a 30% chance of success, I would hold onto my money. Other genotypes have more promising success rates, and, being of a logical bent, I might feel differently if I were looking at a 50% or 80% possibility of successfully clearing the virus. Tell me I have a thirty percent chance of standing up and walking away unbroken when I jump from this building, and, unless fire is lapping fiercely at my heels, I would try to figure another way out.

The costs of attempting the treatment are high. If I could have a go at it with no real risk to myself, I would certainly try, even with those odds, preparing myself for the possibility of its failure. Unfortunately, the chemicals used to treat the disease are powerful ones. I can’t quite get my head around the concept of pumping my already challenged liver full of toxic chemicals and hoping it gets better. It is the mighty liver that detoxifies the body, and so, it seems to me, I would be highly stressing an already stressed organ.

Here is a list, pulled from the AIDS Treatment Data Network website, of the potential side effects of Interferon and Ribavirin:

“The most common side effects of pegylated interferon include: a decrease in white blood cells and platelets, anemia, nausea, diarrhea, fever, chills, muscle and joint pain, difficulty in concentrating, thyroid dysfunction, hair loss, sleeplessness, irritability, mild to serious depression, and rarely, suicidal thoughts. Other serious adverse events include bone marrow toxicity, cardiovascular disorders, hypersensitivity, endocrine disorders, pulmonary disorders, colitis, pancreatitis, and ophthalmologic disorders (eye and vision problems). Pegylated interferon may also cause or make worse fatal or life-threatening neuropsychiatric, autoimmune, ischemic, and infectious disorders.

Side effects of ribavirin include nausea and anemia. Anemia caused by ribavirin is usually easily treatable. Ribavirin can also cause birth defects.”

Huh. Well. I’m just not feeling like this is a good way to heal my body.

Of course I second-guess myself. I fantasize that I would be one of the 30% for whom all these side effects would eventually be a dim memory, my body fully cleared of the virus, everything as it once was. Then I put the two sets of concerns together and wonder, even if I were one of the lucky folks for whom the medicines are effective, what the impact on my whole body would be in the long term. I don’t want to rid myself of this virus, with whom I am co-existing somewhat successfully, and find myself some years down the road dealing with an auto-immune disorder kicked into life by taking Interferon. It simply seems counter-intuitive to me to take such a profoundly dangerous drug to restore myself.

More than anything, I think the potential psychiatric effects of the drug scare me. Having read many posts on Hep C chat boards, it seems that this is not a rare outcome. There is a large body of anecdotal experience that seems to suggest that many steady psyches are led into rage and despair with the use of this drug. While I value my liver health, and want more than anything to not be dealing with this virus, I am far more terrified at the thought of losing my hold on my psycho-emotional wellness. I trust my mental health, questionable as it may seem to outsiders, and the idea of having to continue dealing with this illness (if I ended up in the larger 70% category) without all my emotional resources strikes me as a massive step backward.

Ultimately, there is no way of knowing whether I am right in my decision. I am trusting my intuition, which is something we are seldom encouraged to do in this culture. I try to remain flexible and open to new information, willing to change my mind if necessary. Even more than having faith in my intuition, I have to trust in the innate wisdom of the universe. I have to believe that the body was designed to heal itself, and that there are energetic forces within the body capable of powerful impact. I have to trust that good food heals and happiness heals and herbs heal and nature heals and love heals. I work hard to believe that the universe wants me to survive, that I am necessary to the design of the cosmos, and that my ending will come at the perfect and appropriate moment.

Some days these are hard things to hold onto, and some days they feel like the only possible truths.

Stigma and Hepatitis C

It is the disease of junkies. It is the gutter-punk disease, the “for-sure” of the too-thin heroin addict in the street. It was passed in the tattoo studio, in the prison cell, in the shooting gallery, or in the darkened hotel room. We speak quietly to our dentist, this new one, informing him responsibly, watching the shadow judgment pass over his face. Hep C is the secret we contain as we move through our days, because its release will brand us with a past that makes people wonder. We wear its stigma under our shirts.

There are, of course, many ways to get this disease. Some of us got it during blood transfusions before blood banks could test for it. Some of us got it from long ago love affairs or from the shared razors of roommates. Some will never know how it entered their bodies. Many of us were infected before the disease was discovered or named.

Yet...

It has a residual sheen on it, a sunken, derelict, drug-addled identity. And now, even as we struggle with the realities of living with this disease, we must also contend with its reputation, and thus, our own.

When I was diagnosed, at thirty-five, I had already carried Hep C for nineteen years. I acquired it at sixteen, sharing needles with teenaged friends in Boulder, Colorado. I was not a junkie. I was a teenager – rebellious, reckless, and invincible, as teenagers are. We shot cocaine, not heroin - I would have been scared of heroin – and had this “fashion” not swept my high school, back in 1982 when such things seemed reasonable, I would likely never have sought out such an experience.

In my adulthood, I put all the confusion of my adolescence behind me. It was a distant memory, a faded photograph, a movie I couldn’t quite remember. Then, with my Hepatitis diagnosis, suddenly my past was omnipresent, ascendant and inescapable. In having to tell people about my diagnosis, I was confronted with the horror of also having to tell them the story of my past, a story I had long ago buried and abandoned. My whole sense of identity shifted, and where I was one day, a competent and loving mother, a hard worker, a successful writer, and an on-time-to-appointments, don’t-forget-to-vote kind of citizen, I was, in the next, an ex-addict. I felt it as shame, and it distorted my relationship with my illness and how I approached people with it.

