Monday, October 31, 2011

Welcome to the World's Sleepiest Pumpkin Patch

Last week, I asked individuals to submit sleep and dream themed pumpkins to create a virtual pumpkin patch. I am so excited to reveal the creative entries from all over the country!

"The Nightwatch - protecting against nightmares and hypnagogic hallucinations"


The Nightwatch - Carved by Trinity

"Sweet Dreams of Summer"
"Sweet Dreams of Summer" by Hemingway Family after 10 inches of snow in Sturbridge, MA
"Sleepy Moment"

"Sleepy Moment" by Ming of: rkmlai.LiveJournal.com
"The Big YAWN"
"The Big YAWN" by REM Runner 
"In Hibernation"
"In Hibernation" by Hemingway Family in Sturbridge, MA after 10 inches of snow




"Ms. Punki-Yogi: Dreaming of Yoga"











Thank you for your contributions to my Virtual Pumpkin Patch!

Wishing everyone a happy and fun-filled Halloween,
Julie a.k.a. the REM Runner

REM Runner's Spooktacular Pumpkin Hunt 2011

Last weekend, I traveled via hay-ride to the pumpkin patch, but big pumpkins were scarce and in bad shape. 


Although I love my baby-pumpkin, he wasn't big enough to carve...


On Halloween Eve, I visited multiple grocery stores... ALL SOLD OUT of pumpkins! 


Was this some sort of trick? I wandered near and far - with REM Runner determination to find my sleepy pumpkins...


In the dark of night, I found a patch of slumbering pumpkins -- Trader Joe's saved the day!!


Wishing everyone a happy and fun-filled Halloween! 

Ms. Punki-Yogi and The Big YAWN

Tuesday, October 25, 2011

NBC Interviews REM Runner Julie Flygare On Narcolepsy, Memoir and Yoga

I had the extraordinary opportunity to practice my narcolepsy communications skills with NBC Washington's Medical Producer yesterday. But first, I got to practice yoga with NBC!

I met Lauren and Chester at my yoga studio, Tranquil Space to record B-roll footage at 10am.  Yoga plays a major roll in my memoir - so I was thrilled to highlight yoga in this interview.

Centering Pose
Tranquil Space opened especially for us, so I unrolled my mat in the empty studio. NBC's Lauren is also a yoga instructor, so she offered to lead me through a personal class. As the camera began recording, my stomach clenched. I wondered, "I hope my alignment isn't too terrible!"

Like real class, I closed my eyes and concentrated on my breathing. Soon the camera and crew disappeared from my mind. Even in awkward circumstances, yoga calmed me.

Over the next 40 minutes, Lauren directed me though a series of simple poses.  Chester moved the camera around to various angles.

Warrior II
At one point, Chester went outside to film me through the studio's decorative front window. On the busy Wilson Boulevard, pedestrians blatantly stared - wondering what the heck we were doing, as Chester stood with his massive camera in the bushes.  I giggled and felt a slight tingling in my head - a warning of cataplexy, but my muscles didn't give out, thankfully.

Afterward, we zoomed off to my house for the interview.  I changed quickly, while my living room transformed into an official-looking studio.  I clipped the microphone to my collar and ran the wire down my blouse.

NBC 4's great crew
Settling in for the interview, I felt fearless and ready.  I hadn't prepared, but I didn't need to.  My "talking points" were engraved upon my heart and mind.

So what did we talk about?  You'll have to wait and see! The story will air on NBC 4 Washington Tuesday, November 15th during 5pm news and will be available online soon.

Julie Flygare's NBC Interview
Chester also filmed some B-roll of me working on my memoir at my computer.  I am so thankful to Lauren, Chester and NBC for taking an interest in my story.

"Usually we cover new stuff," Lauren explained, "but I realized, we've never covered narcolepsy!"

I smiled. Narcolepsy is news - not because it just happened yesterday but because it's been there all along - a serious neurological illness that's been overlooked.  Yesterday was one of those surreal days when change felt within reach.

Also, a big thank you to Gretchen and Mary-Catherine of Tranquil Space Arlington for generously allowing us to use the studio!

Julie Flygare's Interview With NBC's Lauren

Sunday, October 23, 2011

REM Runner, Julie Flygare, Talks About Memoir In On-Camera Interview

Check out this great video, featuring Wake Up Nashville hosts, Wake Up Narcolepsy Co-Founders and yours truly, the REM Runner, at Wake Up Nashville event! I discuss my upcoming memoir project.


Learn more and get involved: Follow Wake Up Nashville on Facebook!

