I’ve been home for over a week now from my Amtrak residency, and while I wish I could say it’s been a relaxing couple of days, it hasn’t. I always forget how many things are pushed to the wayside when we’re on vacation. By the time we get back, everything’s a mess. It always takes me a week or two to get things squared away, and I’m about three-fourths through that two-week period. A few more days and I’ll be able to sit back, take a breather, and enjoy the rest of my summer.
I always forget that traveling wipes me out. It happens to everyone to a certain degree, but I know for certain SMA makes it worse. I was fine on the train — in Boston, elsewhere in Massachusetts, and Manchester, New Hampshire — but since I’ve been home, the exhaustion has hit me in waves. My body held up well, all things considered. I think it knew, maybe subconsciously, how important this trip was to me, which is why I’m feeling the effects only now.
One of the worst things about SMA is the knowledge that, over time, the symptoms will get worse, that I’ll lose abilities that used to come easily. I hate to admit it, but even driving has become difficult. Sometimes I think that if I ignore my symptoms, deny them, refuse to give them space in my body, refuse to give them priority in navigating this disease, they will go away. But my trip reminded me how untrue that is.
I can still drive. And according to the people around me, I drive pretty well. I was going through old tweets the other day. A few months ago, three different people told me three different times in just two hours how “good” I was at “driving that thing.” Insert upside-down smiley-face emoji here.
I was actually impressed with how much stamina I possessed on the train trip, even though 75 percent of it was due to caffeine drip. Our last day on the train, we had a four-hour layover in Chicago, and my mom and I walked a couple of miles to a Baskin Robbins. My mom is a fast person—she has a very active metabolism. Or, at least, that’s what my dad and I think. She can stretch her stride to ridiculous lengths when necessary, but I managed to keep up with her. And all the while dodging traffic, keeping an eye out for potholes, people, large cracks in the sidewalk — and yet taking a bunch of pictures at the same time.
But now that I’m home, I can feel myself slowing down. I’m not as active. I’m on my computer most of the day, so when it comes time to head for dinner, I find myself unable to drive. It’s almost like my hand forgets how to—how to grip the joystick, turn corners, back up. And when I go for my daily walk, it always takes me a while to adjust, to remember.
I won’t lie. It’s hard, and it will get harder. SMA is a progressive disease, which means that, as time goes by, driving is going to become more and more difficult. But I still have hope, and I’m grateful for the pluses. SMA is never easy, but my symptoms have been fairly tame, especially when you compare them with, for example, the symptoms of those with Type I, as opposed to Type II, which is what I have. I know people who would’ve never been able to drive—even slowly—the cobblestone sidewalks of Boston.
I’ve decided that, for now, I’ll do what I can, while I can. Which means traveling, and writing my book. It means switching from a Macbook Pro to an HP laptop running Windows 10, because life is too short to “make do” with the Apple onscreen keyboard. It also means going for long walks in the neighborhood, and playing Dungeons & Dragons with my best friends, even though I can’t roll the dice by myself. It also means applying for December 2017 graduation.
Maybe someday I’ll forgive myself for the things I can no longer do.
Please check back next week for Part Two of my Amtrak residency story.
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.