When I met Stephanie Zappa last June, I had no idea how she would change my perspective on our community.
And my role as a journalist.
I did an interview with Stephanie, her brother, Joe Sullivan, and cousin Missy Gammello for the Dispatch’s HealthWatch publication of a story on Huntington’s Disease. I knew very little about the illness, and really very little about Stephanie — only that this disease had ravaged through her family and that she wanted to set the record straight so people would have a better understanding on how it affects its victims.
I got a lot more than I bargained for.
Since our HealthWatch story ran last June, we have received a steady amount of feedback from readers wanting to help. The bravery of Stephanie and Joe and Missy to speak up for themselves and others suffering from HD struck deeply with many in our community. Seeing the faces of individuals affected by this mind-destroying illness — one they can’t help having — made HD real. It provided perspective.
Stephanie said her symptoms have gotten worse over the last few months. She has a harder time keeping her balance. Her speech has slowly deteriorated. She uses a mouth guard to protect her tongue and cheeks from involuntary biting. “It’s just slowly going,” she said. “But I’m not going crazy.”
Stephanie is tough. She’s independent and she is often heard saying things like “I got it” or “I can do it myself.”
But, despite her will to maintain self-reliance, Stephanie is incredibly grateful for the support of her family, friends and even strangers.
There was a moment toward the end of our interview where Stephanie got really quiet and I saw that tears were coming. We all sat in silence for a moment and her husband, Al said, “Those are happy tears.”
“I’m just so grateful,” Stephanie whispered through her tears. It was at that moment I had to stop being a journalist. I closed my notebook, capped my pen and just listened to Stephanie talk. Stephanie talked about how grateful she was for the opportunity to share her story last summer and for the outpouring of support she has received since then.
I’m sure I missed some great quotes that would have made my story a slam-dunk. I know I’ll probably forget the details of what Stephanie said, but for those few minutes, listening was way more important.
Stephanie’s HD will continue to progress. Her speech will continue to deteriorate. So will her balance and her motor skills, but the generosity of others might actually make her fight a little more bearable. “They’re people that don’t even know us,” she said. “That’s just really cool.”
SARAH NELSON KATZENBERGER may be reached at 855-5879 or email@example.com.