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!

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Metamorphosis

Things are changing around here.
Everything from attitude to location.

A Flux

A Shift

A Tide

It’s all about letting go and acceptance.

Nothing stays the same forever…

I decided my blog, after so many years should reflect that.
After all its a narcolepsy blog right?
Maybe it should look a bit more… sleepy?
Just follow it like a river in the direction that its taken me?

Up To My Ears in… Poo.

Its 3 am. Or maybe 4. I have some pretty important stuff happening tomorrow and I can’t seem to get it out of my head. I have had such positive feedback about my current ideas and intentions, regarding my new project/or possible .org. So many people rooting for me and I am so wound up with excitement that I am up way past bedtime. I really needed to release this energy, so I hit the garden for a while.

There is something to be said for gardening at night. Especially here in southern Georgia. It is cooler, fewer distractions, no neighbors up making racket…traffic etc…(did I mention its cooler?)  it’s really a good time to be alone in your thoughts while being up to your ears in fertilizer and dirt. As I spent time re-potting basil and tomatoes, I thought about the seeds I will be sowing tomorrow, the Ideas I will plant in the minds of some of my peers. People who have graciously given up their time to listen me as I attempt to plan the next few chapters of my journey. I am forever grateful for this opportunity, and their generosity.

Just like all of the plants I have handled tonight, given enough water and sunlight this project should thrive. But should it remain in a dark corner any longer, it would  wither away and die.
Its time to bring Dormez-Vous Studios out of the dark and into the light.

But first, I need a shower.

Broken Dreamers

Broken Dreamers

I break things.

Pencils Break
Dishes Break
Glasses Break
And Body Parts
Especially Body Parts

Having Cataplexy means
Destruction is kind of what I am good at.

The list goes on and on….

Promises Break
Commitments Break
Dreams Break
And Hearts
Especially Hearts

Having Narcolepsy Means
Hearts will break when Dreams can’t act.

It doesn’t end here….
….What I mean is, It is not the end.

Fevers Break
Water Breaks
Dawn Breaks
Coffee Breaks
Especially Coffee Breaks

Having Hope means
Not forgetting all of that.

There is still hope for us.
We are more than Broken Dreamers.

 

Busy Busy Blogger Bee (Version 12.03.13)

This quarters Busy Bee has been myself! I have rarely had a chance to write, let along read much online here lately. With several events happening, National Sleep Awareness Week was last week,
and several projects in the works, I just have not had the time sadly. Something I hope to fix over the summer.

There have been a couple of blogs I really want to mention though, one of them I just discovered recently.( He managed to find me first, commenting on my last post: “OMG She’s Coding”) I hope to have more time to read more of his work. Nathan Fox, an EMT with Asbergers, who has just recently published his first book, “The Eyes Of An Autistic Yogi”.

(Click picture for Amazon link)

The blog post in particular that caught my eye, “Autistic Internet” (January, 20, 2012) I found to be very insightful and strangely familiar. I really think a lot of people with narcolepsy have so much in common with Asbergers and autism, thought processes, stimming, etc… that is something I would like to explore a little more some time. It’s incredibly interesting, and make so much sense, at least in my head…
In the article he says:
“The Internet is autistic. It is a disjointed and information populated place we go in search of some answer, finding but broken bits filling a myriad other questions. There are the gems out there, intact and pure for where we can draw inspiration. Yet it remains a universe we desire to moderate, control, while still trying to understand its nature.”  ~ Nathan Fox @TheAutisticYogi on Twitter

Just sit and contemplate that for a moment.
So often I am witness too, and have even complained myself, how people with out narcolepsy, our friends and family etc,  just cannot understand us because they don’t have it themselves. As a result of these “close to home” experiences we deal with, we sometimes seclude ourselves and assume it will be like that with everyone we meet. Yet here is someone, who I have no idea who he is, who does not have narcolepsy, yet … he gets it. Even if he does not know he does.

He may not be as tired, or have the worries of collapsing, but “Yet it remains a universe we desire to moderate, control, while still trying to understand its nature.” is a statement that speaks not just for the internet, and autism, but for narcolepsy as well.

