When Your Body Becomes A Bumper Car

Yoga was the last thing on my mind when I returned to DC this week after my father's death. Yet, gravity pulled me back to yoga quickly. 

"Here goes nothing," I thought, dragging my feet into the studio. 

My spirit was as heavy and shapeless as wet laundry. My narcolepsy was worse than ever - I'd collapsed to the ground more in the past week than in the past 6 months.  

The 21 Day Yoga Challenge was the buzz around the studio, which made me cringe. Having missed 8 days of the challenge in New Hampshire, I felt defeated - a failure.

We began class breathing in and out slowly. An image of my father came to mind quickly.  I blinked back tears and thought I might throw up. 

But as class went on, I re-discovered something amazing - my body. 

Matthew Spaulding Photography

I'd spent the past week living in my head and heart.  Understandably, my emotions took a ferocious journey when my father died - and my body went along for the ride. As a result, I had tight shoulders, knots in my stomach, a clenched jaw, heart-racing and trembling hands. 

"Many people treat their bodies as if they were rented from Hertz - something they are using to get around but nothing they genuinely care about understanding."  -Chunglian Al Huang

Yoga helped me realize I'd been treating my body like a rental car, or worse, a bumper car.

I love bumper cars!

Slowly but surely, I'm re-claiming a little territory to call my own - separate from my hazardous sadness and uncertainties.  I went to yoga every day this week, and even attended two classes back-to-back one night - a first for me!

Matthew Spaulding Photography

I won't complete the official Tranquil Space 21 Day Yoga Challenge, but I dare say these past three weeks presented greater challenges.  

We are complex beings - a mixture of mind, body and soul. 

"You don't have a soul.  You are a Soul. You have a body."  - C.S. Lewis

Usually, I love this C.S. Lewis quote for emphasizing the soul. This week, it reminds me I still have a body.  Each part of the equation is important.

Perhaps it's inevitably we ride around in reckless bumper cars every once in a while. Thank you, yoga - for helping me pick of the pieces afterwards. 

Matthew Spaulding Photography: http://www.matthewspaulding.com/

From His Heart to Ours

When my father passed unexpectedly on Tuesday, I was dancing.

I was swirling, whirling and laughing with joy. My dad was at work at the Portsmouth City Hall, doing what he loved.

Driving home from dance class, my phone buzzed. Kathy's cell. "Call me right away."  I knew in her voice.

"Daddy," I whispered softly, wondering if he could hear me now.

I sat at a red light. I looked to my left, the National Cathedral standing dignified and tall nearby. The light turned green. My foot floated slowly off the breaks. I drove the speed limit all the way home.

Once parked, I re-dialed Kathy.  I can't describe this moment, other than to say that I always knew his heart would stop and mine would feel torn out simultaneously,  I just didn't know when. When became now.

I made calls, packed quickly, flew to Boston, drove to NH. Tears. Pounding headache. More tears. Cataplexy worse than ever. I lay paralyzed on the floor, my head in my sister's lap.

When I awoke the next morning, it was still true. Among other duties, an obituary needed to be written for the papers by 4pm.

I'm "the writer" of the family... No one forced me, but it was my place.  I gathered the information.  I looked up examples. My Dad would have advised me to break it into small tasks, so that's what I did.

A strange thing happens when writing an obituary. Tom Flygare IS... became Tom Flygare WAS... All my sources were written in present tense. I was tasked with putting him in the past. A duty I never wanted.

The obituary wasn't a masterpiece, but it was accurate and on time. I knew he'd be proud.

Boston Marathon 2010

He gave pieces of his heart to everyone he loved.

Integrity, respect, kindness, patience, unconditional love. 

It’s no wonder his heart became weak. He'd given so much of himself to others. 

For now, my enitre being aches for him. I know he'd advise me that: "It hurts unbelievably now, Julie, but the pointed pain will dull. It'll never go away, but each day will get better." And I'd believe him.

Ultimately, I hope to celebrate him through my present life.  I'll hear his voice echoing in the cheers of Fenway Park. I'll feel his heart beating in mine.  I'll continue to dance and work towards my dreams - knowing he's somewhere out there cheering for me, his Fabulous Jules. 

I've got to ride;
Ride like the wind;
To be free again.

Please read: 

Those That Carry Us

Flygare Remembered As A True Friend

Thomas John Flygare Obituary

21 Day Yoga Challenge & Race Training Begins!

"Every accomplishment starts with the decision to try."  - Anonymous

Image from Tranquil Space Blog 

Ouch! My legs are heavy as rocks this morning. For the first time, I'm taking on multiple major exercise goals at once.

