Winter 2016-17: Sabrina Santos
We called each other twins. Sabrina, like me, was a nerdy, faithful, coffee-loving journalist. She also had cystic fibrosis, Mycobacterium abscessus, deafness, and an urgent need for lung transplantation.
Unlike me, she was fearless. Sabrina wielded titanic power. Her radiant eyes could shatter your world in the sweetest way, even over the internet. I envied her resilience. Even Death respected her, I’m certain.
She’d gotten Myco shortly before me, along with deafness and cochlear implants. She also joined the transplant waitlist first. We’d joke that if she got her lungs, I’d be fine since I always followed her. I didn’t wonder if she’d be fine.
She did get the transplant, on Dec. 11, 2016.
But she never left the hospital.
Our last exchanged words were on Jan. 3, 2017. She’d described the torment of being stuck on a trach vent. Selfless as always, she then asked how I was doing. I described how pleasant my week was. How could I be so daft? She couldn’t easily communicate soon after.
We were right. My transplant was imminent, on Jan. 15.
My angelic twin passed on Feb. 22. We’d imagined we’d climb mountains together. Survivor’s guilt shreds me. But I also know she roots me on as I climb mountains while interjecting sarcastic jokes.
June 2018: Anthony Bourdain
My 11th grade English teacher assigned us a binge-watch of Bourdain’s “No Reservations” to analyze his narrative style. I transcribed his script. Man. That guy was cool. His writing dripped with slick suave. Bourdain could cruise through wartime Syria without a drip of sweat. He’s been a paramount influence to my post-transplant lifestyle; a distant role model. His writing made me want to write; his travels made me want to travel.
My first trip abroad was to Belgrade, Serbia. Before transplant, I wasn’t strong enough to travel solo — and the idea frightened me. Now, I confront my fears head-on, with intention. So, there I was. Clammy, trembling, terrified. My local friend, Kristijan, sat me down outside a pljeskavica shop.
He verbally smacked me across the face, sobering my travel terror. In his gruff Serbian accent, he told me I needed to straighten my spine, lift my chin, and stop worrying. “You’re here,” he said. “You won’t see these people, maybe this place, again. Live in the moment — take it in.” He told me he knew I’d been through a lot; a lot to be proud of. Me baffled, him satisfied, he pressed a wrapped pljeskavica into my hand and marched off to “meet a girl.”
Stunned, I sat on a bench, eyes wide, and bit into that steaming, spiced pork-beef-lamb patty sandwiched between flatbread, creamed cheese, and fresh tomato. My trembles became delighted chills. My eyes closed. It was mesmerizingly delicious.
I opened my eyes to Soviet and Turkish architecture, to people chattering in Serbian nearby, to a part of the world unknown to me. I’m a writer in the middle of Serbia. I feel kinda like Bourdain. A true rarity: I felt kinda … cool.
The next day, Bourdain — who propelled my writing, my traveling — was pronounced dead. I chase his legacy with fervor.
August 2018: Claire Wineland and Storm Johnson
I brooded on Seabright Beach at dusk. The joyful screams of Labor Day weekenders riding the boardwalk’s rides pierced the air. It seemed inappropriate.
Claire Wineland and Storm Johnson had died shortly after their lung transplants, both the day before. Two brilliant lights in the CF community extinguished when they should have lived forever, like the Lost Boys in “Peter Pan.” Or, being the Santa Cruz Boardwalk, maybe the Lost Boys in “The Lost Boys,” but happier.
Two lights extinguished, with last puffs of air fainter than what darkens birthday candles. No more birthdays. New lungs untested by new homes. I sat on the darkening sand, neon coronas of boardwalk rides hovering in the distance, and edited an obituary for Claire. It was Labor Day, but the task was one of honor, not labor.
I reflected on the two lights, overwhelmed. You didn’t even know them personally. Don’t be silly. But I do know them; I’ve walked the same path, even shared genetics, in a weird kinda way.
I thought of 22-year-old Storm, and how he got married just the other day, wearing a tuxedo in his hospital bed. Why get married if you’re dying? Maybe one day of blissful marriage is better than decades of ups and downs? Just as I tell people my past year of smooth health has been more wondrous than the last 24 combined.
I recalled Claire’s words, wise beyond her 21 years: “Go enjoy your life. Really. I mean that seriously. Go enjoy it. ‘Cause there are people fighting like hell for it.”
It was night, no lights, save for those along the boardwalk. I heard joyful screams of Labor Day weekenders riding rides. It was wholly appropriate.
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.
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