Is there a word for a phobia of dying in a hospital, of the disease you were born with? Medicladiseseamorbidiphobia?
I used to wake in the middle of the night, imagined visions fresh. Visions of myself lying in a hospital bed, dying while deaf — unable to hear my loved ones, too sick to read. Surrounded by the scent of alcohol prep and sweat, by nurses I didn’t know, by medical plastic and metal. Needles and tubes sticking out from every pore of my skin. Literally drowning in gooey globs of mucus.
I was always envious of those who say death doesn’t scare them. Some crave an afterlife more than their current life. Some are simply brave people. Some put up a tough act but secretly fear it. Others haven’t stared death in its eyes, stood in its shadow and felt small. They didn’t live life like a jug of milk whose expiration date was too smeared to read — but existent nonetheless. And milk doesn’t last long, ya’ know?
I was rotting from the inside out, airways plugged by this disease’s literally-infectious tendrils. This disease that felt so stupid to describe: “My mucus is just too thick.” It was thick. It was so thick in my last days before transplant that I coughed up green-tan Play-Doh. You’d swear that’s what it was. When I didn’t wake from nightmares, I woke because I was suffocating.
I’m not sanitizing this post of the reality of cystic fibrosis (CF). It’s imperative that you realize its hold on my life if you truly want to understand why I continue to be baffled that I survived.
For 23 years, CF’s mucus-sticky fingers clenched my neck. It threatened my loved ones, my career, my finances. It intruded on my comfort, my mental security, my self-esteem. It paralyzed me with fear, mocked dreams.
It was the very-real Boogey Man when I was a child, hiding beneath my little rib bones. No kid should grow up knowing they have an expiration date infinitely shorter than their friends’.
I grew up hostage to CF, yet I didn’t know just how brutally it could pounce until, at 23, CF tightened its suffocating grip, squeezed the oxygen from my airways, vaporized the hearing cells in my ears, blew carbon dioxide into my brain, and poured poison into my bloodstream.
There I was. Deaf, tubes poking out, surrounded by stiff medical unfamiliarity, drowning in mucus. Dying.
CF couldn’t ever actually hurt my loved ones, but it could turn me against them. It corrupted my mind with psychosis — an indiscriminate, Hulk-like rage unlike any I’d ever known before, directed at anything and everything. Including my loved ones.
CF could hurt me all it wanted to, but I refused to let it get away with hurting those around me. When I emerged from hallucination and psychosis, I ditched my victim mentality and declared war on CF — vengeance was mine.
When orchestrating biowarfare, masterful strategists (doctors) and tacticians (surgeons) matter. These battle-hardened titans of medicine looked me in the eye and emphasized their plan was risky. But that we would come out triumphant.
Just 5’4”, my surgeon was colossal in power and skill. She’s the type that radiates confidence without arrogance: “I will not do the surgery if I think the lungs aren’t perfect. You need to trust me,” she typed on a computer.
I looked at her and, despite my historic trust issues with a multitude of doctors in the past, nodded: “I know. I trust you.” I might have stuttered when I said it. We were talking about cutting me open, after all.
After two decades of having life expectancies and survival rates crammed into my brain, this surgeon was envisioning something beyond CF. And yes, I trusted her, despite contradiction to what I’d always heard before then.
Meanwhile, a CF pulmonologist on the transplant team, fittingly named Dr. Golden, was preparing for a speech in Ireland, in which he’d present me as his “project.” He’d say I would soon be breathing, “and hearing, too!” He had a plan, my surgeon had a plan, the team had a plan. So, I planned — for a future.
Suppressing CF’s power over me, as we’d done for 23 years, wasn’t enough. We had to destroy it. I had my ravaged red lungs, corrupted by years of infection and inflammation, scraped from my chest and replaced with full-bodied pink lungs untouched by biowarfare. CF would remain a whipped dog in my digestive system, and transplant has its own risks. But CF was only ever lethal in my lungs. This would buy me a lot of time — “a very good lifespan.”
I just needed to wait for the call that lungs were available. My team waited for the same call. It was a call that would mean someone had died, “brain dead,” they call it. It might have been someone who didn’t know to fear death. Who hadn’t stared it in the eyes until then. Or it might have even been someone who embraced death for comfort from life’s woes. It was something I didn’t want to think about, but forced myself to. It was something very real and almost biblical: death for new life. I got the call, and I thought of my donor. And rarely have I stopped.
I always imagined the OR would be a grand opera of flying metal instruments and shouting. On Jan. 15, 2017, as I lay on the freezing operating table awaiting sedation, I snuck a peek at the surgery team: They were calm, collected. For them, this was another night on the job — they’re that cool. The surgery was likely conducted with murmured instructions and practiced precision, pierced by a moment of silence for my donor — as is tradition.
Before the surgery, it was, “No-nonsense, realize the gravity of the situation.” Since then, it’s been ohh’s and ahh’s with my transplant team because of a renewed life. One day, chaotic crisis can cut celebration. But, for now, I sleep deeply at night, knowing CF will not kill me.