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Telling Our Story Is Our Duty to Others

Lucinda Porter at Free From Hepatitis C Book Signing

Lucinda Porter at Free From Hepatitis C Book Signing

When I tell my story about living with chronic hepatitis C virus infection, it usually begins with the moment I got the virus. Recently I realized that this is not the real beginning. My story starts at the point I decided to make a difference. This was when I volunteered at a needle-exchange site because I wanted to help stop the spread of hepatitis C and HIV. That experience opened my eyes, but more importantly, it connected me to like-minded people. This small act led me to Alan Franciscus, Executive Director of the Hepatitis C Support Project and Editor-in-Chief of the HCV Advocate. My association with him changed my life in so many ways, all of them good.

That work brought me into contact with people from all over the world, all with their own stories to tell. Their accounts of trials and tribulations cracked my heart wide open, inspiring me to do more. I wish I could scoop up these stories and share them with you. Their stories spurred me on, just as I am sure your would.

In my story, I lived with hepatitis C for twenty-five years. I am a nurse because of having hep C. The virus pulled me towards others who have it, eventually leading to working with liver disease patients at Stanford University Medical Center. I went through treatment three times.  Once was for 48 weeks of treatment with peginterferon and ribavirin, ending in relapse.

In my story, hep C was a gift rather than a burden, although it was a gift I am now happy to do without. Sharing my body with that virus motivated me to take better care of myself. Without it, I might have waited until I had one of those life-threatening “wake-up” calls that shake many of us out of complacency, a call that sometimes comes too late. Having hep C was like having a small voice in my head, reminding me to exercise, eat a healthy diet, and to abstain from alcohol.

The gifts from hep C were not limited to my health. My life was incredibly rich because of the people I met along the way. Collectively, our narratives connect us, so that we are bound not by a virus, but by our stories about it.

Whatever your struggle, speaking up is a brave and radical act. Telling your story is like extending a hand in the dark to console another. It reminds us that we aren’t alone, which may be especially comforting to those who may be where we are or where we have come from. In the words of Holocaust survivor, Elie Wiesel, “Whoever survives a test, whatever it may be, must tell the story. That is his duty.”

Wishing you a happy, healthy 2017, filled with wonderful stories.


Story Resources

HEP Stories Stories of how people are standing up to viral hepatitis in their lives.

The Moth This nonprofit organization is dedicated to the art and craft of storytelling. Listen to stories on The Moth Radio Hour.

StoryCorps Since 2003, over 50,000 people have shared life stories with family and friends through StoryCorps. Each conversation is recorded on a free CD to share, and is preserved at the Library of Congress.

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