Calling All Creative Cats and Sleepy Pumpkins

Mr. Punk-N-Snooze (Halloween 2010)
Last fall, Mr. Punk-N-Snooze made a special guest appearance here. This year, I present a challenge to YOU:

1. Create your own SLEEPY PUMPKIN. Be creative - anything sleep or dream related goes!

2. Send a photo of your pumpkin to: julieflygare@gmail.com by Monday October 31st @ 12 noon.

I will reveal all pumpkins in a virtual Sleepy Pumpkin Patch on Halloween Night!  Don't feel like carving? No problem, you can always draw a picture or cartoon to submit.

FUN FACT:
Seeing a pumpkin in your dream implies your openness and your receptiveness to new ideas and experiences. Or, the dream may relate to the Cinderella fairy tale where a carriage turns back into a pumpkin. In this context, a pumpkin may represent a situation in which time is running out. (According to Dream Moods Dictionary)

Mr. Punk-N-Snooze (Halloween 2010)

Wednesday, October 19, 2011

Review: MTV True Life I Have Narcolepsy Shines Bright Light on Narcolepsy and Cataplexy


I turned on my TV and cataplexy starred back at me.  I smiled.

The program information for MTV's True Life "I Have Narcolepsy" described:
Two young women, Julie and Katie, discuss in detail the challenges they have had to endure after being diagnosed with cases of Narcolepsy, which causes extreme sleepiness, and Cataplexy, which causes sudden muscle failure.
Cataplexy in the spotlight? Way to go, MTV!

Cataplexy is a little-known but major symptom of narcolepsy. I lived with it for two years without knowing what was wrong.  Once I found the word cataplexy - my diagnosis of narcolepsy came soon thereafter. But enough about me....

Plot Summary:
MTV True Life: I Have Narcolepsy featured two amazing young women with narcolepsy:

Rem Runner Julie Flygare with MTV True Life I have Narcolepsy's Julie
First, we meet Julie, age 16, who began experiencing symptoms of narcolepsy only 4 months prior. She hasn't explored treatment options yet. Her loss of muscle tone with emotions like humor (cataplexy) is getting worse and her mother worries about Julie's safety.

What if she falls against a glass door or onto something sharp? On a few cataplexy falls, Julie hurts herself landing in unnatural positions. The danger is becoming very real.

Despite the worsening of her symptoms, Julie is skeptical of the medications available. She fears, rightfully so, that there will be major side-effects.

REM Runner Julie Flygare with MTV True Life I Have Narcolepsy's Robby and Katy

Next, we meet Katy, age 25, who has lived with narcolepsy with cataplexy since her teen years.  She seems to manage her symptoms fairly well with medications - but her boyfriend Robby sees the negative ways these drugs impact Katy's life.

Katy decides to try going off of her medications cold turkey to show him the alternative.  Katy's sleepiness and cataplexy dramatically worsens. She becomes nonfunctional quickly and Robby gets frustrated with her.

I won't give the rest away - you really MUST WATCH THIS SHOW!

REM Runner's Review:
It was difficult for me to watch Julie and Katy's episodes of cataplexy.  Tears streamed down my face.  My stomach clenched with nausea.  It was like watching a car wreck you can't stop.  Cataplexy has been a part of my life for six years - I should be "used to it," but it's still gut-wrenching. You must see it to believe it.

There are treatment options for narcolepsy that can help.  The True Life episode doesn't highlight any individuals managing their symptoms effectively. This is okay - given the nature of television - but it isn't the whole picture.

Like most things, narcolepsy is not a one-size-fits-all diagnosis.  Our community is filled with stories of individuals overcoming adversity to do great things.  Some people with narcolepsy maintain high-powered jobs as lawyers, doctors, financial traders, magazine editors, and professional athletes (to name a few).

Over the past four years, I've found medications and lifestyle habits that greatly improve my symptoms. It's a balancing act and no one is perfect - but some are able to manage life with narcolepsy very successfully.

In closing - THANK YOU to MTV True Life for shining a bright spotlight on untreated narcolepsy and cataplexy! Also, THANK YOU to Katy, Robby and Julie for bravely opening up their lives to raise awareness.  Their efforts inspire me.

A big REM Runner two thumbs up!!

