Your life is more than your disease

Jerry Cahill can still remember the shock on his employer’s face. After more than a decade with the award-winning American menswear company JA Apparel, Cahill was offered a big promotion to senior vice president of sales. He declined. They tried to change his mind, offering him stock options and other perks, but Cahill continued to insist he couldn’t do it.

When his employer wouldn’t back down, Cahill finally told them why he couldn’t accept their generous offer: He needed to take time off to focus on his upcoming double-lung transplant.

"They just looked at me like I was crazy," Cahill says with a laugh. "They were like, 'What are you even talking about? You’re not sick.' I guess I was better at keeping a secret than I realized." Cahill insists that he wasn’t trying to lead a double-life; he just didn’t think his cystic fibrosis was important enough to tell anybody. "My life isn’t about the disease," he says. "My life is about being successful and athletic and alive. The CF, that’s just something I have to deal with."

He frequently traveled for his job, often with his boss, and brought along a suitcase full of IV antibiotics. But he never mentioned it to any of his co-workers. "At one point, my doctors told me, 'You’re going to have to leave on disability, and you definitely can’t travel anymore,'" Cahill says. "I just didn’t accept that. I told them, 'No, I’m sorry, this is what I do. I can’t just stop traveling. This is my job!'"

To say that Jerry Cahill is lucky to be alive would be the understatement of the century at this point. He’s been lucky to be alive since 1967, when he was just 11 and first diagnosed with cystic fibrosis, a genetic disease that causes mucus to build up in the body’s organs, predominantly in the lungs. The doctors told his parents he’d be lucky to see his 18th birthday. Even today, the average life expectancy is just 37 years. Cahill is 61, or as he prefers to say, "61 going on 15."

He attributes his survival—or at least the inspiration for what led to his survival—to his family. He was the youngest of four brothers in Brooklyn, and after his diagnosis, his parents Mary and Edward weren’t about to let their son just fade away.

Activity is the best medicine

"My dad said, 'If Jerry isn’t going to be around very long, I want him to spend as much time with his brothers as he can,'" Cahill says. Since his brothers were all athletic, that meant not just watching them play but getting drafted onto their teams despite being far too young and inexperienced, and even with his declining health.

"I was terrible," he says. "I’d sit on the sidelines during my brother’s’ baseball games, and if they were winning, my dad would nod to the coach and they’d put me out on the field. There was no way I should have been there." During one game, he was hit in the eye with a fly ball that sent him to the ER. "I told my dad, 'I don’t want to play this anymore,' and he said, 'Don’t worry, we’ll finish out the season and find something else for you.'" Next was football, which proved even more hazardous. "My brother would score a touchdown and my dad said, 'Get out there with him!' And I was like, 'Are you nuts?'"

But Cahill kept trying to keep up, eventually following his brothers into basketball, which he liked, "if only because I wasn’t getting hit in the eye and tackled and crushed." He also noticed that he was feeling better, and he could breathe easier even without the numerous medications his doctors had prescribed.

"It was the best thing for me, because I was coughing and clearing up my lungs," he says. "But that wasn’t a known therapy back then. They were still waiting for me to die, and I wasn’t accommodating them."

Cahill led an active lifestyle even when he wasn’t playing sports. He shared a room with his brothers, and they slept on bunk beds that were often turned into forts, using blankets and sheets and sometimes Cahill’s mist tent. "I slept in a mist tent, which was like a big old-fashioned oxygen tank," he says. "Every weekend we’d get up early and make forts and play cowboys and Indians, and the mist tent, which was very expensive, was a major part of that fort."

The brothers would tackle each other, and the hose would invariably get disconnected, and there’d be mist blowing all over the room. "Our parents would walk in and see this flurry of bodies and mist and carnage," Cahill remembers. "They’d shout at us, 'What are you doing to his machine?!'"

Thriving on borrowed time

Cahill continued to prosper throughout his teens, graduating from high school and enrolling in the University of Connecticut, where he discovered his passion for pole-vaulting. "I had a very normal life," he says. "I went to classes, I had a job and a social life, I was running and pole-vaulting. Nothing was slowing me down."

