This is Hard to Swallow, a new column by Kayla Whaley about nourishment, disability, and adjusting to life after a sudden and massive dietary restriction.
The nutritionist’s office is in a high-rise around the corner from where my mom works. To get there, Dad and I have to drive by the donut shop Mom’s coworkers favor, nestled in a small shopping plaza beside a main intersection. If this were a few months earlier, I’d have had Dad swing in and pick us up a dozen donuts, whichever the person behind the counter recommended. But a few months ago, back when I could still swallow solid food, I wouldn’t have had an appointment with a nutritionist at all.
I’m the only patient in the waiting room, a small perfect square with dark paneling. The receptionist takes my information. “Bear with me,” she says. “We just got a new system and I haven’t quite figured out how it works yet.” I tell her I don’t mind. I don’t tell her that I can relate; I haven’t figured out how my new system works yet, either. That’s why I’m here.
The nutritionist, a short man with a paunch and overgrown stubble, is pleasant but aloof, like a distant relative you see every few years. The wall behind his desk is all window, but somehow all that sunlight makes his office feel even dingier. I give him the whole spiel: how my swallowing muscles have weakened; how I can’t eat solid food anymore; how I’ve barely eaten anything in over a month and have lost twenty pounds. Dad, sitting beside me, lists what I’ve been surviving on: mashed potatoes, yogurt, pudding, tomato soup, ice cream. The nutritionist listens intently, nodding and hmm- ing along.
“We need help,” I say. “I need a new way to eat.”
He nods again. Then he says, “I’m assuming you want to lose some weight while we’re at it, right?”
I’ve never known whether to call myself fat or not. My ribs and stomach arch forward due to scoliosis, so my belly button touches mid-thigh when I’m sitting upright. My ass, meanwhile, juts out in the opposite direction, round and wild. My legs and upper arms are pure fat, given how few muscles I have to begin with. Even my ankles and feet are perpetually swollen, like little cherub feet never meant to touch the ground. But in terms of actual weight, in terms of a number, mine never seemed high enough to “count” as fat.
To use Roxane Gay’s phrase, I might be “Lane Bryant fat,” except that none of those clothes work for me. Growing up, my wardrobe was mostly pajama dresses and maternity dresses, because those were easiest to get on and off of me. My parents bought whatever was extra-large, stretchy, and long—sacks of cloth, essentially. Sometimes they came in pretty colors or had an interesting neckline. Sometimes I liked them. Sometimes they almost fit me, despite my body’s strange angles.
When I was in fourth grade, about to have my spine fused (a major surgery wherein metal rods are screwed into the spinal cord to straighten and stabilize it), my doctor warned me that I’d “no longer grow up, just out. ” When I was fourteen, my dad off-handedly said if I weren’t disabled, I’d be “tall, thin, and gorgeous.” He meant it as a compliment, and, at the time, I took it as such.
When the nutritionist asks if I want to lose some weight while learning how to nourish my body on a severely limited diet, I say, “Definitely.” If I can’t have food anymore, at least maybe I can have a thinner, more normative body. We leave the office with a calorie counting and portion-size guide, a small food scale, some protein powder samples, and instructions on how to turn chicken into a liquid. Either that day or the next, we swing by Walmart to buy a good-quality blender and a food processor. Then I’m ready to start experimenting.
Most of my focus is on smoothies and soups. The former is simple enough on the surface—throw a bunch of stuff in a blender and drink—but the trick is figuring out how to bulk up the protein content while coming up with a variety of flavor profiles. Protein powder is a no-brainer, but which kind? There’s a whole wall of options at the grocery store filled with different brands, flavors, and grams per serving, with names like Muscle Milk and Combat and Body Fortress. They’re intended for muscle-building or weight loss or weight gain or strength training or fat burning.
The fruits and veggies are easier to decide on, but present unexpected problems when blended. Berries, especially strawberries and raspberries, make for seed-heavy smoothies—seeds that swirl around my mouth, refusing to go down. I drink these with a napkin beside me to pick the bits from my mouth between sips. Mangos and peaches leave strings floating throughout like jellyfish tentacles. Kale blends better than spinach, but wilts faster in the fridge, a waste of money. And using V8 juice as the liquid agent, while a great idea in theory, is one of the worst decisions of my life, 0/10, would not recommend.
Experimenting, though, is fun. I’ve never been able to cook for myself, so I’ve never had a chance to play with food. I still can’t physically make the smoothies myself, of course, but I direct their construction, from choice of ingredients to the amount of each added to how long each drink is blended. Having full control over my food is intoxicating. And once I discover the joys of silken tofu, peanut butter, and fresh avocado, my smoothie-making is officially next-level.
