I was an emotional mess when I first met Jeff Carroll at a Huntington’s disease conference. My recent gene-positive diagnosis was on my mind. I couldn’t talk about it without crying, and I believed that I would never be happy again.
My husband and I were trying to have a baby at the time. I had attended the event to hear Jeff speak on a family planning panel about in vitro fertilization (IVF) and pre-implantation genetic diagnosis (PGD). He sat at the front of the room under the bright lights sharing his story of how he started his family using IVF with PGD. I was sitting a couple of rows back, my body angled in an awkward position so that I could see around the people in front of me.
I was surprised to learn that Jeff was gene-positive and a scientist working to find a cure for Huntington’s. I was amazed at his calm voice and acceptance of his diagnosis.
After the session, I nervously waited among those who were gathered for a chance to speak to Jeff. I bit my lip, willing myself not to blubber in front of him. I had a question for him that was unrelated to the topic of family planning. When the woman in front of me had finished her conversation with Jeff, I moved into the space she’d left.
“Hi, my name is Erin,” I said. I didn’t tell him that I was gene-positive or that my husband and I were trying to have a baby. That information was too raw to say aloud. I was trying to avoid thinking about my status. We shook hands, and I asked him, “How is it possible for you to be trying to find a cure when you know you are going to get it? How do you think about it all the time?” He answered something along the lines of, “It’s like the air I breathe, it’s just there.”
I wanted to feel at peace with my diagnosis like Jeff was with his, but at that moment, that seemed impossible. Merely thinking the words “Huntington’s disease” caused tears to spring in my eyes. But I realized that if Jeff was OK, one day I could be, too.
It took a lot of work to have a family and come to terms with my future with Huntington’s. Of course, it is still scary, but I no longer spend my days panic-stricken and on the verge of crying. Having a positive role model like Jeff to look up to was monumental in my journey toward acceptance and healing.
When I meet Jeff, I couldn’t have imagined that someday I would participate on a family planning panel at a Huntington Society of Canada conference. The day I stood behind a podium in front of a roomful of people, spoke into the microphone, and told them my gene status marked a huge personal milestone.
I wasn’t embarrassed or ashamed. I shared our long path to parenthood, which included two failed IVF attempts with PGD. Having a baby was a torturous process for us due to the complications of undiagnosed infertility. I finished my presentation with the wonderful story of our daughter’s adoption. I was nervous, but I didn’t cry.
I hope that by sharing my story, I helped someone else just as Jeff helped me all those years ago.
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