When Landon Williamson walks across a room, you wouldn't know he's living with a rare neurological condition. The recent Tecumseh High School graduate looks like any other healthy, active young person. But appearances can be deceiving.
During his freshman year, Williamson began experiencing what he said were "the worst headaches of my life."
The pain was so severe that it forced him to miss school, quit martial arts, and not join the swim team.
After years of tests and treatments, doctors finally suggested Williamson might have SUNCT (short-lasting unilateral neuralgiform headaches with conjunctival injection and tearing). It's a rare headache disorder characterized by bursts of moderate to severe burning, piercing, and throbbing pain.
"MRI after MRI, medication after medication, nothing was helping," he said.
The diagnosis didn't just affect Williamson. His mother, Misty Beatty, said the experience transformed her understanding of disability and chronic illness.
"It made me learn about different people with handicaps, zebras, people that look normal, and they got other stuff going on," Beatty said. "So it made me more compassionate towards others."
The term "zebras" refers to people with rare diseases, based on the medical school saying, "When you hear hoofbeats, think horses, not zebras." But sometimes, it is a zebra.
Beatty brings her own experience with invisible disability to their story. She lives with Chiari Malformation Type 1, a condition where part of her skull didn't form correctly, causing lifelong health issues that eventually required decompression surgery and a craniectomy.
When you think of the term chronic illness, what do you imagine?Landon Williamson
"It was a journey. It really was. It was a long journey and I went through a lot of pain too," she said. "We went through it together, and we learned a lot together."
For Williamson, watching his mother navigate her chronic condition while supporting his became a source of strength and frustration.
"I remember times where I was hurting and in pain, and I didn't want to move. You pushed me. You made me get up," he said to his mother. "And in the moment, I hated you because you made me move, and it hurt worse. But in the long run, moving around and you pushing me past my boundaries, it really helped me grow as a person."
Beatty began talking to other parents at medical clinics, encouraging them to push their children with similar conditions to their limits, advice that Williamson said has helped many families.
"It was like a metamorphosis," Williamson said. "We started as completely different people and came out new, better versions of our old selves."
Beatty said her motivation came partly from watching her son's resilience: "You took that like you do in the gym, and you do it mentally too. So you did not just do it physically, you do it mentally, and you did it with a smile on your face and a good attitude, and that's just amazing."
WYSO Youth Radio is made possible with support from people like you, the Virginia W. Kettering Foundation, and the Ohio Arts Council. It's produced at The Eichelberger Center for Community Voices.