MTV's Press Release about narcolepsy episode:
On this episode of True Life, you'll meet two young people who suffer from Narcolepsy, a neurological disorder that brings on overpowering sleep spells, and Cataplexy, a condition associated with Narcolepsy that causes sudden muscle failure. Julie, once a thriving high school student began to fall victim to Cataplexy attacks, causes her muscles fall asleep resulting falls to the ground unexpectedly several times a day. She is no longer able to drive or participate in activities like dance class for fear that her body will not function properly. Medications are an option but Julie fears that the potential side effects could be just as disabling as the maladies themselves. Viewers also meek Katy, who after suffering from Narcolepsy for nearly a decade, controls her affliction with an ever-increasing slew of pills causing adverse side effects. Katy's boyfriend begins to fear that the amount of medication she's taking could be harmful to her health and is urging her to stop using them cold turkey. Weaning off medications cause her to return to return to overwhelming sleep attacks. Katy must find a balance that will keep her healthy and happy.

Tuesday, October 18, 2011

REM Runner Julie Flygare Receives National Public Awareness Award


While in Las Vegas for the Narcolepsy Network Conference, I was awarded the "Public Awareness Award" 2011 from this national narcolepsy organization on October 15, 2011.

I'm incredibly honored to receive this award.  Raising awareness about narcolepsy is a joy and privilege.  I look forward to continuing my advocacy work in years to come. We've only just begun!

For those unable to attend, here's a short video highlighting the Awards Ceremony and my advocacy work:



A big CONGRATULATIONS to the other award winners, including Manic Ramblings of Marcianna!

Thank you to Main Man of Narcoleptic Knights for sharing his photography.

Monday, October 17, 2011

Narcolepsy Network Celebrates 25th Annual Conference with Record-Breaking Attendance


This weekend, I traveled to Las Vegas for Narcolepsy Network's 25th Annual Conference, along with a record-breaking number of attendees from all over the world.

The conference, at the Stratosphere Hotel, featured presentations by leading narcolepsy specialists and various field experts - from wellness to communications. A wide variety of support groups were offered too.

Dr. Roger's Keynote Presentation - "Narcolepsy Basics"

The keynote presentation "Narcolepsy Basics" with Dr. Eve R. Rogers was great.  Dr. Rogers highlighted important and interesting information about the history of narcolepsy. This solid presentation brought everyone onto the same page and kicked off the conference with energy and excitement.

Dr. Roger gives Keynote Presentation - NN Conference 2011

Most sessions took place at the top of the Statosphere tower with breath-taking views of the Vegas strip and surrounding mountains.  My favorite sessions included Jamie Bennet's creative writing workshop and Stacey Hall's NIA class.

View from NN conference room
In addition, the conference featured an exciting Silent Auction raising funds for Narcolepsy Network. The Hospitality Suite offered a great place to relax, rest and chat.

NN President, Patricia Higgins preparing Silent Auction

Over the weekend, I presented three sessions:

Writing and Blogging Roundtable:
On Friday afternoon, I facilitated the "Writing and Blogging Roundtable." Writing is cheap therapy. Writing about trauma can strengthen the immune system and increase emotional well-being, studies suggest.

Julie Flygare leading session - NN Conference 2011
(Photo courtesy of Narcoleptic Knights)
Over 40 people attended this session - including many great narcolepsy bloggers. We shared ideas, expertise, triumphs and challenges.  I think we may have inspired a few new bloggers as well!


Advocating for Yourself and Your Health:
Saturday morning, over 60 people gathered for the "Advocating for Yourself and Your Health" session.  We reviewed basic facts and discussed strategies for effectively relaying this info to friends, family, doctors and strangers. Then we broke up into small groups to practice our communication skills with example questions.

Julie Flygare presenting advocacy session for large crowd


Joy of Movement:
Saturday afternoon, I had the incredible honor of co-presenting "Joy of Movement" with fellow PWN, Cirque du Soliel performer and my personal hero - Trinity. Over 70 people gathered to hear about our joys and challenges of exercising with narcolepsy and cataplexy.  Look for a separate post about this soon!

The lights of Vegas
Once a year, the Narcolepsy Network conference offers the unique opportunity to honor our experiences living with narcolepsy. We reflect on the past; we strategize for the future; we laugh; we cry; we fall asleep; and we wake up realizing we aren't alone.

As an added bonus, I got to meet many REM Runner followers in person for the first time!

Check back soon for additional conference highlights. 

-----
A big thank you to Main Man of Narcoleptic Knights for documenting my sessions with great photos!
 (Please contact me for additional information about my sessions.)

MTV True Life "I Have Narcolepsy" Premieres Tuesday, October 18th


Grab the popcorn and TV remote! This Tuesday, October 18th 2011, MTV airs True Life: I Have Narcolepsy at 8pm (EST). The show follows the daily lives of three people with narcolepsy.   

MTV has not released footage in advance, but I'm delighted to have met a few of the individuals featured on the show - Katy, Robby and Julie.  They are so inspiring and I can't wait to cheer them on!

