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.
In retrospect, the months before held plenty of signs. The unusually hot spring night outside Rosa’s Pizzeria when I couldn’t finish my slice because the cheese kept stringing down my throat. Or my little sister’s twenty-third birthday dinner at an overpriced steakhouse when a bite of crab cake stuck, the crispy breadcrumbs scraping along that tender column. I knew I wasn’t choking—this was nothing like the wad of yellow rice that lodged halfway down at El Sombrero in college years before. That had been a plug, suctioned to the full circumference of my windpipe: a sudden and alien absence of air. This was stubborn grit in my esophagus.
The crab cakes were just the appetizer. When my entrée came, I nearly refused to eat. I can’t remember now what I ordered except that it had sounded simultaneously rich and refreshing, like chicken roasted in a lemon-herb cream sauce. But when placed in front of me, the dish looked the furthest thing from appetizing. My food looked dangerous.
Less than a month later, I would be unable to swallow solid food at all.
Before I lost the ability to eat solid food, I was slightly better versed in swallowing issues, or dysphagia, than the typical layperson. One of my friends was training to be a speech pathologist and I was fascinated by the breadth of her studies. I’d expected her to study phonetics and speech disorders, not how to convince a reluctant infant to suckle. Not how to treat aphasia in stroke patients. Not the physiological and psychological mechanics of swallowing. Her mini-lectures relayed over Skype were fascinating. I asked questions, wild or tricky hypotheticals, mostly.
Once, before the crab cakes, I’d asked her something else: “Should I be concerned that I sometimes have trouble eating certain foods?” I’d said it almost jokingly. I laughed during.
“Trouble how?” she’d asked. “Which certain foods? How often?”
She reiterated several times that she was not a doctor and could not give me any medical advice, but she conceded that any dysphagia is, at the very least, not normal. “You might want to see a speech pathologist, just to be safe.”
I didn’t remember our conversation until after the weeks of barely eating, after the tests, after the hospital stay, but I imagine her careful concern was nestled snug in the back of my brain the whole while, just as those breadcrumbs had been stuck in my throat all through that miserable dinner.
Spinal Muscular Atrophy (SMA) is one of the more common neuromuscular diseases, with about 1 in 10,000 infants born with the disease. The degree of severity, presence of various symptoms, and prognosis all vary wildly from person to person. But the “types” assigned at diagnosis (1, 2, 3, or 4) function as markers along a spectrum, with SMA 1 being the most severe and SMA 4 the least. A person’s designation depends on if and to what extent they’re able to walk as a child. Since I could walk independently and for fair distances, SMA 3 it was.
My family jokes that my little sister is the reason I was diagnosed at all. She’d been born three months premature, so after she got home from the hospital, a nurse came to the house weekly to monitor her progress. During one of those visits the nurse saw me, two years old, waddling like a penguin. She told my parents to have me looked at, and shortly thereafter, I had a diagnosis and a power wheelchair to use as needed. None of that mattered to me then, considering I was barely old enough to form sentences, let alone memories. I’m grateful we found out so early. By the time I was old enough to form memories, SMA was already a part of me, a simple fact of my life.
My doctors didn’t explain all the nitty-gritty details of the thing—in college, when I found out that SMA is caused by a gene mutation, I happily shouted to my friends, “Guys, I’m a mutant!”—but none of the day-to-day mundanities of my disease were a surprise. My annual check-ups were boring, if a good excuse to get out of school for a day. I knew that the biggest risk down the line was respiratory and to get my lung capacity regularly tested. I knew that the flu was dangerous because of how easily it leads to pneumonia. I even knew that my utter lack of reflexes was completely normal for SMA, though the physical therapists kept checking for them anyway. But over the course of twenty-four years of regular visits, no one ever thought to mention, to me or my parents, that swallowing could become an issue.
