Julie Flygare is a narcolepsy spokesperson and is an award winning author of the book “Wide Awake and Dreaming: A memoir of Narcolepsy.” She lives in Los Angeles and has taken to passionately speaking out across the country about how to cope with narcolepsy.
This isn’t your average nap. Living with narcolepsy, my brain demands to go into R.E.M./dream sleep during the day. Pressure builds and I know it’s THAT time for my brain to do its thing. I get up from my cubicle & head out to my car, hoping not to run into anyone I know along the way because my propensity to have cataplexy is also building strong at the same time … and interacting w/ friends could cause me to stumble or fall.
My car is always strategically parked in the spot w/ the most privacy and shade possible. I roll down the windows, recline my seat and close my eyes — my brain switches over into its active R.E.M. turbulence for 15-20 minutes. (Without #narcolepsy, you would not usually go into R.E.M. sleep during naps.) So while this looks like peaceful or relaxing “napping”, it’s a bizarre and active experience.
Before medication, I spent my life drowning in R.E.M. dream sleep and I feel lucky that I only have to dunk in its waves once or twice a day now. Narcolepsy affects my daily life in other ways too, but this is one of the ways.
I have a confession. I realized recently, “OMG, I haven’t told my Members of Congress that I have narcolepsy!!”
While I consider myself a vocal advocate, I haven’t informed my legislators that I CARE about narcolepsy and sleep research and they should too.
So, I’m excited to share that I will be going to Capitol Hill in November with other sleep community leaders to educate Congress on the impact of sleep disorders and advocate for critical federal funding of sleep research.
And I need your help! As part of this effort, we will HAND DELIVER letters from you to your Members of Congress! Friends in the U.S. – please participate!
2. Save it to your computer with a title like “Jane Doe Letter”.
3. Email your completed letter to us at email@example.com. (Please do not send your letter directly to your Members of Congress, e-mail is often routed away from key staff and mailed letters go through extensive security screening for over a month.)
4. Act now! Deadline is Friday, Oct. 27th.
Why Take Action?
There is a real chance Congress will be unable to reach agreement on FY18 spending bills by the end of the year.
Your outreach will be timely and effective in telling your legislators to finish the process and provide meaningful increases to research funding.
You should expect that your legislators will respond to your requests.
I’m honored to be the first female guest on the Up/Lifted Podcast this week! Up/Lifted is a cool new podcast hosted by Arin Gragossian about “personal history, pivotal moments, & honest stories. And sometimes lifting massive amounts of weight.”
On this show, Arin and I did NOT lift weights, but talked living with invisible chronic health conditions, narcolepsy, Project Sleep, the importance of sleep, memoir writing, marathon running, Elvis and rattlesnakes! Listen to the podcast here.
I hope you enjoy this podcast and please subscribe and rate Up/Lifted on iTunes, Google Play Music, or Stitcher. Also, connect with the Up/Lifted podcast on social media:
Thank you, Arin for featuring my story. Arin is founder and strength coach at Arin Training in Los Angeles, CA. Thank you, friends for tuning in and sharing this post to raise critical awareness of narcolepsy!
I’m so excited to share my Health:Further keynote presentation video. I delivered this speech to over 1,000 healthcare professionals in Nashville, TN last year. My speeches are rarely online – so be sure to check this out! Watch video:
I shared here how mad nervous I was for this speech, but I managed to pull it off!
Please note: this speech was prepared specifically for the healthcare executives audience, so some elements from my typical narcolepsy presentation are included but I also talked more broadly about the importance of working with empowered “e-patients” to innovate healthcare together.
Working with CNN on this piece was particularly meaningful. I first spoke with the reporter, Maria, in January two months before the race after she’d read online about my quest to take on Griffith Park Trail Marathon. On our first call, I could tell Maria was really understanding about the invisible and complex condition. At the end of a wonderful long discussion, she said, “Well, let me know how the marathon goes!”
No pressure or anything… If I wasn’t nervous enough about this grueling race, a major media opportunity now hung in the balance!
CNN saved the story to run this week in conjunction with the National Sleep Foundation’s new Sleep Awareness Week this April 23 – 29, 2017. While Project Sleep celebrated early with Sleep in 2017 on March 10-12 at the start of daylight savings time, we now have another opportunity to raise awareness.
Please share this CNN article with friends and family today to raise critical awareness of narcolepsy. Thank you for your support!
On Saturday, March 25, I was honored to give my narcolepsy presentation at Hoag Health’s Sleep Symposium in Irvine, CA. Because I work full-time with a long commute, I get home fairly late on Friday nights and started counting back from when I was supposed to be in Irvine on Saturday at 9:00 a.m.
The drive to Irvine = 1 hour, so I needed to leave my house by 8:00 a.m.
Packing my Project Sleep items and getting dressed = 1 hour, so I needed to get up at 7:00 a.m.
2 doses of my nighttime medication = 8 hours, so I needed to be in bed by 11:00 p.m.
Oh no! It was almost 9:00 p.m. , so I hurried to eat dinner quickly in order to give my stomach 2 hours to digest before taking my first dose of medication at 11:00 p.m.
The next morning, I miraculously made it to Irvine on time. It was great to see some local sleep community friends and meet many new folks. The free event was open to the public and I honestly wasn’t sure what to expect, but there was a packed house!
I enjoyed the other speakers’ presentations on sleep apnea and insomnia. No matter how many sleep events I attend, I always learn new stuff. In addition, I was impressed with how the speakers answered attendees’ questions with honest and thoughtful responses. I’d say about half of the audience members were people struggling with sleep issues (diagnosed or undiagnosed).