I'm training to run a 10-mile race in March and I'm flirting with a half-marathon in April and perhaps a full marathon down the road.

In addition, yesterday was Day #1 of the 21 Day Yoga Challenge (to take 21 yoga classes in 21 days at Tranquil Space). I will be out of town 3 of the days, so I'll have to double up on classes other days.

AM I SANE? I'm not sure. 

I'm also returning to exercise after 2 weeks off with a strange rib-cage injury from too much twisting in yoga. The only "cure" was time off.

Once recovered, I returned with vigor. On Sunday, I attended Suzannah's fabulous Nia class and took a fast-paced run outdoors afterwards. Monday, I returned to my yoga mat for the 21 Day Challenge (light on the twisting).

Getting back in shape hurts.

Everything takes more concentrated effort and my legs are screaming for mercy. I'll keep going - knowing this will make me stronger and happier eventually.

Competitions, races and challenges are great to kick-start exercise routines. I'm hoping the yoga and running compliment each other.

I fear that I may not reach my goals. My knee tendinitis or rib inflammation may flare up. My health and work goals will take precedent. My sleepiness and cataplexy are looming too.

But I'll never know unless I try!

So, You Want To Start A Blog? REM Runner's Guide to Reaching Blogosphere Nirvana

"Everything starts as somebody's daydream." - Larry Niven

Thinking about blogging? Start today. It's a new year, after all! There's no "right way" to blog, but I've listed the four things I most wish I'd known when I started two years ago.

1. Set moderate goals (i.e. - one post a month).   

Your blog is NOT a failure if you don't post everyday or take a few months off.  Setting easily attainable goals (like once a month) will help you stay motivated to keep it up long-term. Ironically, your readers may like hearing from you less often - as it's less daunting for them to keep up.

Summer 2010, I lacked inspiration. I wrote a few short posts, but nothing special. Had REM Runner died? A year and a half later, 134 posts, over 30,000 hits and 20,000 unique visitors later - I guess not!

2. Don't worry about readership size or responsiveness - instant gratification isn't always there. 

An amazing post idea strikes you. You rush to your computer and pour your heart out. You hit "publish" and wait... Wait for what? The world to stop and congratulate you, of course! You link to Facebook, Twitter, LinkedIn - still, no comments, no thumbs-up, no re-tweets...

You cannot judge your post based on instant readership or responsiveness, blogging just doesn't work like that.

I'm shocked when people tell me months or years later how much they loved a certain post or how much my blog means to them. You may never know the lives your blog will touch. Some folks just don't think to tell you. Others hesitate to comment if they don't know you personally (for the record, I love comments from all readers!).

Blogging is timeless. Individuals diagnosed with narcolepsy tomorrow can be inspired by what I wrote two years ago. Cool, right?

3. Find a theme that attracts a diverse audience.

My description states: "I will share some of my experiences as a person with narcolepsy, a runner, yogi and photographer..."   I can choose what I want to post about, depending on my mood. Also it attracts a wider audience - runners and yogis visit because of our commonalities, but end up learning about narcolepsy.

You create a niche area to call "your own," so you won't be the 1 millionth person blogging about celebrities, but the 1st person blogging about celebrities, racecars and celebrities who race cars (random example).

4. Most importantly: Blog for yourself. 

"I want to blog for my friends and family."

When I hear this, I cringe. The bad news: blogs aren't for everyone. Some people stalk them, others would rather be dropped in a shark tank than read a blog.  If your loved-ones are anything like mine - it will be a mixed crowd of blog-lovers and haters.

"But it's about me - they should be interested!" I know, but some won't be, so the faster you can get over it, the better. Try not to take it personally: it's not that they don't like you - it's that they don't like blogs.

The good news: You will meet people who love your blog, but don't hold your breath or force it. Vow to blog for yourself because you are interested in the topic and it makes you happy. 

I recently started a second blog. No one reads it. No. One. Regardless, I'm exploring new places in DC, taking photographs and learning tons.  Also, I took a photo for this blog that later won a competition. You never know where a blog may take you, but you have to start to find out!

Where to start? Inspiration for Posts:
1. Personal experience & writing prompts (set a 15-minute timer and use a prompt like : self-portrait, holidays, the new year's resolution you didn't keep, a piece of clothing you keep but no longer fits, a window, your hero, a meaningful conversation with a stranger, your first childhood memory)
2. News stories and google key-word alerts
3. Photos, videos and quotes - people love multimedia!
4. Highlight other bloggers, interview other people, invite guest bloggers
5. Lists - your 5 favorite blogs, 5 favorite songs, 5 favorite quotes, 5 favorite people or places

These suggestions are from my "Writing and Blogging Roundtable" presentation, given at the NN Conference in October 2011. Please feel free to ask additional questions or post helpful tips as comments below. Happy blogging!

