GRAND RAPIDS, Mich. (WOOD) — When darkness is inevitable, you have to make every moment count. It’s a mantra Bill Barkeley lives by because Usher syndrome is robbing him of both his vision and his hearing.
“I have said it and it is kind of crazy, but deaf-blindness is one of the greatest things that has ever happened to me,” Barkeley said.
The constraints of his impending darkness have made him focus and prioritize making every moment count.
“So for me, it all just gets down to an ever-elevating life is a gift, but that gift is something you have to go for and chase and make it happen. It just does not come to you,” he said.
Barkeley’s adventures started when he decided to climb Mount Kilimanjaro. With the help of technology and a guide, he ventured through six layers of the ecosystem and made it to the top.
“It had a powerful component of the athletic and adrenaline stuff then there was the unknown. It could fall apart at any time and there was not a 100 percent chance that I would make it,” he said.
He said that was the beginning of the process of starting to understand his struggle and changes he needed to the direction of his life. He sought out new challenges. Each time, he would partner up the organizations to raise money and awareness for causes close to his heart.
“What happens is, I feel it is important to take a leadership role. Elevate other people. You want to be a net giver to the world, rather than a net taker. I get all these incredible things to do, but I also need to try and be deliberate about it and try to use it to inspire other people who in are similar situations,” he said.
Barkeley has run the Boston Marathon twice with his sons as guides. The second time was the year after the Boston Marathon bombing.
“What happened was 300 people from the bombing had vision and hearing loss issues for the rest of their lives moving forward. They needed surgery. They needed technology, they needed rehabilitation. We had 50 people raise over $800,000 for these people so they could have lifetime care. They were innocent bystanders,” Barkeley said.
He has also taken hearing-impaired children into the Amazon rainforest and for hikes in Machu Picchu. Recently, he was part of a group that hiked the Camino de Santiago in Spain. Yet, he has adventures planned.
“I have the same feelings as everyone else. I want to have significance. I want to have meaning. I want to have impact. But the world is telling me what I should be thinking, or how I should be acting, or how I should engage with the world. I just don’t buy into that,” he said.
All in the quest to make every moment count.