REM Runner Julie Flygare with MTV True Life I Have Narcolepsy's Katy and Robby at Wake Up Nashville

Julie Flygare with MTV True Life I Have Narcolepsy's Julie at Narcolepsy Network Conference 2011

Also, I met MTV True Life "I Have Narcolepsy" producer recently at the Wake Up Nashville fundraiser.  I spoke with this MTV producer about the need for greater narcolepsy awareness in America. He struck me as genuine and empathetic.  This is his job, but I could tell he'd become personally invested.  He "got it" - which is so invaluable.

As a person dedicated to spreading truthful information about narcolepsy - I am so thankful to MTV for taking this project on.  I am prepared that this show may not capture the entire experience of living with narcolepsy, given the time restraints and sensationalistic nature of the entertainment industry.

However, this show is the beginning of a much greater conversation in our society.  Narcolepsy is a neurological disorder affecting 1 in every 2,000 people (200,000 Americans), yet it is largely unknown in the public eye.
Chatting with MTV True Life I Have Narcolepsy's Julie after my advocacy presentation at NN Conference 2011
Lastly, no matter how you feel about the show, please be kind when commenting online about to those featured on this show.  These young adults have bravely opened their private lives to raise awareness about narcolepsy.  They have feelings, challenges and dreams of their own.  Remember - whatever you say will be permanently on the internet and they may read it.

I look forward to continuing the conversation - Click here to read my Review.

View MTV's Show Schedule

Tuesday, October 11, 2011

Wake Up Narcolepsy Swings Big for Research



On Tuesday, September 27, Wake Up Narcolepsy hosted the Third Annual Golf Outing at Wachusett Country Club in West Boylston, MA.  At 10am, over 120 golfers set out onto the 18 hole course to begin play.
Scenic view at Wachusett Country Club
A very special individual attended this year’s outing - professional LPGA golfer and narcolepsy advocate, Nicole Jeray, represented Wake Up Narcolepsy at this event.  All golfers had a chance to go up against Nicole, attempting to “Beat the Pro” on a par 3 hole.

LPGA golfer, Nicole Jeray with WUN Golf Outing Players
After an exciting day of golf, everyone gathered at the clubhouse to relax with some refreshments and to browse the well-stocked silent auction.  A buffet dinner followed, around 5pm.

Closing Remarks by Monica Gow
After dinner, WUN leader Monica Gow said a few words of thanks. In addition, Nicole Jeray shared a bit about her experience as professional golfer with narcolepsy.  (I highly recommend Nicole Jeray's great website which helped me a lot after my diagnosis.)

Closing Remarks by Nicole Jeray
Wake Up Narcolepsy's Third Annual Golf Outing raised an outstanding $25,000! Proceeds will be donated to institutions searching for a cure for narcolepsy.

Although I was unable to attend this year’s outing, I am so honored to be a part of Wake Up Narcolepsy – a great group of people raising narcolepsy awareness and vital research funds.  A big thank you to all those who participated and supported this event!

Below are few more pictures from this year's outing: 

LPGA Golfer Nicole Jeray's bag
WUN Golf Outing Participants
WUN Co-Founder Kevin Cosgrove and Parents

Sunday, October 9, 2011

REM Runner Visits U.S. Supreme Court for Case involving Woman with Narcolepsy



The Court:
Single-file, we entered the courtroom as strangers and sat together on a long wooden bench.  The nine leather chairs at the front of the room were vacant.

This past Wednesday, I had the extraordinary opportunity to visit the Supreme Court of the United States to hear oral arguments in a case involving a woman with narcolepsy - considered by some to be the most important religious and civil rights case in years.

Waiting for the Justices, my eyes wandered.  The sanctity of the space was obvious in every detail. Tuscan marble columns soared as high as redwood trees. Gold-tipped flowers decorated the coffered ceiling.  Red velvet curtains framed the room with theatrical gusto.

Whispers faded as the nine robbed figures entered quietly and assumed their seats on the high bench. The air was thick with tension as the formal proceedings began, but as soon as one of the Justices made an off-hand remark, everyone laughed and relaxed a bit.


The Case:
Hosanna-Tabor Evangelical Lutheran Church and School v. EEOC (No. 10-553), involves Cheryl Perich, a woman with narcolepsy who worked as a teacher at a Michigan school run by a Lutheran Church.  Ms. Perich claims that she was fired from her job for pursuing an employment discrimination claim.  The church school claims that she was let go for religious reasons and that her threatening to sue was out of line with their internal dispute resolution policy.

