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Amy Donaldson: North Las Vegas runner refuses to let debilitating disease stop him

Published: Sunday, June 2 2013 8:40 p.m. MDT

Adam Silverstein participates in the Ragnar Relay trail experiment earlier this year. He continues to run despite a debilitating disease called myasthenia gravis. (Rich Martin) Adam Silverstein participates in the Ragnar Relay trail experiment earlier this year. He continues to run despite a debilitating disease called myasthenia gravis. (Rich Martin)

NORTH LAS VEGAS, Nev. — It began as a way to lose weight.

Somewhere along the way it became a refuge.

And now, after being diagnosed with a rare, debilitating disease, running is how Adam Silverstein defiantly holds on to who he is.

“I used to run because I could,” said the 27-year-old Arizona native who now lives in North Las Vegas. “Now I run because everyone, including my own body, tells me I can’t. ... I choose to run, not because it is easy, but because it is hard.”

Silverstein was never an athlete.

“I played baseball as a kid, and I hated every minute of it,” he said with amusement evident in his voice. “One day a couple of years ago, I joined a gym to lose some weight and started running.”

Adam Silverstein participates in the Ragnar Relay's Northwest Passage race. He continues to run despite a debilitating disease called myasthenia gravis. (Courtesy Adam Silverstein) Adam Silverstein participates in the Ragnar Relay's Northwest Passage race. He continues to run despite a debilitating disease called myasthenia gravis. (Courtesy Adam Silverstein)

As he dropped unwanted extra pounds, he also started to shed emotional baggage.

“It was very therapeutic for me,” he said. “It just gave me 30 minutes, or an hour, to be with my thoughts. There was nothing about work, school — just meditate almost, but a little more actively.”

He ran his first race — a 5K — in 2010, and the bond was cemented.

“I love racing,” he said. “I’m not fast, and I probably never will be, but there is something satisfying about the accomplishment each time.”

In December 2011 he ran his first half marathon and quickly tallied seven 13.1-mile races. He heard about a long-distance relay in his hometown of Phoenix, a Ragnar Relay race in which 12 runners take turns covering just under 200 miles, and jumped on a team with 11 people he’d never met.

Adam Silverstein participates in the Ragnar Relay's Las Vegas race last November. He continues to run despite a debilitating disease called myasthenia gravis. (Courtesy Adam Silverstein) Adam Silverstein participates in the Ragnar Relay's Las Vegas race last November. He continues to run despite a debilitating disease called myasthenia gravis. (Courtesy Adam Silverstein)

“That was probably my least favorite course, but the team was fun and the whole experience was amazing,” he said. “My first three teams were complete strangers going in, but they’re some of my best friends now. I’m running Niagara (Ragnar) in two weeks with six people I’ve run with on other Ragnars. It’s just a unique experience, and you don’t get that every day of your life.”

The relays provided him with the teammates he’d never had in a sport that had become central to his life.

“There is nothing in my life I’ve ever looked forward to as much as running a Ragnar,” he said. “Every time I schedule one, I’m counting down the days.”

Last July he was running on the treadmill when “everything went blurry.” He began to experience weakness in his face, neck and arms and constantly dealt with unexplained blurred vision.

Adam Silverstein participates in the Wasatch Back Relay race last June. He continues to run despite a debilitating disease called myasthenia gravis. (Courtesy Adam Silverstein) Adam Silverstein participates in the Wasatch Back Relay race last June. He continues to run despite a debilitating disease called myasthenia gravis. (Courtesy Adam Silverstein)

He got an explanation for the symptoms on Aug. 29, 2012, when doctors told him he had myasthenia gravis, a disease in which his body’s immune system attacks the acetylcholine receptors in his muscles, preventing them from properly contracting.

Some days he feels like he should at 27 — fit, energetic and strong. Other days he struggles just to talk, sometimes even to take a breath or swallow.

Silverstein is battling the disease with everything he has — and everything medical science offers. He’s undergoing several treatments and takes oral medication three to five times daily, as well as enduring an IV therapy every other week.

“There are no guarantees,” he admits. “The possibility exists that I could go into a period of remission when the disease seemingly lies dormant within my body, but it could flare up without warning at any point.”

The triggers are just about anything — stress, environmental changes, infections, and maybe most problematic for him, physical exertion.

“Some days I’m fortunate enough to be able to chew more than a bite or two of food at a time,” he said. “Other days I’m happy not feeling like 50-pound weights are hanging from my eyelids.” He wears an eye patch to help him see clearly and looks forward to the days when he doesn’t have to focus on the effort of each breath.

“All of this added together makes it difficult, if not impossible, to run,” he said.

According to Silverstein, his family “thinks I’m crazy,” and self-pity is something he’s succumbed to more than once. In fact, sometimes the fact that he understands the joy of running makes battling his disease on a daily basis even harder.

“It really has the potential to take away my ability to run, and in some ways it already has,” he said, struggling just to finish his thoughts. “But I have a motto, people often hate: It is what it is. I’m an accountant and I take things at face value. I can’t do any more than what I’m doing to treat it and prevent it, so what else do you do? You live with it and you live your life around it.” Which is why he’s signed up for two more Ragnar Relays this month. He will run with team MizFitz on June 21-22 in the Wasatch Back’s 10th-Anniversary event just a week after running the Niagara Ragnar. In the Wasatch Back he is expected to cover 19.1 miles, and he’s hoping to find that familiar freedom when he runs — not the weight of his disease.

“It’s not what I expected at this point in my life, but it’s out of my hands,” he said. “All I can do is what doctors tell me and go through the treatments, do my own research, study on and work with it.”

He knows his love of running has the potential to make even the most mundane activities more difficult. He participated in an obstacle race last month and paid for it with two days of severe suffering.

“I could barely swallow the next day it was so bad,” he said. “People ask me why I do it. There could be a day next year … in five years, that I won’t be able to do it. So I’m going to keep doing it what I can.”

Running is harder than it’s ever been, but Silverstein continues putting one foot in front of the other because he doesn’t want to surrender the life he created for himself.

Naturally a quiet and reserved person, the Ragnar Relays have developed parts of his personality that he never imagined when he was growing up.

“It’s the camaraderie, but also the challenge of it,” he said. “You’re up for two days, sleeping where you can, eating when you can. It’s not something most people would do in their normal course of life.”

If he can’t run, he loses the man who chose the daily discipline of a sport that rewards you by making you suffer.

“I would lose a piece of who I have found myself to be as I’ve gotten older,” he said. “It’s not something I really do. ... It’s become an identity for myself as I get older. It’s what I talk about to people. I’m sure I drive people crazy. ... It’s become such a huge piece of me. It will really be upsetting when and if I can’t run.”

And then, without a hint of sentimentality, he adds: “It is what it is.”

Twitter: adonsports Email: adonaldson@deseretnews.com

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