In the Health section of Marie Claire’s October 2011 edition, Sophia Banay Moura tells a story most of my blog readers can identify with greatly. Especially one reader in particular, Julie Flygare, because the story the author is portraying, is hers.
On pages 274 and 277 of the latest issue, Julie’s story is told marking how she came to realize her disorder, and the struggles she had during that time. It’s incredibly heartfelt , something I completely identified with and I highly recommend reading it as soon as you are able. This story may chronicle the evolution of her awareness about herself, but in my opinion the real “awareness” story does not end there.
Since Julie’s diagnosis in 2007 she has vastly contributed to awareness of the public sort by speaking to scientific researchers, Harvard medical students, and the general public. She also speaks to narcolespy communities about advocacy. ( Including the up coming Narcolepsy Network Annual Conference in Las Vegas, Nevada. Note to self: Do Not Miss! ) An avid runner, Julie started a blog about running with narcolepsy in 2009 called REM Runner which since has become hugely popular and widely recommended by the PWN community. In April of the following year she raised $6,000 for narcolepsy research while participating in the Boston Marathon with Wake Up Narcolepsy and is training again to run next year. Also an incredible photographer she has a website of her work and a blog called District of Sculpture about monuments great and small in the DC area. Having just turned 28, Julie is writing a medical memoir about life with narcolepsy.
Wow that all sounds so incredibly plagiarized. Haha. Oh well, I tried. Moving on, let me tell ya what I really think…
Ms. Moura from Marie Claire could not have picked a better person to write about. Julie Flygare is kind of a Narcolepsy Rock Star, (An incredibly humble one at that!) and some one we should all pay attention to and look to when things seem impossible. From reading her blog, I can tell you that she tends to not let little things like impossibilities get in her way. Her positive attitude and genuine writings about who she is and how she deals with her disorder, and well, everything else, will take her further than she could ever hope to run. She is easily one of the more inspirational people I have met on my own advocacy journey.
There are days, when I just wake up and think.. “Nope. DO NOT WANT.” and roll over and go try to back sleep. But in the back of my mind, I know somewhere a few states to the north of me, Julie has already gotten up and did everything I need to do three times over that day, and probably did it in heels while juggling chainsaws. haha! I realize how obnoxious that is but I never really think to clearly in the morning. I don’t think any of us do.
The legends in our own minds, the goals of our lives, the person we all strive to be, is out there. Julie has chased that dream much like the rest of us and seems to be successfully gaining on it. ( I imagine it’s because she runs very fast. ) And if Julie can do this, then so can I and you, and you too, and that guy over there also. You just have to want it bad enough. You just have to go for it. Mahatma Gandhi said: “Be the change you want to see in the world.” Julie is bravely carving that path, all we have to do is follow her example.
The very best part of this whole story on the story is this: I am not sure if Julie or the editors of Marie Claire are aware of this or not, but this issue came out right smack dab in the middle of National Invisable Chronic Illness Awareness Week. It could not have been better timing for Julie to share her story. because right now so many people are paying attention! Since it was not mentioned, I suspect it was not planned, but I hope it will turn out to be an added bonus for both the magazine and especially for Julie. She has really earned this.
Want to be in the Julie Fan Club? As far as I know there isn’t one. And I find fan clubs creepy, so if there was I wouldn’t tell you. But never fear, you can follow her on her blog and on Twitter using the following links:
REM Runner Blog
@RemRunner on Twitter
Contact and other information.
We are all so happy for you!