So spoke Jake Bowers, all of eight years old, of cystic fibrosis
, a genetic disease which affects one’s lungs and digestive system and with which he had been diagnosed just six weeks into his life.
His mother Kathy, a registered nurse, fielded the question. Although she had been proactive with his treatment, managed his home care, knew well the downside, and brought positive energy to the arduous and uncertain journey, she was stunned by her young son’s question about his mortality.
Quickly, she regained her composure.
“Cystic fibrosis can cause people to lose their life,” she told Jake, a 2003 Collegiate graduate, on that day 27 years ago. “We’re going to work hard to make sure that doesn’t happen to you.”
Resolute words, to be sure. Powerful words. Hope-against-hope words. Words to live by, though. Definitely words to live by.
“When Jake was diagnosed,” Kathy said, “I had just finished my last class in nursing school. When the doctor called and gave me the diagnosis, I went and grabbed my (pediatrics) book. It said the mean age of survival was 12. I totally lost it. I couldn’t grasp it. I said, That can’t happen to my son!”
The odyssey was just beginning.
In his youth, Jake pulled as many as four multi-week hospital stints each year. Tune-ups, he called them. They involved a regimen of antibiotics administered by IV’s, steroids, and manual chest pulmonary hygiene therapy, the latter of which, he describes as “a fancy term for someone pounding on your chest very hard for an hour at a time four times a day trying to knock the mucus loose so I could cough it up.”
Despite the challenges, he’s overcome and prospered, all with Kathy’s care and encouragement.
“From six weeks forward,” Jake said, “she devoted her life to making sure I had the best possible chance to survive. Not only survive but live as close to a normal life as possible. It wasn’t always easy when I was getting into my teen years and wanted to be rebellious. She was very good at keeping me on task. Without her, I probably would have let myself run ragged. First and foremost, I owe my life to her.”
Jake’s Eureka moment came with that long-ago conversation.
“At that point,” Jake recalls, “the life expectancy was about 30. At eight years old, the reality was beginning to set in. That’s heavy stuff for a kid. She didn’t give me a canned, make-me-feel-better response. She said, You can accomplish anything, and I’m going to help you the whole way. Every day is going to be a struggle and a fight, but you can do it. You will do it.
“Hearing that, I knew that this was something I’d have to deal with. I wouldn’t let it affect me anymore than it absolutely, bare-minimum had to. You can allow it to take you over, or you can fight it and beat it.”
Jake’s story goes well beyond the words.
At Collegiate, he ran track and tested his mettle against imposing Prep League sprint competition in the 100, 200, 400, 4x100, and 4x400.
His high school eligibility exhausted, he walked on at Virginia Commonwealth University. Just happy to make a Division I roster, he competed mainly on relays as a freshman, then availed himself of the opportunity to try the decathlon his sophomore year.
Undaunted, eager, athletic, and definitely stronger – through weight training he now checked in at 6-0, 180 – he embraced the chance to challenge himself both as an athlete and a CF patient.
“At first,” he said, “I’d just enter random events to get used to competing under pressure, not just practicing. I was good at throwing for my size, but obviously I wasn’t going to compete with 300-pound body builders. I’d never touched the pole vault before in my life, so that was one of the things I had to learn.”
He learned well the vault plus an array of track and field events that fell outside his comfort zone as a sprinter. Case in point, in the 2005 Colonial Athletic Association championship meet at George Mason University, he placed sixth in the decathlon, earning three team points and helping the Rams finish second in a very competitive league.
Think about it. A guy with reduced lung capacity, competing in 10 grueling events, only two of which he had run in high school, in a span of two days. And the finale was the 1500 meters, quite a stretch for a CF survivor. The 3,776 points he amassed were a personal best. His performance was the pinnacle of his athletic career.
Has he ever wondered what he could have achieved with healthy lungs? Of course, but the wonder is short-lived. You see, through his trials, he’s never dwelled on what might have been. Philosophical, uncomplaining, and humble to a fault, he simply makes the most of his ability and resources.
“You can’t get caught up in what-ifs,” he said. “I’m just proud of what I’ve accomplished.”
A collapsed lung followed by complications and subsequent hospitalization effectively ended Jake’s track career, but the setback hardly affected his spirit.
“Jake was in post-op,” recalled Kathy Bowers, “and the CF doctor came in and talked to us about what could happen down the road and how lung transplants work.
