Health
Growing up with narcolepsy.
I have narcolepsy and cataplexy. I was diagnosed very young, in 4th or 5th grade, so I grew up with this challenge. It's a condition I'll likely have for the rest of my life, and it's part of my story, so it's part of this site.
In plain words
Narcolepsy
A long-term neurological condition where the brain has trouble regulating sleep and wakefulness. The big one is overwhelming daytime sleepiness.
Cataplexy
Sudden, brief loss of muscle strength, often set off by strong emotions like laughing, while you stay fully aware.
General descriptions, not medical advice. Everyone's experience is different.
School
School was tough.
I had to take naps after lunch just to get through the day. Then for 7th and 8th grade, I was homebound.
Homebound
- You stay enrolled in your public school.
- The school district sends a teacher to you at home, usually because a medical condition keeps you from attending in person.
- You're still working toward your school's credits and grades.
Homeschooled
- Your parents take you out of the school system.
- They choose and run your education themselves.
- It's a family choice, not a school service.
My homebound teacher
She helped me find what I liked.
I really enjoyed my homebound teacher. She made me figure out which subjects I liked and which ones I didn't. It turns out I love writing (reading, not so much), science and history.
And here's the fun part: these days I sometimes referee games with her husband.
What we found
Writing, yes. Reading, not so much.
A gentle illustration
Try to keep reading.
Press start, then keep reading this paragraph. Little by little the words will get harder to hold onto, the way an afternoon can feel when sleepiness rolls in and doesn't care what you're in the middle of. There's no pushing through it forever. The fix is usually simple, even when it isn't convenient: stop, rest, and come back.
An illustration, not a medical simulation.
Driving
I have to be very careful.
Driving is where I have to be the most careful. On longer drives I sometimes have to pull over and take a nap. My longest drive so far is Kansas City to Omaha.
That's the reason I want a Tesla with Full Self-Driving.
Still here, still busy
Part of my story.
Narcolepsy has been with me since grade school, and it will likely stay. I still referee high school soccer, shoot matches, and build companies.
Read the rest of my story →