If I had cancer, I would have told people. Well, maybe not if it was lung cancer, because I would be afraid they would secretly think “oh, that’s sad, but she did it to herself, smoking all those years.” This is the crux of my embarrassment with Hep C, my fear that people’s sympathy or support is tempered with blame. It is a disease that is perceived as being the result of lifestyle choices – like HIV, like lung cancer in a smoker.

I didn’t choose this, of course. Hep C had not even been discovered back in those careless high school days; AIDS had yet to make its public appearance back in the baby eighties. We knew what we were doing was bad, yes, so leather-cool bad, and that it was risky – we had all seen that scene in One Flew Over the Cuckoo’s Nest where Billy kills himself by shooting the air bubble, so we obsessively tapped our needles to free every drop of air. But then, after the evening, when you hadn’t died, you knew you were okay, and there was no worry that twenty years later you would discover you had been infected by a disease. We were innocents, our pseudo-tough marred by giggles, playing at grown-up.

I had to accept my own story. We all do. None of us are responsible for the accident of our births – this historical moment or that one, this loving family or that terror-father, this home with a rec room or that cold basement apartment. We were children, shaped by our worlds. We are adults, shaped by our childhoods. Every single belief or perception we hold came from somewhere – a book we read, a joke we were told, a person we loved, a prayer not answered. We cannot be so self-congratulatory that we believe we have formulated, all alone, our beings. We are sculpted by a thousand forces, and in crediting them, we can also take from ourselves the weighty bulk of blame we are so used to being crushed by.

Does this mean then that we are absolved from responsibility for what we have become? Of course not. We, alone, have made many choices – some have taken us where we wanted to go, some have left us trapped in places we never thought we’d enter. But the material that goes into that choice making is largely pre-scripted, and much of it came to us of its own accord, from those who surrounded us. In choice-making, we have at our disposal only the information we have been given.

What does this have to do with the stigma of Hepatitis C? I’ve found that I will never be able to look anyone in the eye without shame until I have forgiven myself for all my mistakes and inadequacies. The judgment I feel from others is just a reflection of what I am feeling internally about myself. When I am right with myself, I can face even the sternest disapproval with dignity and, in some cases, even humor.

It became clear to me that I had to forgive myself for shame I didn’t even realize I was carrying. Somewhere, deep inside, I was angry at myself for being the person I had been and not having been more studious, more centered. I had begun to consider my experimentation with drugs a weakness or a deficiency in character. Now, looking back, I realize that I wouldn’t want it any other way. I am that girl. Her bravery then, and yes, as anyone knows who has been hard-core in any way, she was brave, was the foundation for the incredible bravery I carry now. Her endless curiosity, her joy in discovering new possibilities and people and environments - that is a good thing. I admire that in her, in me.

And so our task becomes a total acceptance of all our past selves. If it took Hep C to get us to a place in which we are forced to do this inner work, well, destiny is funny that way.

We live in a culture that allows us to remake ourselves over and over. Few of us live in a village so small that everyone has known us since birth, a womb environment in which we are safe and defined. We live in a moment on this planet in which we are astoundingly mobile, transitioning from city to city, from partner to partner, job to job, hobby to hobby, even family to family. As we build each new identity, we tend to simply let parts of our past drop away, especially the parts we are uncomfortable with.

We are all those people; we are every period of our life added together. The love affair we try not to remember because it hurt so badly, the office building we avoid because it reminds us of that time we were fired from that job, or the sweater we fish from the bottom of the closet to stuff into the Goodwill bag because we wore it on the date with that creepy guy – these are all memories that we somehow need to include in our story. Have you ever seen a movie composed purely of triumphs and sunsets? All the most moving and meaningful human drama is complicated and dichotomous. We wear the scars of our past, and they ornament us and make us more than just simple compilations of cells. We are absolutely distinguished from each other by the thousand tiny details of our lives and how they live in us.

I am a competent and loving mother, and I used hard drugs as a teenager. I am an organic produce eating vegetarian, and I have Hepatitis C. I am an excellent worker, and I need more sick time than most people. I am intelligent and thoughtful, and I have made some bad decisions in my life. I am brave, and I am frightened.

I am human.

You will see that shadow pass across the dentist’s face again. Someday, someone might decide not to date you because you have Hep C. You might be in a job in which you work with children, and if your employer finds out about your disease, they might be nervous that in a natural disaster or an accident of massive proportion, you might mix blood with one of your charges.

I have sat through work sponsored safety meetings, the ones where they go over the protocol for dealing with blood spills, and felt my face go warm as they talked about “the risk of infection.” I evade the blood drive, carry plastic gloves in my pack when I go backpacking, and tell some people I have a “chronic liver condition that I acquired in childhood”.

This is the reality of our situation. We will sometimes feel shame, and we will sometimes keep quiet. Other times, when we are feeling strong and comfortable, we will educate, will speak freely, and will share our experience and open doors that were once closed. Both these things can happen in a single day, and both of them are okay.

This is just life, and we are alive.

Hep C – Working with Images

 

Working with images is a powerful tool for healing and for transformation. As I struggled with changing my lifestyle, I’ve found my imagination to be a critical ally. We cannot become anything we cannot imagine. I consider imagery to be as integral to my healing as eating healthy food or taking supplements. Developing images that sustain you on your journey costs nothing, is a relaxing creative activity, and can build up resources inside you that continue working toward change even when you are engaged with other aspects of your life.

