SAY IT LOUD: I’m a Person with Narcolepsy and I’m Proud!

by julie on November 30, 2011

“I really don’t care what people think…
I just do my own thing…  
I like being loud and letting people know I’m here.”

-James Brown
We should all do our own thing and not care what others think, but easier said than done. How do we ignore judgement? How do we celebrate the things, visible and invisible, that make us unique?
I recently visited 30 Americans, a powerful exhibit of contemporary African American artists at the Corcoran Gallery of Art.  The exhibit highlights issues of racial, sexual and historical identity. The artwork challenges prejudices and speaks to the strength of spirit.
Outside the exhibit, visitors are invited to fill out free postcards: 
SAY IT LOUD, I’m _____________ and I’m Proud!
This tag-line is derived from James Brown’s famous song.  Artist Glenn Ligon describes that, “James Brown’s ‘Say it Loud’ was released in 1968. When it came on the radio I could sing the ‘Say it Loud’ part but I could only whisper, ‘I’m black and I’m proud.’
Reading other people’s responses (I’m a woman, I’m gay, I’m mixed, etc.) inspired me to fill out my postcard with pride: 
If you choose to speak up about something you care about (in my case, narcolepsy), it isn’t always pretty. There will be words spoken, words unspoken, subtle hints, blank stares, strange questions, and laughter. Yes, people will laugh at you.
The harshest moments will be seared into your memory. 
You will consider turning back. Hide yourself! There’s nothing to be proud of here.  Be someone else, anyone – just not that
For a while, you listen to them. You soak up their careless comments and misinformation like a mop collecting dirt and grime.  
At some point, you wonder why your version of reality is so different from theirs…  Either they’re all crazy or you’re crazy.  Naturally, you conclude they’re crazy!  Well not “crazy,” but misinformed. So, like any good Samaritan, you’ve got to set them straight.
You collect more interactions – good and bad. You grow indifferent to stupid comments. 
You gain confidence in your voice.
Eventually, someone says, “Thank you for informing me. I had no idea!” You laugh together. It’s a crazy world, isn’t it?
And when you least expect it – you find yourself raising your arms up, knowing in your heart – “I’m exactly who I’m supposed to be and I’m proud!”
There’s no one path to making positive change for yourself and others. Chase your dreams, no matter if others see them as impossible, impractical or unimportant.  
Only you know what makes your life precious and worth living.
Thank you for supporting my journey as a person with narcolepsy, a yogi, a runner and a dreamer.

For more practical tips on speaking about narcolepsy, read here

If in the Washington DC area – don’t walk, RUN to the Corcoran Gallery of Art to see 30 Americans (until February 12, 2012) and Hank Willis Thomas: Strange Fruit (until Jan 16, 2012). They’re the most relevant thought-provoking exhibits I’ve ever seen. 
First they ignore you, then they laugh at you, then they fight you, then you win.” -attributed to Gandhi

{ 8 comments… read them below or add one }

Sasha November 30, 2011 at 9:23 am

Thank you Julie!

I'm so grateful you are the voice for all of us. Keep it up, and when is the 2012 Walk for Narcolepsy? 🙂


Justin November 30, 2011 at 10:07 am
Life on Pause November 30, 2011 at 12:36 pm

I love this so much. Julie, you're a true inspiration. I try and be as calm and informant as I can when I share Narcolepsy, but sometimes the jokes, jests, and odd stares can be too much. It's people like you who give us PWN's the courage to speak out.


Melissa December 1, 2011 at 1:12 pm

Sounds like an interesting exhibition and I like the visitor participation component! As always, I'm so proud of your bravery, commitment and poise! You're an inspiration to many. 🙂


Lelia December 1, 2011 at 10:50 pm

Once again Julie, you are an inspiration!! Thanks and keep up the good work 🙂 Keep on fighting the good fight. I am a person with Narcolepsy and I am PROUD!!


Anonymous December 15, 2011 at 11:20 am

Julie, you are amazing! I love your courage!!!! Keep going and thank you!


TonyS September 19, 2015 at 1:03 pm

My sleep doc is fixated on my problem being an out-of-sync sleep cycle because I don’t exactly meet some norm she has for EDS — like I’m jet-lagged. I’ve spent years traveling internationally; what I have is not jet-lag. When I’m really sleepy, the only thing I’ve found to give a period of real clarity is 5Hour Energy. Doctors look at the ingredients and say, ‘it must be the caffeine’. It isn’t! Caffeine even very strong is very different.

Julie, keep up your excellent work/God bless you!


Peter Conley October 16, 2018 at 1:36 pm

Your book has helped me more than you’ll ever know. Thank you so much 🙂


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