Chronic pain stripped away his childhood, deprived him of spending time with his friends, and forced him to spend years in the dark trying to cope without a cure.
But at 22-years-old Sean Burns is taking back control of his life with an app inspired by his pain.
Burns says he was a normal kid fueled by a love for Star Trek, comic books, and music.
“I play the violin. I’ve played it since I was six,” he said.
His mother, Nancy Darling, says her son was happy.
“We are really lucky. My son had been completely healthy.”
But years went by and Burns made it to his sophomore year at Oberlin High School. Then, suddenly his world of joy came crashing down with his first migraine.
“It was awful. It was honestly quite a bit isolating,” Burns said. “Imagine barbed wire running from one temple to the other.”
Tormented by pain, Burn was forced to turn his back on everything he loved, including his violin.
“I could barely play it because doing so causes me too much pain,” he said. “There was basically two years that I was stuck in bed and barely able to do anything.”
Darling says now her son is on leave from college.
“You can’t even imagine how awful it feels to not be able to do the most important thing that a parent is supposed to do which is protect your child,” she said. “Every time that I saw him, I was like what’s your pain? Did you do your homework or did you take your meds? That’s all I said. Have you exercised yet? So that was not a relationship.”
Darling eventually took Burns to the Cleveland Clinic where he was diagnosed with chronic pain, which has no cure. Then came a team of doctors who prescribed him to a lifetime of learning coping skills, a strict diet and exercise.
“Right from the start we had amazing treatment,” Darling said.
But something was still missing.
Despite being an adolescent psychiatrist herself, Darling says she still felt hopeless without a way to support Burns as a caregiver, while still allowing him to regain a sense of independence. In addition, Burns was struggling to try to truly take back control over his pain.
“When I started attending pain rehabilitation sessions with my son, I realized that the types of excellent, science-based recommendations they had were exactly the kinds of things that my research on parenting teens told me were what kids did not want to follow advice on,” she said.
So, she turned to research. With the help of her students at Oberlin College, she came up with an idea to create an app to help her son and caregivers overcome pain. That idea was developed during the 2019 Oberlin College LaunchU Bootcamp and Pitch Competition, which is housed in the Center for Innovation and Impact and is part of Oberlin’s Entrepreneurship Initiative. Darling’s team took first place and was awarded $20,000 to develop the app.
The app is now a tool Burns relies on track his progress, victories, and motivate himself to push forward and take control.
“I have something to be proud of. I’m going through this and going through it okay,” he said.
Here’s how it works. Those living with pain can:
- Use the Weekly Log to evaluate where they are now and set concrete goals for where they'd like to move next.
- Use the Daily Log to track positive and negative mood, daily life activities, self-care, caring for others, and pain.
- Use the Visualizer to look at the relationship between activities, emotions, and pain.
Caregiver mode, which may be unique to 1step2life lets parents, spouses, and other caregivers:
- Use the Weekly and Daily logs to keep track of the person they are caring for emotions, activities, and pain.
- Supports positive caregiving that:
o Helps build and sustain a relationship that focuses on the whole person, not just their condition or illness. o Supports the person being cared for’s autonomy and self-care.