One of the first places I realized I needed an image overhaul was in my relationship to alcohol, as I tried to quit drinking. I found myself trapped in a place of resentment, feeling that the demand to stop drinking was being imposed on me against my will. My mind was full to crowding with images of the pleasures of alcohol – pictures of people laughing in groups as they drank, of red wine in a sparkling wineglass with the candlelight hitting it just so. My new alternative world was an empty place – tasteless like water is tasteless, silent and vacant.

I had to find a way to transfer my allegiance. If I had to abandon my pirate self, I was unwilling to become the staid accountant teetotaler. For someone with as vivid an imagination as I had through my childhood, I was surprisingly stuck with limited images. I realized that I had to create a non-drinking identity for myself that appealed to the part of me that wanted to be the adventurer, the hard-core other-side-of-the-law take-the-dare-first hip-flask-wielding character.

            The real question formed: why does this particular character have to drink alcohol? Surely this is a function of our media culture. The outlaw consumes all things, smokes cigarettes and takes the women without asking and pulls out the gun when more of anything is necessary. Swigging from the hip flask is just one more macho prop in that. I started to wonder, what do I end up with if I take the alcohol out of that picture? Maybe I don’t need another type of image; maybe I just need another kind of outlaw.

I would have to become some even more radical kind of warrior, somebody who doesn’t drink because they prefer to be alert all the time, ready in an instant, someone who can’t afford to relax their perimeter. The master warrior, the kung-fu monk.

This extreme warrior has to be physically strong. This new version of outlaw refuses to participate in the aspects of the world that promote disease in the body – processed foods, sugars, alcohol. It is not a model of abstinence in which one cannot; it is a model in which I resist by choosing not to. The system wants us all as weakened couch potatoes, glued to the television, using our maxed out credit cards to order products which promise us strong muscles, but which will fail us. Our ill health is their profit. My new warrior refuses to participate.

She is willing to be uncomfortable. She is able to fast for days and sleep on the ground and climb mountains without gasping for air. (My psyche is complex. I have to go all the way or it won’t participate.)

Our extreme warrior has to be able to meditate and use energy as power. She knows her healing herbs, can generate energy from her hands to heal people, and knows how to be silent for long periods of time. She can move in any environment, wise and capable.

And there she is. In spending time, thinking her into existence, I have made her an aspect of myself. She becomes one of the voices in my head, and as time passes and I listen to that voice and develop the parts of myself she directs, she and I become more and more merged.

Suddenly, I am in a bar with friends, drinking my Nalgene of water, and the drunks look sloppy. Oddly, I am hiking a mountain, drinking tea in the teahouse, or doing yoga in the evenings. And, as with all new identities, as I allow myself to spend time being her, I become her. Right now, tonight, given the choice, with no outside influence, I would choose to stay home and play my didge to going out with my friends to a bar. She would choose this. We, together, choose this.

I don’t understand the mechanism involved, and don’t know that there is any real methodology to the process. I created an image of what I want to aspire to – as a personality, as a being – an image that appeals to certain tendencies in me. I gave this imaginary being details; she wears my face, but she is more than me, full of traits and qualities that, in her, seem attractive. I think about her when I am relaxing or meditating, and intentionally try to call the image of her up when I have to make a decision. I ponder what she would do-say-think if she were I and I were she. Then I do it, say it, think it. Slowly, I call upon her less, because I find my values and priorities are changing of their own volition. Each movement toward being her, being like her, prepares me for the next.

Take the time to develop an inner guide for yourself. Develop him or her as someone who is everything you’ve ever wanted to be. Use traits stolen from movies, from books, from friends, from the guy sitting near you on the bus. Notice the way she pushes her hair behind her ear when she reads, the way she kneels down to wash her wooden bowl in the stream, the way he mounts his motorcycle. Then get to know this imaginary friend, befriend him, turn to him for advice or direction whenever you are lost.

This is your higher self - your possibilities and your aspirations all rolled into an incredible being that belongs exclusively and entirely to you. He will teach you everything you need to know to make changes in your life. She will change as you change, expanding and morphing into even more for you to reach toward. The more time you devote to developing the image of your guide, the more power this image will have in your life. Trust her, as she is constructed of all your possibilities.

 

Hepatitis C - Fatigue

It is very difficult to have an invisible illness. I often wish there were something, anything - a rash, a rattling cough – that would signal to those around me that I am, indeed, sick. Instead, the most dominant symptom of this illness is the dense fatigue that floods me randomly, unexpectedly, and regularly. Fatigue is not heart wrenching, or dramatic. More often than not, I probably appear to be lazy. Nothing could be further from the truth. I push beyond fatigue that would send the faint-hearted scrambling to their cozy beds. I dig deep into my reserves of will just to get through a long day, sometimes. Other days, I am capable of anything. Even those who live with me are prone to forget my challenges, and find it irritating that I have chosen tonight, when it is my turn to do the dishes, to lie on the couch.

I am not simply lying on the couch. My limbs are leaden. They are fused with the couch. Within moments of settling down, I am taken by sleep. I am exhausted.

