I used to run a 5-minute mile. Developing Guillain-Barre syndrome impaired my mobility and changed my movement drastically.
John Schouest placed first in his regional high-school-track competition last fall.
Soon after, doctors intubated him before diagnosing him with Guillain-Barre syndrome.
He now wants to study neurology to help patients like himself.
This as-told-to essay is based on a conversation with John Schouest. It has been edited for length and clarity.
Last fall, I was looking forward to my senior year running track at my Louisiana high school. I thought I had a chance to do well, and I was thrilled when I came in first place at a regional competition.
As I started training for the state competition, which was two weeks after that, my legs felt very weak. On the day of the race, I realized I couldn't feel my feet. Still, I ran three miles in 17 minutes and 45 seconds. It was a blistering pace, but I had been running more than a minute faster than that all season.
A few days later, just before Thanksgiving, I started to feel very sick. My face drooped, and doctors diagnosed me with Bell's Palsy, a neurological condition. But I just kept getting worse. The day after Thanksgiving, I couldn't get out of bed. My parents rushed me to Children's Hospital New Orleans. I spent the next eight days on a ventilator as my respiratory system shut down.
I was diagnosed with a rare neurological condition
At Children's Hospital New Orleans, doctors diagnosed me with Guillain-Barre syndrome. It's a neurological condition in which the immune system attacks the nerves. Viruses trigger it.
I had been around a lot of sickness — there'd been a flu-and-COVID outbreak at my school. I also had received my flu vaccine, which can increase the risk of developing Guillain-Barre syndrome for about one in a million people. I still don't know exactly what triggered my illness, and I likely never will, but it doesn't really matter.
As a 17-year-old boy, I didn't think anything really bad would happen to me. Despite being critically ill, I always trusted that I would be OK in the end. But getting there took a long time — I was in the hospital from December to February.
I had a lot of setbacks in the hospital
Every time I pushed myself during rehab, my condition would flare up. I had to learn to take it slow — something that didn't come naturally to me as a track athlete.
My older sister was getting married in February, and I worried I wouldn't be at her wedding. Then, doctors diagnosed me with chronic inflammatory demyelinating polyneuropathy, the long-term form of Guillain-Barre syndrome. Hearing I had a chronic condition was a blow.
Yet the new diagnosis meant a new medication, which immediately made a huge difference. Within a week, I went from being bedridden to walking. The hospital discharged me on a Thursday and I went right to my sister's rehearsal dinner. Two days after leaving the hospital, I walked down the aisle at her wedding, with my walker. My parents said it was the most joyous day they'd ever experience.
My recent 5K wasn't what I imagined for senior spring
I was in the hospital for so long that I ended up befriending many staff, including the CEO, Lou Fragoso. Lou heard about my track career. He's also an avid runner, so he would come by and talk track with me.
We decided to do a 5K together to raise awareness for Guillain-Barre syndrome. I had to ride in a wheelchair for most of the race, which we completed in March. But it still felt great to be back on the course in a whole new way. I was able to walk the last few hundred yards and cross the finish line.
Today I still have some numbness in my feet and lingering nerve pain. I've had to learn that this isn't going to be fixed overnight — it might be something I deal with forever. Even before this, I wanted to become a physician's assistant, but now I plan to study neurology to help patients like me.
My senior year has turned out a lot differently than I'd planned. I ended up missing the entire spring track season. But I'm alive. I'm able to share my story and raise awareness about rare neurological conditions. That is the most important race I've run.
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