Right before I was about to go on stage, I realized I better run to the restroom quickly, which is where I met a mother of a young woman living with narcolepsy with cataplexy. Turns out, this mother had been following my blog for many years, as her daughter was diagnosed within a year of my diagnosis back in 2007.
The mother was here to hear my speech, after reading on my blog that I’d be speaking here – within walking distance from her house! We talked about how her daughter was doing with some recent medication changes. She shared how much my book had meant to her family.
How odd, to have this meaningful conversation in the fluorescent glare of a ladies room in a hospital. Life is funny, isn’t it? I cherished this moment so much and would’ve talked longer but had to hurry back to the auditorium to give my presentation!
As always, I was a bit nervous to go on stage, but once I got going, it was smooth sailing. I read the passage about my dad at the narcolepsy conference, as always.
Afterward, I gave out Project Sleep awareness items at the expo and signed a few books. It was a wonderful day and I was proud to represent narcolepsy and the voice of a person living with a sleep condition.
I’m so excited to give my narcolepsy presentation this Saturday, March 25, 2017, at Hoag Neurosciences Institute’s Sleep Symposium in Irvine, CA. The event is FREE and open to the public, register here to save your spot!
The event kicks of at 9:00 a.m. in the Hoag Hospital Irvine Auditorium. I speak from 10:45 – 11:30 a.m. and I’ll be signing books and giving out Project Sleep information at the 12noon Expo.
My speech, entitled “When Dreams Leave the Night” details my journey living with narcolepsy with cataplexy – from facing invisible symptoms to finding proper diagnosis and treatment; from facing misperceptions to becoming a vocal advocate and author. This is my favorite talk that I give, so I’m really excited to share it with the Irvine, CA community.
If you live in the area, PLEASE JOIN US! The entire lineup looks fantastic.
Alanna lifting weights in Sydney, Australia and Julie running in Los Angeles, USA
One of the best parts of the Griffith Park Trial Marathon took place about 10 days BEFORE the race.
Arriving home from work one night around 8:00 p.m., I was totally drained and wanted to call it a night, but I had to go running. Ugh. I’d run over 270 miles in four months, and only had a few short training runs leading up to the marathon. Yet, not one bone in my body wanted to go run 3 miles that evening.
So, I vented on Facebook about feeling unmotivated and shared how I trick myself into running by leaving the house “walking”. After FB venting, I got my butt out the door for my walk –> run.
Once back home afterward, I received the most incredible FB message from a fellow person with narcolepsy, Alanna in Sydney, Australia. Alanna wrote (and gave me permission to share):
I just wanted to share this little tidbit that shows how far your reach extends in this world… I started a new health regime this year, trying to find a way to keep myself healthy and build habits that actually work with my life and narcolepsy. I have a healthy eating plan and go to a performance gym called DC Health Performance, in Crows Nest, Sydney, twice a week where I do sessions supported by a trainer, and I’m trying to do at least something active every single day.
It took until week 5 for narcolepsy to get in the way, and I had a big cataplexy attack in the gym. The trainers were brilliant. They weren’t panicky or awkward, just asked questions and were relaxed and helped me plan out a different program with less weight, shorter sets, and more breaks.
As I lay on the weight bench, my arms floppy and legs not working, my trainer chatted to me about how to find the right balance for our bodies and how individual it can be. Then he said, “like this woman I was reading about, this chick runs, right? And she just keeps going! Even with narcolepsy!”
I realized he was talking about you.
He goes on, “She knows her body so well and so she can run marathons because she knows what’s going on with herself”.
So not only are you a model of how to find a healthy life that suits you and listen to your body, you also inspired someone when they searched for information about my condition. These trainers have quietly demonstrated their commitment by reading up on what I have, and your story obviously captured this guy’s imagination.
So, thank you, and congratulations on being such a wonderful influence on the world.
Reading this left me in tears (in a good way). I can’t believe how interconnected our world is these days – that I could have a positive impact upon Alanna’s experience and also on her trainer’s perceptions of narcolepsy is so surreal. When I take on athletic challenges and write these blog posts, I have no idea how far they’ll reach and impact others.
Furthermore, I was SO inspired to learn about Alanna’s journey to build healthy habits and take on strength training while living with narcolepsy with cataplexy. How badass is that?! And the fact that she found such a wonderful support system at this gym is so heart-warming. What incredible trainers!
Alanna is another amazing superhero overcoming adversity with narcolepsy daily and I’m so proud to call her my friend.
In closing, thank you to everyone who has shared such generous messages of support and gifts to support the scholarship program these past four months. I don’t take one kind word for granted. You give me strength to continue forward every day and I’m forever grateful.
After running Griffith Park Trail Marathon last weekend, I couldn’t be any more excited for Sleep In 2017 (#SleepIn2017) this weekend!
Please join me by staying in bed for 12-48 hours to raise awareness about sleep health and sleep disorders. Yep, you heard me right… The challenge is to REST and SLEEP. Register here and invite your friends and family to join or donate to support your Sleep In benefiting Project Sleep.
Project Sleep will be in bed all weekend, flooding social media and connecting with participants around the world. Don’t miss our featured event – the REM Dance Party with DJ Fe on Sunday night!
Sleep In 2017 Schedule of Events:
Friday 3/10/17 @ Your Bedtime – InstaSleepIn Saturday 3/11/17 @ 12noon ET – Broadcast w/ Julie Flygare Saturday 3/11/17 @ 5pm ET – Twitter Chat Sunday 3/12/17 @ 7pm ET – REM Dance Party w/ DJ Fe
This is one of my favorite weekends of the year and I can’t wait to see your photos and messages. By shining a bright light on the night, we are empowering ourselves and educating our communities.