Julie Flygare - Wide Awake and Dreaming: A Memoir of Narcolepsy

Praise for

Wide Awake and Dreaming

If you want to find out what it is like to have narcolepsy, you must read Wide Awake and Dreaming . Julies memoir is so well written with such interesting and entertaining detail, honesty and openness. Julie describes her story so clearly as her story and yet, many people will recognize their own story in here. A wonderful recommended must read for everyone! Julie is a natural story teller.

-Eveline Honig, M.D., M.P.H.

Executive Director, Narcolepsy Network, Inc.

A tender and compelling tale of a young womans frightening journey, attempting to make sense of medical symptoms associated with a disorder of which few physicians are aware or comprehend. It is a search for both internal understanding and a quest for diagnosis and treatment of this sleep-related disorder that afflicts many unsuspecting women and men. It is a sensitive plea to health care providers to become aware of narcolepsy and cataplexy so early diagnosis and management can be instituted in order to avoid the intense impact of delayed diagnosis.

-Stephen H. Sheldon, D.O., F.A.A.P.

Director, Sleep Medicine Center, Ann and Robert H. Lurie

Childrens Hospital of Chicago

Professor of Pediatrics, Northwestern University Feinberg School

of Medicine

Julie shares her story brilliantly. She relates the details in such a way, that it is an easy read with snippets of humor added. This, I believe, makes her an ideal spokesperson for narcolepsy. Julie is all about helping others to empower themselves; to make their journey into the unknown a little less scary than it was for her. She uses her own lifes experiences to teach us how to find humor, and hope, in our own health circumstances. Whether you have narcolepsy, or another condition, this is a must read book.

-Michelle King Robson

Founder and Chairperson, EmpowHER

Narcolepsy is so often misunderstood and patients frequently feel alone. Julies memoir is a relatable, comforting account that everyone with narcolepsy or who knows someone with narcolepsy should read.

-Mali Einen

PWN and Clinical Coordinator, Stanford University Center for

Narcolepsy

Thoughtfully written, Wide Awake and Dreaming offers a brave and honest account of one womans struggle with narcolepsy. This eloquent memoir will provide solace, hope and strength to others dealing with such a highly misunderstood and stigmatized disorder.

-Shelby Freedman Harris, Psy.D., C.BSM

Director of the Behavioral Sleep Medicine Program, Montefiore

Medical Centers Sleep-Wake Disorders Center

Assistant Professor of Neurology and Psychiatry, Albert Einstein

College of Medicine

Praise for

Julie Flygares Blog

Julie Flygare 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 will take her further than she could ever hope to run. She is easily one of the more inspirational people I have met. M.C.

I so admire how you took this trial and grew from it and allowed good to come of it. I am grateful for your strong, articulate voice and your willingness to share your story. So thank you for opening up and allowing others to learn and grow along with you. -L.W.

Thank you for caring, thank you for dedicating your life, when you could have just went on and been a great lawyer. Thank you for giving narcolepsy a face. Thank you for making a difference for all of us struggling. -S.B.

Ive had narcolepsy for twelve years now and for practically all of it, I would have rather buried it in order to appear more normal, but seeing the way that you deal with it and let others know about it has really inspired me to be more accepting of it. Thanks for showing me a better way of dealing with this thing that is narcolepsy. -C.S.

You are part of the inspiration that has driven me to get better and try new, or old, things that I have wanted to do, or did in the past. -C.G.

I am amazed at your talent to communicate and get narcolepsy out there. You are an inspiration! Keep it up. -K.H.

I find myself returning to your blog for continued inspiration and help with changing my outlook on life. Youve shown me how accepting the diagnosis does not mean that my life must be less full. -A.C.

Your dedication is inspiring. Using this blog to make others aware of narcolepsy and sleep disorders is truly wonderful. Because narcolepsy has no cure, it becomes a management issue. We are cheering for you from Maryland! -S.K .

The worst thing we can do to someone is to take away hope. Thank you, Julie, for giving and keeping alive, the hope that life can and will get better for those afflicted with narcolepsy. -M.L.

WIDE

AWAKE

AND

DREAMING

A MemoiR OF Narcolepsy

Julie Flygare

Wide Awake and Dreaming

A Memoir of Narcolepsy

Authors Note:

The names and other identifying details of some major and minor characters have been changed to protect individual privacy and anonymity.

All rights reserved. No portion of this book may be reproduced or transmitted in any form or by any means including but not limited to electronic, mechanical, photocopied, recorded, scanned or other except for brief quotations in critical reviews or articles, without the prior written permission of the author.

Copyright 2013 by Julie Flygare

Publisher :

Mill Pond Swan Publishing

Arlington, VA

ISBN : 978-0-9883149-0-0

Library of Congress Control Number : 2012922451

Book Cover:

Cover Design: Cecilia Sorochin

Cover Art: Lucy Hillenbrand

Photo: Matthew Spaulding

Interior Design: Cecilia Sorochin

Quantity discounts are available for educational or business uses. For more information, please contact Mill Pond Swan Publishing, PO Box 3543, Arlington, VA 22203 or millpondswan@gmail.com.

www.julieflygare.com

In loving memory,

Thomas John Flygare

And if our hands should meet in another dream,

we shall build another tower in the sky.

-Kahlil Gibran

Contents

One Melting

Two Lights Out

Three Spiraling

Four Discovery

Five Night Life

Six Racing

Seven Behind Door C

Eight Undertow

Nine Prescription for Change

Ten Across My Lips

Eleven Monster

Twelve Promises

Thirteen A Lions Roar

Fourteen This Too Shall Pass

Fifteen Ghosts

Sixteen Just A Dream

Seventeen Run Away

Eighteen On Thin Ice

Nineteen Going the Extra Mile

Twenty Floating

Wake butterfly, its late

and weve miles to go together.

-Basho

One

Melting

I t began with laughter.

Deep mustard-colored beams of late afternoon light spread across the hardwood floors. The scents of fresh mulch and thawing mud sifted in through the open bay windows at the front of the room. An unseasonably warm spring breeze whispered in my ear, You should really be outside.

It was the spring of 2006 and I was looking forward to my run along the Charles River, knowing it was one of those perfect days that would remind me just how much I loved Boston.

After graduating from Brown University in 2005, Id moved into my first grown-up apartment with a good friend, Jill, in the picturesque Fenway neighborhood of Boston. Working as a file clerk at a fancy law firm was, thankfully, a limited time engagement since I was recently admitted to law school. Jill taught kindergarten and her misadventures were a constant source of entertainment in our apartment a breath of fresh air in our budding adult lives.