Healthy food was never a major part of our family’s diet. Most of our meals consisted of meat (beef, chicken, and pork, primarily) and carbs (rice, bread, potatoes). If we did have a vegetable, it was usually frozen and cooked with a generous amount of butter. Fruit wasn’t unheard of, but it wasn’t common in our kitchen; we never ventured far from apples and grapes. Now, produce is suddenly the foundation of my diet instead of an occasional surprise, and my body responds gratefully. One day, as we’re making my morning smoothie, I tell Dad I’ve never felt so energized, so fully awake, like my body has been operating on half-power all this time. Granted, it’s possible this gleeful energy is more because I have essentially just come out of starvation mode, but I imagine my body is also pleased to finally have something fresh and healthy to digest.
But delicious though they are, drinking three giant smoothies a day becomes both boring and exhausting. Swallowing so much liquid drains me of energy. I’m sometimes barely able to get anything down at all by the evening, no matter how perfectly liquefied the food. As it turns out, the serving sizes the nutritionist recommended were unreasonably large for me to manage (more fruits and veggies means more mass for me to ingest), while his daily calorie target was super-low. My body may not burn many calories during the day due to my “sedentary lifestyle,” but 1000 calories simply isn’t enough to keep me going.
Years ago, I bought a fish scale that weighs via gravity, the kind used to weigh hundred-pound groupers or giant tuna. The fish is placed in a net of some kind and hooked to the scale, where it hangs in the air, its weight pulling on the hook that moves the dial. Since I can’t stand on a scale to weigh myself, Dad suggests this as an alternative. We attach the scale to my Hoyer lift (what we use to transfer me in and out of my wheelchair) and I hang in the air, cocooned in my sling, while Dad reads the dial.
The first weighing confirms what Dad had guesstimated based on the times he’s physically picked me up himself: I’ve lost about twenty-five pounds since this began. This gives us a base number to work with, something to monitor.
The next week, I’ve lost another pound. I’m thrilled. In my college health class, we learned that losing one pound per week is the healthiest way to approach dieting. More than that and there’s a problem. This feels like progress.
The next week, half a pound. Maybe a quarter. (It’s hard to get an exact reading because my body swings so easily in the air, and Dad has to lean in close at an awkward angle to see the dial’s face, sometimes brushing against the sling in the process, sending me off-center again.) I’d been hoping for another full pound gone. I tell Mom I’ve only lost half a pound. “Only?” she says. “You’re supposed to be gaining weight back, not losing more of it!”
I can’t explain to her why this feels like an opportunity—a chance to start over, maybe. Or at least to refine myself, polish and push myself toward beauty. Dad maintains that a lower weight is healthier, full stop, so of course I should be trying to lose more. I’m grateful for his back-up, even though it tastes sour somehow.
The next week, no change.
The next week, no change.
The next week, half a pound up.
The next week, no change.
My body seems incapable of either gaining or losing any more weight. Mom’s relieved. Dad’s satisfied that this is my “ideal” weight, where my body naturally wants to be. I’m disappointed, and angry for being disappointed. I should be happy I’ve stabilized, shouldn’t I? This is a huge victory. But I see how much slimmer my face looks in the mirror—and then I see how much slimmer it still could be, and I wonder if I’ll ever be satisfied.
One of the more common traits of people with Spinal Muscular Atrophy is an extremely thin frame. It’s right there in the name: atrophy. We have so little muscle mass, we’re often skin and bones (though usually with a round belly due to spinal curvature).
I never looked like the other kids with SMA. I was always chubby, fleshy in a way they weren’t. I envied them. I eventually learned that being underweight, especially to that extent, is a major concern for most of us, and leads to all sorts of complications. I know this, and yet I still can’t quite believe that it’s a bad thing. Not deep down, where believing counts.
After my weight evens out, after we’re sure I’ve reached a new normal, I realize that if I had been underweight to begin with—or even average weight—that much weight loss would have been even more dangerous, possibly life-threatening. The only reason I was able to last those first months without solid food was because I had a built-in buffer. My fat protected me. When my muscles could no longer swallow, when I couldn’t get the nutrients and calories I needed, my fat held me close and kept me safe.
I am not immune to hypocrisy, to contradiction. Sometimes I still have difficulty looking in the mirror. My size and shape can unnerve me, like I’ve forgotten my appearance, like it doesn’t match my concept of “me”-ness. Sometimes I prod at my fat, jab hard, pinch, am utterly without gentleness. Other times, though, I touch my body’s softness and am grateful to be housed in such comfort.
In the last month, my fingers have gotten chubbier at the base. My rings, which I’ve worn for a decade, grew uncomfortably tight, so I removed them. Allowed each of my ring fingers to feel the fresh air, to puff back out and rid themselves of the indentations left from metal bands. I miss the wide, silver pattern of one, the faux sapphire of the other. They added an elegance to my hands. But they didn’t add much of me. I’d only chosen them because they were the first rings I’d ever found that fit well on my strange, stubby fingers. They became an expression of my personality, I suppose, but only because I wore them so long. I never bothered to look for any others I might like better. Maybe now I will.