Spotlight on “Wide Awake and Dreaming” Interview with Julie Flygare

Wow! I have been so busy! I meant to post this much earlier. Managed to catch a fun and exciting cold conveniently over my birthday, and have been playing catch up with life since.

Funny how that always seems to happen… never enough time to do what we really want right?

Happily, my dear friend Julie Flygare was able to find time in her busy schedule to grant me an interview following her newly released book “Wide Awake and Dreaming”  and tells us a little bit about what its like to be an author. Julie has proven to be a very special person to me, personally and professionally, and having her as a muse and source of inspiration has truly been a blessing. I asked Julie some questions I thought would be interesting for all of us, in hopes others find her work and the process she went through as inspiring as I did… and perhaps help others to share their own stories in the future.

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“Wide Awake and Dreaming”

 Interview with Julie Flygare

Marcia: Thank you Julie for taking the time for this! What inspired you to write your first as a memoir and truly put yourself out there as opposed to something anonymous and or fiction?

Julie: Creative non-fiction is my favorite genre to read and write. I never considered writing something anonymous or fiction, it’s not my writing style. I did change most names to protect personal privacy, even my friends who didn’t want their names changed. These changes were made very late in the process because I found it incredibly distracting and jarring to read my story with different names.

Before your book you went public with your Narcolepsy on many platforms. What are the pros and cons of “outing” yourself as a PWN?

Opening up about my narcolepsy has been very freeing. By being public, I’ve had the opportunity to put a face to this illness, raise awareness daily and open people’s hearts to narcolepsy. If there are any drawbacks or fears, they don’t compare to the power and joy of raising my voice up for a cause I care deeply about.

Do you have a specific writing style? How did you develop this? What would you say is your interesting writing quirk?

I’m a little old-fashioned and write my first draft all by hand, resulting of countless notebooks of illegible chicken scrawl. I often write so quickly, like a mad-woman, that I can barely re-read my own writing to transcribe it onto my computer.

Describe your process, fave pen? Fave work station? Fave time of day? Fave coffee joint maybe? How when and where did you bring your dream to life?

I write best at home or at a coffee shop – often listening to techno or classical music. I treated writing the first draft of book like a 9-5 job, but unfortunately creative inspiration doesn’t always work on a 9-5 schedule. If I wasn’t inspired, I worked on my blog, edited prior writing or went out running/walking. Oftentimes, a key phrase would hit me while out running and I stopped to type it into my phone before I forgot it. I often woke up from dream-filled naps with words on the tip of my tongue too.  Once I was “in the zone” writing, it was hard to stop and I would be angry when I had to stop to attend a pre-scheduled appointment or meeting.

How did you come up with the title? Were there other options in your head?

In development, the book was called “Racing Dreams” but I never loved this title. Last winter, I wrote out a long list of other possibilities and sent a survey for friends to vote. “Wide Awake and Dreaming” was the most popular by far, so I went with it.  The very first time I heard Katy Perry’s “Wide Awake” song on the radio last spring, I panicked – worried she was about to “steal” my book title. Thankfully, she was dreaming, and now she’s wide awake. Phew. 😉

What was your favorite chapter to write and why?

I really enjoyed writing Undertow (Ch. 8) about my festive birthday boat cruise and the dark day that followed it. I enjoyed setting the stage for the  juxtaposition between my happy-go-lucky public life and my disabled terrifying private life at that time.

Is there a message within the message in your novel that you want readers to grasp?

The take-away messages will likely vary from reader to reader – depending on where individuals find themselves in their life experience. I hope the book provides some tools to re-examine how we view our circumstances – our gifts, challenges, fears and dreams.

What books have most influenced your life most? Are there other authors tackling this subject that you would suggest?

“The Spirit Catches You and You Fall Down” by Anne Fadiman, “Middlesex” by Jeffrey Eugenides, “A Journey Round My Skull” by Frigyes Karinthy, “Proust Was a Neuroscientist” by Jonah Lehrer

If you had to choose, which writer would you consider a mentor?

Without a doubt, Dr. Oliver Sacks has been the single most inspiring  and influential writer to me. After first reading “The Man Who Mistook His Wife for a Hat” – I gained the confidence to stand tall in my shoes and speak my truth, no matter how crazy it may sound to outsiders. As a person with a neurological illness, Dr. Sacks’ writing is SO validating.

What book or books are you reading now?

