Emily Schaller: Fighting Cystic Fibrosis Through Running

Before Emily Schaller begins her run down Concord Avenue, beside the ruins of the once great Packard Automotive Plant—now home to crumbling facades, sagging iron beams, rooftop vegetation and one moored boat—a pheasant crosses the street.

“Detroit’s wild, baby!” shouts Schaller, as the yellow-haired, manic pixie chick is off and running. The former rock band drummer motors past the crumbling facades, feet swift and breathing controlled. You know she’s thankful for it because there was a day when one block would leave Schaller coughing and spitting for 10 minutes.

Schaller is the not-so-lucky recipient of each of her parent’s recessive genes for cystic fibrosis. The disease makes her sweat buckets of salt and causes her body to create thick and sticky mucus that gums up her pancreas and lungs. Hence, the coughing. When that mucus sticks to her lungs, it traps bacteria and those bacteria turn into recurring lung infections, which leads to loss of lung function. Loss of lung function is the reason the current median age for survival for people with cystic fibrosis is 40 years old. When Schaller was diagnosed, the life expectancy was 18, and she was told she wouldn’t make it to her high school graduation.

Now 33, Schaller is the founder and champion of Rock CF, a nonprofit organization that raises money and awareness for cystic fibrosis. Every morning, she wakes up at 6 a.m. and joins her friends in Grosse Pointe, Mich., for a run through the parks and along the shoreline of Lake St. Clair. She ends her run with a nebulizer to inhale a drug that thins the mucus in her chest, then straps on a vest that inflates with air and shakes the bejesus out of her to loosen the thinned mucus. When she eats breakfast, she pops five to six enzyme pills to help her pancreas absorb nutrients, and she’ll take 25 to 35 more before the end of the day. She finishes her routine with a little blue pill called Kalydeco, which treats where CF happens in her cells. It’s a lot of work, but it’s why she’s alive.

When Schaller was in her early 20s, drumming for six-hour stints in Detroit’s smokiest bars, she felt sick all of the time. She was in the hospital for three to five weeks at a time due to devastating colds that came like quarterly taxes. Her lungs functioned at about 50 percent capacity. Then she began running, block by agonizing, coughing-fit block.

It took Emily four months to run two miles, but her body began to tell her it was worth it. Within two years, her lung capacity jumped to 70 percent, which was the highest she’d seen since she was a kid.

“I thought running was stupid,” says Schaller. “Unless it involved a sport with a ball. I had no interest in running for no reason. Until I found my reason: my health.”

Now Emily runs 25 to 30 miles per week. With the little blue pill, her lung capacity is now at 88 percent and her doctor tells her she’s the healthiest cystic fibrosis patient he has. She’s run 16 half marathons and has a goal to run one in every state.

“Six down and 44 to go,” says Emily. “Yeah. I’m gonna be about 90 when I finish. But at least I’ll be 90.”

 

Follow Emily’s journey in Part 2, coming soon.

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