Trust Me, You Should Talk About It

“This just feels so sudden,” I said to the doctor who had just become my sister Mary’s new CF physician. Days before, she’d been transferred from one CF center to another in need of an emergency lung transplant. Though I had always known that my sister would eventually need a transplant — because until there’s a cure for this disease, the need for new lungs is an inevitable part of every CFer’s future — it still felt like it had appeared out of the blue.

This wasn’t at all how I’d mentally scripted it. I imagined first getting the news that my sister was being listed for transplant, and then having plenty of waiting time to start processing the information to come to peace with it, and to gear up for whatever came next. Instead, my sister was rushed from one hospital to another in a virtual coma, on paralytic meds. Because her transplant was deemed an emergency, her lung allocation score put her at the very top of the list. It all happened in a terrifying blur.

“Does it really feel sudden?” her doctor pushed back gently. Looking down at her chart, he began reading off the dates of her recent hospitalizations, her at-home IV treatments, her declining lung function numbers. As he ticked off these facts, his point was clear. What felt to me like a steep, precipitous decline wasn’t necessarily so. He used a phrase I’d never be able to get my mouth around — end-stage CF — and said she’d been heading in that direction for some time. There was nothing I could do but silently nod.

Twice my sister and I had talked about her inevitable lung transplant — or almost. Both times I worked to steer the conversation in a different direction. I wasn’t sure why. Maybe it was because I told myself it was far away. Maybe it was because my sister always made it plain that transplant wasn’t a cure, that it was, as she liked to say, just another pair of lungs for CF to crap up. There was time to talk about it. Plenty more time. Until there wasn’t.

When my family is in its best headspace, we live in the present and are able to savor it. Small moments can be enjoyed without thinking about the storm cloud of CF just overhead. Maybe it’s a byproduct of reading so much Thich Nhat Hanh, or just the kind of insight that kicks in in middle age, but I find I can now relish happiness that arrives in simple ways, like watching my sister and my father, who struggles with his own health challenges, both be well enough to chase my kids around the backyard in an intense water gun battle. I’ve never believed in happiness as a giant lighting bolt cleaving the heavens or a magic wand erasing all of life’s problems. CF has taught me that the little things in life are, in fact, the big things.

Perhaps like other families up against the struggles and uncertainty of a serious disease, my family clings to ritual to try to replay those little moments of happiness and to mitigate anxiety about the future. Ritual can certainly offer comfort, but it can also become a compulsion that erases the opportunity for spontaneous joy. Endless repetition makes time harder to delineate, makes it feel like it is passing more quickly. New experiences slow time by making it more memorable. But this means surrendering to the idea that the future cannot be scripted or controlled.

If I could go back in time, I would tell the past me to talk about transplant, to face it. Post-transplant life has been complicated and often difficult as my sister has faced various side effects, infections, and even PTLD, a rare form of post-transplant cancer. Talking about transplant wouldn’t necessarily have mitigated any of that, but it might have offered more insight into the road ahead. There’s a power in speaking things out loud, in dragging your fears into the light of day. Sometimes they’re not as omnipotent as you thought, and you can face them after all.

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