“Create the Best Life Ever” by Taylor Wells – Taylor is a huge inspiration to me in finding the positives in life and her recently published book is awesome.

You have made your book available both as a physical entity and an eBook. What is your personal preference for reading? How do you think the two differ?

I prefer reading paperback but I have never owned any tablet or e-reader. The ebook format has helped my book reach a broader audience, which is so thrilling! The only thing missing in eBook readers is the ability to hold the beautiful cover design in one’s hands.

Everyone has that one book, old tired stained, broken, all as a result of much love and much use; the one you just can’t part with…. what is that book for you and why does it hold so much value for you?

Kahlil Gibran’s “The Prophet” – I find new wisdom and inspiration in these pages each time I read it, as I move through different stages of my life.

What is the very first book you remember as a child. Either read yourself, or was read to you? Could you share that memory with us?

“The Little Engine that Could” was a childhood favorite. “I think I can, I think I can.” is a great mantra for life. 

Are there any new authors that have grasped your interest?

I’m a big fan of Jonah Lehrer’s work – especially his writing about neuroscience and the connections between science and art. If Dr. Emmanuel Mignot were to write a book about his life experiences, I would be first in-line to read it!

What are your current projects? Are you looking to write again soon? Do you see writing as a career?

I love writing and it will always be a part of my life in one way or another, as it’s something in me that I cannot deny. I’d love to make a career of writing. Right now, I’m still catching my breath from the publication process and working on a smaller project which I look forward to revealing soon! 

If you had to do it all over again, would you change anything in your book?

I may have added a scene about facing misunderstanding from unsupportive friends and family members. I meant to highlight this a bit more. The book highlights the positive influences – like the Dean of Students and my father, which is great, but not a full representation of the spectrum of responses I received.

Is there anything you find particularly challenging in your writing? Your first book being a memoir, do you feel as if you held back?

Looking back, I believe it was easier for me to point out my own weaknesses and flaws over the weaknesses and flaws of others. I wanted to be raw and truthful, but I was also adamant that this book would NOT be a tool to “get back” at anyone who had hurt me along the way. I attempted to strike a fair balance to be objective and not seem bitter or self-pitying, but in doing so, I may have left some powerful scenes. This is my greatest challenge in writing non-fiction and the only way I held back.

Do you have to travel much concerning your book? Will you be signing copies anywhere soon?

I hope to travel and do book-signings. I will keep folks posted on my blog: www.julieflygare.com and Facebook page: http://www.facebook.com/JulieFlygareAuthor.

Who designed the cover?

Cecilia Soroshin designed my cover using the artwork of Lucy Hillenbrand. The amazing behind-the-scenes story my cover is here: http://julieflygare.com/unveiling-wide-awake-dreamings-book-cover/

What was the hardest part of writing your book?

The editing and proof-reading process was hard in unexpected ways.  I often got sleepy doing the tedious edits and continued editing in an episode of “automatic behavior” well past my ability to do good quality work. When I would eventually re-awake, I couldn’t remember where my consciousness fizzled so I had to re-do big sections many times over to ensure accuracy. Also, this process was emotionally draining – as I relived the book’s experiences over and over again each time I re-read them.

Did you learn anything from writing your book and what was it?

I let go of rejection. The publication process is cut-throat, no one will hold your hand or sugar-coat things. For any artist to work towards his/her goals – you must become resilient to rejection.

What were the challenges (research, literary, psychological, and logistical) in bringing it to life?

Entering the publishing world as a “newbie” was very challenging. I knew the literary world would not be easy to enter, everyone is skeptical of new unestablished authors, especially ones like myself who had little publishing experience before attempting a full-length memoir. I was determined though, which helped me through the jungle.

Do you have any advice for other writers?

If writing is your life dream, start now! Don’t listen to anyone who tell you can’t do it – they are likely speaking of their own fears and failures, masked as advice to you. Stick with it. If you are determined, you will see your dream through and it will be worth it.

Now doesn’t that just make you want to write?

Thank you so much Julie for everything you do!

Walk The Walk

Usually I try to participate in things going on around me. With in reason of course. I am limited to what I can do. I am either sleeping too much from Narcolepsy, or other related side effects,  in too much pain from Fibromyalgia, or to annoyingly paranoid from Anxiety attacks. All these thing wear me the frak out.  (I also suspect I have other issues going on too, But I am in no mood to address them yet, so I am stalling for a bit.) So yeah… boo hoo about all that, whatever…

My point was that I will try to do things when I can I volunteer, I write these obnoxious blogs, try to be helpful to people. etc etc… but I can’t be all roses all the time. I’m sick too. There are days when I get up and I am mad and think how it’s not fair too. And then there are days where I just don’t fraking get up at all.

