Interview with Julie Flygare, Author of “Wide Awake and Dreaming” Plus A Chance to Win A Signed Copy of Her Book

Browsing through the reviews 47 reviews already left on Amazon (and kicking myself for not leaving one of my own yet), I noticed some common themes from those who have read Julie Flygare’s “Wide Awake and Dreaming: A Memoir of Narcolepsy.” One such theme was that for people with narcolepsy, reading can be a challenge. I often measure how good a book is by the number of times I fall asleep while reading it. I didn’t fall asleep once! In the reviews, several people with narcolepsy also mention that this is the first book they’ve been able to read without falling asleep. There are lots of reasons why! This well-written memior hits home for those of us with narcolepsy. Though parts of our story vary – symptom onset, treatments, coping strategies, etc – the struggles we share are often the same. Julie puts into words the emotional battles we all share as we try to adapt to life with narcolepsy and learn to accept it. I knew I had to interview her to find out more! Don’t worry, there are no spoilers here. :) I’m also pleased to have a signed copy of her book to give to one of my readers. Details on how you can win it are after the interview.

I cannot imagine how excited you were to announce the release of your memoir. How are you feeling now that the book has been released for a few weeks? Has the surreallness (if that’s a word) subsided at all?
The book release is getting more exciting with time because more people are reading it, writing reviews and sharing with friends. I never imagined such an overwhelming positive response and I’m beyond thrilled.”

How long did it take to complete the first draft of the book?
About a year. I am old-fashioned and write my first drafts by hand. The first draft was the best part of the journey. I would feel so “high on life” after finding a new beautiful way of describing something. I’m very focused on how my writing sounds, as much as what it says. I want my words to slip off the tip of the tongue like poetry. The hard work was in the editing process.”

Once you had the book written, what was the process to get it from draft to the final release? Did you ever have second thoughts about publishing the book?
“I began this process very determined but also naive. I read everything I could on writing and publishing. There are countless steps and I’m glad I didn’t know how long it would all take. Patience is not my best virtue but I stuck it out. Publishing this book is my greatest accomplishment to date, so I would never second guess it.”
You share a lot of personal stories and struggles in your memoir. Which chapter was the hardest to write?
Writing “Undertow” (Ch 8) and “Monster” (Ch 11) were particularly emotional – but also any scenes with cataplexy or hallucinations. I mentally re-lived these scenes to describe them accurately. Sometimes I was left sobbing after a writing session. I suppose I was in shock or survival mode the first time around and couldn’t process it all. Writing about it years later made it very raw and real.”

Which is your favorite chapter?
“Hard to choose! I love “This Too Shall Pass” (Ch. 14) because of the juxtaposition between the highs and lows of my life. This is also when I begin to discover my silver lining of living with narcolepsy.”

 You’ve done so many things in 2012 to help raise awareness and to advocate for people with narcolepsy like organizing the FDA campain and running the Mt. Washington road race. How did you find time to do all that while writing your memoir?
“I took on the FDA campaign for the narcolepsy community and running Mt. Washington to honor my father. I felt compelled on a personal/moral level to do these things, no matter of having time or energy. When I set my mind to something, the world usually rises to help me reach my goals. Plus, having short-term projects helped me stay sane while the book project felt “endless” for so long.”

 Speaking of some of those events which had the biggest impact on you? Which do you think had the biggest impact on the narcolepsy community has a whole?
“I really hope the book has a large impact on the narcolepsy community by helping to raise accurate awareness and open people’s hearts to our fascinating disorder.”

 I’ve heard other PWN say they are considering writing a book about their experiences. What advice do you have for them?
Go for it! If writing a book is your dream, start today, make a plan, begin researching and writing. Most importantly, do not listen to anyone that tells you that you can’t do it. Everyone is different – with or without narcolepsy. People who tell you can’t do something are projecting their own experiences and failures upon you. Only you know what you are capable of and willing to sacrifice to reach your goals. One of my favorite quotes is “It always seems impossible until it’s done.” I look forward to reading other PWNs books about their experiences!”

 Now for a bit of a lighthearted question. This is the second memoior I’ve read where the author has completed a marathon after a major medical event. Both books share something else, a bathroom-related incident, and I’ve heard that some diehard runners do not stop to use the porta-potty no matter where they are and how bad they have to pee. I have to know – did you see anyone pee while running?
“Too funny! Running 26.2 miles can do a number on your body, that’s for sure. I didn’t pay too much attention to others during the race, as I kept my head down to avoid cataplexy.”

Do you have plans to write more books in the future?
“Writing is my passion so I hope this book is just the beginning.”

