A few weeks ago, my mom and I went to Junk Bonanza, a vintage market that’s held twice a year at the local horse racing track. I feel twice my age while I’m there, but it’s a chance for Mom and me to go antique shopping together.
One of the stalls had an adorable little entrance that reminded me of “It’s a Small World” for grown-ups — specifically grown-ups who are fans of HGTV’s “Fixer Upper.” I was perfectly content, lost in my own little world of dreamy interiors, when I noticed an elderly man staring at me.
I’m used to stares. And for the most part, I’m fine with it. Sometimes, if I’m feeling daring, I stare right back. But I was too inundated with old, expensive things to care, so I ignored him.
Then he said, “You’re brave.”
I pretended I didn’t hear him. And maybe I shouldn’t have. Maybe I should’ve appealed to my highest self and said thank you. Maybe I should’ve taken him aside and explained that you don’t generally call a stranger in a wheelchair brave in the middle of a vintage market. But I was hungry. I was nursing a headache and overwhelmed by the sounds and the crowds and all the shiny, expensive things.
I kept moving. And he said it again. Again. “You’re brave!”
If you’ve stayed at a Holiday Inn Express, you’ll know that all sorts of people take advantage of continental breakfasts. It’s not the best food in the world, but it is free. It’s also warm and hearty. It keeps wimps like me from throwing up on an empty stomach. A minimum of two TVs are playing at any given point, which usually means I get a taste of what the local news is like.
That morning, Mom fed me oatmeal as I stared bleary-eyed at my phone. Dad was enjoying his yogurt in silence. Then I felt someone’s hand on my head.
“I hate seeing someone worse off than me.”
I tensed immediately. I don’t remember if I gritted my teeth, but I’m sure that if I didn’t, I did in my heart. I didn’t respond, partly because I didn’t know what to say (“Thank you?”) and partly because I didn’t trust myself to open my mouth. My parents jumped in, somehow managing to keep the conversation pleasantly neutral.
Then, just like the man from Junk Bonanza, he said it again: “I hate seeing someone worse off than me.”
I stared at my phone, ate my oatmeal, and seethed.
I’ve been writing this column in my head for weeks, ever since I found that Instagram story in my backlog of photos.
It’s a delicate matter. And the last thing I want is to sound ungrateful. I’m sure the man from the hotel didn’t say that just to sour my oatmeal. I’m sure the man from Junk Bonanza didn’t see me in my overalls and Keds and think, “Can I ruin that woman’s day through an innocuous interaction that will stick with her for weeks to come?”
It’s like Mom says: “Assume positive intent.” But some days it is stupidly hard.
There are things I could’ve said, rebuttals that my highest self would’ve provided if she hadn’t been so taken with all the shiny things. I’m not brave for living my life. Or maybe I am, but that’s not something you’d say to someone with legs that work, so why are you saying that to me?
Don’t assume the girl in the wheelchair is worse off than you. It doesn’t matter if her mom is clumsy and dribbling yogurt down her chin. You don’t just say things like that. And why do you say it over and over again? Why do you stop me in the middle of what I’m doing to insist that I hear you? Why do you feel the need to be heard?
Then, in a quieter voice: Does it matter? My frustration, my annoyance, the hours I spent poring over those interactions like a clock that can’t stop ticking? If they mean well, do my feelings matter? The messiness of it, my grief and rage. All the times I bite my tongue.
Then, the part of me that will always want to be a therapist, in a voice that brooks no argument: Your feelings are valid.
I am trying to assume positive intent. But it’s hard.
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.