muscular dystrophy

There are certain moments in our lives that are too important not to share with the people we love.

Singer-songwriter Eric Hutchinson is having one of those moments.

Photo by Ralph Arvesen/Flickr.

Hutchinson and his band recently embarked on a tour to promote his new album, which he was proud to have independently produced. They are set to perform in Hutchinson's home state of Maryland at Merriweather Post Pavilion, an over 19,000-seat outdoor amphitheater that has hosted some of the most famed musicians in modern history.

This is one show Hutchinson doesn't want his family to miss. And he's especially excited for his dad to see him on the historic stage. But getting him there requires more than a VIP pass.

Before Hutchinson was big enough to pick up a guitar, his dad was diagnosed with an adult-onset form of muscular dystrophy (MD).

Photo from Eric Hutchinson, used with permission.

In the decades that followed, the disease progressively took away his father's control of his own body.

Though Hutchinson was too young to fully grasp the situation at the time, as his father's condition progressed, a frightening picture came slowly into focus.

"I don’t remember when I first found out about my dad’s disease, but I just knew that something was different," he said. "But the older I got, the more I understood, and the more I worried."

Then, in college, he learned more about MD that gave him concern for his own future.

Most muscular dystrophies are genetic. Hutchinson had a 50% chance of inheriting the gene flaw that caused his father’s MD.

"When am I going to wake up and feel something?" he wondered. "When my hands were tired, I worried that they were symptoms."

And as his creative interests became a full-time music career, he had a hard time facing the possibility that it could be taken away so prematurely.

"I’m a musician, and I rely on my hands to perform," he said. "So it wasn't just, 'Am I going to lose the ability to handle my day-to-day.' It was also, 'Am I going to lose the ability to do my job?'"

As his motor skills deteriorated, Hutchinson’s father had to let go of a lot of his passions. But he never stopped challenging himself.

“To my dad's amazing credit, he was always trying to do as much as possible and not allow it to limit him,” said Hutchinson.

Photo from Eric Hutchinson, used with permission.

When it would have been easy to withdraw, his dad went headfirst into parts unknown. MD made his woodworking difficult and dangerous, but he could still use a computer. So he earned a master’s degree and started a new career in web design.

Though he could no longer hold a guitar chord, he still had a voice, so he joined his synagogue choir. And, says Hutchinson, he walked for as long as his body would allow, falling often, but getting up just as many times.

While his father’s illness started as a fearful shadow to run from, his chosen life gave Hutchinson the courage to get tested.

In the winter of 2015, the day before he began recording his new album, Hutchinson met with a neurologist to give blood samples for the test. In a matter of weeks, he’d finally have the answer he’d been avoiding.

“I found my mind drifting while recording,” Hutchinson wrote in a personal essay once his work in the studio was done. “The sessions were colored by the anxiety that at any moment the doctor could be calling with results that could change my life.”

But, like his father, he chose to persevere. “I put one foot in front of the other, channeled the emotion into the songs, and kept talking to my therapist who helped me navigate it all. Slowly, I got stronger.”

Photo from Eric Hutchinson, used with permission.

Two days after he finished recording his album, he got a call from his doctor. Hutchinson tested negative for the genetic mutation for MD. But what he thought would be some of the most relieving news of his life turned out to be more bittersweet.

"I expected to have this celebratory, washing over me with elation. Of course it was a relief, but MD was still a part of my family, so I had a lot of complicated feelings around it."

For Hutchinson, an end to his fear of MD marked the beginning of a new mission to support the MD community. He's starting by simply talking about the disease.

This is something new for him, as his family tended to avoid open conversation about MD.

"It was like a secret I had to keep, which felt very isolating. So I’m proud of the fact that we’re having this conversation right now," he said. "Being able to talk about it takes away some of the fear. I can look at it more clinically and understand it for what it is."

And with his upcoming tour, he’s inviting his fans into the conversation through his music and a heartfelt open letter that speaks to his personal journey.

Photo by Ralph Arvesen/Flickr.

Hutchinson joins a long list of entertainers in that effort, dating back to 1951 with Jerry Lewis and Dean Martin’s first televised appeal for viewers to support the Muscular Dystrophy Association on “The Colgate Comedy Hour.”

While a cure is yet to be discovered, MD research has led to potentially game-changing developments.

Among them are advancements in physical therapy, experimental drugs that could help control MD symptoms and gene editing using revolutionary CRISPR technology.

Image by Ernesto del Aguila III, NHGRI/Wikimedia Commons.

We can see the value of all that work in recent stories like those of 18-year-old Latondra Chappell, a teen with MD who worked hard in physical therapy to get out of her wheelchair and walk the stage at graduation; 23-year-old Jon Piacentino, an aspiring scientist who has benefited hugely from experimental MD drug treatment; and 14-year-old Devin Argall, who’s participating in an MD drug clinical trial and was named a "goodwill ambassador" in the state of Wisconsin for his advocacy.

For the first time in years, Hutchinson feels he's on the right emotional bearing, and he wants to spread good along the way.

Connecting with people through music is one way he wants to do that. And if he ever veers off course, he knows just where to look to get back on track:

"I reflect on my dad. I got to see his resolve and endless determination up close. He fell, but he got up. Now I fall, but I get up."

As for the big show in Maryland, Hutchinson and his manager were making door-to-door arrangements and ensuring there was wheelchair access every step of the way.

Because beyond his son's music success, hearing his newfound voice on MD — and on such a massive stage — would be too proud a moment for Hutchinson's dad to miss.