In most superhero comics, movies, and TV shows, there’s usually an arc at some point in which the hero temporarily loses his or her powers. This happens in “Spider-Man 2,” “Supergirl” (season two), the first “Thor” movie, and in issue 12 of the comic book crossover “Crisis on Infinite Earths,” when a blast of anti-matter energy strikes Kid Flash. Granted, these things never last, but they make for interesting storylines as our heroes must come to terms with losing the things that make them extraordinary.
Likewise, when a piece of technology that an SMA person depends on malfunctions or breaks down completely, the feeling is comparable to Thor losing his hammer or Wolverine losing his healing abilities. Whether it’s a wheelchair, a Hoyer Lift, or in my case, a robotic arm, having any of these devices falter is like having a superpower stripped away.
My JACO robotic arm, which I’ve written about multiple times in the past, is currently under repair for internal software problems. Fortunately, I have a loaner right now from the company that works great, but before that, I had to go a full week without one at all. And yes, it sucked.
When my arm first began having issues, the technician I was corresponding with wanted to see if he could identify the problem and fix it remotely to avoid the hassle and expenses of shipping the arm back to the company’s headquarters in Canada. I agreed that this would be the best option, and we tried everything from changing data cables to rebooting the whole system. Unfortunately, nothing we tried worked, and we eventually resorted to sending the arm back and getting a loaner.
In that time that I was without a functioning robotic arm, I had no choice but to rely totally on other people for things like eating, drinking, and picking things up. The day I received my JACO arm in December 2015 not only made me feel more independent, but it also made me feel more human. To be able to feed myself liberated me beyond words, and as such, it’s debilitating when I’m without this device. Thankfully, I only had to go a week without it, but it was a long week.
It’s common for people to say things like, “That must be like your car breaking,” when an SMA individual has issues with their wheelchair. The reality is that when our wheelchairs or robotic arms mess up, it’s the equivalent of an able-bodied person’s legs and arms not working. People don’t realize just how dependent we are on devices and technologies in our everyday lives.
The only option we have in these scenarios is to multiply the level of reliance on other people. With the arm, I remain pretty independent during the day; without it, I have to arrange my eating schedule around family and friends. I’m fortunate to have great people in my life who will drop whatever they’re doing to help me, but the ego in me hates having to depend on them.
It’s never fun or easy when any of my equipment malfunctions, but I always make do. Adaptation is something all of us with SMA are well-accustomed to, and it’s our ability to adapt constantly that makes it hard to bring us down.
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.