I’m often told by friends that I’m a pretty chill, go-with-the-flow kind of guy. In my podcast group, I’m the peacekeeper, if and when a dispute ensues among my co-hosts. When I was on the editorial staff of North Carolina State’s student newspaper, I was the guy who helped everyone take a deep breath if we were short on content and worried about missing a deadline.
It’s no wonder that some of my favorite characters in pop culture are Obi-Wan Kenobi, Iroh from the animated series “Avatar: The Last Airbender,“ and Dustin from “Stranger Things.” Something about the wise sage archetype has always fascinated me.
Yet, a deeper reason explains why, especially as an adult, I’m able to retain a sense of calmness in my daily life. Life with SMA requires that I adapt constantly, especially making sure I have the help I need to stay productive and active.
Take, for example, anytime my caregiver takes a vacation. My caregiver and close friend, Randy, works with me throughout the week. But, just like anyone, he needs a break as well. Recently, he took a trip with his girlfriend, which required me to make some adjustments to my routine.
To ensure that he can take a vacation, my parents fill in for him and are in charge of getting me up and ready in the morning and putting me to bed at night, plus helping me with anything I need during the day. It’s not something they dread doing, by any means, but nonetheless, it does require some additional planning when Randy isn’t here. We adapt.
For instance, my mom takes care of my niece during the weekdays while my sister and brother-in-law are at work. And, because she can’t get me up and ready while simultaneously keeping an eye on her 1-year-old granddaughter, she has to get me ready before my sister drops off my niece. My dad leaves for work too early in the morning to handle this part of the routine, and instead is in charge of putting me to bed. Because of this change in our schedules, I’ve been awakened at 7 a.m. for the past few days, which is a painfully noticeable difference from my usual wake-up time of 8:30. I’m not at all a morning person, and would much rather be working close to midnight than be up at the crack of dawn.
Nevertheless, being showered, dressed, and in my chair before 8 a.m. has helped with my productivity. Just this morning, I ate a solid breakfast, did a bit of writing, sent some emails, created several posts in the new SMA News Today forum page, read a comic (“Batman and the Signal #1,” which I tweeted a glowing review of to the book’s creators), and conducted a conference call. I was able to do all of this before lunch!
Another example of having to adapt happened to me last week when I was at a brewery with some friends for trivia. The news had been saying all day that it would snow, but I looked out my window at 7 p.m., and there was still nothing. My local meteorologist is a very nice man whom I’ve met several times, but his predictions are often woefully inaccurate. I said, “Screw it, Greg, I’m going out tonight!”
A few hours later, it did indeed start snowing, and a friend who drove had to take me home early before the roads became too icy. This was especially disappointing, as I had actually managed to answer three questions correctly that night, which was a record for me. I’m usually terrible at trivia; I just go to socialize. One question was about Alexandre Dumas, which would have made my high school English teachers proud. Another was about a 1969 issue of “Batman.”
I say all of this because having SMA requires that I be adaptive. I’m reminded of that awesome moment in “The Dark Knight Rises,” when Anne Hathaway’s Catwoman says to Bruce Wayne: “I’m adaptable,” one of the best lines in the entirety of the Christopher Nolan trilogy. Yes, I’m aware that that’s the third Batman reference I’ve made in this column. I do not apologize.
If I grew aggravated and lashed out in frustration every time I had to make an adjustment in my daily routine, I’d go crazy. Instead, I choose to take things as they come and simply adapt to my circumstances. SMA will always be challenging, but being in the right frame of mind helps make it more manageable.
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.