The Answer To Life, The Universe, And Everything

“How Many Roads Must a Man Walk Down?”

Fascinating question. No, really. The lack of my usual sarcasm even startles me. Odd right? But the simplicity of it makes you think: What if… I never knew?

Never knew what was “wrong” all those years as a child? Never understood why I couldn’t quite keep up with the rest of the world with out several naps? Never discovered that I had Narcolepsy? Where would I be? What would I be doing? Would everything be different? The same? Better? Worse? Who was I? Who Am I? Who will I become?

After five years of pushing the idea of not allowing a diagnosis to become who you are, as a patient advocate, I feel I have inadvertently ignored my own advice. Not maliciously, mind you, but I simply do not have the energy to be everything to everyone and still be true to myself and live my own life. As much as I love being able to help others who are just starting down the nightmare road of sleep disorders, there just isn’t enough time between naps.

It’s never good to live in the past too long. And because of being diagnosed with Narcolepsy, and going through the ups and downs of acceptance,  it didn’t seem so daunting anymore. The questions I have had all my life are answered, and I can finally put my past away and move on with my life. It can be whatever I want it to be… as soon as I stop standing at the corner of Narcolepsy Blvd and Cataplexy Lane, and move forward.

I dont know where “forward” will take me. I kind of like that. I’m just going to put down everything, pick up my towel… and go.

This is my last entry. I will leave the blog up, just because someone someday might want to read it. And excuse the lack of humbleness, but some of these entries are incredibly clever. LOL. Even if I am only amusing myself! I want to thank all my friends, and readers for following and supporting me. And Congratulate miander42 on being the winner of my contest. Great minds and all that right? Please Email me at so I can get your information!

Well that is all I guess. Sweet Dreams My Friends.

So Long, and Thanks for All the Fish.”


National Sleep Awareness Week Contest

So No one responded to my last contest. I knew it was a little hard but I was really hoping to see some interesting stories develop from there. Anyway…. Meanwhile, I have a prize to give away!

Ok so lets make this new contest super easy because I have an important announcement later this week when I reveal the winners.

I am thinking of a number between 1 and 100. In the comments below, (below, as in on this page, not on Facebook,) please tell me what number you think it is AND why I chose that number. Its easier than you may think! The first person to answer correctly wins!

There will only be one prize, a hand made book bag by yours truly, consisting of a dream journal, a copy of “Aberrations” by Penelop Przekop and an autographed copy of “Wide Awake and Dreaming” by Julie Flygare. I will verify the winner in my next blog post! Good luck everyone!



Sweet! We have a winner!

I have closed comments, and will post more on this tomorrow, but for now, I am off to bed. I have a sleep doc appointment in the morning!

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.


“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: and Facebook page:

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:

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!

PWN Real Life Scary Halloween Story: Hallucination vs. Reality, Sometimes Life is Stranger than Fiction

So I woke up from my nap a while ago because there was lot of movement and noise coming from down stairs. I looked at the clock and it was not time for my parents to be home. I considered the likely hood I was just not quite truly awake yet. Mom had mentioned something about early release at school, but I had thought it was happening tomorrow?  So I texted her, thinking, I will hear her phone ring if she is in fact downstairs, only it didn’t. She wrote back saying they were not there till nearly 5. Meanwhile all this noise was going on below me, and I was just “sure” I was really awake by now… Wasn’t I?

I grew up in a very old house. you just dont get out of bed and investigate weirdness like that. Every splinter of this wood floor creaks louder than a jet engine. (Was a severe damper on trying to sneak out as a kid.) Meanwhile… I had to decide if this was a 911 moment or if there was some other rational explanation… I lay there very flat and very still slipping in and out of cataplexy as I tried to logic my way out of every terrifying thing that came to mind. Before I could come up with anything fathomable enough to avoid a visit from the Mansfield Police, the rustling and shuffling and banging about, made its way up the stairs very quickly… and yet oddly… no squeaky floor. That is about the time all logic, that I could come up with flew out the window.
I had no idea what to think. Here in this town, where the negativity is so high, and the sickening animism hovers over the city like a cold blanket of death… Burglars and rapist were no longer on my list of possibilities. I traded them in for demons and ghost. (Seriously, a valid concern. This town will give Savannah Ga a run for its money any day.) Having once been told I was a beacon, a light for those who are trapped in the darkness, This scenario really did not hold much surprise, though I was not particularly eager to deal with it. As hard as I generally try to rationalize everything that crosses my path, There are just some things you have to accept as they are: Just Freaking Crazy.