The issue before the Court is not whether the church school discriminated or retaliated against Ms. Perich in letting her go.  Instead, the question is whether Ms. Perich has a right to pursue any employment-related claim in a court of law or whether the "ministerial exception" bars her from doing so.  For more background, read my case analysis.

The "ministerial exception" prohibits most employment-related lawsuits against religious organizations by employees performing religious functions.  In this case, the Court examines whether the exception not only applies to religious leaders, but also to religious elementary school teachers.  Ms. Perich taught a full secular curriculum, but also taught daily religious classes and regularly led students in prayer and worship and she was a "called" teacher.


Oral Arguments:
Douglas Laycock argued first, on behalf the Lutheran school.  Less than a minute into his remarks, the Justices began interjecting questions. Mr. Laycock, a renowned Constitutional and religious scholar, went from calm to flustered quickly.

He argued that Ms. Perich was a "minister" under the ministerial exception, however he had a hard time defining the limitations of the exception. For example, should a church's janitor be considered a minister?

He began making concessions that there were some circumstances when a court could examine the secular duties of a parochial teacher.  Justice Kennedy responded, "That's what this case is. But you don't even want that issue to be tried. You say that issue can't even be explored."

Eventually, Mr. Laycock outlined a definition of "minister" as anyone who teaches religious or divinity class. "If you teach the religion class," he stated, "you’re clearly a minister." Personally, this approach puzzled me, as many religion classes are academic in nature. The study of religion seems different from religious worship.

Next, Leondra Kruger, assistant U.S. Solicitor General, argued on behalf of the Equal Employment Opportunity Commission. Ms. Kruger faired about as well as Mr. Laycock, as the Justices quickly poked holes in her position.

Ms. Kruger argued that anti-discrimination and retaliation laws were so important in these circumstances that limited deference should be given to religious organizations in stopping individuals from coming to the government to report illegal conduct.

"That is extraordinary," Justice Scalia responded with passion. "We are talking here about the free exercise clause and about the establishemnt caluse, and you say they have no special application?"

"I, too, find that amazing," Justice Kagan added.

Overall, the Court struggled to balance the competing interests of the church and state. Could there be circumstances when a government interest trumped religious autonomy in employment matters? Justice Sotomayor asked, "How about a teacher who reports sexual abuse to the government and is fired because of that reporting?"

As soon as the Justices began exploring meaningful boundaries for the ministerial exception - some Justices felt they were getting too close to "judging" religious doctrine. It was a catch 22. I have no clue how the U.S. Supreme Court will resolve this issue - as they seemed deeply troubled by all the choices presented to them.


In Conclusion:
Regardless, it was an amazing experience I'll never forget.  As a law student, I became familiar with these Justices by reading their opinions in small print from heavy books.  It was thrilling to watch their personalities and beliefs come to life in 3D!  They were so human - openly grappling with really tough questions.

Justice Thomas was mute, as usual. He slouched low in his chair with drooping eyelids.  I couldn't help but wonder if he's getting enough sleep.

Lastly, I am sympathetic to Ms. Perich - as she has faced an extraordinary amount of adversity. Medically, she overcame mysterious symptoms to obtain proper diagnosis and treatment for narcolepsy. This is no small feat. On average, people with narcolepsy suffer symptoms for 3 - 5 years before receiving a proper diagnosis and treatment.

Around the same time, for religious reasons or otherwise - she lost her job. Now, Ms. Perich has spent over six years involved in a legal case that has taken on a life of it's own.

Ms. Perich's circumstances have become a vehicle to address difficult societal questions of the seperation of church and state in America.  I hope we can all remember that she did not create these tensions and conflicting interests in our society - rather they have been there since the United States was created.

It is a noble enterprise to respect both religious and civil rights in America. Unfortunately, these interests conflict sometimes, but it doesn't make the pursuit any less worthy.  I certainly don't envy the Justices' role in deciding this case. Perhaps I know why they may not sleep at night.


-------
A few more photos from Wednesday October 5th 2011:

REM Runner Visits the U.S. Supreme Court
Beautiful Morning at U.S. Supreme Court
REM Runner Visits Supreme Court
Justices Breyer and Scalia at Senate Judiciary Committee Hearing "The Judge's Role Under the Constitution"
Justices Breyer and Scalia at Senate Judiciary Committee Hearing "The Judge's Role Under the Constitution"
For more on the oral arguements:
New York Times, "Religious Groups and Bias Get the Justices' Attention,"by Adam Liptak Oct. 5, 2011
SCOTUS Blog: "Argument Recap: Blurry Line Between Church and State."