Only having time to read just a bit this last quarter, I am super glad that Nathan’s blog is the one I came across. It has given  me a whole new angle of which to think about things when I am working on trying to communicate with others. Its something many of us struggle with, and there are a lot of lessons I think we can learn from our autistic friends.

Definitely take the time to read his blog and his book is available on Amazon.com click the picture above to go straight to the page. I am really looking forward to reading it myself!

OMG She’s Coding!

For National Sleep Awareness Week, I Give You My 100th Post!

So there you are lying on the ground, unable to speak or move but can hear everything around you. If you have a very severe case, (as I do) Your breathing may have become shallow, and your heart may have slowed a bit, but you are not in danger. Being left alone you will get up in a few seconds to a few minutes. But once you hear some well-meaning, unsuspecting stranger try to intervene, your fears kick in, triggering even more cataplexy, and it can take longer and longer for you to get up. It’s like you have one attack after another, after another, after another…

Code Blue? Not always true!

“Coding” is not a word you want to hear during a Cataplexy Attack.
It pretty much ensures someone is going to call 911, and maybe even attempt to “revive” you, possibly break your ribs, bruise your organs or even cause an arrhythmia which could in fact kill you. All this while you are completely conscious, and completely vulnerable. Due to the American Heart Associations Hands Only CPR campaign, the general untrained public has practically been given a legal license to try to be superheroes. I know AHA means well but that literally terrifies me to no end.

AHA’s  website literally states: “It’s not normal to see an adult suddenly collapse, but if you do, call 911 and push hard and fast in the center of the chest. Don’t be afraid. Your actions can only help.”  This is NOT TRUE. Performing chest compressions in that manner on a heart healthy person is in fact dangerous. In their FAQ , AHA addresses the question of seriously injuring some one who is not in cardiac arrest by reiterating their point of view and suggesting that: Hands-Only CPR could still help by causing the person to respond (begin to move, breathe normally or speak). If that occurs, Hands-OnlyTM CPR can be stopped. Otherwise, chest compressions should continue until EMS providers arrive. For someone dealing with severe cataplexy that is not necessarily true. Especially if fear is a trigger for that person. No one want to be stuck motionless and unable to respond while their ribs are being broken. Which, according to AHA FAQ, happens at least 1/3 of the time.

Now, to be VERY clear, I am not saying attempting to save someones life is not important. But I truly believe if you see this happen to someone, If you see someone fall like this, you should always always always check for medical alerts first. More and more people with narcolepsy are carrying information on them in some manner to alert others to their condition. Please take half a second to look for wrist bands, necklaces, and ICE contacts in cellphones. Even if you do this, and THEN start chest compressions, you are still acting faster than the ambulance can get there.

Coding and More Coding:
Using QR codes to avoid mistaken blue codes is my new favorite thing.  Using QR codes for medical alert information is gaining in popularity as the technology for scanning them has become available to the general public via smart phones… If a person stopping to help you in an emergency has a smart phone they can access the information that you provide on your personal QR Code with a simple scan. These things have more room for more information making a description of Narcolepsy, Cataplexy and how to deal with it more complete. Even if you haven’t simply fallen down, and truly do need medical attention, they will need to know other basic information about you and that people many with Narcolepsy have issues with anesthesia. Something like that could truly save your life. You can also link to websites for more information. And since the person who is helping likely knows how to work their phone really well,  it will be quicker and easier for them than looking at a tag that says “narcolepsy” and then trying to Google it if they don’t know what it is. (Or worse saw it in a movie!) There are organizations and companies that provide services to develop these QR codes for you for a fee, but it is also really easy to do yourself if you are just planning to stick to the basics. Here is a list of free QR Code Generators that might work to suit your needs if you plan to go this route!


