Finding Beauty In Narcolepsy
Do you know what drives me? What REALLY drives me as an advocate, writer and speaker? Beauty. I am obsessed with finding beautiful ways to convey narcolepsy. Why? Because I find it hard, and I LOVE the intellectual and artistic challenge.
This is not a choice but a compulsion. I agonize over word choices. I scour the internet for images that resonate with me. This is where my mind wanders; this is my crazy obsession.
People sometimes ask me, “How does it feel to be a narcolepsy celebrity?” and I want to throw-up. For a while, I didn’t know why I had this visceral reaction, but now I think I know.
First, this isn’t about me. Nothing about Julie Flygare is worthy of being placed on a pedestal. My story is no more interesting or important, my face no prettier, my legs no stronger. I am just like everyone else. I cry, I sleep at odd times, I stumble, I make mistakes, I struggle to pay my bills.
In fact, two weeks after I published my memoir, on January 1, 2013, I had $1.00 in my bank account. My only bank account. I literally spent my last pennies to publish my book (editor, layout and cover design). That month, my phone was shut off, my car was almost taken by the bank and my credit damaged for years to come.
You can see my smiles and think, “she’s got it good” or “she’s so successful”, and while I am proud of certain things I’ve done, I do not walk on water or drink from an endless abyss of time, money or energy. There are real-life trade-offs and consequences to the choices I’ve made and projects I take on.
I tell my story and share my photos not because I think I’m special, but because these are the tools I was given to paint my story of narcolepsy. (And I believe people remember stories and faces, over facts and stats.) So if my crazy obsession to raise awareness was ever mistaken for attention-seeking or celebrity anything, I’d feel misunderstood. Which would be ironic, given that feeling misunderstood inspired me to start this journey.
Second, to be honest, I don’t FEEL much of anything about what I’ve accomplished. This may sound odd. It sounds odd to me, but it’s something I’m coming to terms with. I wish I could rest my sleepy head on my laurels for one day. But I can’t. It’s just not me.
I’ve been asked, “How did you stay motivated to finish writing your book?” I’m speechless. I can’t imagine NOT writing it. Publishing my memoir brought me as low as having narcolepsy, but it was never a choice. It’s like asking me how I stay motivated to breathe.
That being said, I DO care deeply about my work, but my thoughts and emotions are in present and future projects. So if you want to have the shortest conversation ever, ask me how I feel about “my accomplishments”. If you want to have your ear talked off, ask me about what lies ahead.
This is somewhat uncomfortable for me to share, but I felt like being honest. This how my mind works. This is how I am and who I am. Thank you for letting me share my truth with you.
I love your honesty and your passion. Your dedication to this cause shines through in everything you do! You will always excel at anything you put your (sleepy) mind to! I’m so proud and glad that you are our advocate – speaking for the masses who can’t!
Well said Julie.
Finally, finally, you are real. Many of us no longer have intellectually connections outside of some Internet forum where we do not hear or cannot touch one another. The Internet has its fallacies because often strangers and sometimes friends mistakenly take things out of context from what a particular sender meant in a communication.
No one that I am aware of wishes you any sort of harm, to not be successful, or even a celebrity. We have needed a spokesperson for so long, and many of us have different needs and have come to have Narcolepsy from different perspectives. There is no conspiracy to derail you or to deliberately make your life more difficult when you are doing your best to get the word out about Narcolepsy in the most positive way you can.
The fact that you have been able to communicate Narcolepsy from such a positive manner without sharing your own struggles that many of us have already gone through or are going through, has made you appear at times as if you are Teflon coated, affected somehow differently with your form of Narcolepsy/Cataplexy than the rest of us who when the ugly stories are told have committed suicide, military and homeless who have been locked up and/or put in prison and some parts of our small population who hurt so much, that even your bright and cheerful smile does not penetrate the darkness of their own reality. It is impossible for any one person to be a Spokesperson for everyone’s illness regardless of their motivation, efforts, and support when the struggles of others particularly Active Duty Military and disabled Veterans have a history going back for more than 50-years who have lost everything and you have not. There is no one in society who has brought out profound changes to make the world a better place who has not suffered in some manner or another. The Roosevelt family comes to mind.
Public TV recently finished a series on the Roosevelts starting from Teddy and concluding with Eleanor Roosevelt. The Roosevelt Story held a special interest for my wife and myself. Overland Estates butts up to the Fort Bragg Reservation about 12-miles from where we live. Few people except locals know of its history. My mother-in-law certainly did. She wrote letters every day during World War II to an Army Soldier who she later married. As a Southern Baptist, dancing was “frowned upon,” and my mother-in-law could not have been raised in a more strict and restrictive environment. However, when her Sunday obligatory tasks were done, she would frequently ride with a couple to the Roosevelt, Overland Estates. The couple were cooks and care takers for Overland when the Roosevelt’s were not “in their country” dwelling place. My father-in-law who was a kind man, would sometimes repeat from certain sources references to Eleanor’s looks, not in the sense of bullying but more out of how remarkable this lady was despite her looks and the contributions that she made to this country both when she was the President’s wife and even more so after his death.
It seems that all of the Roosevelts suffered from depression. And, it was how they dealt with their individual depression that made them so great. You have tried so hard to communicate and accentuate the positive aspects of Narcolepsy, up until now, in a way that seems foreign to some of us — that somehow you managed to escape the trials and tribulations that the rest of us have experienced as if you were Superwoman, as long as you got your Xyrem and other drugs, stuck to a rigid schedule of exercise, naps, and rest, unintentionally sending a false message to some of your followers, that if we just really tried harder or that if we just did it Julie’s way, that either we have been doing something wrong with our lives, unintentionally communicating that our experiences are invalidate because we are unable to somehow vicariously catch your spirit.
