Artist and pastor Dylan Mortimer had just moved with his family from Kansas City to Brooklyn, New York, for an adventure the last time he spoke to KCUR. Mortimer, who was born with cystic fibrosis, said he had never had so much freedom of movement.
“I feel the best I’ve felt in my life,” he said in an August conversation about his installation at the Open Spaces arts festival. He was happy to be travelling, riding bikes and climbing mountains with his sons.
What he didn’t mention then was that his body had begun rejecting the lungs he’d received in a transplant in January of 2017.
Since then, he’s tried to hold onto the freedom and continue to enjoy his relatively good health, no matter how fleeting it may be, Mortimer told Central Standard host Gina Kaufmann on Thursday.
“I definitely have that spirit and that attitude that I’m going to live life to the fullest with every breath I have and that’s the choice that I choose to make,” he said.
The artist, best known for his lung-related art in a variety of media, had been imagining and creating healthy lungs and bronchial trees, like his Open Spaces piece, “Tree, Broken Tree,” at one entrance to Swope Park.
He painted a dead tree pink and covered it in glitter.
“It was a way to transform a really ugly disease into something beautiful,” he said over the summer. “That’s what all the glitter is about: a really shiny material trying to transform a disease I was born with, with phlegm and blood, and I was trying to beautify and initially ugly diagnosis.”
The installation functioned as a simple metaphor for transforming what was dying into an apparently vibrant, healthy organism. So he was surprised when his metaphor fell away and the art became a reality as leafy green limbs began sprouting from the now-pink tree.
“Little did I know that that process would seal the tree and cause it to actually revive and regrow branches,” Mortimer told Kaufmann. “I wish I could say I planned that exactly, but I had not. It kind of happened and, you know, enlivened the metaphor all the more.”
According to the United Network for Organ Sharing (UNOS), lung transplants make up 5 percent of all transplant types. Cystic fibrosis patients over the age of 30, like Mortimer, are one of the main groups of recipients. In 2017, 249 people with cystic received lung transplants.
Since Mortimer’s body has begun to reject his transplant, he’s now under consideration for a second.
The University of Kansas Medical Center purchased two pieces of his art. He said he’s enjoyed seeing fellow patients and transplant recipients engage with the work, even if that’s only online. Cystic Fibrosis patients are warned to stay six feet apart from each other — just out of coughing distance — in order to avoid airborne viruses and diseases, so online forums have sewn the community together in a way that wasn’t possible even a decade ago.
“The last year and a half I’ve felt better than any time in my life. So, that’s been a joy and a blessing,” he told Kaufmann. “It’s been an effort to find peace, find hope, in the middle of a storm in which breathing is a struggle again.”
Even though he said he’s grieving the situation and feels some anxiety, his profound gratitude for living this long keeps him going. When he was born in 1979, he said, doctors told his parents they didn’t expect him to live past his late teens.
“In 1990, I was 10 years old when they discovered the gene, and since then there’s been a lot of development in drugs and research for CF. It’s just getting better and better,” he said.
As he gets older, life expectancy goes up with him.
“I’m like 85 in CF years now, or 100 something.”
Follow KCUR contributor Anne Kniggendorf on Twitter, @annekniggendorf.
