Will Wellman completed his undergraduate degree in horticulture. He did internships with the Audubon Society and the National Parks Service and then went on to grab a master’s in forestry. In many ways, he was poised to do his part in not just cataloging the natural world, but helping build a knowledge base that might one day help preserve the country’s natural resources for future generations.
“I did a two-year project at the end of that forestry degree; I submitted my thesis, graduated, and not even a month later I got sick,” Wellman told CL. His illness, which became a part of his life in 2008, is a rare kidney disease called focal segmental glomerulosclerosis. It affects kids and adults; symptoms include swollen body parts, water weight, foamy urine due to high protein levels in the urine and low energy from a lack of protein in your blood. Left untreated, it leads to kidney failure and death.
IF YOU GO
Tampa Pig Jig w/Jake Owen/Dr. Dog/Lanco/The Wild Feathers/Larry Fleet/Camille Trust
Sat. Oct. 19, 1 p.m. Sold-out.
Curtis Hixon Waterfront Park, Tampa.
After his diagnosis, Wellman started to ask different kinds of questions about the world around him.
“Why is this happening? Am I gonna die? What does it mean to die? — not the kind of questions you normally ask yourself when you’re 25,” Wellman said. The inquiries led him to theology and philosophy books. Someone at his church suggested he think about the seminary. So he got another degree from Princeton, this time in divinity.
“It's a broad degree,” Wellman explained. “You're taking history, language, ethics, theology, preaching, tons of different subjects.”
Along the way, Wellman discovered that his mother, Joyce, was a perfect match for a kidney transplant. So they did it, but his body rejected it. The kidney was out of his body within three weeks. These days, Wellman spends more than 20 hours a week undergoing dialysis. And while his sunny and engaging disposition makes him an easy person to talk to, Wellman isn’t afraid to talk about the dark questions that come back every now and again.
“Something I realized throughout this illness is that there has to be a balance between that natural inclination for my need to be doubtful and angry about this and faith,” he said. As a person of faith, people around Wellman say things like, “Oh, you just have to pray… you’re going to be fine,” but he knows that it’s not that simple. Faith, for Wellman, is something he has to cultivate.
“Over the last couple of years I’ve been really working on that,” Wellman said before offering another question: “What does it mean to cultivate hope and joy?”
Turns out part of the answer started presenting itself back in 2011 when Wellman’s friends started a backyard barbeque to raise funds for Nephcure Kidney International, a nonprofit that supports research and treatment for the benefit of patients with focal segmental glomerulosclerosis.
Over nearly a decade, Tampa Pig Jig has grown into a one-of-a-kind event where teams compete in a barbeque competition while bands play on a stage situated on the banks of the Hillsborough River in Curtis Hixon Waterfront Park (past acts have included indie and rock acts like Futurebirds, Brett Dennen, Deer Tick and Born Ruffians as well as some of country’s rising stars). It’s downtown Tampa’s ultimate tailgate.
In the last eight years, Tampa Pig Jig has raised $4 million for Nephcure Kidney International. The goal for the 2019 party — which sold out a week ago — is to raise $1 million. The monies will eventually lead to a cure, and in the meantime, the treatment outlook for those with FSGS has been on an upswing.
As Wellman’s wife, Bay area visual artist Taylor Thomas pointed out in a post declaring that 50% of sales from her paintings will benefit Nephcure, only three drugs were in the trial stage when he was diagnosed. Now, 25 drugs are in the FDA trial process.
“That's crazy for disease as small as this in that short of a time span,” Wellman said.
Before gates open each year, organizers hold a special event where patients and their families get to reconnect and track each others’ battles with the disease and transplant news. Unlike Wellman, who’s living with the disease alongside a network of family and friends, many of the patients who come to Pig Jig are fighting alone or in isolation within a small family 364 days out of the year.
“On that 365th day, they come in and they can see it,” Wellman said. “It’s like, ‘Tampa’s behind you, and we’re putting our money where our mouth is — come, be here, and have a good time.’”
And while big questions about death and why disease happens will always be there, one of Wellman’s questions — “What does it mean to cultivate hope and joy?” — gets answered each year.
Wellman, an introvert, always gets anxious on the day of the event, but all of it gets washed away when he’s on-site.
“It’s like I’m seeing it for the first time,” Wellman said. “I'm literally blown away, chin down, mouth open. Like, ‘Holy shit, we did it again.’ It's always super emotional.”