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

"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

THE KING OF BLING: REM Runner's Thanksgiving-Inspired Fairytale

Once upon a time, there was a King living in a castle of gold.

"The King of Bling," as everyone called him, had everything made of gold -  bricks of gold built the fortress walls.  The King sat in gold chairs, walked in gold shoes, wore gold-laced clothing, ate gold-leafed food.  Even the trashcans and toilet seats were gold.

Visitors had to wear sunglasses (gold-rimmed) to off-set the brightness. For hundreds of miles, the castle shimmered so bright that it rivaled the Sun itself.

Yet, the King couldn't see the gold - it was only a drab mustard yellow color in his eyes. Never-the-less, he was glad his visitors were impressed. He watched as their eyes opened with amazement.

"Magnificent!"  "Glorious!" "Like Heaven on Earth!" they exclaimed.  He wished he saw what they saw...

One terrible day, a ferocious storm came across the kingdom. The villagers gasped in horror as the storm shook the castle, literally lifting it from the ground in a tornado swirl, then dropping it with a smash.

When the skies cleared, the King emerged from the rubble.  The castle was severely damaged. Gold bricks spread across the land. Infuriated, the King instructed his army to collect the bricks and begin rebuilding immediately!

But when the sun emerged from the clouds, the King looked out onto the land and saw something unusual...

"What is that?" he asked his servant, squinting his eyes and pointing at the sparks of gold shimmering across the land like stars lighting up a night's sky.

"That's gold, your Highness."

He stood frozen in awe of the glorious light.

He stopped his army, instead, instructing them to leave the bricks where they'd fallen.  From that day on, each afternoon, when the sun shown just right, everyone danced in the streets basking in the brightness. This was the best part of everyone's day, the King's included.

The moral of the story?

I was that King, living in a house of golden health. It wasn't until my kingdom was shaken and things fell apart, that I began to see the brilliance all around me.

This Thanksgiving, I am thankful for my "health" - all that is perfectly "healthy" and all that is "wrong" by medical standards.  If it wasn't for the storm, I never would have seen the gold.

In closing, a quote:
"It doesn't matter what you're given, whether it's physical deformity or enormous wealth or poverty, beauty or ugliness, mental stability or mental instability, life in the middle of a madhouse or life in the middle of a peaceful, silent desert... That's the challenge of now: What are you going to do with what you have already - your body, your speech, your mind?"
 -The Wisdom of No Escape by Pema Chodron

Wishing everyone a happy and joyful Thanksgiving!

When Motivation Isn't For Sale (Part II)

As previously noted, motivation doesn't grow on trees.  It's not for sale either - not even at Lululemon. Sorry! Three more motivation techniques:

3.  One day moment at a time: It can be tempting to assign one feeling or sensation to an entire day.  People often say: "I'm tired today," or "I'm down this week."

Yet, physical sensations and mental states-of-mind can change in a heart-beat.  I challenge you to measure your feelings by moment instead of by day. 

Try staying open to the possibility of feeling differently by the afternoon or evening. Say, "I'm tired at the moment, but we'll see..."


This strategy has been freeing to me - as I experience physical discomfort daily, but the day is long and full of possibilities!

4. "I will not touch my bed. I will not touch my bed."

"I've GOT to go for a run!" I told myself one sunny afternoon as I arrived home around 4:30pm.

But I was feeling "blah" and I knew that once in my bedroom, the Sirens of Sleep would call from my bed - pulling me in against my better judgment.

I repeated, "I will not touch my bed. I will not touch my bed," as I changed, grabbed my ipod and head back outdoors.

This silly mantra kept my good intention in the forefront of my mind and muffled the Sirens of Sleep.

5. Jock Jams: When in doubt, I blast a favorite tune or watch athletic gear commercials on YouTube.  Currently, my favorite song is "Shake It Out" by Florence + the Machine. My favorite commercials:

IMPORTANT: listen to your body - only you know what you need most. I do NOT exercise when experiencing a sleep attack or excessive daytime sleepiness. I like to exercise right after waking up from a nap.  These suggestions are from my personal experience - I am not a doctor or sports specialist. 

