Welcome to ‘Wandering the Lines,’ Our Journey Into the Unknown

“I wish I were normal,” I used to say to my mum.

I told her this at other kids’ birthday parties, when they played musical chairs or went on scavenger hunts. I said it during emergency hospital stays and in front of the TV, when I dreamed of becoming an actress. It was a common refrain any time I was reminded that I would be excluded from wider society because of my body. 

Without fail, she’d always reply, “You are normal, Sherry.”

Also without fail, and with the limited vocabulary of a child, I’d whine, “I’m not. You don’t understand!”

To my mum, all I needed was a little help, which she, my dad, and my little brother provided. In her eyes, that was enough to make me as normal as kids who didn’t have SMA.

But in my eyes, those kids didn’t need their mum to fetch scavenger hunt items for them. They didn’t miss “High School Musical 3“ in cinemas because they couldn’t cough up phlegm. Kids who didn’t have SMA would grow up to be beautiful people with straight spines. They would be cast in summer blockbusters and accepted and loved by millions.

I wanted to be like everyone else, to fit in and conform to the ideals I was sold, or at least have the choice. SMA has made that impossible since I was 6 months old and couldn’t roll over on my own.

I’ve wrestled with my body in moments of anger and despair my entire life. But living with SMA has also taught me that ideals can be illusions, and there is no such thing as “normal.”

In hindsight, this realization is obvious. Even when I was diagnosed at 13 months, I didn’t fit the “typical” profile of a child with SMA. I lacked many symptoms associated with the disease, such as tongue fasciculation. Doctors were stumped. They told my parents I was fine for months, until a general practitioner referred us to a neurologist for a biopsy.

The scar on my thigh became a tangible reminder of the irony that I was excluded from my able-bodied peers for being “too disabled,” and from my SMA peers for not being “disabled enough.”

Try as we might to create ideals, boxes, and rules, humans are complicated, messy beings. I wish I could tell Little Sherry that. I wish I could tell her that she’d find communities of people who felt like outsiders looking in, and who were learning to be OK with their messiness, just like her. 

So, when I was tossing around possible titles for this column in my head, I knew that mine should celebrate bending and breaking the rules. It should be a signpost that welcomes people and represents where I am in life. It should also be a play on words to show my love for the fluidity of language in musicals and poetry. Putting a cheeky twist on “toeing the line” or “walking the line,” idioms that mean conforming to standards or authorities, felt like the perfect starting point.

“Wheeling the Line” was briefly a contender, but it didn’t have the same ring to it. It’s confusing, and it sounds like I’m wheeling an object of measurement somewhere. Not the best imagery. Plus, it doesn’t say anything about my past, future, or how I arrived at my present. 

I’ve always existed in a state of uncertainty and questioning. I’ve wandered along lines into the wonderful, terrifying unknown, trying to figure myself out. I’ve tried to figure out which side I’m going to land on, and if I need to land on a side at all. I’ve crossed those lines if needed (within reason, of course; I’m too afraid of confrontation to cause conflict on purpose), and I’ve loved and admired people who have done the same.

I don’t know where I’m headed next, but I know it’ll be, shall we say, different?

I’d be honored if you’d join 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.