Some of my greatest fears with SMA might surprise you
Disease progression and symptoms are spooky, but not at the top of my list
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The 1990s cartoon “Batman: The Animated Series” remains one of my favorite shows of all time. Its mature storytelling and noir aesthetic left an impression on me as a kid, and even today I regularly rewatch episodes. Sure, I love to see my favorite superhero go head-to-head with his greatest foes, but I also love the intrigue, the character dynamics, and the emotional beats woven into each storyline.
In the classic episode “Nothing to Fear,” the Scarecrow poisons Batman with his toxic fear gas. The gas causes people to witness their most prevalent fears, and Batman’s turns out to be deeply psychological. He doesn’t see the Joker or any of his other adversaries running around and wreaking havoc on Gotham City, but rather he sees visions of his late father expressing his disappointment toward his son. Unable to use his fists or detective skills to win this fight, he must confront his fears and recognize his inner strength, leading to one of the most pivotal scenes in the character’s history.
Just as Batman’s greatest fear isn’t necessarily what fans expected, fear can also look different for people like me with SMA. Though disease progression and symptoms are still spooky, they aren’t at the top of my personal list of greatest fears. I’m just as accustomed to dealing with medical complexities as the Dark Knight is to sending criminals to Arkham Asylum.
As Halloween approaches, here are some things that scare me and others with SMA that others might not think about.
Shaking hands with strangers
This may seem odd, but I dread when someone reaches out to shake my hand. What is generally a polite gesture inevitably leads to an awkward scenario in my case. Due to the progression of my SMA, I am unable to lift my hands even an inch in the air. When someone extends their hand to shake mine, I have to immediately explain that I cannot move my hand or arm adequately.
Most of the time, I dismiss the awkwardness of the situation by telling the other person to fist-bump my JACO robotic arm instead. This leads to a much cooler encounter and allows me to tell the story of how I acquired this device.
However, the worst is when the person doesn’t just extend their hand as an invitation, but immediately shakes the one I use to drive my wheelchair. When this happens, I immediately worry about losing control of my chair or having to reposition my hand. Every morning, I have my caregivers meticulously position my right hand on my chair’s joystick, and the slightest movement can throw me off balance.
This exact scenario played out this past summer when I was in Orlando for the annual Cure SMA Conference. I was out at dinner with another SMA friend, and as we were leaving, the restaurant manager did what he thought was a kind gesture. He shook my driving hand, which then slid it out of position. Fortunately, the friend I was with had enough arm strength to help me reposition. Disabled people are good at helping each other out.
Clueless doctors
I’m grateful to have a phenomenal healthcare team, and I’ve been lucky over the years. Still, there’s nothing quite as dreadful as when a doctor says that they’ve never heard of SMA. Though not every physician needs to be as knowledgeable as my specialists, it’s more comforting when they have at least a Wikipedia-level understanding of my disability.
The same applies when healthcare workers have never used a Hoyer lift and it’s time for me to transfer. When I go to the hospital for my Spinraza (nusinersen) injections, I dread the transfer process more than the actual procedure. In these scenarios, knowledge and communication skills go a long way in alleviating my fears.
Caregiving-related fears
My fellow SMA News Today columnists and I have written about this subject numerous times. We dread when great caregivers leave and we have to search for new ones. We dread the thought of not finding anyone willing to work with us. And we dread the feeling that we are too much of a burden on others. No matter how many times we remind ourselves that the latter is always false, and no matter how many times other people remind us that we are not burdens, internalized ableism is often relentless. It’s the equivalent of the Scarecrow’s toxic fear gas.
When this opponent does persist, I just have to remember to embrace my inner Batman.
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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