Former all-American wrestler speaks about his personal battle with chronic muscle disease

Myositis AssociationSep 2 2015

In 2009, Mike Powell was where he'd always wanted to be. A former all-American wrestler himself, he'd returned to his Chicago-area high school to become the toughest wrestling coach around, inspiring young athletes with a brutal mix of love and punishing workouts. He was a father figure to many young men from the streets who had no dependable men in their lives. Life was good.

After winning the 3A championship, one of his wrestlers jumped into his arms. Everyone was surprised when the coach -- the strongest man they knew -- staggered backwards with the weight. Two weeks later, Coach Powell joined his team in the school's weight room, as he always did, to show them that he could still do more pull-ups than his hardest worker. That's how he inspired them, Powell said: "I never asked them to do anything I didn't do."

A hush fell over the room as Powell failed to complete more than four pull-ups. No one knew what to say. Those who could see his face knew there was something horribly wrong.

They were right. Powell's next few months were a nightmare of doctors, tests, pain and unbearable weakness. With treatment he got better, then worse. Even on Powell's good days, it took all his effort just to walk his dogs.

Powell has polymyositis, a chronic inflammatory muscle disease. Last year, he stepped down as head coach at Oak Park and River High School, but still works with the wrestling program as assistant coach. A man of many contrasts: honest but bursting with bravado, aggressive and gentle, proud and humble, Powell pulled himself back from despair by finding his own personal way to deal with a cruel new reality.

Powell's powerful charisma, his struggle, and his successful continued work with promising young athletes eventually caught the notice of sports media outside the circle of high school wrestling. In 2012, ESPN released a feature-length film, "In Relentless Pursuit: Coach Powell's Fight."

In 2013, Powell's journey of loss, fear and courage was documented by senior author Chris Ballard in the Sports Illustrated story, "A Man in Full." He was inducted into the National Wrestling Hall of Fame last June, and awarded the National Wrestling Association's medal of courage.

Shortly after his diagnosis and treatment, Powell shared some of his insights with the only people who could truly understand -- others with myositis. At The Myositis Association's Annual Patient Conference in St. Louis in 2010, Powell spoke honestly about his ups and downs, and shared his plan for an uncertain future with those assembled. "I'm still a coach, a teacher, a son, a husband, a man," Powell said. "I made a list of what I wanted for the future, then revised it to reflect what was actually possible."

With another five years of polymyositis under his belt, Powell returns on Thursday, Sept. 10 to inspire myositis patients at TMA's 2015 Annual Patient Conference in Orlando. His talk, in the Caribbean Ballroom of the Caribe Royale, will begin at 3 pm. Journalists are invited to attend the session and to arrange an interview with Coach Powell.

A disease that wastes muscle has to be an especially tough diagnosis for athletes and others who rely on personal power and coordination for their living, those accustomed to being "the energy in the room," (Mike Powell's words). Shortly after hearing Powell's words of inspiration, many myositis patients and families will participate in an event featuring Mike Krukow, the former pitcher who spent 14 seasons in the big leagues via Chicago, Philadelphia and San Francisco, and who now adds his distinctive voice to broadcast coverage of the San Francisco Giants.

Krukow, a 6-5, 200-pound right-hander, won 124 games, had a 20-win season in 1986 and pitched more than 2,000 innings. He has been diagnosed with inclusion-body myositis, an untreatable form of the disease.

On September 20, the Giants will honor Krukow at home plate before the Arizona Diamondbacks game at AT&T Park. The event will also feature information about diagnosis, management, and treatment of this little-known and understood disease. Fans will be able to donate to TMA in honor of Krukow throughout the game via text.

The  is a non-profit organization providing education and support and funding research for patients with dermatomyositis, polymyositis and inclusion-body myositis, their families and health care professionals.