Perhaps I should’ve put the pieces together myself: All my muscles are affected. All weaken over time. And the ones closest to the core (lungs, heart, torso in general) tend to atrophy most, and most quickly. Maybe I should have realized swallowing issues were, if not inevitable, then certainly possible. Instead, I ate cheeseburgers and pasta and sandwiches and sushi and chocolate chip cookies like they were guarantees. When the signs showed up, I didn’t heed them, barely noticed them. Signs are only effective if you know to watch for them, and if you know how to decipher them once spotted. I knew neither.
My last meal was either chicken and rice, piled with Mom’s brown gravy, or chicken stir-fry; I seem to remember the latter, but a blog post I wrote soon after says the former. What I know for sure: It was a Thursday, dinner involved rice, and the few bites I managed to force down were wrong. My mouth felt overly large, chunks of food bouncing every which way and not where or when I expected. My tongue seemed thick and wide. And at its sloping base, a feeling of tubal claustrophobia. I corralled the bites backward and downward, but when I tried to swallow, my throat retched forward. Not like vomiting, not an expulsion. A rejection.
The next morning, Mom called from work and said she and I should go on a weekend trip. This wasn’t unusual, but we hadn’t done one of these spontaneous vacations in years, and she knew I planned on going to the doctor. “Oh, you’re fine,” she said again. I insisted. She compromised: We could hit the road afterward. So I made an appointment, then booked a room in Huntsville, Alabama, the only place in driving distance with accessible rooms available on such short notice for relatively cheap.
I saw the ENT that afternoon on an empty stomach since I hadn’t managed my grilled cheese for lunch. It had been twenty-four hours since I’d eaten anything substantial. I didn’t know how to explain the physicality of what happened when I tried to eat, only that I couldn’t. He looked down my throat, noted that my tonsils were unusually large, and prescribed an antibiotic and an anti-inflammatory. He said to go through the full dose of each and see what happened. I was relieved to have something concrete to prove I wasn’t fine, that this wasn’t all in my head. Mom and I left town immediately after picking the medicine up from Walgreens. On the way to Huntsville, I scraped crumbs off buttery crackers with my teeth, letting them melt in my mouth. I managed a few sips of tomato soup at TGI Fridays for dinner. Drank a quarter of a Smoothie King smoothie for lunch. Tried another smoothie from Applebee’s for dinner, drank even less. “The medicine will kick in soon,” Mom said after each attempted meal.
Over the next few weeks, I dropped twenty-five pounds. For meals, I sucked sour cream off a spoon, sometimes mixed with a tiny bit of refried bean goop. I’d spend an hour forcing down an individual-sized yogurt or a couple tablespoons of mashed potatoes. I tried drinking Ensure, but the milkiness filled my throat with phlegm that gagged me. The longer this went on, the less I could manage, more from the fear and fatigue than anything else.
All the while, no one could tell me what was wrong. The speech pathologist tried to thread a tube up my nose and down into my throat so she could watch me swallowing, but I had a minor panic attack before she could see much of use. “It might be acid reflux?” she said as she handed me tissues to wipe away the snot and tears and saliva. Pepto Bismol, Prilosec, Zantac, the antibiotic, the anti-inflammatory—none worked.
I went to the emergency room. My body was so dehydrated that it took a team of nurses nearly half an hour to get an IV in my veins for the CT scan. As I lay with my head and upper chest in the giant tube, iodine inking my insides visible, I imagined the word cancer. Some rare throat cancer, maybe. I imagined chemotherapy, radiation. I was afraid, but at least, I thought, there would be something to fight; to fix.
The scan showed nothing. The ER doctor admitted me for an overnight stay. I hadn’t eaten anything all day and my head was pounding. The nurse let me drink an Ensure before bed, but only one. “In case you need surgery tomorrow,” she explained.
They scheduled me for a modified barium swallow in the morning. My friend had mentioned this test in one of our Skype conversations—unrelated to me—so I knew broadly what to expect. While sitting next to an X-ray machine, the patient attempts to swallow three different substances mixed with barium that, I would soon learn, turns all of them a chalky, off-putting blue. “What happens if I can’t swallow the stuff?” I asked.