Thank you so much, Julie, for the interview and for sharing your story (and therefore part of my story) with the world!

Would you like to win a signed copy of Julie’s book? Entry is simple. Just leave a comment below about why you’d like to win (and make sure you use a valid email address). You can get a bonus entry if you “like” Strides Against Narcolepsy on Facebook. I will take entries until Friday, January 11th 11:59:59 pm PST. The winner will be chosen at random and contacted over the weekend. Good luck!

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Comments

  1. Holly Twedt says:

    I would like to win the autographed book to share with my patients as a social worker! I talk to my patients all the time about being checked for sleep disorders and even more since I asserted myself and was diagnosed! It is amazing how many of them find out they have a sleep disorder and get treatment! So something good comes from my awareness!

    • admin says:

      I admire social workers so much. You have an emotionally-demanding job, one I am not sure I could manage. I think it’s great that you talk about sleep disorders with your patients!

  2. Elaine Butler says:

    I have already purchased two of Julie`s books . I bought two as I wanted family members and friends to get an insite into what we live through everyday. You probably read my review on Julie`s book on amazon. As my books are both been passed around at the moment and I don`t intend them to be returned, it would be a great honor to have a signed one that I could treasure as my own. Julie has been such an inspiration to me since discovering her almost a year ago.
    I set up a private facebook support group for pwn in Ireland and their careers last June. Julie along with many inspiring people with Narcolepsy have helped me encourage and support my members as they do me..

    • admin says:

      That’s fantastic, Elaine! I’m happy your family is reading the book as well. I asked my husband to read it. He hasn’t yet, but I’m sure he will soon. I may get another copy or two for family members. It’s a great idea!

  3. Katina Foster says:

    My copies of Wide Awake and Dreaming are also being passed around between my family and friends. I would like a signed copy of Julie’s book because reading it was truly a life changing event for me. I wasn’t ready to accept my diagnosis, even though my symptoms had been getting worse for two years. I was terrified of how my family and friends would react if I told them about the cataplexy, hallucinations, etc… It felt like I was keeping an embarrassing and shameful secret and I isolated myself more and more to avoid any of my symptoms being noticed. Reading Julie’s book inspired me to begin talking to my friends and family and her courage in describing her struggle gave me courage. I cried through most of the book because it was such a huge relief to know I wasn’t alone. Now I’ve started treatment, met other PWN, and have an open dialogue with my family. I finally feel like life is going to be okay.

    • admin says:

      I’m so happy Julie’s book helped you realize you are not alone; you most certainly are not! When I went to the doctor and he started asking me about hallucinations and stuff, I wasn’t completely truthful because I was worried that I wouldn’t be taken seriously yet again and that he would just say I needed to go see a psychiatrist. I had no idea that was part of narcolepsy. I didn’t really even know they were hallucinations; I just thought I was having really bad dreams that seemed especially real. It’s really difficult for me to explain it to people still, mostly because I still get frustrated when they say, “But you don’t look tired.” Or how about, “But you don’t just fall asleep.” Or “Everyone has bad dreams.” Books like Julie’s are so important because they help us to be able to communicate what it’s like to live with narcolepsy. Life may never be the same again, but you’ll find a new normal, and it will be more than ok. :)

  4. Belinda Outhwaite says:

    I have just ordered and awaiting delivery of this book. If I won I would keep it and give the other copy to family as they are often the worst to accept and understand life with narcolepsy

    • admin says:

      It is difficult for family and friends. Part of it has to be that they don’t want to accept that someone they love has a serious illness.

  5. Kate says:

    I have read this book via the Kindle app on my phone. I too, stayed up too late reading a few nights in a row, and need to leave my review on Amazon. I really want a hard copy so I can easily share it with my family and friends, so they begin to understand what N is like–besides the fact that Julie has an amazing way with words and I was only bummed the book wasn’t longer because she writes with these great phrases that are delicious to read (mind you, the book is plenty long, for anyone reading this note who hasn’t read it yet…but I didn’t want it to be over). And the optimism in the last chapter has really given me hope as I come to terms with my Dx, which I received just 7 months ago, and I am struggling to figure out how my life has changed and what this means going forward.

  6. Moya Ni Cheallaigh says:

    I m really looking forward to reading Julie’s book when I get around to ordering it! Narcolepsy makes me a terrible procrastinator so winning this book would guarantee that I d get to read it sooner rather than later!! Well done Julie. Social Media has changed my life re narcolepsy- I spent 18 years not talking about it and now I can get in touch with people who support each other all over the world every day. Fantastic!!!

