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Brad’s Story

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Like many living with narcolepsy, Brad has experienced his share of highs and lows. Today, he celebrates his narcolepsy as an essential part of who he is and how he sees the world. “Narcolepsy is inherently part of my life, for better or worse—and it’s not all bad,” he emphasizes.

How has narcolepsy impacted your life?
When I was younger, the negative impact was much greater. But as I grow older I’m happy to share that life with narcolepsy has gotten substantially better.

In high school, I was known as the guy who would have “laugh attacks.” These were, of course, emotionally and physically painful episodes of cataplexy where I would often end up in a puddle on the floor. One time, I collapsed into a literal puddle in the middle of the school parking lot. The puddle was deep. Not fun.

College was rough. I would dig my fingernails into my arm to try to stay awake in class. I lived in rural Oregon, where driving was a necessity, but so hard and dangerous, where “microsleeps” would occur even with all the windows down, loud music blasting, and me screaming along to pop punk, smoking cigarettes, snacking, or whatever to stay awake. Pulling over for a nap didn’t seem like an option because I was so often already running late from over sleeping.

After college, I moved to Seattle, where I continued to have horrible sleep habits. I lived by a flawed philosophy that whatever the hour, if I felt awake, I would seize the moment. Oftentimes this would be in the middle of the night. Because I’m an artist of sorts, this seemed like the artists’ way and aligned with my friend’s late-night tendencies.

At one point in my mid-twenties I took a sleep study to be officially diagnosed so that I could try Provigil. But my sleep habits were completely random, so the drug essentially had the same effect as coffee, which was cheaper and more pleasurable. It wasn’t until my early thirties that I learned the importance of sleep hygiene, which was life-changing.

What barriers to medical care have you faced?
My symptoms were textbook, and I self-diagnosed myself as a teenager. My mom was a nurse, and I’m sure I told my general practitioner, but I was never referred to a specialist. I was told the only option would be to take Ritalin, which I didn’t want, so my care stopped before it started. I still don’t know that I’ve taken full advantage of what a specialist may be able to offer.

What do you want people to know about narcolepsy and the challenges you’ve faced? What lessons have you learned?
The biggest hurdle for me was acceptance, along with the ability to tell others about narcolepsy and advocate for myself. I’m finally at a point in my life where I’m not ashamed of my narcolepsy. Sharing my experience allows me to be more present and whole while also educating others about the reality of narcolepsy, which is so different then how it’s portrayed in pop culture.

Narcolepsy isn’t all bad. I enjoy that I can fall right asleep whenever I want. During times of stress, this can be like a reset button.

Sleep hygiene is critical, which allows my medication to be more effective.

What makes you proud as someone affected by narcolepsy or idiopathic hypersomnia?
Narcolepsy is 100% part of who I am and affects the way I think and uniquely see the world. I consider it a form of cognitive diversity and strive to to celebrate this.

I think that my cataplexy has conditioned me not to be over-reactive. There may be some pitfalls to this but generally it has helped me to be a more thoughtful, patient person.

On the flip side, my former philosophy to “seize the moment” still exists, but in a more controlled fashion. When I feel energetic I really lean into being productive, which has been beneficial to my career and creativity.