My medical devices aren’t an invitation for people to stare at me
When strangers focus on my equipment, they miss out on getting to know me
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“Alyssa, does this look weird?” my mom said as she popped her head and chest out of the bathroom door. We were getting ready to go to a parade in 100 F heat and humidity. Trying to dress in as few layers as possible was definitely a requirement. However, my mom had been wearing a heart monitor on her chest, and it peeked through her flowy tank top. Since she wasn’t used to wearing visible medical devices, she was a bit self-conscious. I had to laugh.
“Honey,” I quipped. “You’re asking the wrong person.”
Living with spinal muscular atrophy (SMA), I’ve spent my entire life using medical devices that are impossible to hide. My clunker of a wheelchair is a sight for sore eyes. I wear ankle-foot orthoses (AFOs) and a spinal brace, though I try to keep them as hidden as possible for the sake of fashion. And in recent years, I’ve started rocking a feeding tube that comes out of my nose and is taped to my face. None of these things is exactly subtle. I might as well hang a sign from my wheelchair that says, “Hey, everybody! Look at me!”
I’ve grown so accustomed to people staring at me and my equipment that a heart monitor didn’t faze me. Nevertheless, having strangers’ eyes glued to me can feel uncomfortable, so I understood my mom’s point of view.
After all, I wanted nothing more than to blend in when I was growing up. While I knew that curiosity was human nature, there was a difference between glancing at someone and treating them like an exhibit at the Metropolitan Museum of Art. I didn’t want to be the subject of people’s attention. I simply wanted people to meet me before they met SMA.
Instead, I became pretty familiar with the double takes.
Children would point, and although adults knew better than to do so, their incessant staring wasn’t much better. I imagined they were trying to piece together what was “wrong” with me. Or perhaps they felt sorry for me. Regardless of their reasoning, I was always left feeling insecure.
Flipping the script
Today, the staring continues, but it holds less weight in my life. If someone glares at me, I glare back until they avert their eyes. Doing so flips the script. Suddenly, they become the uncomfortable ones and usually look away as if I caught them doing something embarrassing. It’s surprisingly effective.
What I find most ironic, though, is that none of my medical necessities defines me as much as strangers assume. While they’re busy trying to figure out why I have a strange tube coming out of my nose, they’re missing out on getting to know the woman who loves to laugh, is kind and generous, and lives life to the fullest despite the devices visible on and around her body. They’re seeing my equipment before they see me.
Yes, my wheelchair is a gateway to my independence. My AFOs and spinal brace keep me stabilized, and my feeding tube quite literally keeps me alive. But they’re not invitations to stare, and they’re most certainly not the most interesting things about me.
My conversation with my mom reminded me how vulnerable it can feel when something medical is suddenly visible to the world. After a lifetime of navigating wheelchairs, braces, and feeding tubes, I’ve accepted that people will probably always look. Even though I can’t control their curiosity, I can control how much power I give it.
And if they spend so much time studying my medical devices that they miss the person using them, well, that’s their loss.
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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