The Train Rides End and the Great Work Begins

We won’t die secret deaths anymore. The world only spins forward. We will be citizens. The time has come. Bye now. You are fabulous creatures, each and every one. And I bless you: More Life. The Great Work Begins.

—Tony Kushner, “Angels in America”

I’m writing this on the train. We’re in Wisconsin now, about five hours from Minneapolis-St. Paul, and about six hours from home. I’ve had a wonderful 12 days on my Amtrak Residency writing trip. I’m so grateful I was selected for it. And I want to tell you everything, but I’ll start with an overview of the trip for now.

There always seems to be risk when you have SMA, no matter what you do, and traveling is no exception. The risk feels like it increases the longer you’re gone and the farther you are from home. You have to think about hospitals and medical equipment and worst-case scenarios, like forgetting the wheelchair charger. Yes, we’ve done that, and yes, the rest of that two-day trip was chaotic.

I was anxious about this trip. My lungs were a concern, but there was also the professional component to consider — the writing. This is so new to me. I couldn’t just nap for five hours straight, and I couldn’t just dig wholeheartedly into Kate Zambreno’s “Heroines.” Which, by the way, is a great book, so get it — go buy it right now. The Amtrak Residency meant I had to write, I had to be on social media, and I had to keep myself accountable to my sponsor, Amtrak.

I knew this would be a long, exhausting trip. My parents and I joke that we’re on Phase 5 of my #AmtrakResidency, which is to say the final phase. Phase 1 was our train rides to Albany, New York; Phase 2 our time in the Berkshires of western Massachusetts and Connecticut; Phase 3 our time at Cape Cod and Boston; Phase 4 our one-night layover in Middleborough, Massachusetts; and Phase 5 our train rides home to Minnesota’s Twin Cities.

Each phase contained busy, jam-packed days. On Saturday, May 27, the departure day, I was up at 4:30 a.m. I was writing, eating, navigating crowds, trying to nap, navigating train stations, failing to nap, and tweeting till around 10:30 at night. That’s a normal day for some of you, but for my easily fatigued body, it was almost too much.

As you can guess, there were hiccups. How was I supposed to keep my weak, frail body from shutting down? Answer: V8 energy drinks, circulated through my feeding tube. How was I supposed to write with an onscreen keyboard and a mouse on a rickety train? Answer: Slowly. Very, very slowly.

But the hiccups made my trip weird, wild and wonderful. Not everyone gets into a situation where they have to hook their baseball cap to the back of their headrest so their head doesn’t bounce while their train is traversing Boston’s cobblestone streets.

I feel like I’ve been standing still, or at least been sedentary, for a while. What can I do with the B.A. in psychology I’m going to get? Nothing, really. Which means I’m buckling down and focusing on graduating, so I can transition right to grad school. I’m also waiting for my lungs to straighten out.

While those issues are real, this trip has reminded me just how big the world is — and how much of it I can grab, if I just reach out.

It’s finally summertime. I’m going to finish my book, because this trip reminded me how much I love storytelling. How badly I want to be on the New York Times’ bestsellers list. And how badly I want to do a press circuit, signing my book, reading from it, and doing press interviews.

I want to get a job at a bookstore or library, even if it’s just a part-time, minimum-wage gig, because this trip reminded me how much I love being surrounded by books. I’m not content to Wait For It anymore. (Y’all must have known I’d try and fit a “Hamilton“ reference in here.)

I’ve missed writing SMA News Today articles. When I do those pieces, it feels a lot like I’m writing letters, which I haven’t done in ages. Please let me know how you’ve been doing. And thanks so much for the well-wishes. They’ve meant the world to me.

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Note: SMA 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 SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.