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Kansas City Artist And Pastor Dylan Mortimer Opens Up About Life With Cystic Fibrosis

Paul Andrews
Artist Dylan Mortimer stands in front of an enchanting image depicting what for him is an object of desire: a pair of lungs.

When Dylan Mortimer was in fifth grade, he got a coveted pair of Air Jordans. 

"I was able to get some for about $60 that were a size too small for me," he recalls, "but I knew that was my only chance to afford them. I put them on and I was the envy of the school for about a year."

Of course, wearing shoes a size too small is no fun. "It was miserable and I can't say it really elevated my basketball play," he says with a laugh.

Mortimer's story is featured on the podcast Midwesternish. Subscribe today wherever you get your podcasts.

That he played basketball at all was a small miracle. Mortimer was diagnosed with Cystic Fibrosis when he was three months old. That's a genetic disease that fills the lungs and other organs with a thick mucous, eventually clogging airways and limiting the sufferer's ability to breathe. The disease is chronic, and fatal. When Mortimer was growing up, the life expectancy for someone with Cystic Fibrosis was the late teen years. Now, thanks to advances in medicine, it's 37.

Mortimer is 36. His illness is approaching the stage where he expects to need a lung transplant.

Previously, as an artist, he's focused on questions of religion. Now, for the first time, he's exploring his health. And in addition to images of sparkly lungs dripping with thick green goo, he's included images of Air Jordans.

In one image, an upside down lung grows up out of a single shoe. The title of the work is Give Me Two Pair. When asked if he was referring to lungs or Air Jordans, his answer was: "Both."

Credit Paul Andrews / paulandrewsphotography.com
Dylan Mortimer in his studio.

His love for Air Jordans goes back to an intense feeling he'd get while watching Michael Jordan play basketball. The athlete jumped so high that it looked like he could fly. 

"That spoke to so many people," Mortimer says. "Obviously, it spoke to me on a practical level, because I played basketball too and I wanted to jump like that too, but also I wanted to fly in my life. I wanted my life to be more than what doctors were telling me it would be."

He never wanted being sick to define him. 

"When you grow up sick and you're kind of known as a sick kid, you want to do anything to just me normal and not talk about that." 

So although he grew up having his body clapped around his lungs on a daily basis, to loosen up some of the gunk, he also grew up going to church with his dad, who was a pastor, and listening to hip-hop on the playground at school. He went to the Florissant/Ferguson School District, near St. Louis. 

"I'd go to my church world and it was a pipe organ, and then I'd go onto the playground and be handed a pair of headphones, with NWA or Easy E in them."

To Mortimer, there was no contradiction whatsoever between these two interests, even though he wasn't allowed to listen to rap music in his religious environment. He heard salvation in the stories of hip-hop artists.

"The rise from poverty to wealth, from sickness to health, from having nothing to having everything, to me is the essence of the gospel, of the good news, however you want to frame what that message is," he says. "I found that message totally in that music and those songs.

In both religion and music, that's the message that helped him endure and even transcend his condition. 

"The story of my life really is what do you do with such a severe diagnosis? What do you do when at 3 months, before I can even remember, I'm given this heavy chronic diagnosis? My whole life has been about trying to reverse that diagnosis, and trying to find joy, beauty, sparkle in the midst of pain and suffering."

Credit Paul Andrews / paulandrewsphotography.com
Dylan Mortimer in his studio.

Being a devout Christian makes him a bit of an anomaly in the contemporary art world. As a graduate student at the School of Visual Arts in New York City, his professors used to marvel that his religious references were sincere. "They thought it was performance art," Mortimer says.

When he received his degree from one of the most revered art schools in the country and promptly decided to come back to Kansas City to become the pastor of a small church with a mostly homeless congregation, he expected people to tell him that he was crazy, that he was throwing away his career. He was surprised by an outpouring of enthusiasm and support, mixed with fascination.

The balance between his role as clergy and his life as an artist, not to mention fatherhood and a severe illness to manage, makes for long days. But each area of his life informs the others.

And now that he's started exploring his Cystic Fibrosis in his art, he doesn't plan to stop.

"It's like the release of a huge breath of air that had been pent up for a lot of years," he says. "I'll continue to explore it. No inhibitions about it."

Portrait Sessions are intimate conversations with some of the most interesting people in Kansas City. Each conversational portrait is paired with photographic portraits by Paul Andrews.

People don't make cameos in news stories; the human story is the story, with characters affected by news events, not defined by them. As a columnist and podcaster, I want to acknowledge what it feels like to live through this time in Kansas City, one vantage point at a time. Together, these weekly vignettes form a collage of daily life in Kansas City as it changes in some ways, and stubbornly resists change in others. You can follow me on Twitter @GinaKCUR or email me at gina@kcur.org.
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