“Kiss Me, I Have Narcolepsy!”

by julie on March 6, 2011

 In honor of National Sleep Awareness Week (March 7-13),  I’ve decided to do something out of my comfort zone.  I’ve decided to SLEEP WALK around the national mall, raising awareness of sleep disorders!

I love holidays – I’ve designed silly outfits for every holiday I could think of/create.  I’ve worn bunny ears on Easter, heart-shaped glasses on Valentine’s Day and my favorite “KISS ME, I’M IRISH” hat for St. Patty’s Day (even though I’m only 1/8th Irish… I think…).

People often tell me they’ve never met someone with narcolepsy. Yet, with 1 in every 2,000 Americans living with narcolepsy – everyone probably has met someone with narcolepsy, they just didn’t know it.

See, we don’t usually wear our narcolepsy on our sleeve.  As I described in an earlier post, I kept my narcolepsy private for the first couple years. Although I’ve spoken up a lot more recently, it’s always within a certain “appropriate context.”  I’ve never put my narcolepsy first; I’ve never walked up to a stranger and said, “Hello, I’m Julie and I have narcolepsy. Want to know more?”

All this is about to change…

Next Sunday, March 13th, 2011 at 11:00 am, I will walk around the national mall carrying a pillow and wearing this t-shirt – introducing myself to as many people as possible along the way.

I think a sign reading “KISS ME, I HAVE NARCOLEPSY!” may be a good ice-breaker too – it always worked on St. Patty’s Day.

Why would I do something this crazy? Because I believe that if I want the conversation about narcolepsy to go my way – I’m going to have to start the conversation.

There are some misconceptions about narcolepsy in our society. Narcolepsy is often portrayed as a joke about someone falling asleep while standing up or speaking.  Narcolepsy is a much more complex disorder (with symptoms including excessive sleepiness, cataplexy, hypnagogic hallucinations and sleep paralysis).  While the inaccurate stereotype continues to spread, the actual symptoms remain unknown to the general public. This delays diagnosis and subjects people with narcolepsy to ridicule.

Instead of reacting to the voices of others, I’ve decided its time to speak first – and not out of anger or resentment, but from a place of joy and pride.  I vow to be open and playful – we can all laugh together! People can laugh at me for falling asleep in strange places and I can laugh at them for not knowing the basics of the sleep cycle or what narcolepsy and cataplexy are.

I invite anyone interested to join me for SLEEP WALK 2011 to raise awareness about sleep disorders – March 13th at 11am on the national mall in Washington DC. You don’t have to have a sleep disorder or wear any special t-shirt, just come to walk and talk with us – it will be energizing. (Email me at julieflygare@gmail.com for details.)

Can’t make it to DC? Go SLEEP WALKING in your own community and tell me about it.  I’ll share stories and pictures on my blog.

Happy Sleep Week, everyone.  Indulge yourself, go to bed early tonight – it’s a Holiday!

Read about SLEEP WALK 2011.

{ 6 comments… read them below or add one }

thomas.flygare March 7, 2011 at 10:46 am

Very thoughtful message, Julie!

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Nancy U March 7, 2011 at 11:32 am

Oh Julie what a great idea! Maybe you could add some footie pajamas too?

Just make sure you don't get mistaken for a congresswoman or senator. Deep down we're all sure that they've all been sleepwalking for years, right?

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Anonymous March 7, 2011 at 11:37 am

Hi Sleepwalker,
This is such a clever, creative, whimsical idea–educating others and having fun while doing it! You never cease to amaze me. I look forward to your blog about how it goes.
Rebecca

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The Dreamer March 7, 2011 at 2:16 pm

Yeah…I think until last fall, I hadn't (knowingly) met someone with narcolepsy.

It was also the first time I had seen anybody carrying a CPAP in an airport…

But, I'm planning to just sleep entire weekend away.

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Melissa March 10, 2011 at 2:37 pm

Go Jules! I have a question about dreams that I've been meaning to ask you. Not that we need an excuse to talk…but this gives me a good excuse to call you. xoxo

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Jerry March 13, 2011 at 5:47 am

Terrific idea- I will be with you in spirit.

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