For six years, before I was diagnosed with Hep C, I went to doctors and complained of fatigue. It never occurred to any of them to test my blood for Hepatitis. Instead, they would ask me about nutrition, or imply depression. If I mentioned it to my mother, she would say (and as I write this, I can hear it only in her voice), “You just try to do too much. You’re too driven.”

I would, for a moment, believe this, and wonder which of my activities I should drop. Then my mind would puzzle over the fact that other people worked out, many much harder than I. Other women had small children, and worked jobs, and did projects. What in my constitution precluded the busy life that we all lead in these times?

Fatigue is not sleepiness. It makes you stagger sometimes. It feels like a thick transparent curtain your body must pass through. Your eyes are heavy, your joints and muscles hurt, and you feel like time stops in the small aura surrounding your body and keeps moving in the larger world.

The way I have come to understand it, knowing now that I have Hep C, is that my body is working so hard - my internal systems busy climbing mountains and running ultra-endurance events – that the tiredness seeps out from the inside. It is not what I do in a day; it is the longer day of my inner workings that causes this level of fatigue.

I nap. I sleep so deeply that I need multiple alarms to wake in the morning. I push through the curtain when it falls, and find that my mind is dulled with the effort.

Now that I know where this comes from, it frightens me less. Since it remains invisible and inaudible to those around me, I realize that I must take full responsibility for responding to it. I am learning to respect my fatigue, to honor it, to find room in my life to accommodate it.

The first order of business was to try to find a lifestyle that would house my reality. When I was diagnosed, I was working as a writer in the schools, teaching residencies to classrooms of children, leading groups of institutionalized teens. This was challenging work that required me to perform, to be on stage, in the front of the room. At some schools I would teach a third grade class, then a group of fifth graders, and then find myself leading a storytelling workshop for kindergartners in the afternoon. I could not sustain this level of output inside the reality of my limitations.

Since then, I also learned that I am not suited for a nine-to-five job. I just don’t know when I will need to rest, and I found myself taking too much sick time, or comping out hours at night to make up for a lost afternoon. Ultimately, I realized I had to be in business for myself, and have spent the last few years creating a professional situation in which I can work when I feel strong and alert, and rest when I need to.

This process of accepting my reality was not easy for me. I don’t want to admit any limitation; I want to be dynamic and powerful. What I have come to understand is that I can still be dynamic and powerful, if I learn to conserve my energy resources before and after those moments. I might need to work a little less, but by doing so, I am able to reserve the energy to be really extraordinary at what I do. I take time out during my week to care for myself, something I never did before I understood that I was living with a physical challenge. I get a massage, or acupuncture, or go walking in the green, green woods of Oregon on a weekday afternoon. I seek renewal regularly. This is part of my work.

Even people who are not challenged by illness deserve the kind of life I am building for myself. The world we live in is not gentle with us, or kind, or nurturing. Americans find themselves working harder then their parents did, with less economic stability or reward. We push ourselves through longer and longer work weeks, try to attend to the needs of our families in the tiny time left over, and are chained electronically to larger and larger networks of people who demand our attention.

Everyone should find some way to remove themselves from this frenzied existence, just a little, to breathe and play and experience life as it happens. But for us, who are dealing with Hepatitis C, this is no longer just a desirable lifestyle option. It is a matter of life and death.

Your body needs to heal itself every day. Your body is battling to wholeness every day. A body working this hard demands rest and nutritious food and care. Emotionally, living with chronic illness is demanding. Your being needs to rest, your spirit needs joy, and your survival depends on how well you can learn to nurture yourself.

This is a long road. My body has been dealing with this virus for twenty-four years. Imagine having the flu for twenty-four years – would you be sympathetic to the exhaustion of your body after such an ordeal?

How you balance your needs with the impositions of the world will be a central theme as you learn to live with this disease. Just as someone newly challenged by having to move in a wheelchair must allow more time between appointments, as they navigate busses and doors that won’t stay open, you need to give yourself space between obligations and permit yourself to move more slowly through your life.

Again, the gift. The odd and disconcerting gift of this illness.

Slowing into your life, pacing your life to match your being, this is really the work of all human beings, and most of them never have occasion to attempt it. Shape your daily world to meet your needs, and you will find that it does.

Hepatitis C – Walking the Marathon

 

I’m in training to walk a marathon. It is now less than two weeks away. I am supposed to be in the “tapering” phase, which means I am supposed to be lightening my workouts, but in my typical last-minute procrastinator way, I find myself trying to sneak in substantial walks. I am a rule-breaker; as soon as I am told I’m not supposed to be doing something I ache for it. I have spent the whole year trudging through long distance training walks, and now, in these last weeks, forbidden, I find myself flying out the door, desperate to walk until my legs feel shaky. This is my nature.

This will be my first marathon. I have no time aspirations; my only goal is to finish. Two and a half years ago, I tore my calf muscle recklessly sprinting without warming up, so running is not an option for me. It was an excruciating pain, right up there with birthing babies, and the recovery required crutches and months of impaired mobility. Although some folks might have rehabilitated themselves consciously, I simply vowed to stop running. I feel protective of that leg, and want to never feel such pain again.

Thus, I walk. I walk for hours. I walk quickly, and pump my arms when I am on a block without pedestrians. I feel silly arm-pumping if there is anyone to see me. I read books on the body mechanics of walking. I plot routes and trick friends into accompanying me. People agree to a three-hour walk thinking it will be easy. We all walk. Three hours is long and, depending on the terrain, can leave you with your legs sore. Those friends evade me the next time I call.

