My life has been profoundly impacted and contextualized by the fact that I contracted hepatitis C virus in the early 1970s. Diagnosed in 1995, this knowledge has weighed in on every choice I make. It has been the theme of my story. The longest chapter of my life. It has been with me like background noise, like a hated song that just won’t leave my head, always lingering on the edge of my awareness — the worry, the fear, the angst, the “what if’s”, the obsessive self-monitoring.
Giving the noise some credit, I’ve managed OK, not perfectly [which I’ve learned is an exhausting and impossible endeavor],but well enough to stay healthy and alive. Hope upon hope that if I could do so, a treatment would become available to wipe out the virus. I’ve learned and shared the gifts and challenges of living with chronic illness. I truly believe that I never would have been as healthy as I have become had I not had this chronic, low grade illness as an “opportunity” for growth.
Some of you know that in 2011-12 I endured 8+ months of triple drug therapy intended to rid my body of the virus. I was sure it would work. I suffered so it would work. The treatment was horrendous, causing rashes, sleeplessness, manic episodes, hair loss, low white cell count, low red cell count, other blood abnormalities and debilitating fatigue. I could barely get off the couch. The treatment didn’t work. It was a failure. For months I believed I had failed. I did everything right and it didn’t work. I spent the next two years rumbling with shame, grief, heartbreak and self-loathing, as I tried regaining my trust along with my physical and emotional strength…
Just in time for the promise of a cure.
I was excited and terrified as the buzz started to build last year about a new “miracle” drug, Harvoni, with a reported cure rate of 96-99% for those like me with genotype 1 [the hardest to impact]. I began to swim in doubt. What if my insurance company wouldn’t pay for it? What if I was one the 1-4% failure rate? Not another failure!
On November 15, 2014, I began a once-a-day regime for 84 days. At ~$1,100 a dose, I am truly blessed that my health insurance immediately agreed to pay for the treatment [all but our annual co-pay]. With each tablet I took, I affirmed my gratitude — thank you, thank you, thank you for this cure. I also experienced new doubt. It was hard for me to believe that Harvoni could possibly be working. Where were the side effects? I felt a little more tired than usual, but it was late fall and winter, a time when I always feel a little more tired than usual. I did my best to let the doubt flow through me. I focused on gratitude and affirmed that I was doing the best I could. In fact, I had spent 20 years doing the best I could to protect my health so that I would live long enough for a cure. Perhaps part of that success was genetics, another part pure luck and part the pretty-good but less-than-perfect small choices I made each day. Or maybe I’m just plain lucky. I was here. I was receiving treatment. It was meant to be, whatever the outcome.
During the time in treatment with Harvoni, I had the honor of being coached by my colleague and dear friend, Barbie, as she incorporated her new training in The Daring Way™ [based on the research of Dr. Brené Brown] into her practice. I explored the arena of creativity, and courageously took up watercolor painting for the first time since junior high school, learned more about my digital SLR camera, wrote about my hep C “story” as a chapter for a book [The Energy of Healing, published in June 2015], and enrolled for my own training in The Daring Way™.
I completed treatment in early February and then came the long wait until May to have the definitive blood work.
I still look at this and take a deep breath. Not just virus free — I’m told that this is a cure. Forever. Really? I ask. Really. It’s a mystery to me how “they” can be so sure, it’s such a new drug, but I’m willing to live in the mystery of this miracle.
So as I decide, at last, to share this news in my blog, I ask myself what IS different? I still have pretty good genetics, still pretty good luck [knock wood], and still make pretty-good but less-than-perfect choices each day. I still have a great insurance company and good doctors. What’s truly different is the noise is gone — the theme song in the background, the annoying background noise is gone.
When I told my son, Nick, the good news, he said, “Wow, Mom, you get to start a new chapter in your life.”
The noise is replaced with peaceful silence. Sometimes so quiet, it’s unsettling. I breath into the space, content with a few inadequate words to describe what is indescribable. I’m free to not know what my end will be [as if I ever really knew] and I am happy to live with the mystery and write a few new chapters.