On Saturday, May 27, I’ll be boarding an Amtrak train at Union Depot in St. Paul, Minnesota, at some god-awful time in the morning. You can tell my mom was the one in charge of the trip itinerary. We have a layover in Chicago, and then we’ll be off to the Eastern Seaboard, where we’ll be stopping in New York City, Boston and one of my favorite places in the whole wide world: Vermont.
We’ll be gone for 12 days. There are a lot things I’m looking forward to, chief among them another visit to the best bookstore I’ve ever been to, which also happens to be a favorite of the horror writer Stephen King of Maine. But what I’m most excited about is a chance to work on my book.
Actually, writing is the whole reason for this trip. I won an Amtrak Residency, meaning that Amtrak wants me to ride their trains and write. This is pretty darn close to a dream job, wouldn’t you say? I’ve purposely kept myself from doing any preliminary work on the manuscript. I want to look at this thing with new eyes on Saturday.
I’ve been anticipating the trip since last July, when one of Amtrak’s representatives left a voicemail asking me to “Please call at my earliest convenience. Thank you for your time. Have a nice day.”
I remember submitting my application to the residency program in December 2015, and telling my mom how slim my chances were. I had only done poetry at the time, with a couple of minor publications to my name. So when I found out I had been accepted, I could hardly believe it.
Surely there were better writers out there. Writers with professional websites or a B.A. in English Literature and Writing, which is what I would have now if I hadn’t fallen in love with psychology my senior year of high school.
The past couple of months have been tough for me, to say the least. Mainly because of my health, but also because of what’s been happening in the world.
Earlier this year, when my chest was at its tightest, I clung to the knowledge that, in a few short months, I would be out of this town, this state. I wouldn’t be landlocked, either. I might get to see the sea only in passing, but it would be better than what I had now.
So every day I survived was another day closer to this dream. My reason for living, it seems, was my residency — not an altogether healthy situation. I wanted to figure out exactly what was wrong with me before we left so I could feel . . . normal. So I could feel like I used to, before all this started.
Actually, I do know what’s wrong with me, but I’m not feeling like I used to. The eye drops I’m using are helping, but as I’ve told my dad, my personal care assistant and my friends, I don’t think they’re fixing anything. They’re for maintenance — nothing more.
So now I am faced with the reality that I will continue having to live with this thing – this sickness inside me — and the reality that this body will not survive forever. My new normal, as the saying goes.
It’s ironic, really. I’ve never considered myself healthy. But now that things have changed, I find myself desperately wishing for a better body, the body I used to have. Which means I have to ask myself if the fight is still in me. If life as a sick person—and that’s what I am now in ways I never was before — is worth living. Or whether I should give up.
The answer, of course, is yes to living. . . and no to giving up. So in many ways, this trip won’t be just a trip. It will be a learning experience for me, and my family, as I navigate the realities of chronic illness.
We’ve been on a train before, but only for an hour or so. This trip will be an adventure, with the “handicapped sleeper cabin” just one feature of it. Stay tuned.
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.