‘I’m Always Struggling to Better Myself’
CHELMSFORD -- Deep in concentration, Bill Muse gripped the wheels of the wheelchair, propelling himself forward inch by inch, foot by foot.
“Just a little more,” said personal trainer Sam North, 23, of Chelmsford, whose own weight was contributing to the 340 pounds on the sled strapped to the back of Muse’s wheelchair.
When he reached the wall of the upstairs workout room at the Best Fitness Drum Hill, a look of simultaneous relief and triumph washed over Muse’s face.
He and North shared a fist bump in celebration.
It wasn’t the most weight Muse, 40, of Chelmsford, had pulled. Last month, he pulled a personal record of 400 pounds. But that was with his own wheelchair, which soon after had a small front wheel break off, unrelated, he said, to the pull. He’s currently using a loaner wheelchair while his is being fixed and doesn’t want to risk damaging it, so he’s otherwise taking a short break from the really heavy pulls.
“It’s definitely tougher with this chair,” Muse said.
Muse, 40, was born with myelomeningocele spina bifida. It’s the most severe form of the congenital condition, in which the spinal cord and protective membranes, surrounded by a fluid sac, push out through an opening in the vertebrae. It also meant he was paralyzed from about his belly button down.
Muse underwent a number of surgeries as a child that allowed him to regain enough mobility to get around using forearm crutches up through high school. At that point in his life, he only used his wheelchair for sports.
The fact that his parents never made their home wheelchair-accessible helped Muse to stay mobile. It wasn’t until he moved into his own accessible apartment as an adult that he came to rely on his wheelchair. Spending more time in the chair led to gaining weight, which set him further back from getting back up on his crutches.
Despite his disability, Muse was relatively healthy for most of his life. For nine years, he’s played wheelchair basketball with the New England Blazers, and spent one year playing wheelchair hockey.
Muse has a shunt in his head to help regulate the flow of his spinal fluid. They usually last only about 10 years, but Muse said he was lucky to get more than 25 years out of his.
“All of sudden I hit 35 (years old), and it was like a ton of bricks,” he said.
After attending a basketball camp in Cleveland in 2014, he got off the plane in Boston and immediately went to Massachusetts General Hospital, feeling something wasn’t right. A couple hours later, he was in surgery.
“The neurosurgeon said, ‘That alone should have killed you, being on the plane,’” Muse recalled.
Muse received a new shunt, but he had been so used to the pressure level of the old one that the new kind didn’t agree with him. Over the next three years, he had several issues with shunt that required surgeries -- about 10, he said.
All of those surgeries caught up with him and he contracted an infection in his brain in August 2017, followed by a blood clot.
“Me being me, I made all kinds of jokes about it, like, ‘How can I have a brain infection when I don’t have a brain?’” Muse said.
He spent most of that month in and out of the hospital, followed by about six months of a mix of physical and occupational therapy to get back the muscle mass he lost and regain his ability to transfer from his wheelchair.
Wanting to continue his progress after what was medically necessary, Muse decided to take up additional physical therapy with Bay State Physical Therapy next door to Best Fitness, where he’d been working out for a few years. His goal is to regain the mobility he had on crutches in his younger years.
In February, Muse began training with North. It was the first time North had worked with anyone with Muse’s condition.
“I kind of took it easy at first, felt things out, and then realized he was a tough guy and kind of laid into him a little bit more with the weights,” North said. “He’s very competitive. We started pushing the sled one day, and kept piling on the weights.”
They began with pulling 165 pounds -- which soon became Muse’s warm-up pull.
Week after week they added more weight to the pull. Muse didn’t know at first he’d hit the 400-pound mark -- North had quietly added more, without telling him exactly how much.
“It felt good,” Muse said.
He hopes to get up to 600 pounds, and perhaps, eventually, a tank, as he jokes with the gym staff who are members of the military.
The combination of physical therapy and training have helped Muse “come a long, long way in a short amount of time,” he said.
Muse’s physical therapist, Juan Sanchez, agreed.
When they started working together, Muse could only walk about 15 feet to 20 feet using a walker before having to rest, Sanchez said. Muse can now walk with crutches and leg braces for about 50 yards before taking a break, Sanchez said.
“Now, per session, we can do 300 feet total,” he said.
Sanchez said Muse’s standing tolerance on the crutches has increased from less than two minutes in June to seven minutes now. If his progress stays steady, Muse will be getting around on his crutches full-time very soon -- possibly as little as a few months, Sanchez said.
“I’m always struggling to better myself,” Muse said.
Follow Alana Melanson at facebook.com/alana.lowellsun or on Twitter @alanamelanson.