That being said, I need to start paying more attention to when am I really out of sorts  and when am I just assuming I will be so I avoid things just incase. How much in my life have I missed out on simply because I assumed I *couldn’t* do something, so I never even tried? How many wonderful experiences and how many new friends did I not meet? The very thing I have literally on this very blog warned others not to do I have caught myself doing. Becoming apathetic about my life and my future.

Over the summer I participated in a 60 for 60 Challenge through No Fizz USA. It was easy enough once you got the hang of it and I don’t drink soda anyhow, so… no biggy right? I did all right. Now they Are doing a Walk The Walk Challenge. ( www.nofizzusa.org/wtw/ )And I immediately said no. I can’t compete with that. How can I clock how far I have walked every day for all of September when most of the time, I never get out of bed let alone leave my house. (Seriously, the Fibro has gotten bad since I moved south. I think Humidity is a huge factor here. Might as well be the dead of winter in Ohio.) So I said no to this challenge *assuming* It was something I cannot do.

The only person who sets those limitations is me. And that is pretty shameful. I freaking know better than that. So I am changing my mind. I am going to sign up probably tomorrow because I am tired and need to go to bed. I know there will be people walking circles around me. I know I likely wont hit 10 miles all month. But It’s not about the challenge against other people, it’s about the challenge to myself.  If I get out of bed just one time for the sake of just getting up and moving that day because of Walk the Walk, I am already going to be winning.

A very good friend of mine reminded me it’s about the attitude. Not the illness. Sounds so weird hearing my own words come from someone elses mouth.  Perhaps we all need to be reminded from time to time. Even the glitter queens like me.

 

GO FISH!!!

My Friend Irene, payed me the greatest compliment the other day. I originally posted this as a comment on the particular post she was talking about but decided to make my response to her an actual post itself.  There are people in my life, narcolepsy related and otherwise who I wish would stop with the pity party and get up and do something about their situations. Even if you fail, you are still trying. And trying is moving forward not treading water before you drown.  It doesn’t have to be big, doesn’t have to be a huge drastic change… start small and work your way forward. Start very very tiny, and work your way forward! But stop doing nothing.  Do anything to shake the negativity that is consuming you.

I HAVE BEEN THERE. And I was there for a very very long time. I am not talking out my rear here, I am telling you the truth. Your attitude about life, and your position in this “Mortal Coil” is what will make or break you in the end.

My response to Irene (who rocks in her own right by the way,) was this:

“Some days are just not easy for us. But to assume all days will be like that, is not giving ourselves a chance… You have to choose to recognize each moment for what it is. It’s the difference… in saying “Today sucks” and “Life sucks”. If a person decides life sucks, they have already sealed their own fate. Each day then doesn’t stand a chance.

My biggest pet peeve is some one who says they are simply playing the cards they have been dealt. Freaking Idiot. GO FISH!”

We tend to way to often focus on the negative around us. When all you see is black, the first thing you should try, is opening your eyes. LOOK for the happiness. Even if it is something small, like a cute little kitten, ar a brightly colored butterfly, There is nothing negative in those moments. Soon you will be open to more happy things by conditioning yourself to noticing them. I actually have a friend that I used to call and irritate so badly by asking what his “happy” of the day was. I finally got him a journal for his birthday and told him to write in it a new “happy” in every day. That will be a year ago next week and I suspect, If I were to sneak peek into that journal, It would be empty.
That makes me tremendously sad.

You have to want it bad enough to go and find it yourself because happiness is not going to fall in your lap. I know that various situations in life are hard. But that is NOT your life. It is a moment in time. A moment that will pass… if you let it.

I see so much potential in all of you. In everyone I meet practically. I see it where you cant see it even in yourselves. I only just wish that everyone even just once at least entertained the thought, that there could be something more, instead of hiding and crawling down deeper into the holes that you were placed in. ( Yes, the holes you were placed in, because I am well aware a lot of your issues were not brought upon yourself.)

Life is too short to waste time being miserable. Screw it and smile.