A Dreamy Year

"If one advances confidently in the direction of one's dreams, and endeavors to live the life which one has imagined, one will meet with a success unexpected in common hours."

- Henry David Thoreau

2011 was an exciting year of "firsts" for me, including:

1. the first SLEEP WALK in Washington, DC

2. Marie Claire article

3. my first time on TV

4. learning to dance (Nia)

5. giving three presentations at national NN conference

6. featured author in a magazine (AVALON)

7. my first photo-shoot (I AM Modern)

8. attending the first musical concert honoring narcolepsy (Wake Up Nashville)

9. art journaling & oil painting

10. first place in a photography competition

11. my first crow pose in yoga

12. and winning a national Public Awareness Award  

I'm still shocked reviewing this list. All this happened to me? In one year?! I am so grateful for the extraordinary opportunities of 2011. 

It was also a year of personal growth.  A few lessons learned:

1. Listen to my "gut instinct" even when inconvenient.  

2. Peaks and valleys - face disappointment with compassion, trusting there's a bigger plan.  

3. Rejection is part of the process. Let it go. 

4. Never give up. Ever onward!

"Listen to the mustn'ts, child, Listen to the don'ts.

 Listen to the shouldn'ts, the impossibles, the wont's. 

Listen to the never haves, then listen close to me... 

Anything can happen child, Anything can be." 

- Shel Silverstein

Looking ahead, I'm chasing big dreams in 2012.  I've made my vision board and posted my 3 month plan to my bathroom mirror.  

To reach my 2012 goals, I resolve to: 

1.  Prioritize sources of inspiration and happiness (yoga, Nia, art journaling, photography)

2. Give myself permission to disappear - not forever - but for a little bit. I have four chapters of my memoir to finish. I'm clearing my social schedule to prioritize the completion of my book. So, if you don't hear from me right away, please know it's for good reason!

(These images are from my art journal, which I began after attending a fabulous workshop with Kimberly Wilson at Tranquil Space.)

Lightly Wrapped

This holiday season,

 be gentle with yourself and others. 

Take naps. Smile freely. Dance under the lights. 

A few pics from my Zoolights adventure (it's wild; it's free!). Also, I may be the last person on earth to discover Instagram, but I love it more than anyone else.  Zoolights runs through Jan. 1st. I highly recommend the kettlecorn popcorn. Sometimes, it's the smallest things that warm the heart. 

In closing, my inspiration comes in from chilly Canada today:

"Officially started training for 2012 Boston Marathon for Wake Up Narcolepsy, which is why I ran 5 miles today in the freezing cold temperature of -9 degrees F. I came in covered in icicles because I forgot to pack my warmer running pants. My legs were two icicles. Worth every step!" 

- Monica (Wake Up Narcolepsy's dedicated co-founder and runner extraordinaire) Thank you Monica for your sheer bravery and strength on behalf of people with narcolepsy.

Wishing everyone restful and dreamy holidays!
Xoxo,
REM Runner

Crow Pose: To Risk Falling On Your Nose

A crow is a large garbage-eating bird with a loud cry.  

It is also inverted balancing yoga pose in which you prop your thighs against armpits, squeeze abs tight, hinge forward and pray not to nose-dive!

Over the past 6 months of practicing yoga, my reaction to crow pose has been consistent: "Oh hell no!"  I've watched my crowing classmates in amazement - professional contortion artists disguised in Lululemon gear?!

The position requires upper-body strength I don't possess (in the arms, forearms, elbow joints, hands, wrists, clavicle and scapula). I can't even do the monkey bars.  It also takes hip flexibility.  I'm a runner = inflexible.

Failure looms large in crow pose.  To take flight - you must lean forward face-first... But not too far or you'll topple forward. Also, FACE-FIRST.

Two days ago, Mary Catherine (TS Arlington's yoga instructor extraordinaire) began demonstrating the steps of crow pose in class.  As usual, I thought, "Oh hell no."

Suddenly, I found my right leg lifted, then my left. For about half a second.

"Don't believe what your eyes are telling you. 

All they show is limitation. Look with your understanding, 

find out what you already know and you'll see the way to fly."

-Richard Bach

"Strange," I thought. I tried again and found myself air-borne a bit longer.

Next time, I counted to 5, thinking "OMG, I'm doing it. OMG, I'm still doing it?"

