Finding my people through Narcolepsy Network changed my life
For the first time, I was surrounded by people who understood
Written by |
On a Friday evening in October 2006, I walked into the Narcolepsy Network’s annual conference in my hometown of Dallas, feeling both excited and nervous. I had been living with narcolepsy with cataplexy for several years, but this was the first time I would meet another person who truly understood what life with this neurological disorder was like. Actually, not just one person, but hundreds.
Until then, I’d often felt like I was navigating narcolepsy alone. My family loved and supported me, but no one could fully understand what it felt like to battle overwhelming daytime sleepiness, experience cataplexy, or constantly explain that narcolepsy is much more than simply being tired.
Walking into that conference changed everything. The timing couldn’t have been better. I’d recently started taking Provigil (modafinil) and Xyrem (sodium oxybate), two medications that helped me function better than I had in years. For the first time, I felt hopeful. Attending the largest narcolepsy event in the country felt like the next step in learning not just how to live with narcolepsy, but how to thrive despite it.
The secret word is ‘pomegranate’
I headed straight to the Friday night improv comedy session. Without much planning, I found myself onstage telling two funny stories about living with type 1 narcolepsy. One was my now-famous “the secret word is ‘pomegranate'” cataplexy story.
As I reached the punchline, I reenacted exactly what had happened.
“Dad … the secret word … is forbidden fruiwute …”
My speech became intentionally slurred as I mimicked collapsing into another cataplexy attack.
Then I looked out into the audience. To my amazement, I saw people laughing so hard that many were experiencing cataplexy themselves. Friends were holding each other up as laughter caused knees to buckle and muscles to give way. For the first time in my life, I wasn’t surrounded by people wondering what was wrong with me.
I was surrounded by people who understood. They weren’t laughing at me. They were laughing with me.
That single moment erased years of embarrassment. Instead of feeling ashamed of my cataplexy, I realized it was OK to laugh about the absurd moments this disorder sometimes creates. For the next several years, conference attendees would smile and say, “Hey, it’s the Pomegranate Girl!” It’s still one of my favorite nicknames.
I found my people
The next morning, I arrived late to breakfast and sat alone at a table. That’s when Barbara Austin and her mother, also named Rachel, asked to join me.
Barbara, another Texan, became one of my first narcolepsy friends, and nearly 20 years later, she still is.
“I found my people!” From left, Kerry Harrison, Rachel Nesmith, and Barbara Austin pose together at a narcolepsy event. (Courtesy of Rachel Nesmith)
Narcolepsy friends are different. They’re built on a level of understanding that’s difficult to describe. These are the people who don’t question why you need a nap, why you cancel plans, or why laughter can sometimes send you to the floor. They simply get it. For many of us, those friendships become family.
That’s what makes Narcolepsy Network so special. Since 1986, it has connected patients, caregivers, clinicians, researchers, and advocates while reminding people with narcolepsy and idiopathic hypersomnia that they don’t have to face these disorders alone.
This year, nearly 20 years after attending my first conference, I had the privilege of interviewing Narcolepsy Network’s executive director, Liz Burgess, and board president, Keith Harper, during SLEEP 2026.
I asked Burgess what she believes Narcolepsy Network does best.
“We want to help people find their people,” she said. “Our annual conference and free support groups create friendships and provide support throughout each person’s journey. We also listen to patients.”
Her answer immediately brought me back to that weekend in Dallas. That’s exactly what Narcolepsy Network did for me.
When I asked about the organization’s goals, Burgess explained that the staff continues working to improve educational resources for newly diagnosed patients living with narcolepsy and idiopathic hypersomnia. Receiving a diagnosis often leaves people asking, “What now?” Narcolepsy Network hopes to answer that question with trusted information, practical guidance, and a supportive community.
Harper reflected on one of the organization’s proudest accomplishments: the advocacy efforts that helped support the establishment of the National Center on Sleep Disorders Research within the National Institutes of Health in 1993, creating a lasting foundation for sleep research.
Before ending our interview, I asked Burgess how she measures success.
“I feel successful when a member of Narcolepsy Network no longer needs our support because they’re thriving, happy, and healthy.”
I couldn’t imagine a better definition. As people living with narcolepsy, we spend much of our lives explaining ourselves to a world that often misunderstands excessive daytime sleepiness and cataplexy. Narcolepsy Network reminds us that our experiences are real, our challenges matter, and our voices deserve to be heard.
When I think back to that nervous young woman who walked into the Dallas conference in 2006, I wish I could tell her: “You aren’t alone anymore.”
That weekend, I didn’t just attend my first conference. I found my people.
Note: Narcolepsy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Narcolepsy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to narcolepsy.
Leave a comment
Fill in the required fields to post. Your email address will not be published.