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I'm Not Looking to Be Saved

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"Are you religious?"

My brow furrowed with confusion. I'd just told this family friend, a retired dentist, that I had narcolepsy. I wasn't sure why he was asking about religion.

"I consider myself spiritual, but not religious," I stammered.

"Do you pray?"

"No..."

"See, that's the problem," he explained with enthusiasm. "All you need for a good night's sleep is peace of mind. You need to get in touch with the Man Upstairs for peace of mind."

My eyes fell to the ground, as I searched for words to respond, but I quickly realized that we would not agree.

When I tell people I have narcolepsy, I often get questions like: "Have you tried yoga?" "What about vitamin D?" and "Do you pray?"

People are well-intentioned and solution-oriented. I understand. Sure, it's a bit frustrating that someone learning of narcolepsy for the first time thinks they know of a solution or cure that I'm unaware of, even though I've lived with narcolepsy for many years. But still, forgivable.

But what bothers me most about these suggestions is that by sharing that I have narcolepsy, many people assume that I have a problem and I'm looking for a solution.

So let me be clear: I, Julie Flygare, am not looking to be saved from narcolepsy.

Narcolepsy is a neurological disorder of the sleep/wake cycle affecting 1 in 2,000 people worldwide. I experience excessive sleepiness daily. When I laugh, my knees sometimes buckle or my whole body collapses -- a paralyzing symptom called cataplexy. In addition, frightening hallucinations surround my sleep.

Yet, narcolepsy is a part of me, much like my hair color and ethnic heritage. I am proud to be a person with narcolepsy. Since being diagnosed, I've run the Boston Marathon, become a national spokesperson, founded a non-profit and published a memoir. I never imagined accomplishing so much in a lifetime, never mind in my 20s.

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I'm not Wonder Woman, far from it. Narcolepsy challenges me daily. I take medication twice a day and twice a night, both of which cause unpleasant side-effects. And I still have sleep attacks and cataplexy every day. I cried in the pharmacy parking lot recently after dealing with red tape insurance issues and a brash pharmacist. The list of obstacles goes on and on.

But for me, narcolepsy cannot be classified as good or evil. Sometimes it is a source of fierce frustration, other times a source of infinite passion and drive. Instead of running from my discomforts, I now choose to stand still, watching them shift like the tide.

Before you feel bad for me or offer solutions, consider that your fears are not necessarily my fears. Your feelings about my illness may not match mine.

I am open to improvements and have tried many lifestyle changes and alternative treatments. I believe in a strong mind-body connection, especially when it comes to the immune system. But I also believe that the body is complicated and layered beyond modern medicine and alternative therapies.

Simply put, some things are not easily fixable.

If someone has a tooth cavity, can they pray it away? If someone breaks an arm, would yoga heal the break? Interestingly, people with narcolepsy are missing 90-95 percent of the neurons that regulate the boundaries between sleep and wakefulness in the brain. Although this cell loss is invisible to the naked eye, it's still very real.

By insisting on easy solutions, my experience feels invalid -- as if narcolepsy is somehow in my control or my fault. This makes me feel ashamed and guilty. If only I exercised more... If only I wasn't stressed... If only I was healthier...

This shame is worse than any illness. This self-guilt is more toxic than any disease.

In my opinion, there is an over-emphasis on finding quick fixes and avoiding discomfort in our culture, as opposed to leaning in and seeing where our challenges take us. We forget that difficulty is a part of life, and no amount of yoga, dietary changes, prayers or medications will make us immortal.

Learn more: www.julieflygare.com All Photos Copyright (c) Julie Flygare

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