The distance between my body and the ground felt infinite (even if it was less than a foot).  "I could stay here all day," I thought.  I felt as peaceful as a lotus flower floating over a pond.

Soon, my balance shifted and I returned back to all-fours.

Class moved on, I smiled widely and tears welled in my eyes. The dichotomy of being a yogi with narcolepsy struck me more than ever.

People often ask if yoga improves my narcolepsy.  In my experience, yoga does not directly affect my symptoms.  Instead yoga gives me a much greater gift.

My body is paralyzed at times (a narcolepsy symptom called cataplexy).  As a result, I've burnt myself with hot tea, I've dropped things, I've stumbled and I've fallen.  Medication improves this, but doesn't  erase it.

As you might imagine, the fear of falling is almost worse than the actual falling.  I've respected my hesitations in yoga class, but ever so slowly and without realizing it, I've found trust in new places.

Yoga has given me moments of pure grace, strength and balance.

I never imagined that I'd hold this body in my arms.  Now, I can't imagine a day without taking flight.

-----

Please read Mary Catherine's post about getting to know me (her yogi with narcolepsy)!  "Yoga and Narcolepsy," Starr Struck Blog, November 22, 2011. 

Thank you, Tranquil Space, especially Lisa and Mary Catherine - for helping me find my edge and eventually, my crow.

The F Word

The F word is my favorite word and the subject of today's post. 

"So what is narcolepsy exactly?" someone asks.

A thousand words race through my head.  If I was a computer, my screen would freeze at this point. System non-responsive... I spit out a few nonsensical statements and then shut down. Communication failure.

Truth is, narcolepsy is many things: symptoms, medications, side-effects, quality of life, brain cells, scientific processes, dreams and nightmares.

Where do we begin? How do we avoid system failure?

In a previous post, I offer a few basic communication guidelines:
1. Keep an upbeat tone
2. Leave out big science-y words
3. Less is more - I limit myself to 1 or 2 sentence responses and let people follow up if they're interested.

To follow these guidelines - the F word comes in handy:

F is for FASCINATING

Narcolepsy is a fascinating disorder. The symptoms are fascinating. The science is fascinating. (You don't have to say "fascinating" over and over, but you get the point.)

Think of this as the trailer for your movie.

Someone asks, "What's it about?"

If you say, "It's about a terrible illness with no redeeming qualities that no one cares about or understands."

Do you think people will line up outside the theater to see that movie?  Would you? I wouldn't. Life is busy and stressful and everyone has problems and hardships of their own.

Entice them. 

By describing narcolepsy as fascinating - you are saying, "I know something cool that you don't know..."

Once they buy a ticket - you can get into more serious stuff.  Is this false advertising? I don't think so.

Narcolepsy is truly fascinating. In later posts, I will discuss how to balance the gravity and seriousness of the disorder with the redeeming qualities that will make everyone glad they attended the movie.

--------

Note: This post is derived from my communications presentation, "Advocating for Yourself and Your Health" at the national Narcolepsy Network Conference 2011 in Las Vegas. I received overwhelming positive feedback about this session, so I've decided to share key nuggets of wisdom here...  My secret weapons, if you will.

Thanks so much for taking an interest in raising awareness about narcolepsy!

REM Runner Julie Flygare Featured in I AM Modern Magazine

I am so honored to be featured in I AM Modern Magazine's Holiday 2011 Edition.

I AM Modern is a Health, Beauty & Lifestyles Magazine for Modern Woman of the Washington DC area.  It's a social media fueled magazine and offers great articles about the Washington DC suburbs.

Since moving to the area, I've enjoyed reading their profiles of inspiring women.

When the Editor-In-Chief contacted me about possibly featuring my story, I was speechless.

Turns out, my good friend, Gail had nominated me! Gail's support continues to amaze me. I feel so lucky to have such a loving thoughtful friend. Thank you, Gail!

It took me a few minutes to process, but then I said "Yes - of course!"
Raising awareness about narcolepsy and cataplexy is a joy. 

Best of all, I got to feel like a beauty queen for a day when professional photographer, Michael Vonal came to my house to photograph me for the magazine! Michael Vonal is a leading portrait photographer in the Washington DC area.

I was nervous for my first-ever "photo shoot" but Michael made the process fun and easy.  If you're looking for a portrait photographer, I highly recommend Michael Vonal Photography.

I hope you enjoy this Profile and the others.  A big thank you to I AM Modern Magazine and Michael Vonal Photography.

It's a proud day to be a person with narcolepsy!

To read the story: http://www.iammodern.com/julie-flygare.html

Like it? Tell them!  http://www.facebook.com/iammodern

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