Lisa Bentley to Present Award at Global Genes Gala, Discusses Life with Cystic Fibrosis


Lisa Bentley will be a presenter at the Global Genes RARE Tribute to Champions of Hope later this month.

Like many college-aged women, Lisa Bentley felt that her body was invincible. At 20-years-old she had always been fit. She started running in high school and kept it up throughout her twenties.

“Running was my social fun outlet,” says Bentley. “It kept me healthy and helped me to develop my confidence.”

It was a boost she would need to get through her difficult diagnosis of Cystic Fibrosis. With CF, patients struggle with breathing due to a build up of sticky mucous. Being active helped her lungs to keep moving and to break up the mucous. Running had helped to keep her alive.

“Being a CF athlete feels like I’m an athlete more than a CF patient,” said Bentley. “When I’m running or swimming or biking, I feel invincible even on my worst breathing or coughing days. It is my time where I get to feel normal.”

But it wasn’t always so easy. In 2009 her lungs were in continual decline. She was still racing, still identifying as an athlete—but she was aware that her performance was slipping.

“I was slower than usual and frustrated. My lung capacity was dropping, but I had always risen above such challenges before.”

She kept on racing. She would need antibiotics and multiple other therapies to try and restore her diminished lung function that had fallen from 100% to 56%.

It was no longer something she could just “push through.”

“I did have to take a break from racing to get healthy,” admits Bentley. “I spent five days in the hospital and was on IV antibiotics for five weeks.”

Despite her hospitalization, she always pushed herself to take a mini workout each day. She would jog up and down the stairs of the hospital, or take a lap around her floor. When she got home she set up her IV and then jumped on her indoor exercise bike.

The sport kept her happy, she said, sane. Even though her bacterial infection cleared up, her lung function was still low. In response, she started from the beginning, running intervals and gradually getting back to her physical peak.

She wants to offer hope to other athletes with chronic illnesses.

“There were so many times that I raced while sick and on antibiotics – Pan Am Games 1995 (7th), IRONMAN World Championships 2004 (4th – so sick), Ironman 70.3 Philippines 2009 (1st) – I refused to let CF dictate my life and my goals. Sick or healthy, my mantra was that I would do the best that I could do with my deck of cards.”

“If that deck included a chest infection, then I would do my best in spite of an infection. Anyone can do good when the going is good but a true champion does good when the going gets tough.”

Beyond the personal satisfaction her competitions achieve for her, she’s been moved by others with the disease who look to her strength as something to emulate.

After the IRONMAN Canada, when she had crossed that finish line, she was quite prepared to step away from sport for a bit to give her body a chance to repair itself. But then, out of the blue, a mother of a boy with Cystic Fibrosis with whom she had once been in contact with asked her if she was going to be racing at the IRONMAN World Championships in Hawaii.

She asked because her son had made a wish with the Children’s Wish Fund to cross the finish line with her at the IRONMAN World Championships.

“His mother said that my racing and my story brought their family hope – hope that their young son, Carter, would be just as healthy as I was when he grows up!”

Needless to say, she raced the IRONMAN World Championships and crossed the finish line hand-in-hand with Carter.

After the race he turned to her and said, “When I race here, when I am old enough, you can cross the finish line with me!”

“Now that,” she said, ”Is a career highlight!”

 

Be on the lookout for an even more in-depth interview with Lisa during our weekly RARECast session with Daniel Levine.

Filed Under: People & Organizations, Rare Community

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