This continued to confuse and in some cases exasperate his doctors. "They wouldn’t say it out loud, but I could tell they were annoyed that they kept getting it wrong," he says. "They were happy I was alive, of course. But I kept beating their life expectancy predictions for someone with cystic fibrosis. I outlived a couple of my doctors."

It wasn’t always smooth sailing for him. "I’m a type-A personality," Cahill says. "I kept pushing myself, and it started to take its toll." At 21, for the first time in his life, Cahill ended up in the hospital, on a two-week treatment of antibiotics that he calls a "tune-up." Staying in bed was not easy for Cahill, and it only got more uncomfortable when strangers would randomly peek into his room, waving at him and smiling.

"I asked my doctor about it, and he said, 'Oh Jerry, those are parents of other patients with CF. They’ve all heard about you and wanted to see you in person,'" Cahill says. "I was like, 'What’s so interesting about me?' My doctor said, 'Well, nobody has ever seen somebody with CF as old as you. It’s kind of inspiring to them.' I thought that was crazy. I was only 21! But in cystic fibrosis years, I was like a 90 year old. I was proof that CF wasn’t a death sentence."

Cahill’s core essentials: exercise and nutrition

Cahill doesn’t feel like he’s made it this far just because of good genes or luck. It was the exercise that saved him, and continues to save him. "I approach my life like an athlete," he says. "That goes beyond just staying in shape. It’s the whole package. An Olympic athlete doesn’t become a world-class sprinter just by doing sprints every day. It’s a whole program; he does weightlifting, distance running, a lot of stretching, and he pays attention to his nutrition. It’s all the pieces that make up the whole."

He discovered Kate Farms after looking for nutritional options better suited for his condition. "So many people I know with CF, they just eat junk, because all they’re thinking is, 'Get the calories, the calories, the calories,'" Cahill says. "So they sit at home and eat a pint of ice cream every night."

But since his lung transplant, Cahill now has diabetes and has to be extra-careful about his diet. "I need to keep my weight in check, but with CF, I can’t afford to lose a lot of weight," he says. "My doctors keep telling me, 'You need to make sure you’re getting calories, but the good ones.' I need nutrition without a lot of carbs and sugars, and Kate Farms has really made a difference for me."

Speaking of that lung transplant, Cahill delayed it for almost ten years. "I wasn’t scared. I just didn’t think I needed it. The more I exercised and expanded my lungs, the better I felt. I was jogging with an oxygen tank up until the operation."

He finally had the double lung transplant in 2012, and today feels better than ever. Today, he keeps busy coaching pole-vaulting at three high schools in New York, and as an ambassador with the Boomer Esiason Foundation, an organization devoted to finding a cure for cystic fibrosis.

"I started volunteering at the foundation back in 2004, as something to do while I was waiting for a transplant," Cahill says. "But it didn’t take long before I was throwing myself into it completely." Using the management and sales skills he learned in the menswear industry, he spearheaded outreach programs for the foundation, including several scholarships and grants that help patients with medical expenses and transplants.

Cahill is especially proud of Team Boomer, the athletic arm of the foundation that encourages and inspires CF patients to incorporate exercise into their everyday lives. "All of these programs have brought in millions of dollars to the foundation," Cahill says. "Hopefully, we’ve changed some lives in the process."

When you cannot fail, you won’t

Cahill is like a one-man advocacy machine for CF, inspiring kids and adults alike to not let their disease define them. Along with his work for the Boomer Esiason Foundation, he hosts a podcast, published a children’s book, starred in a documentary called Up For Air (about his life pre- and post-transplant), and even created a CF super hero named Big Air Jerry.

The books and podcasts and videos and movies are all connected by the same message: You cannot fail. Three simple words, but it’s what Cahill credits—along with the exercise and proper diet—with his longevity.

"My parents were the first ones to instill that idea in me," he says. "Even before I was diagnosed, they would tell me, 'You cannot fail.' That’s all my brothers and I heard every day. 'You cannot fail.' Even when the doctors told me I was going to die, and I needed nebulizers and mist tents just to breathe, I never had a sense of impending doom. Because my parents were there, saying, 'You cannot fail.'"

"If you get told that enough times," he continues, "you really start to believe it."