I am scared. I am scared that I want to accomplish something and will somehow fail. Scared that I will have to crawl toward the finish line in the dark, long after everyone else has gone home. This is an unlikely ending, but possible. The real fear is giving up, that I will hit a point at which I will have to admit my inability to finish and step off the course.

This is a fear that permeates all of my life, and, I presume, the lives of most of us. That large ambition is for others, but that within us lurks some inadequacy that will emerge if challenged. The possibility of failure has prevented me from a thousand adventures, as it likely has for you. What if we have to give up, publicly, and lose face in front of those we love, those we want to admire us?

This fear prevents people from starting their own businesses, from asking the beautiful woman at the bakery for a date, and from attempting graduate school. It keeps us from dancing at weddings, from taking the beginning rock climbing class, and from letting our best friend read the short story we wrote. The fear of failure, of foolishness, of inadequacy, keeps us contained and small.

It is not always visible. If you ask those who love me if I am a fearful person, they will laugh and shake their heads dismissively. Look how brave I am. I play music in front of crowds, I give speeches, and I’ve lived in Africa and traveled through Latin America and played drums on distant sandy beaches. But see, those are things I already knew I could do. They were on my list of possibilities. The very things people admire in me are not really very brave, because they corresponded with my personal gifts. I am comfortable with words, I am a confident traveler, and I feel great joy as I play music.

These adventures are safer for me than they might be for someone else. I am not afraid of failing at them.

            I have a lengthy list of impossibilities. I am afraid of heights, I can explain seriously, so I can NEVER go skydiving or climb high peaks or learn trapeze. My list of nevers drops from above to other earthbound activities, limited by the belief that they will be physically impossible for me – mountain biking, no, it’s just too physical, scuba-diving, no, claustrophobia in the helmet, surfing, no, you had to start as a teen, skateboarding, no, same reason. It goes on and on, things I will never try because I have convinced myself that I cannot do them. They are out of my bounds.

             I am physically strong. I have been a martial artist, a boxer, a swimmer, a backpacker, and a paddler. Why would I be capable of these moments of physicality, and yet be so utterly convinced that I cannot mountain-bike in the beautiful mountains that surround my city?

            Because I’ve never tried it. Because the images of mountain-bikers that I see – through the media and in real life - are mud-splattered, bulging thigh power-athletes who seem fearless, flying down the side of the mountain on the narrow trail. Here though is the truth: they did not fly the first time without crashing. They did not wake up one morning, surprised by the girth of their new thighs, some gift of the thigh-fairy who visited while they slept. They attempted, they crashed, they climbed back on, they crashed, they flew, they crashed spectacularly, and the following weekend, recovered, they found themselves at the trailhead, excited to try again.

            One of the most powerful things I have done for myself in these years since I was diagnosed with Hepatitis C, was to make a list of everything I wanted to do before I die.

            It is a long list, and I included old dreams that I had already fulfilled, just so I could cross a bunch of stuff out and feel amazing about myself. Looking over that list, after I finished, I realized that every goal on it was attainable, easy really. Lots of them required funding I didn’t have right now, but none of them were terrifying.

This was not right.

All of us should have one or two dreams that frighten us. I do want to fly down a mountain – whether on skis or a bike. But it didn’t make it onto my list, because somehow, long ago, I had mentally refused to consider it. It was too scary.

I made another list.

This was the list that I would make if I could really do anything. If I were twenty years old and in amazing physical shape. If I had all the money in the world. If I succeeded in everything I tried.

This was a very different list. It was things my soul desired, but my body had vetoed, in its fear and self-protection. Things I couldn’t consider, because the likelihood of their being unattainable was daunting and discouraging.

I realized that my definition of attainable was skewed.

It is likely unrealistic that I will become a champion mountain biker. I am forty years old, soft in some places, have spent little of my life on a bike, and invested many years pumping poisons into my body. But none of that precludes me having the experience of mountain biking. I can return home at the end of the day, my legs splattered with mud, my arms achy, reaching to lift my bike off the rack on the car, just like other people do. I don’t have to be good at it. I still get to do it.

And so, one of the things that crossed over from the “impossible list” to the “do before I die list” was finishing a marathon. There had to be some adaptations: I will walk instead of run and I will allow myself to take longer than the cut-off time if necessary. But I still get to feel what it feels like to push your body to go that far, am entitled to enjoy the camaraderie and the music and the crowds and the little tables of water. I get to participate in any experience I want to, at whatever level I am capable of. It is my right.

If you will accept such a challenge from me, I propose you do this assignment. Make the list of everything you want to do before you die. Then make the second list, the list of impossible fantasies, the ones that you just can’t do. Move something from the second list to the first, commit to it with all your being, and release your ego from the outcome. If it makes you feel shaky and excited at the same time, then you probably picked the right thing.

This is your only life. Maybe. Throw yourself in and don’t miss any of the secret dreams you forbid yourself so long ago.

Give yourself permission to be the absolute worst tango dancer that has ever existed. Allow yourself to stand crying on the edge of the airplane, whimpering as you force yourself to jump. Demand of yourself that you take the risk, even if you will be the absolute last person crossing the finish line of the marathon. This is your life and nobody else’s. Jump, and the hell with what anybody thinks. You have an absolute and unconditional right to all of your dreams.

