SMA Is Part of My Identity, and I’m Proud of It
A columnist offers a master class in how to respond to insensitive comments
I came close to starting my first-ever Facebook war recently. Well, not exactly. My conscience quickly kicked in and my mother became my sounding board instead. After reading a comment from a stranger on the internet, I had a lot to say.
Sadly, I’m almost immune to the negative feedback I receive on social media. Although thankfully, it isn’t frequent, choosing to put my life on display means I’m bound to encounter people whose comments are opinionated. And that’s putting it nicely. Even though I know these types of comments carry no weight, I’m still human. Sometimes they hurt.
This particular comment told me I was lying about my SMA diagnosis. Based on my appearance and the medical equipment I was or was not using, they determined that it wasn’t possible I had SMA type 1.
Needless to say, I was taken aback. No one had ever accused me before of lying like that, nor did I ever expect something like that to happen. Are there people in the world who actually lie about their SMA diagnoses?
What surprised me the most, however, was not the comment itself but how I reacted to it.
This is who I am
My story began at 3 months of age, when my parents noticed I wasn’t rolling over. I also had tremors in my hands. After several trips to my pediatrician and neurologist, a biopsy showed I had SMA type 1.
To recount the last 32 years would require much more than this column. But on that fateful diagnosis day in 1991, SMA type 1 became part of my identity. Every illness and hospitalization refined my inner strength and taught me the meaning of resiliency. The help I received from others, whether it was a friend, family member, or caregiver, taught me the importance of community. The ableism I experienced in the form of inaccessible buildings or doctors who were unwilling to meet my needs taught me how to advocate for myself.
The reasons are endless, but what it comes down to is this: SMA has influenced so many areas of my life. And in turn, it has become deeply ingrained in who I am.
Realistically, the comment shouldn’t have bothered me the way it did. But the words were hurtful.
I have the most severe form of SMA, and my body lets me know it. Reading something that said I didn’t have type 1 almost felt like my struggles and lowest moments were discounted.
Frankly, there are days when I wish I didn’t have type 1. There are days when I wish I had more arm strength to feed myself or drive my own car. There are days when I wish I had a little more energy and stamina so I don’t crash by the afternoon every day. But my diagnosis is a part of who I am, and I don’t want to wish it away, either.
I’m proud of the life I fought for while living with SMA. (Also, let it be known that I would never lie about my diagnosis.) And while I may not be able to control what strangers on the internet say about me or accuse me of, I can continue to live my truth.
Everyone with SMA, regardless of type, is unique in their own way. And that includes me.
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.
About the Author
Comments