When Motivation Doesn't Grow On Trees (Part I)

Let's be honest, motivation doesn't grow on trees. At least not where I live.  Here, it's getting darker and colder by the second. A perfect time to talk about motivation and where to find it!

NIKE says, "Just Do It" as if it's that simple.  Maybe it is for some - but not me.  For me, there is a large gap between the intention to exercise and actually doing it.

What's lurking in the gap? Headaches, back pain, cold toes, exhaustion, inertia, sore muscles, gravity, the refrigerator, and most formidable - my bed.

I've collected my top 5 motivational strategies to bridge the gap from intention to exercise. I will list 2 here, return soon for the other 3!

1. Dangle a carrot from a stick and go!

Is the thought of exercising nauseating? Sometimes, I'm 100% convinced I don't have the energy to run. Sweating sounds inconvenient... Then I'll have to shower again - equally exhausting.

Okay, forget running. What about walking around the block? Walking is much more approachable as a concept to me.

Sometimes, "a walk" turns into "a run" and I arrive home breathless and soaked in sweat. What just happened? My mood shifted or a song pumped me up - and I surprised myself!  Regardless, moving forward at any speed is an accomplishment.

While training for the Boston Marathon last year - I ran/walked my entire training and on marathon day using Jeff Galloway's strategies. I ran 8 minutes then walked 2 minutes. Instead of thinking about the daunting long distance, I only thought, "how long until my next walk break?"

I call this the dangling carrot technique, which may sound silly, but this strategy is highly effective mentally and physically.  More info here.

2. Living (and Exercising) Social

Making exercise social is very motivating.  I've been meeting my friend Sue for Nia class once a week. I get to see Sue and do Nia. Also, because I told Sue I will go - I'm more likely to go.

This is  especially helpful for trying new forms of exercise and new locations.

Long-distance friends can motivate too! I always owe someone a phone call, so I use walking as an opportunity to catch up with friends and family. Talking and walking makes time fly and always puts a smile on my face.

---------

Part II coming soon...

Know other motivational techniques? Comment below! 

ABC WTVD Reports on Narcolepsy and AVALON Magazine to Raleigh, NC Area

ABC WTVD Channel 11 in Raleigh, NC aired an in-depth report about narcolepsy today at 4pm.  The news story featured my personal hero, Haven, and the articles I authored recently published in AVALON Magazine.

Watch here:



For more, check out AVALON Magazine's Holiday Dream Issue for sale online and at bookstores including Barnes & Nobles, Books-A-Million, Doubleday, B. Dalton Books and many independent stores.

THANK YOU to the Cavnar family for sharing your experience with my narcolepsy blog, AVALON Magazine and ABC news. Because of you, thousands learned about narcolepsy and cataplexy today - a victory worth celebrating!

If there is a silver lining on the cloud, you've found it and made it dazzle! Thank you.

Narcolepsy in the News

More narcolepsy in the news? It's true.  

This Thursday, Nov 17th at 4pm, ABC WTVD Channel 11 in Raleigh, NC area will feature a very special report about my personal hero, Haven! 

Haven is an amazing young woman, age 10, living with narcolepsy and cataplexy.

Her story is featured on my blog here and in my feature article "Wide Awake and Dreaming," in AVALON Magazine Holiday Dream Issue 2011 (available at Barnes and Nobles).

Please join me in thanking Haven and her family for sharing their story to help raise awareness about narcolepsy. 

I sent these photos to Haven the morning of her interview to remind her - she's not alone and that we're cheering for her!

Here's the video online!

Haven: 200,000 Americans with Narcolepsy say "THANK YOU!" 

NBC Washington Features Julie Flygare in Narcolepsy Report

Just 15 minutes into the 5 o'clock news today, NBC Washington featured an in-depth report about my experience with narcolepsy and cataplexy. Please share to help raise awareness!

