Cystic Fibrosis · Life

Living with Fear

There’s a kind of online community of people affected by cystic fibrosis, and I’m loosely connected to it. I heard this morning that a 23-year old woman with CF died yesterday.

I’m sad today. It feels a little ridiculous, because I’d never heard her name until this morning. And yet, her death feels personal. It feels like the future.

I don’t talk about this part much. When people ask about how Levi is doing, I am positive. Because truly, he’s doing very well. And when people ask about the recent breakthroughs in research, I explain what’s going on and I am, truly, very hopeful. But if I were fully honest, I’d also talk about the fear.

Because I do fear. I fear that the next bad cough will be the one that heralds the arrival of one of the really bad bacteria – the ones that you can’t really get rid of, that you can only “manage.” I fear that the bottom will drop out of the research, and we’ll have to start over. It’s not impossible. It’s not even really improbable. It happens with research all the time.

Most of the time, I put that away, and I think about mopping the kitchen floor and e-mailing reports to the right people at work, and whether Elias’ potty training is going to take. (From my lips to God’s ears.) But there is a little part of me that is always alert to the dropping of the other shoe. Hearing about CF-related deaths brings that part right up to the front.

Sometimes, I’d like to disconnect from the CF community altogether, and just never have to hear about it. After all, I know a guy with CF in his forties. And one in his thirties. And peripherally, even more people like that. But I can’t bring myself to pretend that that’s the only story, and the certain outcome.

So I’ve been thinking a lot about living with fear. And I thought, finally, about A Wrinkle in Time.


Madeleine L’Engle wrote it in the sixties, and it’s been one of my favorites for a long time. If you haven’t read it, the heroine is Meg, and she’s facing IT – a horrible entity that’s taken control of her baby brother. She was told once that she had a power that IT never could, and she finally figures it out*.

It’s love. She can love. It’s the terrible, wonderful gift that humans are given, and give to each other. IT can take control and take away, but IT cannot ever love. And she says to her brother:

I love you, Charles Wallace. You are my darling and my dear and the light of my life and the treasure of my heart. I love you. I love you. I love you.

And love wins**.

Love always wins. And it’s what I have that fear does not have, that disease does not have. Even when I am fearful, and even if everything I fear comes true. I can love. And that is enough.


*This is a horrible synopsis. Read it. It’s worth it.
**Look up Ana Grace. That’s worth it, too.

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