I’ve Learned That My Body Requires Balance

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by Kevin Schaefer |

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Do you sleep in your wheelchair? 

This is a question I used to get all the time in middle school. I always thought it funny that some of my peers genuinely thought that I remained in my chair around the clock, using my headrest as a pillow at night. Imagine if I tried showering in this thing. 

Still, as I’ve gotten older, I’ve spent more and more time in my chair on a daily basis. When I was in my early elementary school years, transferring out of my chair was significantly easier. My aides lifted me out for bathroom breaks, physical therapy sessions, and naps in kindergarten. It seems like an eternity ago, but I remember crawling all over the floor and letting people who weren’t my parents transfer me. 

I did physical therapy at school for a little while, but that didn’t last long. As I grew, it also became too difficult for aides to transfer me to the bathroom. From that point on, I started wearing Depend underwear so that I could go whenever I needed to. Adult diapers are lifesavers for wheelchair users! 

By the time I was sitting in my chair throughout the day, my respite came when I got home from school. As soon as I got home, my mom transferred me to my bed to change, and I’d often stay there for at least a few minutes. After eight hours of sitting in a fixed position, I had to give my body a break

In college, I spent even more time in my chair. Even if I had breaks between classes, I still stayed on campus for the majority of the day, and I was involved in various extracurricular and social activities at night. Editing nights at the student newspaper meant that I was often in the office till 11 p.m. Then, I wouldn’t settle into bed until after midnight. My body probably hated me during this time, but what college student gets to bed at a reasonable hour? 

Now, balancing my time in and out of my chair is even trickier. Ever since I acquired my JACO robotic arm, I have this device mounted to the side of my chair. I also have my wheelchair tray right in front of me, and I use this equipment throughout the day. I need it to prop my phone, laptop, books, food, and more. 

Both my tray and JACO arm can come on and off pretty easily, but the catch is that I have to have my JACO arm removed before I can remove my tray. Because of where the JACO arm is placed, it blocks the tray. In my pre-robot-arm days, all my parents and caregivers had to do to get me out of my chair was take off the tray and lift me. Now, however, the simple act of getting me into bed requires a few extra steps. And since my caregiver comes at night, I rely on my mom for help during the day. 

Alas, I often find myself in a conundrum whenever I want to give my body a break from my chair. Though I love my aquatic therapy sessions, I need a little more relief than once a week. If I sit in my chair for 12 hours straight, all day, every day, my body will hate me. 

In all honesty, I’m still figuring out how much balance my body requires at this point in my life. Due to the aforementioned complexities of my transfer process, it’s just not feasible to get in and out of my chair multiple times a day. I also know that the side effects of sitting too long include pressure sores and prolonged grumpiness. 

A couple weeks ago, I asked my dad to get me in bed early on a Friday night. However, I wasn’t ready to go to sleep right away. Instead, I just needed to lie on my back for a while with my legs outstretched. I stayed there for a couple of hours listening to music on my Alexa device and eventually called my dad back in to turn me on my side and put my BiPAP machine on. 

As it turned out, this little bit of repositioning was exactly what I needed. I slept great that night, and my legs weren’t as stiff as they usually are the next morning. My body may not be as flexible today as it once was, but sometimes all it needs is a little balance.

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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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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