GRAND RAPIDS, MI -- Bill Barkeley, of Grand Rapids, is setting out to run a marathon, and not just any marathon either, the Boston Marathon.

The fact that he will do it as a legally deaf and blind man gives more weight to the endeavor.

Barkeley began losing his hearing as a child due to Type II Usher Syndrome, a disease that robs people of their hearing and vision over time and affects about 15,000-20,000 people in the United States. It's a progressive disease and there are no known cures.

"I go further and further into darkness and silence," Barkeley said. "I know where I'm going. At first I was pretty scared of that, but there's also a lot of good in that because I do know what it is."

The idea to run in a major race came from the many other activities Barkeley does to promote breaking the stereotypes often associated with being physically handicapped. Bill's run will highlight the work of the Massachusetts Eye and Ear Infirmary where he has been a patient since 1989.

"It's about showing people that these things are possible and I enjoy getting out and setting a challenge," he said. "So I was able to define myself rather than other people defining me. I think that's one of the bigger challenges that anyone with a disability has in their life.

"The minute somebody says you have whatever you have, they automatically get preconceptions, stereotypes and expectations of you as an individual, your role in society and where that will go."

Barkeley decided he wasn't going to let that shape his future.

His spotlight event was climbing Mount Kilimanjaro in Africa using wireless communications and night vision goggles so he could see his guide's feet.

"So I didn't have to use ropes and bells. I could go at my own free will. We did it differently than anyone had ever done it before."

Barkeley's youngest son, Will, 17, says participating in the marathon training with his father makes it even more special.

"The past few years he's been taking on challenges, but this year is different because all the kids have been part of it, so we've all kind of connected with his mission, and that's been cool. It makes it more of a group effort and it's exciting to be part of it."

"Mount Kiliminjaro was the big one, but I don't think that was as rigorous physically," Will said. "I think that was more of a mental challenge. I think this is more of a physical challenge, especially with him never having done a marathon before. It's pretty impressive that he had the courage to take the challenge on."

Will as well as his brothers John and Brian will be Bill's pacesetters for the marathon.

In 2011, Bill's adventure projects kept him busy.

He climbed Mount Quandary with Erik Weihenmayer and Jordan Romero, the youngest person to climb Mount Everest; competed in the World T.E.A.M. Sports Adventure Team Challenge; hosted the No Barriers USA Summit 2011 for 600 attendees; and led his second Hear the World Expedition.

"It's not about the athletic conquest," he said. "I do all these adventures to help other people. It's about showing them that there's a lot of great assistant technologies out there to help people do things that they never thought were possible."

For the marathon, Bill will be using a wireless Bluetooth system during the race to communicate with his running guides so they can help him with direction, turns and the location of potholes or uneven surfaces.

"Now I feel like he's really doing something that he's been meant to do: be a voice for the people who have these disabilities and struggles in their lives," Barkeley's sister-in-law Katie Millman said. "He can do anything, it just looks a little different."

Millman, who is sister to Barkeley's wife, MaryBeth, says Bill seems to have a true purpose and can help kids with similar disabilities realize that they can continue living and exploring, even with their individual challenges.

"He's really been through tough tough times, but you see the full circle," she said. "You see him go through all the steps of accepting, like when he had to stop driving, or when he had to start using a cane."

"Each one is a major deal, and he goes through that whole process over and over again where he's got to accept it and grieve through the loss of it, and come out on the other side.

"And he always comes out on the other side."

For Barkeley, that's the only mentality that fits his personality.

"There's this whole process that we all go through," he said. "You only have so much energy in your life. You can either use that energy to fight the inevitable, or what you can't control, or you use that same energy in a way to do things that are a lot more fulfilling, energizing and give you more of a sense of purpose."

Follow Cory Olsen on Twitter or email him at colsen@mlive.com