Trysten Pearson held the basketball and spun in circles.
He’d been playing a one-on-one game against Nathaniel TwoHatchett, who knew something was wrong. TwoHatchett grabbed Pearson, laid him on the court and swiped a black magnet across his friend’s chest. The seizure ended.
Months earlier, surgeons put a vagus nerve stimulation device, or VNS, in Pearson’s body to help remedy the 15-year-old boy’s epilepsy. The magnet triggers a burst of stimulation to stop seizures.
TwoHatchett knew how to help his friend as he convulsed on the basketball court; this wasn’t his first time.
Sitting in the library at Odyssey Academy in Galveston last week, the boys recalled Pearson’s seizures.
They talked about fear. Pearson is at high risk of Sudep — sudden unexpected death in epilepsy — responsible for the deaths of 1 in a 1,000 people with epilepsy each year.
The boys laughed freely, too, seemingly a way to cope. They recounted with humor their memories of the first time TwoHatchett saw Pearson convulse from a seizure several years ago, when the boys were biking around a lake.
“He tried to show off,” TwoHatchett said, describing the way Pearson pedaled away quickly before toppling onto grass. Pearson’s mouth was bleeding, and TwoHatchett yelled for help.
“He was probably screaming like a girl,” Pearson quipped.
Pearson’s story is as much about determination to live life as a normal teenager as it is erasing stigmas about a medical disorder afflicting millions in the United States.
The first seizure
Pearson was a healthy child the first 12 years of life. He had his first seizure while playing Wii and stumbled into his family’s entertainment center. His mother, Shena Pearson, thought he tripped.
“I had never seen a seizure before,” she said. “I didn’t know what was happening.”
Pearson remembers lifting her son’s head and trying to pry open his clinched jaw. She wanted to perform CPR and resuscitate her child because his face turned blue. She tried to hold his body still as he violently shook.
“Physically, I was drained at the end of that first seizure,” she said.
About the time Pearson suffered his first seizure, his father moved away and he started attending a new school.
He started attending Odyssey Academy. During recess one day, Pearson tossed a football with TwoHatchett, but he wouldn’t tell him about epilepsy until later.
When TwoHatchett spent the night at Pearson’s home, his mother made him watch a video about epilepsy. She didn’t want him to be scared if Pearson had a seizure.
The Pearson’s epilepsy training has served TwoHatchett well. His mother, Diana Delgado, remembers when a family member had a seizure in her home. Delgado woke up her son, and TwoHatchett helped his cousin.
“Without them teaching him, we wouldn’t have known what to do,” Delgado said.
Stigmas and misconceptions about epilepsy have existed since ancient times, when people believed demonic spirits caused seizures, said Todd Masel, epilepsy program director at the University of Texas Medical Branch. The bias continues today, he said.
“It’s important to have awareness so people with epilepsy can have access to health care and access to a normal life,” Masel said.
Laws require fair employment practices, but business owners still are hesitant to hire employees with epilepsy, Masel said.
Epilepsy is the third most common neurological disorder behind stroke and Alzheimer’s disease. One in 10 Americans will experience a seizure, and about 3 percent, or one in 26, will develop epilepsy.
Most won’t know how they developed epilepsy. In almost 70 percent of cases, the cause is unknown, according to the Epilepsy Foundation of Texas. Epilepsy can be treated with medication, surgery, electrical stimulation therapy or a specialized diet.
“It’s all a case-by-case basis,” Masel said.
Three years, numerous seizures and a bevy of medical tests later, Shena Pearson is still searching for answers. Her son developed epilepsy at puberty, and doctors and researchers aren’t clear why, Pearson said.
Pearson didn’t realize her son’s high risk for Sudep until she attended an epilepsy conference. Family members suggested Pearson and his mother remain quiet about his condition. They did at first.
“I was really shy,” Pearson said. “We shouldn’t have to do that because you shouldn’t be afraid of talking about your epilepsy and who you are and not hide stuff — embrace it.”
Pearson has advocated nationally and locally. He visited members of Congress in Washington D.C. in April after the Epilepsy Foundation of America selected him to serve as the Texas representative for Teens Speak Up!, a coalition for epilepsy awareness.
He also co-founded the Galveston County Epilepsy Awareness Support Group, which meets once a month.
Pearson’s day-to-day life remains filled with typical teenage activities and concerns: sports, video games and driver’s licenses. Pearson and TwoHatchett want to drive, particularly as getting girlfriends becomes an interest.
Pearson is determined to do the same things as everyone else, his mother said.
“Driving is a hot topic for us right now,” she said.
“I can’t drive — yet,” he said.
In the meantime, they will continue searching for a remedy to stop the seizures, Shena Pearson said.
“Until you try everything, you don’t know what’s going to work,” she said. “Trial and error. Everything is trial and error.”