Having SMA Means Watching Your Weight, but for Other Reasons

“I hate to say it,” my dad said, “but you’re getting a little heavy.”

A miracle, really, when you consider my base weight of 50 pounds. I was a baby for the longest time. A young adult in a preteen body. One of my biggest challenges in middle school was finding clothes that fit me — my peers were flaunting their Hollister purchases, and I was limited to the little girls’ section at every department store.

Nothing fit. Not even the brightly colored polo shirts that were all the rage in seventh grade. My mom and I scoured the shelves of Hollister looking for something that might possibly fit if we pinned and tucked and prayed.

(If you’re unfamiliar with Hollister, consider yourself lucky. A wildly popular sub-brand of Abercrombie & Fitch, Hollister is known for loud music, dark corners, and perfume you can smell halfway across the mall. You know my mom loved me because she never once complained about the countless hours spent in the dingy, Hades-adjacent pit of our local Hollister store — a nightclub on prepubescent steroids.)

Then I got a G-tube. I filled out a little — and by a little, I mean an additional 15 pounds. I graduated to shopping at Aéropostale, American Eagle Outfitters, even Delia’s. I grinned every time I told a nurse that I was, in fact, 60 pounds, thank you very much.

A miracle! Thanks, G-tube.

Fast-forward 10 years. The coronavirus has thrown the world off-kilter. I’m days away from submitting my final assignment for graduate school. My home state is sheltering at home. I’m revising the first draft of my book, #WaxingCrescent, albeit slowly — I’m new to the editing process.

I have a lot of time on my hands. Which means I’m eating, a lot, half to kill time and half because I’ve discovered the best chocolate bar in existence.

Enter my dad: “I hate to say it, but you’re getting a little heavy.”

Eighty-five pounds and healthy. (Photo by Brianna Albers)

(I just told my dad that I’m writing a column about my weight, to which he snarked, “You’re not heavy. You’re just getting heavier.”)

Heavy, heavier. Po-tay-to, po-tah-to.

I haven’t weighed myself in a while, but if I had to hazard a guess, I would say I’m somewhere between 80 and 85 pounds. My bones don’t look like they’ll snap at the slightest breeze. I have curves, which is wild, and an entirely unexpected consequence of quarantine.

Joking aside, I’m healthy. (Health is not synonymous with being of “an average weight.” In fact, the concept of obesity is skewed against people who score higher on the body mass index. Heavy people can be perfectly healthy.) But I’m also heavier, which complicates all sorts of SMA-related things, from transfers to dressing to middle-of-the-night adjustments in bed.

I spent years inhaling calories. My parents took every opportunity to “fatten me up,” from slipping yogurt and brown sugar in my oatmeal to putting shredded cheese on everything. Fat was good. Fat meant I was healthy and would stand a chance the next time I was hospitalized. Now I’m scrambling to cut back on treats, and not just to spare my dad’s back.

Fat is good, but fat also weighs me down. I can’t move my arms if they’re too heavy.

Now more than ever, I’m aware of my privilege. Millions of people around the world are applying for unemployment. They don’t know how they’ll feed their families, let alone themselves. Candy bars are the furthest thing from their minds, and rightly so.

I don’t know how to reconcile my reality with the reality of others. But if there’s one thing graduate school has taught me, it’s that both are valid.

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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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.