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.