Watch here:

View more videos at: http://nbcwashington.com.

Description:
"Julie Flygare had the world in the palm of her hand. She was in law school, she was an avid runner and fitness buff, and she had a ton of friends. But when she started experiencing extreme exhaustion and bouts of unusual muscle weakness, no one could tell her what was happening."

I am so honored to be featured in this segment. Thank you to NBC's team - Doreen Gentzler, Lauren and Chester!

NBC News4 Airs Segment about Juile Flygare & Narcolepsy: Nov 15th at 5pm

This Tuesday, November 15th, NBC News 4 at 5pm will air the news story about my experience with narcolepsy. Tune in or set your DVR!

To read more about my NBC interview - click here.

REM Runner Julie Flygare interviewing with NBC's Medical Producer

Taking Risks & Discovering Nia

“One hour of life, crowded to the full with glorious action, and filled with noble risks, is worth whole years of those mean observances of paltry decorum.”

- Sir Walter Scott

Photograph provided by Nia Technique (www.nianow.com).

Out of Habit:

Like most mornings, I awoke a creature of habit. I had no intention of stepping out of my comfort zone on this day.  Nor did I plan to throw a temper tantrum.  Yet, a temper tantrum was exactly what I needed.

It was the final day of the Narcolepsy Network Conference 2011.  I put on a business casual dress, fixed my hair and makeup and headed to breakfast. At the breakfast table, I leafed through the conference schedule. The couple next to me discussed the Nia(tm) class.

I'd heard of Nia, a sensory based movement practice incorporating martial arts, dance arts and healing arts. Some people with narcolepsy love Nia, but I'd never considered it for myself.  It was.... new and different; out of my comfort zone.

When my entire breakfast table decided to try Nia, I couldn't think of a good enough excuse to skip out.  So, I tagged along - nervous and unsure what to expect.

Stepping into Nia:

Problem #1 -  I was wearing a dress.  The Nia instructors, Sue and Stacey, said this was no problem and welcomed me into the circle to begin class. "Just do whatever feels comfortable," Sue said.  

Soon, we picked up the pace.  Nia is Non-Impact Aerobics. The music was timed perfectly with each movement.  My dress and long hair flowed along like waves in an ocean. 

Problem #2 -  my lack of coordination.  Although the steps were simple and easy to follow - I mixed up my feet and fell out of sync quickly.  I smiled and laughed.  A "serious athlete" in other places, I had to let go here and embrace the awkward innocent beginner in me.

In one step sequence, our feet touched the four corners of an invisible square, outlining our personal space.  "Remember, you are the center of your own world," Stacey said.

This was a refreshing reminder.  All too often, we prioritize the hopes and expectations of others. Sometimes we lose touch entirely with our own needs. Outlining my square, I re-claimed my position at the center.

Losing My Temper:
Towards the end of class, the practice moved to the floor. Not wanting to expose myself - I followed along from a seated position in a chair.  Some of the movement was organic and interpretative. And then, we stretched our legs and arms out.

 "Shake it out! Yell! Have a temper tantrum!" Sue instructed.

Did I hear her correctly? 

According to my older siblings, I was an expert temper-tantrum thrower as a kid. It had been a while... Yet, I'd already stepped out of my comfort zone more in the past 45 minutes than I had in the last 6 months.  Why stop now?

So, I joined in - flailing my arms and legs aggressively and letting out a childish loud "Ahhhh!"

Shaking it Out: Photograph provided by Nia Technique (www.nianow.com).

My inner child emerged quickly - bringing me back to a time before I found the words to express frustration and before I learned to seal this frustration neatly behind my lips.  After a long busy conference weekend, this temper tantrum was right on time.

Dancing Through Life:
 In conclusion, I loved Nia because it was FUN and easy to pick up. Nia IS for every body.

The Nia website describes: "Every class offers a unique combinatino of 52 moves that correspond with the main areas of the body: the base, the core and the upper extremities. Stiff beginners and highly fit athletes alike can adapt Nia to meet their needs by choosing from three intensity levels."