Edit:

While I was working on this piece I ran across two things tha makes me extremely happy. One was a new blog a friend started writing “In The Blink of an Eye” and one was a thread in a group about getting out there and moving forward, literally. That is exactly the kind of good we need to see happening. Peit and Julie, I hope that the two of you can use your stories to encourage others!

Dormez-vous? Dormez-vous?

In Recent years Narcolepsy has been getting diagnosed earlier and earlier now that more people are aware of what to watch for. Many of us who are older did not have that advantage when we were young, and for those of us born with Narcolepsy, or got it very early, it had always been normal to us so we would not have known any different.

I was the oldest child in my family, I have been symptomatic pretty much from the very get go. But my mom being a new mom didn’t realize this.  Babies were supposed to sleep like that. (It’s just that I never really stopped!) That made me a pretty easy baby to work with I imagine.

Easy did not last long however, because by age three, I was going into sleep paralysis and hallucinating. And just as soon as I could shake it off and move, I was screaming for my parents. (They could not understand that it really wasn’t ” just a bad dream ”  The things I would see were very real and in my room!)

By time I was 11, I was having severe issues with automatic behavior and having “light” cataplexy, (which became full-blown, drop to the floor style, by time I was 13.) The school I was in at the time wanted to put me in “special” classes. Though no one could seem to figure out what kind of “special” I was.

A new school and years later at 16, when this school insisted I was on drugs, my parents did what any normal parents would do. Drug tested me and put me in counseling.  When I ended up with a “clean bill of health” I switched schools again. But by then, I already knew, I was off in some way, and had already learned to hide it pretty well, except from my friends, who just thought I was being funny.

So there is the “peripheral” version of my childhood. Which sucked by the way. It was predestined to suck, and there is no fault to be laid anywhere really. When you have a disorder like Narcolepsy go undiagnosed, sucky is just the way its going to be.

Now for the “internal” version. I was the weird kid. Not the “Beat the crap out of you stuff you in your locker” weird kid, the “avoid at all cost” weird kid. It was rather irritating when I was in elementary school, though I really didn’t care much because I really didn’t have much interest in many things.

I was pulled from class on several occasions to talk with the school counselors, to ask about home life, they were searching  for reasons…  I would have to take test that other kids didn’t have to take, Once someone special came from another town to do a stupid test with blocks and such. ( It was an IQ test of some sort, BTW I am brilliant apparently. Even back then I was.) All these things they were doing did not help me out socially either.  And really, I didn’t care. I just wanted to go back to class, put my head down and go to sleep. Usually about a third into the year, the teachers would quit trying, and leave me in peace. And that is how much of my academics continued.

What started getting hinky, was the counselors. I was depressed. I was suicidal. I was manic-depressive. All this according to them. They decided these things, based on the fact that I sleep so much. Based on the fact that I had a tremendous amount of death in the family. Based on the fact that I would show up in their offices, sit on the couch and go to sleep. Because we certainly did not talk about anything. I already knew I was in trouble for something, I just wasn’t sure what so I wasn’t talking! My parents paid god knows what an hour for me to take a nap in at a shrinks.

There is a little thing called power of suggestion. It’s actually a pretty big thing. If you get told you are depressed often enough and by all the right people who “know” things about psychological disorders, you actually begin to believe them.  And then suddenly, just like that, you are. So you take on that persona. And that is when I quit being weird and started being cool… That kind of worked for me. (Between “Ghost”,”The Crow”, and damn near every Christian Slater movie in between, death was pretty romanticized in the 90’s!)

I was not Diagnosed until I was 23. I can’t say my childhood was robbed because of these misdiagnosis. You can’t be robbed of what you didn’t know you were missing. But my life would be much different now if I had known, had gotten treatment, had a chance to do it all over.  I would get to do the things I would like to do. or at least have gotten to try them and decide to hate them later. LOL. But instead I do what I can, when I am able, when I am awake.

One of the thing I CAN do is write so that parents, teachers, nurses, paramedics, and yes, even doctors, are aware of this disorder. So that some little kid, who is just trying to sleep, wont go through the hell I did. The hell too many of us remember.

Narcolepsy: Coping With Who You Are

I have been thinking alot about my life here lately. All the obstacles I have overcome, and the things I have been through to get where I am now. The most significant thing to ever happen to me was to be diagnosed as a Narcoleptic.

