Mama, It’s Amazing What SMA Patients Can Do: A Reminder of Our Adaptability

Sherry Toh avatar

by Sherry Toh |

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My neurologist presses his stethoscope to my chest. He’s performing a routine checkup; it’s a mere formality, really, so I can be sent home with my prescription for gabapentin refilled. It’s over as soon as I breathe in and out and he has ascertained I am as healthy as I was a year ago. 

“Good,” he says, satisfied with the clarity of my lungs. He hooks his stethoscope back around his neck. I expect that to be it, the end of my visit and the start of our goodbyes. He and my mum discuss my chronic neuropathy and scoliosis as he pens his notes. 

Then he pauses. There’s worry in his old eyes. I hear nervousness in his chuckle. 

He turns to me and says, “Sherry, your heart has moved from your left to your right.”

I blink at him. My mother, God bless her, articulates my shock for me. “Huh? How can that be?”

“It’s the degree of her curvature,” explains my neurologist. He draws a vague S shape in the air, the shape of my body. “Her organs have all shifted.”

My mum nods. Her expression echoes the regret of my neurologist’s, for how far my scoliosis has progressed and their inability to correct it. 

They return to their discussion of my health and make small talk. I’m eventually given my prescription to collect at the pharmacy, and my neurologist bids me a friendly and casual goodbye — as if he hasn’t just told me my organs aren’t where they should be. 

It’s not like I was completely unaware my scoliosis could be that severe before the visit. It’s the presumed reason behind my neuropathy’s onset and my need for a pain prescription. (My doctors aren’t 100 percent sure, but said it’s likely; I can feel some relief when my posture is adjusted, despite the CT and MRI scans I’ve done not explicitly revealing the cause.) And I can think of other signs of my scoliosis’ severity, such as the stomachaches caused by my ribs pressing into my abdomen, and said stomachaches causing breathing difficulties and hospitalizations. 

But until my neurologist verbalized the reality of my body, it remained a hazy, inconsequential thought I could dismiss. After he pointed that reality out, it crystallized and became sharp and frightening.

Nevertheless, I take the train home. I go on with my life. My body continues to function, as though it was always meant to function under anomalous circumstances. Over time, the edges of my neurologist’s words are blunted and I forget about the visit.

It’s only a couple of years later that the memory resurfaces, when I am faced with another frightening truth: My family has decided to move out of our home and rent a new place.

On the surface, moving may not be that big of a deal. Especially in Singapore, where you can take the train from one end of the island to the other in under an hour. And we will be moving back to our family home once my brother graduates junior college. But I’ve lived here for over 16 years. My brothers and I grew up in this place, our habits and daily expectations molding themselves to the environment, neighbors, and shopkeepers around us. It’s not just my sentimentality that makes the move frightening, it’s the knowledge that it will take time and effort to adapt old routines to new surroundings.

But that’s one thing SMA patients have become so good at, isn’t it? Adapting. Whether it’s neuropathic pain, social plans messed up due to hospitalizations, or moving to a new place, we adapt. We continue to function. We go on.

This may be one of the few times I’m grateful for my body, with all of its strangeness. I may even think it’s kind of cool. Because if it can adapt to my organs shifting, then maybe I can look to it for strength when new situations dictate that I must shift myself, literally and figuratively.

To prepare for the move, I’ve been reminding myself of that strength by listening to “What Baking Can Do from the musical, “Waitress.” It’s sung by the titular waitress, gifted pie-maker Jenna, as she tries to figure out how she’ll adapt her plans to account for her sudden pregnancy through baking. 

“I can fix this,” Jenna tells herself. “I can twist it into sugar, butter covered pieces/ Never mind what’s underneath it/ I have done it before/ I’ll bake me a door to help me get through/ I learned that from you/ Mama, it’s amazing what baking can do.”

Reader, by the time you read this, I will be waking up in a new home, singing Jenna’s words (with my personal twist) on a new day. And I will adapt. I will function. I will go on.

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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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