Yet, trying Nia was still taking a risk for me.  Risks are scary, but certainly not boring or sleep-inducing! Since returning home, I've taken a second Nia class at a local studio. Classes are offered in over 45 countries all over the world.

I hope to continue practicing Nia, and most of all, I hope to remember the feeling of stepping out of my comfort zone, throwing a temper tantrum and walking away a little more alive than ever before.

Short video clip (I am the one in the dress and Sue D. is leading us):



---------

A big thank you to Sue and Stacey for facilitating our Nia sessions at the NN Conference 2011.

Stacey Hall's Bio:
Stacey Hall is a certified Nia(tm) Technique Brown Belt instructor. When she attended her first Nia class more than 16 years ago, she suffered asthma and debilitating pains in her legs, which kept her from running and walking long distances. Both conditions are now part of her history because of the body awareness she received through the Nia Technique. Stacey is the creator of "Chi-To-Be! Achieving Your Ultimate B-All" Program.

Sue Dambrauskas' Bio:
Sue Dambrauskas is a Nia(tm) Blue Belt and has been practicing Nia since 2007. She works as a health communications professional for the federal government. Nia brings her great joy as she dances through life, while helping her stay fit. The NN 2011 conference was her first taste of stepping in as a Nia instructor, and it was delicious! She hopes to keep serving up Nia at future conferences and beyond.

Learn more: www.nianow.com

Forget the Birds and the Bees, It's Time to Talk about Zzz's

The SLEEP talk is the new sex talk, folks.

MTV True Life I Have Narcolepsy sheds light on teen sleep in America. While many young Americans suffer from undiagnosed chronic sleep disorders, the epidemic of sleep issues amongst teens is even more pervasive. 

A startling 70% of high school students are not getting the recommended eight hours of sleep on school nights, according to a recent Centers of Disease Control and Prevention study. So what?

This insufficient sleep is associated with health-risk behaviors such as drinking alcohol, smoking cigarettes, fighting, physical inactivity, and being sexually active. It's also associated with serious consideration of suicide attempts and feeling sad or hopeless. (Details here)

“Public health intervention is greatly needed," Lela McKnight–Eily, PhD, Division of Adult and Community Health states, "and the consideration of delayed school start times may hold promise as one effective step in a comprehensive approach to address this problem.” 

The association between insufficient sleep and high risk behaviors doesn't necessarily prove causality. However, the CDC study and MTV's True Life I Have Narcolepsy suggest that sleep is in mix. 

As a teen, I only talked about sleep to brag about how little I got. Evading sleep was a key strategy towards achieving my American Dream of success. Evidence suggests that this attitude is wide-spread and may be hurting our youth. 

A few conversation-starters to talk about sleep with teens:

1. How long does it take you to fall asleep? 

2. Do you wake often during night? 

3. Do you feel rested in the morning? 

4. Any urges to sleep during the day? 

5. Any vivid realistic nightmares/dreams?

Consider whether the use of televisions, computers, gaming equipment and phones in the bedroom may be compromising your child's ability to "shut down" at night. 

As we aim to protect our teens' health and safety - the SLEEP talk is a good place to start.  Thankfully, it's way less awkward than talking about sex, drugs or alcohol!

Full Episode of MTV True Life I Have Narcolespy Available Online

I highly recommend watching this eye-opening episode featuring two amazing women with narcolepsy and cataplexy - Katy and Julie.

To be clear, I am not the Julie on this show. I am "The Other Julie" as described by MTV's Julie on her blog. :-)

Watch full episode here:

MTV True Life I Have Narcolepsy Airs Saturday Nov 5, 2011

Grab the popcorn and remote! MTV True Life "I Have Narcolepsy" airs this Saturday, November 5th at 3pm (EST).

This show features two brave women's accurate and striking experiences with narcolepsy and cataplexy. Read more here.

Thank you to Julie, Katy, Robby and MTV for raising invaluable awareness about narcolepsy!