 

 

 

 

Hepatitis C - Telling Family and Friends

 

You will, eventually, have to tell most of your family and friends that you have been diagnosed with Hepatitis C. These may be some of the most awkward, most horribly anticipated conversations you will ever initiate in your life. You will likely find yourself almost paralyzed with the inability to bring the subject up to certain people, and when you do finally work yourself up to it will find that these conversations seldom advance in quite the way you imagined them.

It seems self-evident why you’re in the position of bringing up such a difficult subject: not only will you need their support as you travel through this thing, but you need some referencing of their love right now, some reassurance, some help digesting this intense news. Unfortunately, you are also announcing to them that someone they love has suddenly become vulnerable, and that you may get sick and die, requiring their care or leaving them entirely. This is what they will be hearing. Unexpectedly, you can find yourself in the role of comforting them instead of receiving their support. This happened to me so many times you would think I would have begun to expect it, but each time it shocked me and left me feeling empty and hurt afterward.

These are the learnings I took away from those early weeks, when I first began to tell people I loved what was happening to me:

• You are not required to tell everyone right away. Each conversation sapped some of the small strength I had in reserve, after spending most of my power holding myself together enough to move through my daily life while I grieved my own possible dark future and struggled with the realities of my past. These are oddly exhausting conversations. The initial short list of folks you need to talk to about it might only include your spouse and/or your best friend.

• At the time, I felt it necessary to include my children on that list, because I was afraid they would sense my upheaval and make their own assumptions about what was going on (my daughter was nine and my son was fourteen when I was diagnosed; both were very alert to my emotional climates). I was going to need to get them tested as well, and felt an urgency about finding out if they also had the virus. I realize now that I could have waited a month or two; although I was convinced that I would die any minute, I had plenty of time to find my own center before I had “the conversation” with them. Ditto for my mother. I wanted mommy comfort, and didn’t stop to think how difficult it would be for her to hear that her adult daughter was threatened with illness. I had to expend a lot of energy soothing these three and minimizing my own fears, energy I could have better spent on integrating this new reality.

• People talk to each other. As much as none of us want to be discussed without our presence, the reality is that people gravitate toward one another to share tragedy. If I told my mother, I was telling my Aunt Renee, who was telling my Uncle Steve. I spent a lot of time swearing people to secrecy so that I could be the one in charge of framing the information my way. Even though everyone will commit to secrecy, few can maintain it. They have relationships with each other that don’t necessarily include me, and I have no right to prevent them from seeking understanding through their own dialogue. I had to get over my own discomfort with the idea of “being talked about” and accept that some people who weren’t on my short list were, indeed, on the short lists of people I had needed to share with.

• Get as many facts as you can to work with. If you are going to tell your spouse, be ready to also throw down some statistics about the likelihood of sexual transmission. If you are going to tell your loving grandmother, make sure you have solid survival rate statistics with which to reassure her (nobody wants to freak out grandma). As the weeks progressed, I was able to pass on website information and even books to people who were particularly close to me. Your mother is going to want to look it up on the web. They need to know what you’re (they’re) dealing with. Take some control here so that they go to straightforward websites with real facts on them. There’s a lot of misinformation and overly dire presentations out there – direct them somewhere positive.

• Pick your moments wisely. Crowded restaurants – no. When they are headed out to work – no. On the telephone – not unless they live too far away for a person-to-person talk. Even though   you may want this to be a minor bump in the road, to the folks you are telling it is akin to saying, “just wanted to let you know I have terminal colon cancer.” You won’t have the chance to get to the part about how positive the survival statistics are; they will already be crying.

• Conversely, some of the more stalwart amongst your inner circle will not react at all. This is profoundly disconcerting, especially if you’ve spent the last three of these “heavy conversations” passing someone tissues and holding them as they cry. Some people cannot process this in front of you. They will crack open their beer can and turn the conversation to a story about their friend Joe. This feels devastating and rejecting, but remind yourself that we all have different degrees of open presence and that some people deal with their fears absolutely privately. I came to understand that this sort of reaction didn’t mean the person loved me less; it often meant they had so much fear about the possibility of losing me that they couldn’t let themselves crack open. Take a deep breath.  They may prove intensely loyal and supportive after a time, or you may lose them entirely.  You will not find comfort or strength in everyone.

• If you’re not ready to tell someone, don’t. I had friends - close and loved friends - whom I did not tell for years. I just wanted some people in my life who didn’t know, for whom everything was “as it had been,” and who I wouldn’t worry were perceiving me differently. I also chose not to be open about having HCV at work, and thus was prevented from sharing this information with my work friends (because there are not really many secret-keepers in our world). The only downside to this was that, years later, when I did finally find an opportune moment to share my experience, I felt they were somehow hurt that I hadn’t told them sooner.

• Most of all, remember that one of the major themes of living with Hep C is learning to conserve your strength and use it wisely. You have a right to measure the amount of times you must steel yourself for a conversation that is on a heaviness level equal to coming out as gay or telling someone you are breaking up with them. Having one conversation at that level of depth and intimacy in a week is intense, five is difficult, and ten is marathon level debilitating. You have plenty of time; safeguard your energy.

Right now, the most important person in this story is you. You might need to be held, you need to let yourself feel fear and sadness, and you need someone to give you strength and hope. Your loved ones might not be able to do any of this right away.

You have two options. One is to find a way to ask for what you need as part of your presentation – “I know you’re scared for me, but I’m scared for me too. I need you to just hold me for a second and tell me that everything’s going to be okay.” You know best who of all your people might be able to do this for you.

