I’m thrilled that NPR station WHYY featured my story of narcolepsy on the radio today. Listen online here: “A Day In The Life of a Narcoleptic” by Steven Jackson.
When the reporter for NPR asked to follow me around for 24 hours, I said “YES!” right away. I’m always looking to raise awareness about narcolepsy. I am so thankful that both my employer, City of Hope and my boyfriend, Alex were so supportive.
Of course, over 24 hours, we discussed a lot more than what is captured in the final segment. A few unforgettable moments from this 24 hours:
- Pissing off my best friend: We went out dancing in Hollywood with my best friend from law school, also named Julie. Leaving the bar, the reporter interviewed Julie about her perspective having a best friend with narcolepsy. Julie explained, “When people think narcolepsy is a joke, it really PISSES ME OFF!” She got so heated on the topic, I couldn’t help but smile ear-to-ear. Julie has been one of my best friends and biggest supporters through it all – my defender and protector.
- Running into awareness: Going for a run on a mountain with a guy carrying a boom mic is not so subtle.
“Are you filming a movie?” a woman asked.
“No, recording for radio,” the reporter explained.
“What about?” the woman’s son asked.
“Narcolepsy, I have narcolepsy,” I explained.
“Oh. What is narcolepsy exactly?”
The reporter asked them what they thought narcolepsy was, then I explained the real symptoms. Turns out, the young boy has been teased by his classmates because he has a condition that manifests in some repetitive behaviors. I explained that when he gets older, he might meet people who think he’s way cool and more amazing for what he’s gone through. The young boy looked up at me with bright eyes. Eventually, we continued on our separate ways, but I could tell the boy had been listening and just maybe, I’d given him a bit of hope to hold on to.
We also met up with Project Sleep’s Managing Blog Editor, Rebecca for brunch on Saturday. We discussed Project Sleep’s upcoming projects and Rebecca’s experience with narcolepsy.
After the reporter departed late Saturday afternoon, I curled up into bed for the rest of the weekend. How ironic, I realized that the adrenaline of the reporter’s presence had kept me on-point for 24 hours without a nap, and as soon as our “day in the life” was over, I crashed/ran out of spoons. Go figure.