  7. cat says:

    I have read this book nd loved it. Julie is such an inspiration for those of us who have narcolepsy and I’m sure even those who don’t… t would be an honour to own a signed copy :)

  8. Sadie Defined says:

    I always knew I was different, but I wasn’t sure why. I would sleep anywhere, on the floor, on a friends couch, in a car, in a movie, on the concert. I slept away my teenage years, almost failed out of high school because I couldn’t stay awake in class, Was stuck in summer school because of failed classes, I’ve lost friends, and boyfriends. At 23, I remember being pregnant and trying to work, I’d lye to my boss and say I was had all day morning sickness, so I could go to the bathroom a lay on the floor while my body forced me into a sleepy coma, using my sweater to protect my face from germs. I was so embarrassed… nobody knew; only me (and now anyone who reads this) but it’s being reduced to the floor in a bathroom that made me cry once I woke up… the floor that was walked on by 30 men a day with their dirty work boots, their missing the toilet because they were careless while urinating, their spilling soap and dirty water; to me this was my place, my place where I could succumb to the sleep that would take over my body… with my baby growing inside, laying on the floor I’d cry because, why wasn’t I like everyone else, why couldn’t I make it through a day? I thought that I was just pregnant and that everyone was so tired. Then I looked around at my peers and realized that they weren’t like me, they didn’t have to nap all the time. I convinced myself that I was lazy, that I was an over sleeper and everyone was right about me and I was the one with the problem in life. I pushed myself harder and harder everyday, I found myself fired from a job 4 years later because I couldn’t make it to work on time, because I’d sleep in my car at lunch and not wake up in time to get back inside, because I’d call in sick because I couldn’t get out of bed in the morning, because no matter what I did, I couldn’t do it. I repeatedly saw doctor after doctor, “your over weight, you need to get up and move around, get a life, get a hobby, you are your own problem,’ they’d tell me. I continued to beat myself up, tell myself that I was tired because I was 40lbs over weight, because I had a busy life, because I just SUCKED as a person… I told myself for years that I wasn’t as good as the rest of the world- because I wasn’t tuned-in, interested, or as engaged in life… all because I couldn’t stay awake.

    In last year my husband had an affair. I was devastated, our family, our life, everything came to a stop. Long story short, I sought therapy. Upon telling my life story to one person, he referred me to a sleep center. Apparently despite everything that was falling apart in my world, I didn’t meet depression requirements and therefore being to tired was a bit odd, especially with my history of being tired, I felt relieved to know that maybe someone would help me, we all figured I has insomnia or something commonly known about and that it could be fixed.

    Narcolepsy with cataplexy… Go figure, right? What’s that? I don’t have that? I don’t fall over; I’m not like those people in movies, the punch lines of jokes, “those people”.

    So here I am, 29, and I finally have an answer, finally I can explain why I’m so different from everyone else, I can explain why I can’t make it through a day like everyone else, high school explained, jobs explained, college explained, sleeping everywhere explained, life as Sadie Defined…. Finally Defined.

    I just am coming to terms still with the, “why me”, and I don’t know anyone else who has what I have…While everyone else was out making grand plans for their life, I could hardly make it through a day, I dreaded all the days that followed, because it never changed, no matter what I did, I sleep was always inevitable. Now that I have a diagnosis, where do I go from here? How can I make this better? I’m still not in 100% control of my life, I’m controlled by medication, and it’s slightly covers up the real, “me”. I’d like a copy of your book, because honestly I can’t afford to buy one, because I need a friend, because I need comfort in knowing that someone before me has excelled in life, taken control of what they can, and shown the world that we too can make grand plans.

    • Sadie Defined says:

      Not sure why that’s on there twice! Sorry! My internet connection is kinda crazy tonight… or maybe I fell asleep and sent it twice… Who knows.. lol <3

  9. Lorrie says:

    Julie is an amazing advocate for people with narcolepsy. I’ve had the pleasure of attending her sessions at NN conferences. I’m so glad that she has written a book about her life experience with N. As the spouse of a PWN, I am always looking to learn more about the disorder that my husband has. I would love to own an autographed copy of her book. After making the rounds in my family, it would be proudly placed on my bookshelf next to my autographed copy of M. Utley’s Narcolepsy A Funny Disorder That’s No Laughing Matter.

  10. Rose says:

    When I was first diagnosed with Narcolepsy I dreamed of finding a book such as this. It was beautifully written with such detail and reality of what it means to live with such an unpredictable and demanding disease. I would love to have a signed copy to give to my Uncle who also has Narcolepsy, and who grew up in a generation where he was told “he was just depressed,” and didn’t have a “real” disease.

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