Cystic Fibrosis Didn’t Shatter Me — It Forged Bravery
Moonlight twinkled off Eagle Scouts’ accomplishment pins (earned for demonstrations of helpfulness, generosity, and loyalty) as they wound rope around my friend and me — tying it off with a knot perfect enough to merit yet another accomplishment pin. Sweaty pits and unbrushed teeth polluted lake air that was once pine fresh. It was Boy Scout summer camp, and the Eagles were intoxicated by power over the pack’s resident dorks.
My friend and I were frail 6th-grade nerds who preferred shooting imaginary stormtroopers with toy blasters to shooting deer with .30s. The noble Eagles detested that. “Pussies!” they barked while cramming our eyelids open and forcing us to stare at laminated photos of the (crudely) aforementioned organ — featuring vicious-looking STDs.
They later laughed that it was “just” a hazing into the Boy Scout world. It felt more like a hazing into the world of toxic masculinity. They pushed all my buttons, and I malfunctioned. The next day, I stood at the bottom of the camp’s rock climbing wall and couldn’t find the bravery to reach for the first handhold. The Eagle voices screamed through my mind: “Pussy!” I later lied to my dad that I climbed the wall and did a darn good job of it. I couldn’t bear him thinking I lacked bravery. Side note: My dad is perfect and wouldn’t think that.
I’d never lived up to the classic stereotypes of “manliness” or bravery with my twig-thin frame, avoidance of heavy-breathing sports, tear-filled panic attacks, and avoidance of party drinking — alcohol doesn’t mix with medications. And I’d only been in one scrap (you should see the other guy … he’s fine).
I decided to define my manliness by success rather than boyish bravery. I prided myself on what I had in college: a couple journalism jobs, a six-year relationship, living alone with the ability to handle medical matters by myself. There were days I’d get back from a long day of interviews and writer management, negotiate things with my doctors over the phone, then buy dinner for my girlfriend — feel like a provider — and think, “Ah, I’m a man.” I know, that’s weird.
CF demolished those prides shortly after graduation. Struck deaf and on supplemental oxygen, I couldn’t do journalism, I had to relearn how to walk like a baby, I was back to living with my parents, and my dad even had to wipe my butt for me a couple times because I was so exhausted. My girlfriend became my caretaker, and I had to endure the humiliation of having her carry all my stuff for me, open doors, order my food, and take phone calls for me.
It’s not so much that I was subscribing to masculine ideals, embarrassed that a woman was doing all this for me (gasp). Rather, it was that I felt like a child. I’d clung to what little manliness I could, and it was violently ripped away. Once, I had a panic attack in front of my dad, sobbing in fear that I’d be rejected for lung transplantation. Piercing, in the forefront of my conscience: Dad could have had a manly son, and he has this — a coward. I loathed myself.
But I did get that transplant, then cochlear implants to restore my hearing. Now I have multiple jobs, I breathe and hear near perfectly, I wipe my own butt. And I’m pushing “bravery boundaries” lately. I really do rock climb now (not lying, I swear), I’m traveling independently plenty, and I’m planning public speaking engagements.
It wasn’t that doctors did some “Wizard of Oz” magic and transplanted me with the courage of a lion. No, I’ve simply realized I’ve endured deafness, survived CF. How could I not feel tough? But even before my transplant and implants, I was always a brave man. I just viewed myself through the lens of stereotypical masculinity, rather than through the lens of what I’d accomplished in spite of my chronic illness and disability. I’ve done good.
I realize that my body is not frail. It’s been brutalized, yet still I climb — literally and figuratively. I’ve been cut, burned, and bruised more than Rambo ever was. And my mind is titanium. While childhood friends mourned broken toys, I was coping with knowledge of early death. I have thrived despite trauma, anxiety and panic disorders, and depression. I had my lungs removed, I defeated opioid dependency, I kicked through ICU psychosis, I survived the simultaneous onslaught of four antibiotic-resistant bacteria. And I did it all while completely deaf.
I’m bragging. But remembering how I earned my scars, with bravery, is empowering, and empowerment is what will get me through my next battles. I’ve learned that courage is essential when locked in a struggle in which my own body is literally trying to kill itself, ignoring my brain’s pleas to stop. What’s scarier than that?
I’m a wimpy-looking nerd. But I cast a titanic shadow.
I’m typing all this on my phone as I walk through a pretty sketchy neighborhood. I’m feelin’ tough. Anyway, I better jet ’cause my phone battery is dying and it’s dark out. Not that I’m scared.
Follow my adventures on my Facebook Page, Adamantium Joy.
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 Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.