She paused, as if searching for the right phrasing. “We’d declare you unsafe to swallow, so you wouldn’t be allowed to eat or drink orally. But let’s just try this first.”
“But what would come after that?” Mom asked. “A feeding tube?” She stood close in the small room. Dad, having transferred me to and positioned me on the metal counter, held me upright and steady.
The same response, no pause this time: “Let’s just try this first.”
For weeks now, ever since we got back from our mini-getaway, Mom had been warning me of feeding tubes, as if to goad me into eating normally again. I remembered the agony of a pinhole of a tube slithering its way up my nose for that first swallowing test. My throat tightened as I imagined how they might go about forcing a feeding tube into me.
We started with the most solid test substance. I chewed, and chewed, and chewed, and chewed until the barium-moistened crackers turned to paste in my mouth. It tasted how cement might before it sets. “You sure are chewing a lot,” the woman said, part-joke, part-admonishment. Let’s just try this first. I rolled thickened saliva and mashed wafer into the center of my tongue, pulled one deep breath through my nose, and forced the wet ball down—hard. Next up: a gelatin that tried to slip before I was ready but that I caught with a well-timed pitch forward. Finally, a liquid that I pulled hard and fast through a wide straw, eager to be done.
“Well, there’s nothing mechanically wrong,” she said as soon as I finished. The X-ray recorded and shared its video in real-time, no waiting needed between test and result. “Everything’s working as it should, it’s just taking a lot more effort than it ought to.”
“What does that mean?” Mom asked.
This was a progression of my SMA. Part of why no one had seriously considered this possibility in the weeks before was that swallowing troubles usually start with liquids, not solids. The weakened windpipe loses its seal, so fluids—even spit in extreme cases—can start sneaking into the lungs. But with me, my windpipe was working as intended and everything was ending up where it should. I just couldn’t get anything solid down without utterly draining myself in the process. And my timing was off; when chewing, food shifted without warning, as if someone else had given the go-ahead and my body followed that outside command instead of my own. Eating, then, would become a matter of wrestling control back to myself, in whatever small measure I could. For now, that would mean simply downing enough calories to stay alive.
When the doctor discharged me from my overnight stay, Mom, Dad, and I hit the cafeteria before heading home. I’ve always had an inexplicable fondness for hospital food. Something about it has always felt cozy to me, welcoming. I trailed behind Mom as she searched for mashed potatoes. The trays all lived at standing height. From my wheelchair, I couldn’t even see their labels. She sometimes called out the dishes (meatloaf, macaroni and cheese, biscuits) but mostly we moved swiftly along, plate empty in her hand. We searched every section, even the desserts in case there’d been some weird mix-up, but there were no mashed potatoes.
Mom grabbed me a baked potato and a mountain of sour cream. She peeled the potato skin as cleanly away as possible and used a plastic fork to mash the solid starch toward something closer to edible, not unlike a bird pre-chewing food for its babies. I managed a few bites. The potato was cold and still chunky, so I mostly ate the sour cream.
At least now we know what’s happening, I told myself.
“At least it’s not cancer,” Mom said.
I didn’t say that with cancer there was something to do, to try. With this, all I could do was learn to live with it. I had no idea how to do that. I’d never needed to adjust to my disability before. Not like this. Not in terms of loss, or of sudden change. Even when I stopped walking at age six, the process was gradual and expected. I don’t even remember the shift from before to after. This shift may have been gradual, too, given the signs I can spot now, but there’s a clear demarcation between my life with solid food and my life without it; between that chicken dinner and the baked potato in the hospital.
Those uncertain weeks ended with a quiet ride home and little direction. Nothing had changed from the night before—except for the certainty that everything had changed, permanently. Food as I had always known it was now officially in my past. I couldn’t think about the future yet. I sat quietly in the car, neon orange hospital bracelet still on my wrist, and watched as the world outside my window, never moving, slipped steadily away.