HARTSELLE — Wearing a red-hooded sweatshirt with the words “Keepers of the faith” sprawled across his back and arms, Rocky Gillespie trod the black pavement slowly Friday morning, taking each step with patience and gratitude.
The 38-year-old Hartselle resident, with a chocolate doughnut and soft drink in hand, apologized for being a few minutes late for the interview and acknowledged an important milestone he had reached that morning.
“This is one of the first times I’ve showered and got ready by myself in almost a year,” he said.
A day free of medical complications, dialysis treatments and debilitating pain is precious to Gillespie, who has endured a lifelong battle against cystic fibrosis.
After each birthday Gillespie celebrated as a child, doctors cautiously increased his life expectancy, never believing he would survive past age 7.
Gillespie, who was forced to leave school for two weeks at a time because of his condition, found refuge at Children’s Hospital of Birmingham, where he formed friendships with other young people struggling with cystic fibrosis.
Although Gillespie has outlived all of his friends at the hospital, he continues his fight against the chronic disease, which impacts about 30,000 children and adults in the U.S. each year, according to the Cystic Fibrosis Foundation.
The foundation reports the average life expectancy for a cystic fibrosis patient is late 30s. Although cystic fibrosis is caused by a defective gene, wife Tara Gillespie said her husband is the first in his family to be diagnosed with the disease.
“Every day when I wake up, I wonder what’s going to happen — it’s always crazy,” Gillespie said. “What used to be unshakable is now very shaky ground. I don’t know what’s going to happen from the time I wake up to the time I go to bed.”
In 2006, with his pulmonary functions declining, a doctor told Gillespie that he should be on a lung transplant list because he had only six to eight months to live.
Gillespie, whose name was added to the list on Valentine’s Day the following year, kept his bags packed, waiting for a call from the UAB transplant team. The double-lung transplant came May 29.
Doctors told Gillespie he could live an additional two weeks or two years with the transplant. Gillespie said there was a “50/50 chance of getting through the operation. They guaranteed me nothing.”
Six years later, Tara said Gillespie’s survival has marveled the medical world.
“He teaches me that no matter what is thrown at you, you just have to dodge it and keep going,” said Tara, who will celebrate 10 years of marriage with Gillespie in June. “He inspires me every single day.”
Since the double-lung transplant in 2007, Gillespie has been diagnosed with kidney failure, forcing him to visit a dialysis clinic in Madison for several hours at a time three days a week.
In January, he underwent surgery at UAB Hospital after developing an infection in his back. Gillespie recently learned he has calciphylaxis, which causes calcium buildup and stops blood from flowing to his fingertips.
Gillespie, who was last employed at a local tattoo shop and for FYE in Decatur Mall, no longer works and receives disability payments because of his condition. Tara helps support the family as a closing secretary for the Brent King Law Firm in Decatur.
“Rocky has insurance, but we still have to pay 10 percent, and most bills are at least $200,000. So we pay what we can,” Tara said.
Earlier this month, dozens of friends and loved ones packed Java Jaay Cafe on Sixth Avenue Southeast, surprising Gillespie, Tara and his 16-year-old stepson, Blaine.
Memphis resident Nathan Reed worked with Java Jaay owners Bunk and Khristen Price to design and print a T-shirt with a “Team Rocky” logo on the front and a sacred lungs design — a play on the religious Sacred Heart symbol — on the back.
“We hugged and I started going through the Scripture with him,” Reed said. “I told him we saw the flag, we saw the rallying point, and we’re here to let you know you have an army behind you. Then we revealed the shirts.”
About $1,000 in proceeds from the T-shirts went directly to Gillespie and his family, while remaining funds will be donated to the Cystic Fibrosis Foundation in Gillespie’s name.
Tara said she used the money to purchase an adjustable bed for her husband, who has been forced to sleep in the family’s recliner because of back pain.
Choking back tears, Tara said the experience among friends at the coffee house was a rare moment of “tangible love.”
“So many times when Rocky and I have been to Birmingham, we feel so alone,” she said. “That was total confirmation that we are never alone.”
Gillespie said he prays to God for solace, but it is hard-core music that has inspired him to “push through” during tough times.
“I do pray, but as a physical, material, tangible thing, I reach out to this music because this music is what gives me hope,” he said. “It riles me up to a point to where I’m going to get up.”
Gillespie said he doesn’t know what his future holds, but he stands by his motto of “Never dying, always living,” coined from one of his favorite songs “Just Like Roaches” by Clenched Fist. The song lyrics read, “When death comes calling, we always resist / Dying never, living forever / Exist to survive, survive to exist / Forever breathing, there is no ending / Never die, always live.”
“I’m about to be 40, and I’m slowing down enough now to where I don’t really go out as much as I did, but people still send me texts every day all day telling me ‘Your story inspires me,’ ” he said. “It makes me feel good that if I have to go through what I’m going through that I can at least help somebody else in their walk.”
Lucy Berry can be reached at 256-340-2442 or firstname.lastname@example.org.
Want to help?
To donate to the Cystic Fibrosis Foundation in Rocky Gillespie’s name, visit www.cff.org/great_strides/NDALroaches.
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