After 29 years of living with SMA, my body doesn’t know how old it is
My physical state has never quite matched my numerical age
Written by |
A smiling stranger was quickly approaching us in the line to order our food, and she looked intent on talking to me. I didn’t recognize her. Had I forgotten who she was?
I shouldn’t have worried. We didn’t know each other, and what followed was the normal, cringeworthy kind of encounter I’ve had with countless people throughout my life as a disabled person.
“Are you having a good day?” she asked in a singsong voice typically reserved for babies and small children, to which I replied that I was. “And now you’re going to have some lunch,” she sweetly declared.
I think she might have patted my arm before departing, but I was preoccupied with cycling through witty comebacks and keeping them to myself. After all, she wasn’t trying to be rude. Even so, I later decided that the best one would have been, “Yes, and what brings you to this restaurant?”
Mom and Grandma gave me looks that told me they knew exactly what I was thinking and feeling, and Grandma offered a thumbs-up in support of my patient handling of the situation when the other lady turned away. We’ve all seen this a thousand times, and there’s not much to be done except roll our eyes and laugh together.
Physical ability doesn’t always reflect age
I can’t really blame people for thinking I’m younger than I am. I have a rather small build with soft features, and the contrast of my large, angular power wheelchair makes that more pronounced. Still, I don’t look like a toddler, nor do I appreciate being treated like one. (No offense to toddlers. They’re quite interesting conversationalists.)
I will never understand why people often associate visible disability with a lack of intelligence, awareness, or capability. I see no reason to assume such things about anyone, especially someone you’ve never met and know nothing about. I find that this behavior, known as infantilization, comes across as careless, even when well intended, and it deprives everyone involved of an opportunity for positive, meaningful connection.
To be fair, I did stop achieving typical physical milestones before 6 months of age. There was no crawling, walking, or independent sitting for me. My body had the muscle tone of a ragdoll and still does. That’s normal with SMA type 1, and I’ve even seen my condition classified as “floppy infant syndrome,” despite the fact that I haven’t been a baby since the previous century.
But just because my physical abilities stopped progressing in infancy doesn’t mean my mind or maturity did. I need the level of physical care that an infant would, but I understand my surroundings and the way people talk to me to the same degree that you’d expect of an average adult, which means, yes, I’m painfully aware when someone is using baby talk with me.
Relating to older generations
On the flip side, there are also times when, health-wise, living with SMA isn’t dissimilar to having a much older body than I actually do. I swap recommendations for doctors, medications, and natural remedies with my grandparents, and when they say their symptoms are caused by getting old, I remind them — partly in jest — that I’ve had the same problem for years.
And then there are the times when products geared toward older adults could also fit my needs. If you’re over a certain age, a commercial’s narrator suggests talking to your doctor about some vaccine or assistive device, but as a young person with compromised health, I could benefit, too.
The similarities don’t stop there. My back isn’t straight, I get around in a wheelchair, how I’m feeling can predict the weather, my feet get cold easily, and like my friend and fellow SMA News Today columnist Brianna Albers, some of my joints pop in ways that freak people out, including most medical professionals, whose best advice is not to do that on purpose. You can read about Brie’s odd joints and her friends’ reactions in “My Body Is Weird — and I Love It.”
And while I’m not old by any stretch of the imagination, I’m almost ancient history for someone with SMA. I’ve lived long enough to witness advancements that weren’t expected in my lifetime, especially considering that was estimated to be only three years. My generation is so far the largest in the SMA community to reach adulthood, and growing up, I knew so few SMA adults that I could have counted them on my fingers.
Tomorrow is my 29th birthday. My mind knows that, but my body is a little confused. It’s always existed in a physical state that doesn’t quite match my numerical age, so I can understand why. Regardless, it’s another miraculous day, and you’re never too young or old to celebrate.
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.
Leave a comment
Fill in the required fields to post. Your email address will not be published.