Making Up for Lost Time and Lost Experiences

I’m flyin’ high. Or maybe flyin’ buzzed. My transplant docs say “drink only in moderation,” and I am, smuggling sips via a straw tucked into my N99 mask. It’s a pathetically tiny plastic cup of white wine, but evidently, I can’t handle much.

Don’t judge. I know people will. They might say, “That stuff will mess with your meds!” But, hey, 24 years of fighting for my life messed with me even more. I deserve a drink. Plus, flying makes me nervous because of infection risks. I could use some liquid chill. Double-plus, “it’s 5 o’clock somewhere.” Actually, it is 5 o’clock here, 10,667 meters above some desolate chunk of vast Greenland.

Aboard Lufthansa Airlines. (Photo by Brad Dell)

I didn’t touch alcohol until this past New Year’s Eve, hours after the Chihuahua I was dogsitting went to the pet hospital following a seizure. I was brokenhearted because the dog was hurting and I figured drunkenness was a life experience to sample. So, I drank some stuff at my friends’ place. My parents chuckled the next morning as their 24-year-old son ashamedly reported his well-liquored night. I honestly hadn’t felt drunk at all, hypothesizing that I had an impressively robust alcohol tolerance. Later, my friend remarked that I was actually “hammered” that night.

Since my transplant, I’ve chased every obtainable, meaningful life experience — the moronic, the poignant, the jubilant, the meditative. Because I don’t know how long I’ll last — days or decades — though I’m semi-comfortable with that. (Really, everyone is living with a constant threat of death. But the ability to avoid obsessively pondering imminent death is a healthy person privilege.) I’m determined to have a wide collection of wondrous memories to mull over as I take my final breaths.

Which is how I’ve ended up over the Atlantic Ocean. On my way from Vancouver, Canada, to Frankfurt, Germany, then Belgrade, Serbia, to cover the European Cystic Fibrosis Conference.

I spent 23 years in mental petrification. Afraid to climb trees, drive, ride the loopiest rollercoasters, taste new foods, speak up, drink, travel. I used to quip “YOLO” (You Only Live Once) in a dry, sarcastic way, which then turned into a habit, much to the chagrin of my friends. Then I almost died in June 2016 while waiting for my January 2017 lung transplant. Now, my transplanted friend and I say “YOLT” (You Only Live Twice) in sacred tones when debating the pursuit of a new wild or potentially embarrassing adventure.

I’ve embraced a “Yes Man” attitude. I don’t turn down an adventure, even if it’s something uncomfortable, as long as it isn’t morally corrupt. So, when my boss asked me over dinner if I wanted to visit Serbia, I gulped, fiddled with my pasta fork, and stuttered that I’d love to. I was paralyzed, though my head rang with “YOLT.” I went home and whined my nervousness to my parents. But then I went to bed and thought, “It’s time.” CF can’t hold me back. It’s time to snatch my life reins away from my disease.

I got my driver’s license last month, bought a car, and rented a room in Santa Cruz. I’d previously toyed with the idea of living in that beach town, but had convinced myself that was only daydreaming because “it’s too good to be true.” Too picturesque, too fun, too delicious. People think I’m crazy for doing it because, well, beach towns just have a stigma of being an escape from “reality.” But maybe if they’d tasted so much death, they’d prioritize fun and a reality escape, too. Plus, it helps my mental health to be near the sea. I deserve fun. I deserve to live in a rad place and travel to other rad places, too.

It’s my first time out of the country. Traveling alone.

One of my last flights, in September 2016, was in an air ambulance racing from Hawaii to San Francisco for my lung transplant. I lay on the medical bed and gazed at my girlfriend of six years, wondering how she’d get along if I passed away. We aren’t together anymore. “In sickness and in health,” they say. We helped each other in sickness; not so much in health. We’re still tight friends. Things just changed in my life (and hers). We changed.

Dramatically.

For the better.

After our breakup, I needed some identity discovery — leaving six years of dependence on someone else will do that. I shot into action. I had to prove I was my own man and, yes, collect life experiences for the thrills and satisfaction that I’m not wasting my second chance at life — my donor’s gift.

Since August 2017, I’ve traveled to Denver, Colorado Springs, Phoenix, Flagstaff, Antelope Canyon, Grand Canyon, Glorieta, Santa Fe, Los Angeles, San Diego, Monterey, all around the San Francisco Bay, Yosemite, and Vancouver. This week, I travel to Frankfurt, Belgrade, and Zurich. In the next couple months, I’ll explore Mt. Zion, Salt Lake City, Las Vegas, Jacksonville, Savannah, Fayetteville. Then, Honolulu in the winter for my long-awaited “homecoming,” post-transplant.

I think it’s laughable that people imagine transplant life is akin to Bubble Boy’s, thanks to immunosuppression. Nah. Before transplant, I survived. Now … I live.

I feel good.

Follow my adventures on my Facebook Page.

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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.