I’d just told this older gentleman, a retired dentist and family friend, that I was writing a memoir about narcolepsy. When he wanted to ask me something personal, I nodded yes with enthusiasm – I enjoyed answering questions about my narcolepsy.
“Are you religious?” he asked.
“I consider myself spiritual, but not religious necessarily…”
“Do you pray?”
“No…” My brow furrowed, not sure where he was going with this.
“Yeah, see, that’s the problem. 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.”
I was stunned and tried to defend myself, but soon realized this man and I would not see eye-to-eye. It was as if we were speaking two different languages, so I nodded politely and excused myself as soon as possible. My blood boiled for about three days afterward. Three years later, the scar is still there in my gut.
When I tell people I have narcolepsy, I often get questions like this: “Have you tried yoga?” and “What about vitamin D?” and “Do you pray?”
People are well-intentioned and solution-oriented. I get it and can move on, with a grin hiding my clenched teeth. (Okay. It’s a bit frustrating that someone learning of narcolepsy for the first time thinks they know a solution or cure that I don’t know of, even though I’ve lived with narcolepsy for many years. But still, forgivable.)
But what bothers me most about these questions is that by saying I have narcolepsy, many people assume that I have a problem and that 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 part of me, much like my hair color and ethnic background. I am proud to be a person with narcolepsy. Since being diagnosed, I have run the Boston Marathon and published a book. I never imagined accomplishing so much in my lifetime, never-mind in my twenties.
Sure, narcolepsy presents great challenges. I have cataplexy and sleep attacks daily. I cried hysterically in the CVS parking lot the other day after dealing with an annoying pharmacist. The list of obstacles and discomforts goes on and on.
But for me, narcolepsy cannot be classified as “good” or “evil”. Sometimes it is a source of frustration, other times a source of incredible passion and drive. Instead of running from my challenges, I now choose to stand still, watching them shift like the tide.
Before you feel bad for me or offer solutions for my narcolepsy, consider that your fears are not necessarily my fears. Your feelings about illness may not match my feelings about illness. I am not afraid of narcolepsy, I embrace it – the good, the bad and the ugly.
I am open to improvements and have tried many life-style changes and alternative treatments. I believe in a strong mind-body connection, especially when it comes to the immune system. But I also believe the body is complicated and layered beyond modern medicine and alternative therapies. Some things may not be easily “fixable”.
If someone has a tooth cavity, can they pray it away? If someone has a broken bone, would yoga heal the break? The cause(s) of narcolepsy are invisible to the naked human eye, thus it’s harder to grasp intellectually, but narcolepsy is still real.
By insisting on easy solutions, my experience feels invalid — 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 closing, I believe 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.
(PLEASE NOTE: My opinions are entirely my own here and I do not speak on behalf of anyone else with narcolepsy in this post. Thank you!)