Happily, before anyone uttered the word “BOO” (also happily before I pee’d myself), The noise came rushing down the hall and flew into the bedroom, landing on the curtain rod. This little Grey Catbird, looked at me, *meowed* and proceeded to fly about the room annoyed that I had not yet opened a window for him. (Because clearly, he let me know he was coming…) All to pleased he was not wearing a sheet and rattling chains, or worse yet, trying to steal my computer, I jumped up off the bed and proceeded to open the window, allowing him to depart back to where ever it is his little grey kitty bird family might be, though the mystery of how he came to visit in the first place… may never be solved.

So glad that is over. I’m ready for another Nap.

The End….

” If a bird flies through your house, it indicates important news.  If it can’t get out, the news will be death.” – American Folklore

Pass The Torch

You can only be a door mat for so long.

When you are disrespected and taken advantage of over and over and over, the only person who can stop that cycle is you. Being distracted by meaningless recognition only makes you feel obligated to try a little longer, and maybe things will change. And they never do. They never will. It’s unfortunate that to often it’s only during your last moments, you begin to notice how pale you have become and realize the people you have cared about for so long, are relentlessly bleeding you dry. And doing so with the most precious plastic smiles….

Even your best friends, will blatantly lie to your face.

There is a sucker born every minute they say, You were only one of them.

If your tired of being burned… its time to pass the torch.

I wont be writing again for a while.

“The Network” First Quarter 2012

Once again fantastic stuff coming out of the Narcolepsy Networks newsletter “The Network”!

Great to see all the wonderful things that happened during National Sleep Awareness Week this year! Now being in the bigger city since my recent move, the idea of a Wake Up Narcolepsy: Sleep Walk Savannah is very appealing! I will have to talk with my buddies Julie Flygare, Sarah DiDavide, and Ming Lai to see how to organize something like that… hmmm…. sleepwalk in the south, betcha we won’t have to wear coats over our cool T-Shirts! Heeheehee! (Awe! I’m just teasin guys!)

The amount of stuff NN has going this year is really amazing. Eveline Honig the Executive Director is in serious kick butt mode lately. It is amazing the work she does. I can’t even fathom that sort of constent energy. You would really have to seriously love your job and have that passion and drive to achieve what she has… and happily she does! LOL! Or we would all be lost without her!

Big thanks to James Bennett who allowed me to be part of his great article on The Power and Potential of Social Media. (Seriously, he did an amazing job of filtering through my babble! I was actually pretty tired during that convo, and tend to ramble on!)
It was pretty cool to read about the project that Board Member Ayelet Gneezy has been doing with her marketing students… clearly working with a class room full of brilliance!
And my fave part was seeing Charlie Bains Facebook group ZWN get a mention! I had brought it up as an example and now wish I had gone into greater detail. It was really amazing its original purpose and how it got its start, and though now mostly just for fun and common interest amoung pwn’s, if you think about it, the Center for Disease Control released its own Zombie Preparedness Guide in 2011 as a joke, later bringing up that zombie preparedness is really a good thing because it covers all sorts of other preparedness issues also, being national disasters, or other means of danger. Things as pwn we would have to think about diffrently also. For example: if fear is a cataplexy trigger, running from zombies is really gonna suck… but in the really real world running from a fire or tornado is going to suck equally as much. And if you been watching the news lately, or The Colbert Report, it is worth thinking… Charlie Bain could be on to Something….

Freaking Zombies!
Always getting me off track.

What was I talking about…?
Oh yeah, James! Thanks for the article!

Since moving I have been slacking in the social media dept myself, still getting settled. Eh. No worries you will all be seeing more of me soon!

So again, great stuff this issue, and NO SPOILERS! “The Network” is Members only! Hehehe, You didn’t think I was going to tell you all the good juicy bits did you?
If you want to see what I’m babbling on about, go to and join! Great way to keep up with all of us Sleepy Peeps and see what excitement is happening in our world… and yeah, its pretty exciting!


Finally got moved!  Goodness I have been busy, like seriously insanely busy. And I completely welcome that!
The cats are all settled in and doing well, my plants not so much though. Going to have to give them away to someone with some sunlight I guess. I just have way to much tree cover where I am at.  I am a little disappointed by that.

Everytime I uproot and move like that, my whole grasp on everything can get seriously joggled. Falling from routine can be so easy, but so hard to re-establish again. Its been pretty frustrating. I get annoyed sometimes how far I push myself, especially since I know the consequences. I’m looking forward to getting everything back to normal again.  The things I can do in this city are infinate and I am hoping to get on that track soon.

Well soon as I can find my way around a bit better. Lol.