The second possibility is to allow someone who is not part of your inner circle to take the role of support. After a couple months of telling my friends and family and not really getting what I needed, I went to a therapist who specialized in people dealing with chronic illness. I don’t know that she gave me any specific wisdom about my situation, and she certainly didn’t hold me and tell me it would be okay, but it was really helpful for me to have someone I could talk to whom I didn’t need to reassure. I also paid for a couple of massages, just to get that sensation of being taken care of physically.

Hepatitis C is not a death sentence. You will have to commit yourself to building and protecting your health in a new way, and may need to make some drastic lifestyle changes as you move into living with this disease, but it is attainable. You will need your community to support you, and they, seeing you face this obstacle with courage, will also grow from it. We are all interconnected, and it is the real stuff, the true-life stuff, that binds us and bonds us together.

Alcohol and Hepatitis C - Moderation vs. Abstinence

 

You can look up every obscure website on Hepatitis C, and will be able to garner support for either position. I found plenty of websites and books that suggested moderation in alcohol consumption as an appropriate choice for someone with Hep C. The fact that I went to such lengths to get confirmation for this stance implies that my struggle with the alcohol question was complicated. I didn’t want to quit drinking, and I wanted that to be okay.

As you can probably guess from the tone of the previous paragraph, eventually I had to accept that I needed to be abstinent from alcohol. This realization came about only after four years of veering between the two positions – abstinent for three months, six months, nine months and then a phase of “moderate” drinking. The difficulty was that there is no universal definition of the word moderate, and, well, in my world, it meant many things not intended by the medical professionals who endorsed it.

I was formed by my culture, and in the late seventies and early eighties when I lived my adolescence, drugs and alcohol defined youth sub-culture. As an American teen, it went beyond experimentation. I used no more or less than my circle of friends, but we “partied hard” and made this a central part of our identities. As I grew to adulthood, I let go of the more serious of my drug interests and built a more focused life. Nonetheless, at thirty-five, at the point I was diagnosed with Hepatitis C, I drank beer regularly.

I live in the Pacific Northwest. In our rainy and dynamic city, fine craft-brewed beers are as ubiquitous as the cafes that crowd every corner. As a musician, I spent a lot of time in local bars, playing music and receiving drink tickets in exchange. I went to shows and drank beer, played cards at home with friends on rainy weeknights and drank beer, sat outside in bar patios during the rare, sunny summer months and drank beer. I didn’t drink hard alcohol, or drink to vomiting, or stagger home with strangers. We all drank our finely brewed beer in a healthy way – with interesting and intelligent people, thoughtfully holding back if we were the designated drivers, moderate.

Yet, I knew, sitting with my golden brew in hand, that this was not what the websites meant – that choosing organic beer over whiskey did not make me a moderate drinker.

So, I started self-regulating. Beer or wine only was a no-brainer, but I clearly couldn’t drink with friends three, four, five times a week. One or two an evening was moderate, but, hey, how did this third pint get in my hand? Well, I’ve been here for five hours, played a show, that’s a long span. Suddenly it was a complex list of rules, and I found myself cheating. I had only myself to answer to, and I am a clever manipulator of my own truths.

So I tightened the boundaries. I decided that “moderate” meant you only drank on special occasions. I had met people who only drank at celebrations, who barely drank at all; they were surely the moderate drinkers I could emulate.

A holiday would approach. For weeks I would anticipate, plan – on Christmas I am allowed a glass of red wine. My interpretations of moderate were the ravings of an addict mind, full of the making of rules, the codicils to those rules, the clauses that allowed their breakage. Surely a glass of red wine on Christmas is moderate, and how does one drink a single glass of wine anyway? I’m not wasting the bottle, and here we are, my love and I, sitting on the front porch in the cold darkness, laughing and drinking wine, and I am warm, and we are close, and laughing is easy and there’s another bottle in the cabinet, and it is Christmas. Tomorrow is Boxing Day. Saturday is the weekend that goes with Christmas. A beer on your birthday, that’s moderate, if it is organic, well, if it’s organic, two is okay. This is also my birthday party, although my birthday is one month past, but these people weren’t able to come to that party, and look they’ve brought me presents, so this is definitely my birthday.

And so it went. For years. Rules and their breaking. Guilt and its making. Shame and fear, and wanting to break out of my solitude and then wrapping myself up in it again to keep myself safe. Through it all, my friends and loved ones believing the things I said: “don’t worry, it’s okay, the liver biopsy shows that I’m a survivor” or “livers regenerate and this seven months of abstinence mean I’m starting with a basically fresh liver.” They believed me because they wanted to believe me, because those times on the porch, or in the bar playing pool, or toasting each other in the fine restaurant were happy and important for them too. Because no one who loved me wanted to admit I might be dying.

Finally I realized that in trying to maintain this position, I was straddling two worlds and that as the gap between them grew, I was about to lose my balance and fall into the yawning chasm in the middle. I was afraid of who I would be if I chose abstinence. I was afraid that if I killed that pirate part of me, that reckless and wild aspect of myself that was released when I drank with friends, I would no longer be myself. I was afraid that the alternative to that being was a controlled, boring, ultra-serious loner.

I don’t want to be that.

