FROM DREAMS TO REALITY WIDE AWAKE AND DREAMING

W R I T T E N B Y J U L I E F L Y G A R E

TH E R E A R E M A N Y C O M E D I C P O R T R A Y A L S O F N A R C O L E P S Y I N T H E M E D I A - Mr. Bean, Deuce Bigalow Male Gigolo, Moulin Rouge—these films feature characters with narcolepsy who fall asleep while standing, and the audience gets a quick laugh. Yet as a law student diagnosed with narcolepsy at age 24, I'd never fallen asleep while standing. Narcolepsy was so much more complicated and fascinating, involving aspects of dream sleep taking place while conscious. Moreover, my experience with narcolepsy was far from a joke.

After graduating from law school in 2009, I thought our society deserved an honest look at narcolepsy. Having studied writing in college, I decided to write

Julie Flygare, JD, is a leading narcolepsy spokesperson, award-winning author, and blogger diagnosed with narcolepsy with cataplexy in 2007. She received her B.A. from Brown University in 2005 and her J.D. from Boston College Law School in 2009. Julie ’ s story has been featured by Marie Claire, ABC, NBC, Psychology Today, Huffington Post and the Discovery Channel. She is the creator of the NATIONAL SLEEP WALK, the NARCOLEPSY: NOT ALONE international awareness campaign and the first-ever Narcolepsy mobile app. Julie currently serves on NIH’ s Sleep Disorder Research Advisory Board and lives in Los Angeles, California.

Julie Flygare

“EDITING AND PROOF-READING WAS CHALLENGING WITH NARCOLEPSY. I WOULD ENTER A SLEEP HAZE WHILE WORKING AND EVENTUALLY FALL ASLEEP, BUT WHEN I’D WAKE UP, I COULDN’T REMEMBER HOW FAR I’D GOTTEN IN MY EDITING BEFORE MY CONSCIOUSNESS FIZZLED.

a memoir. So, clinging to my writing background and a dream for change, I set out into the unknown.

Writing the first draft was exhilarating. I felt so “high on life ” after finding a new beautiful way of describing something. I’ m very focused on how my writing sounds, as much as what it says. I want my words to slip off the tip of the tongue like poetry.

I am old-fashioned and wrote my first draft entirely by hand, resulting in countless notebooks of writing. I wrote so quickly, like a mad-woman, that I could barely re-read my own writing, so I had to quickly transcribe it onto my computer.

I treated writing the first draft of my book like a 9-5 job, but unfortunately creative inspiration doesn ’t always work on a 9-5 schedule. If I wasn ’t inspired, I worked on my blog, edited prior writing, or went for a run. Sometimes, a key phrase would hit me while out running and I had to stop to type it into my phone before I forgot it. Also, I woke up from dream-filled naps with words on the tip of my tongue.

Writing “Undertow ” (Ch 8) and “Monster ” (Ch 11) were particularly emotional –especially the scenes about cataplexy and hallucinations. I mentally re-lived those experiences to describe them accurately. I suppose I was in shock or survival mode the first time around and couldn ’t process it all. Writing about it years later made it very raw and real. Sometimes I was left sobbing.

Editing and proof-reading was challenging with narcolepsy. I would enter a sleep haze while working and eventually fall asleep, but when I’d wake up, I couldn ’t remember how far I’d gotten in my editing before my consciousness fizzled, so I usually had to go back 5 or 10 pages to resume editing. It made for a long process to ensure there were no errors in the final draft.

Entering the publishing world as a “ newbie ” was very challenging. I knew the literary world would not be easy to enter: everyone is skeptical of unestablished authors. I was determined and became totally resilient to rejection, which helped me through the jungle.

Three and a half years after starting this journey, on December 15, 2012, I published "Wide Awake and Dreaming: A Memoir of Narcolepsy. " Since publication, the book has been highlighted by various TV shows, radio programs, news articles and blogs. I have given many presentations and conducted 7 book signing events across the country. Last spring, my book won First Prize in the San Francisco Book Festival Biography/Autobiography Contest 2013.

I set out to change perceptions of narcolepsy, and I believe my book is accomplishing that goal. But I must admit, there hasn 't been one defining " aha " moment when I knew writing this book was worth it. Instead it' s been a collection of small quiet moments emails, book reviews, hugs, letters, and heart-felt thank you ' s and " me too ' s " from readers around the world. I can 't thank my readers enough for giving my book a chance and spreading the word. S&W