“When the doctor left, I said, ‘Are you worried about what we could be dealing with?’ A guy who just had surgery on his lung said, ‘Nope. Worrying’s like a rocking chair. It’s something to do, but it won’t get you anywhere.’
“That’s been his whole outlook. People always say to me, ‘You’d never know there’s anything wrong with him.’ I say, ‘I didn’t raise him to think, I’m sick, I’m not going to make it, I’m an invalid, I can’t achieve things. When he did the decathlon, I was just blown away. At that point, he’d lost about a third of his lung function. To keep up with those other guys that were 100 percent was amazing. He’s my hero.”
Jake earned a BS in psychology from VCU in 2008 and set his sights on grad school, but one thing led to another, and he readjusted his plans.
In 2009, he entered the nursing program at John Tyler Community College, finished his coursework in 2011, and accepted a position in the medical surgical trauma intensive care unit at Chippenham Hospital. He’s been there ever since. Now, he’s a clinical team leader on the night shift in charge of the 32-bed ICU.
“The reason Jake is such a good nurse is because he’s been a patient his whole life,” said Kathy, an endoscopy nurse at Chippenham. “He understands what patients need: understanding, caring, and compassion.”
So how has Jake remained positive, risen above, and refused to cower, even in the toughest times?
One answer, of course, is the indomitable spirit Kathy possessed from the beginning and instilled in her son. Jake once asked his mom why God chose him to have CF. “Because you can handle it,” was her response
“I’m very spiritual, same with my mother,” Jake said. “She said things happen for a reason. It’s a test that will make you grow. Everybody gets dealt a struggle whether it’s CF or something else. Nobody has it on easy street. This is just my battle.”
Another answer is that fitness has always been part of his culture.
“After VCU,” he said, “I’ve always had a gym membership and was in there two to three days a week, minimum, weight lifting and running. I’ve run the gamut of recreational sports. I’ve always been into golf. I was in a pretty intense, highly competitive flag football league, three seasons a year, for probably eight years. I owe my life to being active.”
Yet another answer is great care at VCU Health, constant vigilance, compliance, motivation, and, since November, a new FDA-approved medication, Trikafta
, which is being hailed as a major breakthrough for CF patients.
“It’s not eradicating the disease,” Jake said, “but it’s minimizing its effects on your lungs. It’s halted progression of the disease of most people that are on it. It’s what I’ve been waiting for. It’s certainly living up to its hype so far. Since November, I haven’t had any illnesses other than the flu (in late spring) that would have affected any other healthy person. Without the medication, I probably would have been in the hospital for a month.
“Over the years, there’re been several medications that were supposedly going to do what this one’s actually done. This drug has given me a new lease on life.”
So now, apprehension about the flu, COVID-19, and reduced lung function which comes with age is mitigated by two pills in the morning and one at night.
“People my age with CF are approaching having to get a lung transplant which is always a scary endeavor,” he said. “I’d like to avoid that. If I can cruise at 60 to 70 percent lung function, I could live a normal life expectancy, and that’s nice.”
Unassuming, understated, and without ego, Jake has always been content to keep a low profile, at least publicly, regarding his health.
After Kevin McGeorge
, a lifelong friend and Collegiate classmate who is involved with the Cystic Fibrosis Foundation
, reached out recently and encouraged him to share his compelling story, he’s reconsidered.
Consequently, a narrative of his journey is the highlight of Kevin’s effort as he (and others) gear up for the Brewers Ball, the organization’s gala planned for spring 2021 at the Virginia War Memorial.
Jake’s message for people with CF and other life-altering health issues is one of resilience, perseverance, hope, and inspiration.
“Nothing is final,” he said. “I’ve been able to live a mostly normal life. If you’re dealing with something, be pro-active, be active, don’t be the victim, because the second you admit defeat, it will take you over and it will beat you, but you do have a choice.”
Have there been blessings in this medical odyssey?
“For sure,” Jake said. “I don’t know what kind of person I’d be without it. There’s definitely a silver lining as far as my attitude and enjoyment of life.
“It’s given me an appreciation for life in general. I’ve seen the disease make people super-negative. For me, it’s made me more positive because I want to absorb all the good things. It’s made me non-complacent with my time and my life. Even if it kills you, if you’ve lived a life you can be proud of and happy about, then nothing has beaten you.”