Living With CF Does Not Make Me a Hero

Don't put me on a pedestal just because I'm resilient in the face of cystic fibrosis

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by William Ryan |

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In a 1993 commercial for Nike, NBA star and 1992 Olympics hero Charles Barkley declared, “I am not a role model.”

The commercial was controversial and garnered backlash, but Barkley was right. He wasn’t a role model. Although a lot of the country, myself included, adore Barkley’s ability to say what’s on his mind — even if he’s wrong or we disagree — society still views athletes, entertainers, and others like them as role models.

I myself have grown up idolizing famous people, including former baseball player Derek Jeter, former President Barack Obama, and comedian John Mulaney. As I’ve gotten older, I’ve realized that putting them on a pedestal as an idol or hero is unfair to both myself and people like them. It heightens their strengths to the point where if a flaw breaks through, it’s hurtful.

Jeter was my childhood hero who could do no wrong, for example, but in retirement he has, at times, come off as cold and standoffish, whereas his Yankees teammate Alex Rodriguez, also retired, has looked human and has owned up to his past mistakes.

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It’s not that I don’t like being called a hero, but it makes me uncomfortable. I know people don’t mean any ill will when they say it. In fact, I know that they’re praising my resilience in life despite having cystic fibrosis. However, I’m uncomfortable with it because, to paraphrase Barkley, I am not a hero.

I have a lot of flaws that no one would want. I’m standoffish to a lot of people when they meet me. I’ve lied over things large and small, which has gotten me in hot water with my loved ones. There are times when it’s hard for me to express emotion, and I come off as cold. Yes, I have positive attributes, too, but that’s not my point.

I’m not a hero because I haven’t always taken the best care of myself when I should’ve. Because of this, I’ve struggled with my health more frequently today, compared with when I was younger, and I have no one else to blame. I didn’t take care of myself because I wanted to feel like a normal person for once in my life. I didn’t want to take around 40 pills a day or do lung treatments, and because of my neglect, I struggled even more so.

I’m a sucker for documentaries, and I recently finished “McEnroe,about tennis great John McEnroe, and it hit close to home. Despite being one of the best male tennis players, McEnroe is most famous for the tantrums he threw on the tennis court at everyone in sight. I turn 30 in a few weeks, so I was intrigued by part of the documentary where McEnroe talks about his late 20s and early 30s, when he took a sabbatical from tennis to raise a family with his first wife. He struggled with drug use and finding an identity outside tennis, where, once he returned in his 30s, he was no longer as good as he once was. 

I may have never done cocaine or drank as McEnroe did, but I know what it’s like to struggle with your identity and where you are in life. Ten years ago, I didn’t expect to be married. I didn’t expect to live as long as I have. I didn’t push myself to learn new things, because if I wasn’t going to be here, what’s the point?

I knew of people with cystic fibrosis who were smarter than I was, friendlier than I was, and doing well in life, and they still died incredibly young. I’m trying to make up now for lost time, and some days go better than others.

I am not a hero. Just a man trying to understand the nonsense of this life.


Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.

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