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Cystic fibrosis patient writes book about his disease

Patient Stories

June 20, 2019

Paul Merritt isn’t just coping with his disease; he’s writing about it in hopes of helping others diagnosed with cystic fibrosis.

There are names that Paul Merritt likes to point out when he thinks about people who have overcome obstacles: Major League great Jackie Robinson; civil rights leader Martin Luther King Jr., and theoretical physicist Stephen Hawking.

The names are symbolic of Merritt’s outlook on life.

“Each new generation, wealthy and blue-collar, build a life that can endow their peers to overwhelming encouragement,” writes Merritt in the preface to his book, “The Best of Disease and Simple Ways to Improve.”

A 2005 graduate of Evansville’s Bosse High School, Merritt has never known a life without cystic fibrosis (CF).

“I have to always keep it at the forefront of anything I do in life. It’s something I have to pay attention to. It’s always on my mind, but it’s never prevented me from doing things. I like to say ‘I never let my obstacles become my boundaries.’ Even though CF has been an obstacle, it has never set my boundaries,” said Merritt, 32.

The younger son of Daniel and Penelope Merritt, he grew up with a dad who worked on cars. By the time he was in high school he became interested in dirt track racing and was on the open wheel circuit at the age of 16. After high school he worked in construction for eight years until his health started to decline.

Since 2015, he thinks he’s been in the hospital about a dozen times and is preparing to be listed for a lung transplant. Under the care of IU Health pulmonologist Dr. Cynthia Brown, Merritt recently spent a few days inpatient where he shared his experiences living with CF that resulted in his first book. The book is available through Amazon.

“I went to college to study bio technology. I wanted to get into research. I completed two years when I got sick so I decided to write my own book,” said Merritt, who married Ashley Merritt three years ago.

Raised as a Southern Baptist, he wanted to incorporate scripture into his healing. His 64-page book published by Christian Faith includes chapters about disease types, keeping hope alive, and medical innovation.

“The initial thought of disease is often defined as weakness, not strength. Why is the strength of someone associated with only physical strength?” he writes. He talks about the emotional strength it took growing up and trying to be a typical American boy – riding his bike around the neighborhood and playing sports, all the while hiding the disease he battled daily.

Merritt estimates it took him about a year to write his book and he’s already planning his second one. He wants to share the feats he’s accomplished even while living with CF – the t-shirt he was awarded for running 10 miles, his years pitching Little League baseball and a leadership award he was presented for his sportsmanship.

“So often we deny sickness instead of embracing it,” said Merritt. “I want to say ‘chronically ill is far from being weak.’ We are some of the most inspiring and strong-willed people you will meet.”

-- By T.J. Banes, Journalist, IU Health.
Reach Banes via email tfender1@iuhealth.org.

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