Yet, I also want to live long and be healthy. I want to watch my children become adults and to travel through India and to canoe the Yukon. I need to be doing everything in my power to combat this virus. This disease feeds on alcohol, greedily, and grows larger with every drop consumed. I was growing the disease, and, simultaneously, shrinking the part of me that needed to be strong to combat it. 

I don’t want to be lying in the hospital, waiting for a liver transplant, and recognize that I could have chosen to stop drinking, but instead opted for my own brand of moderation. If I go down, it won’t be with the taste of guilt in my mouth. 

I finally chose abstinence, and have not looked back. I have struggled, and grown through those struggles; I have lived moments in which I was uncomfortable and resentful and isolated in this choice. Still, every morning when I wake up, no matter what else I am looking toward in my day, I am sure, absolutely sure, that I’ve made the right decision. The argument inside myself ended, and a peaceful stillness took its place.

An honorable doctor will tell you “the single most impactful thing you can do in living with Hep C is to quit drinking alcohol.” They say this as though it were simple. Such things are never simple. Some humans smoke cigarettes through the hole in their throat, or puff their cigar between inhalations of oxygen from their tank. Yet there is a quiet and profound satisfaction in actively committing to heal your body, and this feeling intensifies and gives you more power as you approach the next change, and the next. The hardest things are often those most worth doing.

Living with Hepatitis C

Living with Hepatitis C 

Welcome. My goal is to develop the sort of website I searched for when I was first diagnosed with Hep C. Most of what I found on the Web and in books were standard explanations of the disease, how it is transmitted, and outlines of potential treatment protocols. What I wanted was to hear the direct voice of someone who was living with Hepatitis C. I wanted to know how you hang onto your friends when you quit drinking, how to tell my grandmother or my children, and, more than anything, I wanted to hope that I could get through this and stay alive.

I couldn’t find any of these things.

I was diagnosed with Hep C five years ago, and I have struggled through an unfamiliar life, suddenly shifted by my diagnosis. I have been changed. I do different work, have different relationships with my friends and family, and, most of all, have completely rewritten many of my beliefs about myself. 

Realizing that I carried this disease set me onto what can only be called a spiritual quest. When you are diagnosed with a potentially fatal illness, you are suddenly and immediately thrown into a dialogue with your fears and beliefs about sickness, vulnerability and death. After five years, I find myself coming to a place in which I can honestly say I am stronger and deeper and more fulfilled as a human being than I was before I knew I carried the virus. I realize that I have found the seed of possibility inside what initially felt like a tragedy, and that through attentive care (as well as being planted in the fertilizer of all that pain and fear), that seed has flourished into something vibrant and useful.

I always used to think it schmaltzy when I would hear people say, “Getting cancer was a gift.” I certainly didn’t feel any gifting when I first found out I had Hepatitis C. I was angry, drowning in pain, and flailing. It was a black hole. I threw all the mail in a cardboard box (it didn’t matter if I paid any bills; I was dying anyway); drank beer and smoked cigarettes on my back porch, stunned at the unfairness of it all; agonized over telling friends and family and then felt hurt and shunned when they didn’t react in the ways I anticipated. I can hardly remember those first few months; my despair was so profound that it shadowed every other event of that time.

Yet, somehow, as days and weeks and months passed after my diagnosis, I realized I was not dead yet, and came to understand that I had to reclaim my life. More than reclaim it - because this implies it was intact and ideal before my diagnosis - I had to create my life. I could wallow or I could get going and make every moment count. That’s what I’ve done and that’s the gift.

It’s a gift grown so abundant I find myself compelled to share it.

We all have our own path. I can reveal whatever experience I’ve accumulated, and perhaps, as you read, it will inspire ideas or insights about your journey. As human beings, we reflect each other - my face is mirror to your face, my sadness mirrors your pain, and your fears mirror my late-night terrors. 

I tried to keep my Hepatitis C diagnosis “private” for a long time. Even those friends and family whom I told about it early on have not been privy to some of the dark places it has taken me. I have minimized it to those I love, because I don’t want to scare them. I hide many of my fears because I pride myself on my bravery. I have flat-out concealed the fact that I have this disease to most of the less intimate characters in my life. I have gone out of my way to be secretive about it on the job, because I didn’t want any employer to see potential weakness in me. I am a professional, and felt I could not afford visible vulnerability.

I’m done with all that.

I have come to believe that every second I spend covering up my experience is a moment of my life which becomes inauthentic and, thus, wasted. I am what I am, and part of me is this virus that swims through my blood and dwells in my liver (I imagine the endless Hep C cities, stretched out like third world shantytowns). To fully accept myself I’ve had to learn, in the words of the well-known serenity prayer – “to accept the things I cannot change, change the things I can, and have the wisdom to know the difference.” I cannot go back, twenty-four years through time, and prevent myself from becoming infected with Hepatitis C. I can make a thousand small changes (and a few huge ones) in my life that allow me to increase the health and vitality of my body so it can respond more powerfully to the demands of my disease. I can take every opportunity to fulfill my dreams on this earth, so that, when I die (whether it is from Hep C or something else entirely), I have no regrets. I can live fully and love hard. I can make meaning, even from this.

Especially from this.

My aspiration for this website is that it will inspire and encourage, will introduce topics that are seldom discussed, and will offer a different perspective on living with chronic illness. I am not a victim; I am facing my reality like a warrior. I am using this experience to grant myself power, rather than allowing it to take power away from me. I hope you will join me...