You Are What You Do (Not What You Did)

Life on the Head of a Pin: Our columnist talks about living in the present

(Editor’s note: The author of this column, “Life on the Head of a Pin,” was diagnosed with amyotrophic lateral sclerosis (ALS) nearly 15 years ago. He writes about his life and its challenges every first and third Thursdays. A Hinesburg resident, he currently serves as a mentor at Hinesburg Community School.)

Nate Methot. (Photo by Geoffrey Gevalt)

By Nate Methot
For The Record

“I never thought I’d write a book.” That’s the first sentence of the preface of my memoir. Because I thought I didn’t have a story to tell, but also because I didn’t write. I never wrote or read much for pleasure. I’ve changed even more than a quick glance at my body would imply. Somehow.

It’s hard to know who I am; hard to know what I’d be doing if so many doors weren’t so solidly slammed shut. It took a long time for me to find something new, to choose to let go. It’s hard to watch your sense of self die.

I spent my childhood outside: riding bikes, building snow forts, exploring every patch of woods within reach, and playing a dizzying variety of sports and games with my brother and the boys in the neighborhood. (None of which required our parents to drive us anywhere, nor would they have. Yes, I’m an elder millennial.) By the time I’d finished college, I was spending my weekends running and skiing and hiking and golfing. Never indoors with a book.

That’s still who I am; who I’d like to be. If only. Instead, I spend most of my time in one of a handful of chairs, looking at words on paper or an entire connected yet disconnected universe on a screen. And typing with one finger on a mouse.

I’m still not sure I’ve reached full acceptance (which is to say that I haven’t), but I’ve accepted today. And each day, with varying degrees of reluctance, I accept another. I’ve stopped looking backwards. Mostly. It’s painful and useless. Instead, I’ve tried to expand my little world.

I’ve said “Yes” to things I never would have. New things. Scary things. From volunteering and mentoring to sharing my innermost thoughts, stories and feelings with the reading public near and far. To writing poetry. Poetry!

Dating apps is at the top of the list. In my twenties – with every advantage so clear it’s blinding in hindsight – dating – meeting someone new, trying to connect, sitting in moments of inevitable awkwardness – terrified me. It’s much harder now, but also much easier: I don’t care about all the petty stuff. Here I am; trying is better than not trying.

These changes were not forced upon me; I choose each of them, every day, week, and hour. I’d have much less without them, the head of my pin that much smaller.

It would be a mistake to pretend people only have value in what they can do. Our productive capacity is not all that we are. We have value in simply existing, but for most of us, changes – losses – are hard to work through.

But if I woke up tomorrow, health fully restored, thirty pounds of muscle piled back onto my frame, I’d have quite a story to tell. A best-selling memoir in my mind. But I don’t know how I’d sit still to write it. Like asking schoolchildren to remain at their desks after the bell, prisoners to stay put in their concrete block cells with no bars, I could never volunteer to live in this box.

I’d be out in the world doing all that I could: Old, new, everything. Fearlessly. Without regrets. My life would be big, and full, every moment cataloged and appreciated. I’d be back to myself, only more so. Until that day, outside that dream, I adapt.

You are what you do, not what you did. It’s not entirely true, of course; there are many versions inside each of us. But it’s a mindset: Do what you can; forget what you can’t. It’s a lesson I was taught much too soon.

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Nate Methot’s memoir, “A Life Derailed: My Journey with ALS,” was published by Onion River Press. It’s available at Carpenter-Carse Library or for purchase through Flying Pig Bookstore in Shelburne. To find out more about Nate go to natemethot.com.

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