On Sunday, August 31, 2014, I woke up early but didn’t change out of my pajamas. I was headed to St. Petersburg Beach for the first ever Sleep Walk Tampa Bay. It was part of Julie Flygare’s Sleep Walk series that she created to raise awareness for sleep health.
I drove to the beach and parked about a half mile from the meet-up site since there was limited public parking access in that area. Initially, it felt awkward walking down Gulf Blvd. in my Paul Frank PJs, but we were asked to show spirit by dressing up, or rather down.
When I arrived at the main patio area of the Tradewinds Resort, I spotted lots of festive blue balloons. I met the local event organizer, Jessica Davenport, who greeted me with a signature blue lei to represent Project Sleep. I also had the pleasure of meeting Julie in person, as she had flown in to speak at the Current Concepts in Sleep conference that weekend. Julie had arranged the Sleep Walk Tampa Bay to coincide with the conference weekend. Many of the participants from the conference had purchased the t-shirts, and they were sold out by the start of the Sleep Walk! They used a sign-in sheet to take orders for another batch they would order after the event.
No sooner had I signed in at the registration table and introduced myself to a few other participants, than I noticed Jessica and Julie each being interviewed by a Bay News 9 reporter. It was exciting to have press coverage of the event and raise awareness about sleep disorders. A few of us looked on from a distance as she answered a series of questions. When Julie finished her interview, she walked over to me.
“The reporter wants to interview someone in their pajamas and someone with narcolepsy. I told her I had one person who fit both descriptions. Will you do an interview with her?”
“Sure,” I said. I was comfortable in the spotlight, but this time I had only one nagging thought. I wasn’t teaching in the schools anymore, but any of my former students, co-workers or supervisors might see this if it airs. It would be a very public acknowledgement of having a sleep disorder. I buried the negative voice telling me no. I was not ashamed of having a sleep disorder. Why should I be? Others were open about invisible illnesses like diabetes and mental health disorders.
I stepped forward and the reporter handed me the mic. She showed me how to hold it mid-chest as she adjusted the camera and then began asking questions about my experience with a rare sleep disorder. Julie and Jessica looked on from ten feet away.
“That was great!” raved Julie when the interview was complete. “You are so articulate, plus that drama background – I couldn’t have dreamed for a better interviewee for sharing Project Sleep’s vision.”
By the time we walked back to the registration desk, the crowd had more than doubled. I was surprised to see my sleep specialist waiting for me, sporting his blue lei and Sleep Walk Tampa Bay tee over a pair of shorts and beige loafers. His was prepared for a day in the intense Florida sun with his University of South Florida ball cap and sunglasses. He smiled amiably.
“Hi Lauren! Good to see you.” His tall stature towered over my petite frame and there were more than a few comments about how small I looked next to him. I had to crane my neck to meet his gaze as we chatted.
“Okay, everybody gather around!” Jessica shouted. “I need to make a few announcements then we’ll do some stretching before we begin the one-mile walk on the beach.” She described the purpose of the walk and that any donations from participants helped to fund Project Sleep. She pointed to the beach access ramp and described which landmark was our turnaround point. Finally, she walked us through a few simple stretches as a preventative measure to avoid participant injury.
“Okay, let’s go!” Jessica concluded and we followed her to the beach. I walked alongside my sleep specialist and one of his colleagues. I was impressed that the event attracted 75 participants!
The sun beat down relentlessly, but the sea breeze made the heat bearable. The sugar sand beneath our feet created an intense glare that made sunglasses a necessity. A photographer and videographer followed us on the walk and the story made it to the newspaper and a televised news segment.
It was comforting to be in the presence of others who fully understood the daily struggle of living with this invisible illness. The walk was an overall success and I was proud to be a part of it.
Lauren Saslow is an educator and sleep health advocate. She earned an M.Ed. in Educational Leadership from Saint Leo University and a B.A. in Fine Arts from the University of Florida. She maintains a blog, Couch Surfing Chronicles, on Tumblr.com where she shares her experiences with narcolepsy.