I am not trying to be an alarmist…

The post is based on my experiences,and triggers of my *version* of  Narcolepsy & Cataplexy, which happens to be very severe. (I am well aware that it is not this bad for many people, no need to bring that to my attention.) My fears of falling in public have driven me to solitude, and severe social anxiety. It’s difficult to explain to others that I am afraid of  being in public and people, because I fear they might injure me in some way, and have them  understand that with my condition and the lack of general public knowledge of this disorder, that is a very real possibility for me. (I have actually developed many fears as a result of my diagnosis. I will have to get into that some day…) My anxiety, though admittedly, perhaps extreme, are based on facts, logic and personal history. And they are very real.  (Side note: I have suffered physical abuse by EMT’s who were attempting to make me stop “faking it”, I have been taken advantage of simply because I could not move, seemingly unconscious and unable to defend myself, and I know many other people this has happened to as well. It’s the scary stuff, the taboo subjects of narcolepsy, that no one wants to address. But it is there. And it is real.)  Look around yourself in your world. How much do the people in your area know about narcolepsy and cataplexy? How safe are you from your would be saviors?

I implore you to do something about this. Wear your tags. Carry your wallet card. National Sleep Awareness Week is this week, March 4-11 2012. If you did not have time to organize an event to spread awareness on a large-scale, at least take steps to protect yourself from well-meaning bystanders. Personally drop off pamphlets from your doctor or organizations such Narcolepsy Network, Wake Up Narcolepsy or The National Sleep Foundation, to EMS, police and fire responders, close to your home and work locations. Take a few minutes to explain them the importance of them understanding and encourage them to ask questions. Nothing is scarier than hearing an EMT say: “Cataplexy? Whats that?” and then listen as they accuse you of faking a seizure, or juice up their defibrillator.

Kryptonite for Narcolepsy: How it Works

I recently received a message from a good friend of mine with Narcolepsy who has been going through a particularly hard time. She asked me to remind her that she is a strong and good person. And of course I will do that, but it really got me thinking about just how *strong* Narcoleptics are. How much of our strength is a direct result of the constant uphill battle with our disorder. Our very strength is derived from our debilitating weakness. Our only other option is to become severely restricted emotionally, and I have seen that. For a while, I have even done that. And that is no way to live. Even Superman, after repeated exposure developed a tolerance to Kryptonite.

Emotions Are Our Kryptonite

So many of our symptoms are triggered by the onset of emotion, not just cataplexy. I cant have a decent argument, even if I am winning, without needing to go lay down immediately afterward. (IF I even make it to a bed that is.) It is completely exhausting to even *FEEL* anymore.  Oh and of course if I get pushed to the point of cataplexy, which more often than not, I do, then its all over… I am defeated, pushed to the ground by the weight of my own desire to be and act human when it is clear Android would have been a more appropriate choice… Emotionless and unphased by the human condition. Able to stand strong in the face of all exhilaration, all anger,  all fear, surprise, laughter… even love. The list goes on… I cannot stand it.

Literally. I CAN NOT STAND. It wont let me.

Seriously, Lex... So not funny.

Kryptonite comes in many colors and can effect you in many ways. Some forms or colors of K and their subsequent effects are very much like symptoms of Narcolepsy making it easy to identify with.

The Green K’s ability to bring Superman down to his knees in an unavoidable and often painful collapse.  Much like exaustion.

Red K pretty much does the same thing but is usually only temporary, similar to cataplexy. Red K also has the effect of paralysis, and hallucination, which definitely will ring a bell!

Black K can split a person into two different personalities, (bipolar much?!)

And Silver K will cause paranoid delusions, hallucinations and hyperactivity. And which one of us hasn’t dealt with that at least once?

Happily not all the Kryptonite out there can be said to coincide with Narcolepsy, (Seriously like we really need to kill off plant life or become radioactive on top of all the other crap too right?) but enough of it does to really make you think. Dealing with so many diffrent kinds of kryptonite or emotions in our case coming at us on a daily basis, Its really amazing any of us are able to function at all. We are our own heroes everyday fighting this battle.

Symptoms of Narcolepsy: Never a boring moment.

All fun fascinating facts about Kryptonite, but lets just stick to the basic original Green K for the sake of argument. (And my dwindling energy to get this posted…) Even Superman eventually because of the constant bombardment of his enemies using Kryptonite against him, had to enlist Batman to help him out. So regardless  of how super you are, how strong, or how good, it is always going to be ok to ask your friends to help you fight your battles. Whether you are saving the world, or saving your sanity, it is much easier to do with people by your side who understand. We are our own heroes. We all know what it feels like to be the only Kryptonian on the planet…

You ARE a STRONG and GOOD person.