Loureen and I waited for our travel buddies to pass through airport security. Soon, we would be on a plane to Jordan, where we would provide various forms of support to Syrian refugees escaping civil war. Loureen, wise and a smidge or two older than me, looked me up and down before asking my age.
I responded to my new friend with a grin, “25. Why? Curious why I have a beard but act like a kid?”
Loureen’s eyes twinkled when she laughed. “Well, I was going to use the adjective ‘youthful.'”
I told her I was honored. Youthful usually is not a word used to describe someone who’s seriously ill. Two years post-lung transplant, I relish the perception that I act younger than my age, even when that isn’t exactly a compliment. For most of my life, people told me I was beyond my years, an old man in a young (and wounded) body. That’s nice, but it was a reminder that I was forced to grow up too fast. Sure, I was a humorous dude, but those who grew close to me eventually identified my humor as a coping mechanism and my laughter as a mask. In reality, the boy who laughed so often lived with a bitter, furious, anxious, depressed heart.
While classmates fussed over school hall drama, I worried about catching up on weeks of missed work and instruction. While other boys played sports, I napped constantly in a fruitless effort to drive away crushing fatigue. While teens got grounded for partying, my mom busted me for dumping meds to escape the suffering inflicted by my numerous medications’ side effects. While friends bemoaned bad haircuts, I sobbed over my body’s intrusion by ports, PICC lines, and feeding tubes.
I was a child forced to normalize being sliced and poked. I was a preteen manipulating psychologists to avoid being stamped with “noncompliant” or “suicidal.” I was a teenager making treatment strategy decisions that could extend or end my life. I was a college student debating those who had doctorates and all sorts of specializations.
Eventually, I was the deaf 23-year-old celebrating his recent college graduation by hallucinating, going insane, and nearly dying from septic shock. Strapped to my bed so I’d stop punching people and tearing out my IVs, I neared death’s door, starving and gasping like a fish on land. After a palliative doctor said to prepare for my death, my girlfriend at the time opened her Bible to a random page. She found herself reading a passage in the Book of Job that describes a man starving on his deathbed. He’s saved by an angel and “restored as in the days of [his] youth.”
This seemed like an unlikely parallel at the time, but I’d come to see it in hindsight as prophecy once I transitioned from that soiled ICU bed to leaping around the globe for adventurous travels thanks to my new, transplanted lungs.
At some point, I went from being the “boy beyond his years” to being “the man who doesn’t act his age.” Facing down death makes one realize how trivial much of life is, as well as how beautiful it can be if lived with gratitude and intentional enjoyment.
I revel in dumb humor, awful dancing and singing, and keeping high energy in boring places. I’m a senior director at my workplace but I refuse to give up words like “yo,” “stoked,” and “rad” when making companywide announcements. I hang out with the high schoolers I mentor through church more than people my own age — they haven’t yet forgotten how to have fun while doing “nothing.” Friends call me Goofy and one even made a shirt to complement the nickname.
Brad today is an immature guy. Maybe I’m like Benjamin Button but I age backward in personality instead of physicality. I know how to turn on the maturity switch when necessary, but only when necessary. My life was spent being too serious because that was needed to survive. I think I deserve to enjoy my second chance at life, whether that be through blowing money on yummy food, traveling across the world just to prove I can, or by telling dumb jokes at inappropriate times.
I still live responsibly and with care for others, but I refuse to complicate my life with formalities, negativity, and drama that is dwarfed by what I experienced because of my disease. I should be dead today, so … whatever. My goal is simple: to live simply and pursue joy. I’m in the days of my youth, finally. I won’t waste them, but instead, live them in full enjoyment.
“I’ve been trying to live my life so that in the hour of my death I would rather feel joy, than fear.” –Witold Pilecki
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.