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...
Comments