By Lisa Boylan
EpilepsyUSA Managing Editor
Posted: February 7, 2007
Harlem Wizards basketball player “Mighty Mike” Simmel earned his nickname from an unlikely superhero: Mighty Mouse, the cartoon character who transforms himself into a powerhouse committed to saving the day. Mike Simmel knows a thing or two about overcoming obstacles, staring down adversity and, yes, even saving the day.
Boy Finds Ball
Mike was diagnosed with epilepsy when he was 2 years old. His family thought he was choking on an English muffin, but they quickly discerned that it was something more complex. The family started learning about epilepsy, which involved a lot more steps in the days before the Internet. Bill Simmel, Mike’s father, said, “It’s not like you could Google ‘epilepsy’ back then.”
They went to the library to find out about the condition and began a long journey of learning how to respond creatively and proactively to situations. When Mike had seizures on a regular basis, causing his head to bang on the dinner table, they threw a blanket on the floor and came up with “picnic night.” The family navigated the painful realities of unsent sleepover invitations, whispering, teasing and the other myriad side effects of ignorance that surround epilepsy. Bill said, “Everybody’s got, unfortunately, their stereotype of what epilepsy is… there’s a stigma attached to it and there really shouldn’t be. Part of that stigma is because people just aren’t really educated about what epilepsy is or what it does.”
When Mike was little he was in a special education gym class because, he said, “I couldn’t walk and I couldn’t hop and I couldn’t skip.” His father, a lifelong basketball fan, bought him a basketball to help develop his motor skills. Mike went from a kid who wondered why he was in a special gym class to a kid who was running circles around his classmates. His father noted that it was a classic case of, “Boy finds ball; ball finds boy.”
Bill built him a concrete half court in the backyard. He said Mike would keep playing even in winter, shoveling the snow off of the court and continuing to play. Bill noted, “He wouldn’t shovel the driveway but he’d shovel his own basketball court!” His father also observed that Mike’s dexterity with a basketball imbued him with the self-confidence he had lacked and it became a constructive outlet.
When Bill counsels other parents at epilepsy functions he says, “It doesn’t have to be basketball, it literally could be music, art appreciation—it could be anything you want it to be—as long as the child has an outlet where epilepsy and what epilepsy means to him doesn’t consume him.”
Bounce Out the Stigma
Mike’s love of basketball naturally led to basketball camp, however, when he was 16 he had his first seizure in 10 years in the shower. The camp director called his parents and said Mike would have to leave—he couldn’t face the potential liability. Mike’s father negotiated with the director, who would not yield.
Finally Bill Simmel said: “If you bounce him out of camp, I will sue you.” The director reconsidered and asked for a signed letter from Mike’s neurologist.
Mike stayed at the camp but, he reflected, “I felt terrible. They wanted to send me home because they wanted to protect themselves. I didn’t feel good about it.”
In that funny way life has of tossing inscrutable curveballs, a lot of young people are fortunate that Mike was almost kicked out of camp that summer because the incident galvanized him. He never wanted other kids to feel what he felt then. So he created Bounce Out the Stigma, a camp geared toward kids with special needs ranging from epilepsy to ADD to confidence issues. The camp provides training in basketball drills, but also covers nutrition and weaves motivational messages throughout the weeklong session. He explained, “There’s a social stigma surrounding epilepsy and one of the things I’m trying to do with Bounce Out the Stigma is try to prevent that stigma that’s attached to epilepsy.”
Bill Orsini’s 13-year-old son Will attended the camp. Will has seizures every day that require a network of strong medications however, despite the seizures and the grogginess he experienced after taking his medications, he did not want to leave the camp. He’d take his medicine, rest for a while and then get back on the court. Orsini said, “Mike does an extraordinary job of making the kids feel good about themselves despite their limitations.” He continued, “Having lived through this, I think he understood that every kid was different and they all needed different kinds of support.”
Mike was pleased—and a little surprised—at how well the camp went. He said, “It was one of the best things that’s happened to me in my life—to see these kids so happy, to bring a smile to these kids’ faces—was just great.”
Five years ago, Mike had another experience that colored his life indelibly and informs the work he does today with kids. He was juggling school, his first year as a Harlem Wizard and a part time job with the New York Knicks when he was overcome with severe chills. His family rushed into his room, scooped him up, wrapped him in a blanket and sped to the hospital. He had a fever of 108 degrees and went into a coma. His father thought, “I’m going to lose this kid.” They got the fever down—it was pneumonia—and Mike emerged from the coma. He and his family were amazed that, given his susceptibility to seizures, he did not have a seizure or convulsions throughout the entire ordeal. Mike said the experience made him understand “how important it is to live each day to the fullest and follow doctor’s orders—or parents’ orders—and take care of your body.”
It was a difficult time in his life comprised of competing demands and exacerbated by his sudden illness. He began exhibiting bipolar tendencies, possibly triggered by the high fever, and said he felt like he had “a 20,000 pound weight” on his back and he was “struggling.” He sought help, however, and “worked through it.” He said he realized, “You can’t save the world, you know?”
But, as the unlikely superhero Mighty Mouse famously intoned, it is possible to save the day, especially for young people with challenges who need extra nurturing and understanding.
For more information on Bounce Out the Stigma and “Mighty Mike” Simmel visit:
Watch Mighty Mike at the 2007 Kids Speak Up! Event: