For Me, Fear of the Unknown Is Harder Than Fighting Disease

For two decades, plummeting pulmonary function percentages terrorized me, weight flew from my body, and my diagnoses list stretched longer than a CVS receipt. Trips to the clinic featured grim reports detailing my body’s ruin: estimated organ expiration dates, fistfuls of prescription slips to counteract the destructive side effects of other medications, threats of hospitalizations that blew hopes to smithereens. The reports climaxed at, “We’re running out of options and you’re not gonna like this.”

After my bilateral lung transplant six years ago, numbers climbed instead of dwindled, medications were dropped rather than added, and every clinic visit was a victory lap. But they remained emotionally difficult because the frigid-sanitized-squeaky-plastic environment refreshed nightmarish memories, plus I feared the inevitability of my numbers free-falling again.

In the pandemic’s dawn, Zoom appointments replaced clinics, and the distance comforted me for two and a half years. Last August, though, the docs missed me enough to ask to see flesh-and-blood me rather than pixelated me. I didn’t miss them. The idea of returning to a clinic horrified me. I’d gone too long without it and all tolerance had left me.

In the week leading up to that visit, things broke. Panic attacks wrecked me after five years clear of them. I dissociated, wept, and shook. Terrible traumas tormented me.

Recommended Reading

November 29, 2022 News by Marisa Wexler, MS

PASTE, New Gene-editing Tool, May Lead to ‘Blanket’ CF Gene Therapy

In moments freed of those memories, “what ifs” buzzed my brain: What if they notice something they couldn’t have on Zoom? What if I need to return every few days like the old times? What if these are my last days of freedom? Dread eclipsed all things, tunnel vision sighted toward the idea that as long as I’ve breathed through another person’s lungs, my health has been artificial and fragile.

I feel I’m only ever waiting for sickness to return. The first year after transplant, I had nightmares that my new lungs had cystic fibrosis and I was suffocating again. These nightmares have leaked into recent years, too.

But things were perfect. My lung function was stronger than ever before, my weight held steady, and my CT scan was clear. I got my clean bill of health (and a big bill to pay, of course) then skipped on my merry way.

Healthiness feels like a waiting room

I’m writing this four months later, right after completing another pulmonary function test. I’ve felt completely healthy, but I trembled with nervousness leading up to the test. Surprise: I lost 11% of my lung function. Yet I’ve felt radiant ever since, praying joyfully, crying freely, hugging tightly, singing loudly. Weird, huh?

Why does anxiety thrash me before the clinics but not after receiving terrible news? Because I hate not knowing more than anything else. Anxiety is birthed in the hypotheticals imagined while waiting, and any person with chronic disease detests waiting rooms. I know how to fight sickness, but I don’t sit comfortably in the unknown. Yes, not knowing if I’m sick is scarier than actually being sick.

If I’m so unafraid of fighting sickness, one might wonder why I dread the verdict about whether I’m healthy. But the mind is hardly rational. Maybe this is a bit like the traumatized veteran’s struggle in not knowing how to live in peace, without the simplicity of “just survive,” after years of being barraged by immediate dangers. Like the veteran, I live with the subconscious paranoia that all will go awry soon enough. I know how to handle things once the threat is made real and known, but I anxiously keep watch until then.

Fighting disease as a whole person

Now that I’ve seen that 11%, the tension has snapped. Life is simple and I’m relieved. Maybe the 11% is a fluke, but either way, it’s blessed me with peace and the drive that every person should have to take care of their body.

My peace is found not only in knowing, but ironically in fighting itself. My fighting style has changed as I’ve matured. Once I was angry about it all, but stress only aggravates disease. Now my fighting is rooted in what gives me life. That’s how we fight the killing things — with life.

I fight against what aids disease progression: paralysis of will, stress, isolation. My fight is to claim hope, reframe life, and rally allies. Waves of gratitude cleanse me as I realize I may lose everything soon. Risk refines my mind of distracting clutter, rooting me in presentness. I relax into prayer, finding my center in a warm embrace. My compassionate community’s response has me feeling beloved. The real is made obvious, the illusions dissolve. When healthy and taking life for granted, I overlook these things.

“Don’t worry,” I tell friends. “You know I thrive in danger.”

There is release in knowing that something’s wrong, that it’s time to do what I do best — live. I love my body after all it has pulled me through, and that 11% revealed that it’d been fighting alone. It’s time for my full being to join the fight, joy and all.

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.