I don’t think any of us are voyeuristically wanting to know the intimate details of each other’s lives. But we do need to know of those things, especially those IADL’s the most doctors never think about as to lessons learned from each other and how we can support one another until there is a cure.
It is a “guy thing” when a man cannot provide financially and otherwise for his family. And, Narcolepsy will not only bring you to your knees but put you flat on the floor. It has been seven years since our own Title 7 Bankruptcy been removed from the books. It has been said that only a person can allow themselves to feel humiliated. When family turns against you because of lack of knowledge or a poor understanding of what narcolepsy is about, finances are bad because of unemployment, and watching your daughter grow up into a young woman in her 30’s not being able to have the normal experiences with her like riding a rollercoaster, etc. because of cataplexy, that’s humiliating.
There is the beautiful children’s song: “This little light of mine.” Let me assure you, your light has shined on many who have read the book and who understood at once portions of your journal. Your light now shines a little brighter, not because you are a celebrity but because your Light is no longer hidden and now out in the open for all of us the see….Matthew 5:15…
I forgot to mention, perhaps the MOST important aspect of my comments and that being, when some healthcare and lay people see you at your best, which is how we all want to be seen, that some of these professional are making the wrong value judgments about the rest of us who are not so Cheer-io, and that we are not trying hard enough, not right with God, or our hearts have become so cold, that we can no longer see or experience beauty.
beautifully said Julie – well done & thank you xx
Thankyou for your frank truths- too little of it nowadays and reading it restores my faith on another level beyond narcolepsy or any other label that has now formed above my head- that I am not alone in the world as someone who says what they mean, means what they say, and is brave enough to actually say it rather than the socially acceptable polite things people normally dribble so as to not trouble anyone! Thankyou x
Narcolepsy has left me many times feeling isolated from the world and terrified of how to make it through the next day, much less the next month or year. I had had days where getting out of bed was a literal impossibility but choosing to miss a day of work left me laying around in pain from not being able to sleep due to my worry over bills and how my bosses would react, not to mention coworkers who had to pick up my slack. Thanks for giving us a voice!
I think the worst part about narcolepsy is the attitude most people have toward it and the lack of true understanding. Being so isolated. If I could have this condition, and have the people I love understand me and allow my naps and selfish moments, I think it would be so much easier to take. Thanks for laying the first layer of that road!!
Thank you Julie,
Encountering your blog was a first step in connecting with the growing community of narcoleptics. We’re not better or worse than others, just a bit different. The challenges we face give us an interesting view on life. Keep on trucking!
Julie, I’m so glad you’ve shared this part of your story. So many people with narcolepsy must walk “on the edge” for awhile before we find ways to live and ways to support ourselves that actually work for our particular bodies. You have been so courageous and driven on behalf of all of us, and risked a great deal to do the work you’ve done.
I walk what I call “the line between optimism and idiocy” with increasing courage these days, putting myself out there more and taking greater risks, and I often think of you as I do it. You, my friend, are one of my greatest role models, specifically because you are not afraid to acknowledge that you’ve got the same struggles as the rest of us. Courage isn’t the absence of fear; instead, it is the ability to determinedly proceed in the face of risk.
You’ve got the cultivated skill and nerve, as far as I can tell, of a tightrope walker suspended on a line between two skyscrapers. May I follow in your footsteps.
Love to you — Saraiah
Imperfectly perfect is just what you are. I’m always so inspired by all that you do, it keeps me out in the world educating strangers, informing the misinformed and leading a much happier life because I know I’m not alone in this battle. We all have our bad days, dark hours and moments of sheer doubt. What’s great and awful about the Internet is that we don’t have to post them. That being said, thank you for posting your struggles and being real, it’s so heartwarming to read just how authentic and real you are. Can’t wait to meet you! xo
Thank you for sharing this Julie. It means a lot to me.
I truly appreciate your work!
Julie you are an inspiration, not because of some “celebrity status” silliness but because of all the hard work that you put in. I know how tough it can be to fit in other projects alongside everything else we have to do in life (and especially life with narcolepsy!), so much so that my projects are still struggling on months and months later haha…
I think you do a fabulous job at what you do. Positivity is something that the narcoleptic community needs more of IMHO, and it is definitely something that you project; not by pretending that you don’t have the same moments of struggle, but by not dwelling on them and always pushing forwards.
Plus, the reality is that to be a successful advocate, that is what you have to be. You have to be engaging and make people WANT to hear your story. As one person, you will never be able to represent EVERYTHING about EVERYONE who has narcolepsy, as we are a varied community in every respect. Anyone who expects this from you is expecting WAY too much!
And for what it’s worth, I don’t think you have ever pretended to be anything that you aren’t, that’s why I have such great respect for you. You don’t give unwarranted advice or pretend to have all the answers, you say “this is MY story as a person with narcolepsy” and stick to the facts when talking about narcolepsy as a whole.
Sorry if i’m starting to sound like a crazy fangirl, I just feel like anyone who thinks you have been projecting an “I’m so perfect” image hasn’t been reading very carefully.
Julie, Thank you for making narcolepsy easier to understand. I have so much more compassion and patience for my son as he struggles with this disease. I just wish that there was a way to make him realize that this is real….how do you help someone to see through their denial?
It’s enough to know that those with narcolepsy are “not alone.” Thank you.