Photography by Tony Wyatt
“Knowing that I have the support of such wonderful people
gives me strength I never thought I would have.”
REM Runnner’s Note: Aloha! I had the honor of working with Bridgette to start the first Sleep Walk in Waikiki. It’s my dream to host Sleep Walks all over America. I asked Bridgette to share about her experience here.
Bridgette’s Guest Post:
After having been diagnosed with narcolepsy with cataplexy in November 2012, I have spent the last few months finding out just how underrepresented and misunderstood a disorder it really is. I joined a local support group, and through them, found out about Julie Flygare and her fantastic book. Inspired, I started following her blog and Facebook, anxiously watching and waiting to learn more about the disorder that has made my life difficult for the last 15 years.
In February, Julie posted about the 3rd annual National Sleep Walk on her website and Facebook, reminding everyone to register and encouraging more participation. I had never heard of this before, and for the first time in a long while, I regretted being in sunny Hawaii and not being in Washington D.C.! I assumed it was too late to get anything organized in Hawaii this year, but I can do next year! Maybe Julie would be willing to help me put one together? So I emailed her asking this very question.
To my surprise, she replied that it wasn’t too late at all, and explained that her first sleep walk had been done on a whim, with only a few friends to keep her company. Three years later, it has grown exponentially! I felt awe wash over me for the courage that must have taken. Why couldn’t I do that? No reason at all.
I had a mere 2 weeks to prepare, and that block of time was mostly occupied by my full-time job. Utilizing Facebook, my blog, and my co-workers, I endeavored to spread the message of the Sleep Walk as best I could. However, realizing that such a lack of preparedness might result in it just being my boyfriend and I, I expected the very worst and hoped for the best.
A great deal of my free time those two weeks went to asking Julie for advice, gathering facts, encouraging participation, and raiding Party City for all the silly trinkets I could justify. I even wrote my doctor’s office asking for help and participation.
The Friday evening before the Sleep Walk, one of my friends stayed overnight to carpool with me and my boyfriend the next morning. I had been prepared to walk alone if need be, so 3 people was more than I’d hoped for. My friend helped me print out sleep disorder facts and cut them up to hand out to passers-by.
March 9th, Suddenly Sleepy Saturday arrived. My boyfriend, my friend, and I strode down Waikiki Beach dressed in our pajamas! (It was my friend’s idea, and I thought it was a good one. I have a silly streak a mile wide!) Clad in my fuzzy rubber ducky pajamas, I waited anxiously for anyone to show. As the predetermined time of 10:30 am neared, I started to get very nervous, so nervous in fact that my cataplexy was beginning to take hold of my legs.
The sight of two of my friends walking up to join me broke me out of it, and I jumped up as best I could to greet them. I thought to myself, 5 people, wow! Then more and more people came, even my sleep doctor! I had 10 people by my side that day, more than I had expected or dreamed would come! I was so moved, I had to sit down for fear of falling over.
The 10 of us walked down Waikiki that morning, sporting blue leis, blowing bubbles, passing out sleep disorder facts and having a great time doing it! It was an experience I will never forget. Even now, knowing that I have the support of such wonderful people gives me strength I never thought I would have. I eagerly look forward to next year, and am truly grateful to Julie. Her encouragement is what brought me into this magical place and time known as the Sleep Walk in Waikiki.
I wholeheartedly encourage everyone who has been touched by a sleep disorder, in their own lives or the lives of those they love, to shake off your doubts and inhibitions and create a Sleep Walk of your own! I promise you won’t regret it. I don’t.
REM Runner’s final words: Please join me in applauding Bridgette Snyder and the Sleep Walkers in Waikiki for spreading the word in Hawaii. I wish I could have joined in person. Hopefully next year! Please check out Bridgette’s awesome blog Sleepwriting Through Life (about living and working with narcolepsy). She’s an incredible role model – rubber-ducky pjs and all!
Start an official Sleep Walk in your city – contact me and we’ll make it happen!