My life was hard. There was always something wrong with me. We just didn’t know what. Eventually, I was just chalked up as crazy, and if you get enough people telling you your nuts, you start to believe it. But as it turns out, I was never crazy. I was just unique. That is the short version of a long drawn out process anyhow.

Initially getting the diagnosis of Narcolepsy was really hard on me. It came at a really treacherous time in my life. It took me a long time to accept all of this. The term ” I reject your reality and substitute my own” comes to mind. I was seriously in denial. Once I accepted this version of myself though, I came to realize that there was nothing wrong with me. So I have Narcolepsy. So what? I’m not DAMAGED. I’m not BROKEN. I consider it an alternative to normal mundane life. I am so significantly more interesting than alot of people I know. (Seriously. Some people are soooo boring…)  I have an entire view of the world that others wouldn’t normally consider. I imagine alot of people with alot of different disabilities can say this about themselves in one way or another also.

Recently someone on the Narcolepsy Network forums brought up the subject of learning to cope. I thought about this, and thought about my life and the drastic changes I have made in the last ten years since I was diagnosed. I put alot of thought into my reply, and I am going to share that with you now.

“I think the most important part of learning to cope is understanding that it is not going to happen over night. For me it took YEARS. Sadly there are no magic words for any of us and its a different process for us all. When we are growing up we all have expectations of what our life is going to be, and when we are faced with a diagnosis like this, In a sense we Mourn our own dreams. Our lives will never be what we thought they were going to be. It’s totally normal to do this.
So when you are first diagnosed you go through this process of at first being happy because you finally know what is wrong, but the heaviness and reality of it set in. This is where the Kübler-Ross Model of stages of grief can for all intents and purposes used as an example of what we go through… And just like the grief of death, it can take different lengths of time for anyone. It’s not just getting a diagnosis that is the hard part… Its accepting the reality of your limitations and the responsibility of taking care of yourself.

Here is my personal process in a nutshell:

  • Denial: I have gotten through life so far without drugs and help. I don’t need them now. This diagnosis isn’t that important and I can continue business as usual….
  • Anger: Narcolepsy affects such a small number of the population! Why did I get tapped? And in my particular case… If its genetic then why in my HUGE family am I the only one? (though years later, there are now five and counting I started a trend I guess!)
  • Bargaining: Ok I get it I have to take meds and go to bed, but not tonight, cuz its girls night out, or there is a show on tv, or my family is in town, I can always catch up later. (umm…. right)
  • Depression: Well we al know what this is. Some of us can’t drive. can’t do certain jobs, etc… We are afraid of being judged by our friends, made fun of, ostracized, we might even develop different personality traits to protect ourselves. ( ex: “learning how to not laugh” is very common. Most of us are very sarcastic in nature because of this or we might purposely recall and relive bad parts of our lives in our minds to counter act the funny. This is the part where you would isolate yourself also, And where this forum comes in very handy.) My Depression was bad and there were other non narcolepsy related key factors* included that made it much worse. I literally lost my dang mind. There are about 4 years of my life where I only remember bits and pieces…..
  • Acceptance: I don’t know how this happened. Or when. Those 4 years went by, and I suddenly just realized one day: Hey, I am ok and I have been for a while. Cool.

So where do we go from here?

For some of us, our dreams are gone. And its sad. I will never be a tattoo artist. It would only take one person to say something stupid and I would end up with a big permanent line drawn across some one as I fall to the ground. This is one of many possibilities that I had to let go of. I now put that creativity into other avenues of my life.

For some of us, Our dreams just need a bit of tweaking. Maybe take school in smaller steps, get creative with how you do things, and learn how to work on a schedule that is ok for you. Getting others to learn how to accept you also.

You get to a point where you shed your old Pre Narcolepsy skin, and you learn how to live again… All over again.
Re-examining, Re-inventing, Re-purposing, Re-forming Reality.
And this time, because you know…. its much easier.

I don’t have all the answers. No one really does. But this is how I view my Diagnosis. My life. Despite the years it took me to over come all this, my life is so much better now.

In time, I hope to see you all get to this place too. But don’t force it. Let it grow with you. And you can grow with it.”

When I wrote this, I have no idea where all that came from. I just seemed to look back and remember how things were… and how they are so much better now. I have never been happier in my whole life.

I have Narcolepsy, it doesn’t have me. If I were to try to hide my Narcolepsy from others, I would really be hiding from myself. It’s part of who I am.

And I am AWESOME.