Muscular Dystrophy Doesn't Stop Jon Bokowski From Living Life to the Fullest

If you’ve lived around East Haven for a while, you’ve probably seen Jon Bokowski in his wheelchair.

You might have heard the music he was playing for the public at the one summer. If you went to a movie at the Regal Theater during his 10-year stint there, he may have been the guy tearing your ticket stub. You might have encountered him at East Haven school events where he was a student until his graduation in 2002.

Jon has been busy trying not to let his Duchenne muscular dystrophy get in the way of leading a full life. Now, however, the disease is inexorably dictating what he can and cannot do.

“Basically, I only have control over a couple of fingers now,” Jon said. “The doctors have recently told me I’m in chronic respiratory failure. They’d like me to have a tracheotomy so they can insert a breathing tube and a feeding tube. I’m thinking about it.”

While he considers his limited options, he’s also remembering the path of his life up to this point.

Jon, who will be 27 on April 20, was born with his disease. Duchenne muscular dystrophy is passed genetically to 1 in every 4,000 boys. His mother, Valerie, had a brother, uncles and cousins who also had it. Her experience with the disease drove her to get a nursing degree at so that she could help him.

“We moved here from New Haven in 1992 after someone was shot on the sidewalk in front of our house,” Jon recalled. “I started school at in the third grade. I was able to walk until I was about 12; then I got my first wheelchair about sixth grade.”

One of Jon’s comforts and passions has always been music. He decided very early on that he’d like to be a disk jockey and has collected an enormous catalog of music of all styles.

“When I was a high school freshman, I had the opportunity to ‘shadow’ a professional disk jockey at a local radio station. I told him what I wanted to do, but he said that in a wheelchair I’d never be able to reach all the switches and buttons I’d need to in order to operate the equipment,” Jon said.

So, he created his own niche. A woman who was a professional DJ gave him a set of used equipment. He printed up some business cards and then went off to find a way to share his music. He volunteered to work for the Town of East Haven as a summer disk jockey at the town beach and for open-skate nights at the town rink. He also played for clients’ weddings, such as the one with a Mexican-Italian theme where he played “everything from salsa to Frank Sinatra.”

Hockey became an important part of his life when he was a teenager.

“I had to go in for a spinal fusion because being in the wheelchair was giving me scoliosis [curved spine], so a friend of mom’s gave me tickets to a New Haven Beast game,” Jon said.

He loved the action and became an avid fan. He formed an enduring friendship with John Jakopin, who played for New Haven and several other NHL teams. Whenever possible, he would attend games where Jakopin appeared. That led to introductions to other hockey figures.

“I got a chance to meet my ‘hockey goalie god,’ Patrick Roy, after mom wrote to the Colorado Avalanche team to tell them how much I admired them,” he said. “I met him and the whole team at a Boston Bruins game before he retired.”

Hockey memories abound in Jon’s life.

“I ate my breakfast Cheerios out of the Calder Cup one year when I got to keep it overnight.”

He also had a friend in Toronto at the Hockey Hall of Fame who let him hold the Stanley Cup for a few minutes. (The Calder Cup is given to the American Hockey League championship team; the Stanley Cup goes to the National Hockey League champions.)

His mother has been a constant presence at his side, making it possible for him to have these adventures. She has been his advocate, chauffeur, secretary and nurse. His aunt, Cindy Bokowski of East Haven and his grandmother, Nancy Johnson, who died two years ago, have also been part of the support team as he’s dealt with his disease.

Jon had hoped that another woman would become part of his life, as well. After graduation, he spent two years courting a young woman in the Philippines via computer. When she said she wanted to marry him and come to the United States, he arranged a visa and married her. However, she soon decided she didn’t want to live in East Haven with his mother.

He relocated to Ohio to live with some friends of hers, but then found himself alone when she decided to go to New York City to live. He was homeless, with no support system, when local hospital officials called his mother. A friend drove her to Ohio where she picked up her son and his van.

That occurred two years ago. Now, cocooned in his warm, darkened room, Jon’s physical condition has seriously deteriorated. He can use a special mouse to operate his computer, primarily for his music.

“Music has always helped me cope with all that’s going on in my life. It makes me happy and I like to share that happiness with others,” Jon said.

He spends most of his time reclining in his motorized wheelchair, often with his new dog, Izzie, on a pillow on his lap. His time on the breathing machine that sits beside his bed has increased to 18 hours a day. When Valerie took him to a concert recently at Mohegan Sun, they had to stop at the emergency room in Guilford to plug in his portable breathing machine.

“Jon is so patient,” Valerie said. “He’s been my greatest treasure and I’ve learned so much from him. He’s always patient and gentle. I’ll get frustrated or angry and he just tells me to be calm, to let things go.”

However, even Jon’s calm is beginning to fray. He wishes people would visit more, though he understands that the prospect of seeing a dying friend is difficult.

Jon is now deciding how best to live his remaining time.

“At this point, I can move a couple of fingers and my mouth,” he said. “If they put in the breathing tube and feeding tube, I won’t be able to talk anymore. I won’t have a way to communicate and I won’t be able to move. It’s really scary. Do I choose quality of life or quantity? Do I want to live longer but with no mobility?”

As Jon continues that internal debate, Valerie remains posted by his side. She juggles two phones in the background and helps provide whatever help is necessary to keep from overtaxing him. She does not give any hint of her opinion on his choice. After all their years together, it seems she knows that this is one thing Jon must do alone.