From kicker to hand-holder: Being brave despite cystic fibrosis

As a child I was a kicker, the type no nurse wants to be near when wielding needles and throat swabs. Eventually I’d relax my shrieking when Mom or Dad held my hand and called me brave. The nurses were then more warmly received. To be safe, they came bearing diplomatic lollipops, stickers, and another “You’re so brave.”

There comes a time when the chronically ill child learns that such rewards are designed to shut them up and soften the next meltdown. Lollipops and stickers, tragically, haven’t been a given since I entered my teens, but I do frequently hear, “You’re so brave.” It just doesn’t hit the same, though. Whereas those words once made me beam with pride — tears still drying on my cheeks and voice hoarse from screaming — they’ve since made me burn with shame because I haven’t felt they’re true.

As a child I had no awareness that I lacked bravery. Now, though, I’ve realized that, well, I didn’t have much of a choice, did I?

Bravery involves making choices. Medically, a child undergoes what the parent commands, whether the child kicks or not. And an adult patient chooses either to release themselves to the disease progression or kick and scream against the disease rather than against the tests and treatments. Most seasons, I released, noncompliant and resigned. In the times I did fight, it wasn’t brave charges against my cystic fibrosis. It was my desperation, my fear of dying.

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I Don’t Always Wear the Badge of Bravery

“You’re so brave” has changed for those who speak it, too. Whereas the phrase was meant to quiet a distressed child, in adulthood the phrase often gets used to cover up awkwardness. Many people don’t know how to respond to someone sharing about disease. I don’t blame them for wanting to cover their awkwardness. But it’s just as awkward for the person with the disease to respond.

“Ah, thanks. But I was just surviving.”

“No, really. You’re so brave.”

Then a sarcastic, “Oh great, now I always have to act inspiring around you,” and an awkward chuckle.

Some advice: When someone shares about their disease and its trials, try responding with, “What’s that like?” or “How can I support you in that?” Listening, questions, and actions show care.

Anyway, I don’t want to land this writing on how to respond to people who lack choice in their trials, nor on how that phrase has hurt me. I want to land on how I now believe I’m brave. I wasn’t, but I am now. Maybe you are now, too.

Even as an adult, in clinical spaces I feel terrified, restricted, and stuck. My blood pressure and heart rate soar beyond their norm, and I usually click into dissociation mode the moment I walk through the lobby doors, detaching emotionally and opting for autopilot responses to situations and people.

That’s how it is when I must go to the hospital.

Earning the badge of bravery

But a recent situation was different. I had a choice about whether to accompany a close friend to the emergency room. He was mad nervous, so I wanted to be there with him, both as his pastor and to leverage my medical experience to advocate for him in a complex situation. He didn’t need me to go with him. Logistically he’d be fine on his own, and his family was going also.

Yet I drove him to that ER and walked in, both of us trembling. I got sweaty, shaky hands and chills. I even felt dread and danger. I wasn’t the patient, but I’d been the patient enough times to feel I was going to get hurt in that ER. Trauma does that. I wasn’t consciously thinking doctors would jump out of the shadows and stab me with something pointy. But my body seemed to assume so. I felt tempted to dissociate, to stare at my phone or the wall and just blank out.

But I stayed, physically and mentally. I stayed just because a friend needed support. Well, maybe not “just.” Maybe I was trying to prove something to myself, too. Maybe I was trying to prove I’m not the scared kid anymore.

But regardless of the motive, I chose to stay in the scary place. I didn’t kick or scream. I simply held a scared man’s hand and told him I was with him.

To be clear, my usual inability to enter medical spaces without dissociating doesn’t make me a coward. Trauma is not cowardice. But I couldn’t call myself brave, either. You don’t need to be either cowardly or courageous. You can be neither, simply not cowardly and not brave. But in that ER, it was different. I chose to be there. That was big.

When I saw my therapist days later, she asked how I felt in that ER. “Scared,” I said. “And brave.”

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, and are intended to spark discussion about issues pertaining to cystic fibrosis.