The Quiet Side of Courage

Chris hugging Lindsay. They are both smiling.

Sometimes a piece of news can change the shape of the world for a while.

So it was on Wednesday when my friend Lindsay told me that after months of tests, she’d received a definitive diagnosis. She has ALS.

There’s what you know in the moment, and there’s what you know later. In the moment I knew that I Had To Help. This is my go-to place. Feeling useful fights off powerlessness for a while, or at least pretends to. I’ll make cookies, I’ll write a letter, I’ll get on my bike right now and go to her.

But Lindsay didn’t need cookies or letters or visits. What she needed, it became clear as we spoke, was money.

Can we pause there? Money.

There isn’t a lot of poetry to it, but I seem to keep circling back to it in these newsletters. It’s one of those weird silences, like a quiet river we’re all swimming in, refusing to look at. Maybe that’s why it keeps showing up here — part of why I write is to speak what’s unspoken, own what’s disowned, to make our collective silences less uncomfortable.

But “uncomfortable” was how exactly Lindsay was feeling. “I know I should be focused on other things” she said. “I don’t want to dwell on it.” “I want to think that the universe will somehow provide.”

My mind flashed back to twelve or so years ago, Lindsay and I on her 3rd floor walk up balcony, drinking white wine and planning a yoga-writing retreat we would run in the Northumberland Hills. I was new to the self-employed world, just starting this thing that would become Firefly. I was shaky and riddled with self-doubt. I asked Lindsay how she gave up her “real” job to write, give shiatsu treatments and teach yoga in the community center — how she trusted that it would all work out. Did she worry about retirement? Did she have any great lines I could use on my parents when they begged me to go to teacher’s college?

Lindsay just laughed. “I don’t have a retirement plan, Chris. I’ll work until I die.”

And here we are.

With this kind of ALS, the life expectancy is 2-5 years. First you lose your ability to walk, then talk, then eat, then swallow, then breathe. Lindsay explained this to me with so much love, I could hardly stand it. All week I keep running through it in my head. I’ll lose all those things too, we all will, but most of us don’t know in what order, or when.

One thing is clear; she won’t be working until she dies, like she planned to.

I think what Lindsay was saying to me on the balcony was — I just have to. This is what I do. And if you’d asked me then too, I would have told you something similar, though my voice would have been shakier.

I talk about that shakiness on the first night of a new class.

The anxiety can be incredible. I tell them, you’re nervous, that’s okay, it’s good. But something inside you is bigger than all that. It got you here. It will take you forward.

It helps a little, but the breath is still short, the knees still woodpeckering under the table. What really helps is writing. It helps because it lets them experience what brought them through the door — their courage.

There’s what you know in the moment, and there’s what you know later. When I got past my instinctual lurch towards cookie recipes, I felt an enormous sense of awe rising up in me. It’s here in my hands as I’m writing. Lindsay lived the life she wanted to live. She gave the gifts she wanted to give. She chose that, despite the odds, and she has no regrets. What is that if not courage?

And by “courage” I don’t mean the crocodile-wrestling brand, I mean something much quieter. It’s the force that fills us when safety isn’t available and backing down isn’t an option.

Fear can be a useful thing. But if we just can’t go where it’s pointing us, we need courage to take over.

I’m glad that Lindsay decided to follow her calling. And I’m glad I started Firefly. And I’m glad for every gorgeous soul who pushes past their fear and walks into our studio to write. But holy crap, it’s a really hard world to be authentic in. And all I can say is — thank god for company. For warm-hearted strangers around a table who tell us how our writing touched them, for friends on balconies who tell us to go for it, for people who make you cookies even when you don’t really want them.

Which leads me to this – I did end up finding a way to help.

I set up a crowdfunding page. I have no expectations, but if you feel moved to pitch in, it’s right here. Thank you to all you dear people who saw it on Facebook and contributed. It’s a small way to help make this hard world a little softer. Lindsay was very reluctant to let me do this, but she had the courage to say yes, and we’ve both been elated to see the support flow in. She was right; the universe is somehow providing.

In it with you,

P.S. An editorial note, several yeas later: The crowdfunding page was a big success, and helped Lindsay greatly. Thank you to everyone who participated. She died peacefully, with her family around her, in the spring of 2019, just under a year after I wrote this newsletter.