I’ve Allowed My Disease to Abuse My Energy

Well, it finally happened: Twenty-two months after my double-lung transplant, I finally got sick for the first time.

I gotta say, with a suppressed immune system, illness isn’t so lovely.

I saw the docs last Tuesday, and they ran a panel of tests. No results yet, but I’m fatigued and coughing up globs of green mucus, like the good ol’ days. I even spat into a sputum cup. The situation felt familiar — in a bad way. I guess I’d gone so long without acute sickness that I’d begun to think I was invincible. That day at the doc’s office, I felt like CF had ravaged my lungs again, just like in my weekly recurring nightmare. My CF brothers and sisters know that’s anything but a feeling of invulnerability.

These days, I suffer from believing my energy is boundless. I often tell people I feel like Superman in comparison to my pre-transplant days. My pride is my kryptonite — I’m too stubborn to admit I sometimes need a break.

Throughout college, I treated life like a race, striving to live fast in defiance of CF. But I’d burn out my tires pretty quickly and neglect my pit stops, my rest. After each sprint, I’d need some extensive repairs, or as the doctors call it, “a tuneup,” in the hospital.

Friends would marvel at my ability to get good grades despite missing a fourth of my schooling, and I’d joke that God gave me sickness as a handicap for the rest of society so others could compete with me. They didn’t know I destroyed myself for good grades and jobs. The more I won, the more in control of my disease I felt, yet that “winning” typically led to hospitalizations and inched me closer to death — the ultimate loss. The cycle would reboot once I’d leave the two- or four-week hospitalizations and launch myself into “making up for lost time.”

It wasn’t only my defiance of disease that drove me past limits, but also my guilt. It’s an injustice to ourselves that so many of us with CF feel guilty for having a disease. How many times have I apologized for taking care of myself? How many times have I apologized for my genetics? In my job as an editor, I always tell writers to never apologize for taking off work for health reasons. Why don’t I follow my own advice?

I feel like I disappoint people if I don’t defy my conditions. My self-care feels like a lack of care for others; a shifting of my responsibilities onto their shoulders. My disease isn’t my fault, but it isn’t theirs, either, so why should they suffer?

And I feel like I fail my donor’s memory and family because I’m not using every moment of my second chance to do exciting things.

Yeah, I know that’s all a load of malarkey. But you know how it goes — my heart and brain play tug of war.

Luisa, a person with CF and the community manager for CF News Today, chatted with me about my sickness and said it’s time to rest. Honestly, lots of other “healthy” people said the same, but it’s different to hear it from someone who knows your battle, feels your battle. Post-transplant, I sometimes feel like my resting fails people who still have CF in their lungs because “surely they wouldn’t take this health for granted like I am now.” It was like I needed Luisa’s permission to justify lying in bed and closing my eyes.

I took my first nap in a year and a half. But then I awoke and felt guilty for ditching work, and so I edited at night. Then I slept for 12 hours.

Today, I’m “grounded” by my editor-in-chief. She ordered me to take a sick day. Well, three, actually. The horror! Maybe she wouldn’t approve of me writing right now, but writing is my rest. It’s the cave I crawl into, where I process my thoughts. And as I sit, processing everything I’ve just written, I realize the truth: Rest is wise.

(OK, I get the hint, Kathleen. Via Instagram)

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