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

{ 10 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? 🙂

Reply

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.

Reply

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. 🙂

Reply

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!!

Reply

Anonymous December 15, 2011 at 11:20 am

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

Reply

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!

Reply

Peter Conley October 16, 2018 at 1:36 pm

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

Reply

X_anon December 13, 2018 at 4:34 pm

Hi Julie, I was recently diagnosed with NwoC/type 2 and ever since there was even idea of having narcolepsy, I started extensively researching the subject. I just finished a presentation about it also. I found your website and app to start letting my friends and family know what was going on, how to explain it. I wanted to ask a question though, something I’ve noticed all my life. As we all know REM and hallucinating happen when awake. Is it possible though, having a dream when actually sleeping, feels so real that one actually thinks it’s happened is a symptom? Let me explain further with this mornings experience. My father comes almost every morning to make sure I’m awake for work. I remember hearing him tell me I needed to take my puppy out to use the bathroom. I swore up and down I already did, and told him so. He then asked me when??? And it was like, as soon as that question came up, I snapped out of it and realized it was a “dream”. Is this something normal in everyone? Or is it more exclusive to PwN? I’ve experienced situations like this more than 3 times a week (estimating based on memory) for as long as I can remember. I don’t typically have hypnagogic or Hypnopompic Hallucinations, although at times I do have auditory hallucinations- someone calling my name (no one is there) or a knock at the door, or even just a loud bang. Help.

Thank you by the way for being a voice for many.

Reply

julie December 28, 2018 at 9:35 pm

Hi there, Thank you for your kind words about my efforts and your great question regarding hypnagogic hallucinations. Your experience is very common for people with narcolepsy to have thought that they did something or had a conversation with a loved one and then to take actions (once they’e really woken up that reflect this) like you telling your dad that you’d already walked the dog. Then to quickly realize that that original thing maybe hadn’t happened. It can be really confusing. I imagine that people who don’t have narcolepsy might experience something like this on occassion, but it is likely something that happens more frequently to you as a PWN. Sending wakefulness and big smiles your way, you are an amazing person overcoming adversity daily! Gratefully, Julie

Reply

Leave a Comment

{ 1 trackback }

Previous post:

Next post: