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Home: The Toast

I. Tradition

I always wanted the kind of holidays you see in Publix commercials, ones stuffed with family sitting around a mile-long table that’s covered with dishes all lovingly made. I imagined waking on Thanksgiving to frosted windows and a house already warm from the oven. Aunts and uncles and cousins would stagger in throughout the day, some early enough to watch the parade while the air slowly turned savory; some just in time for a sprawling, mid-afternoon feast; some lingering until well after dark fell and the infinite pies had disappeared.

Even as a kid, I knew to some degree that this was a manufactured fantasy, that even fully functional families didn’t have the gleaming, magical, comforting holidays I dreamed of. But knowing didn’t stop my wanting.

I couldn’t do anything about our lack of extended family or my parents’ highly questionable distaste for spectacle, so I latched onto the idea of tradition instead. I became the self-appointed creator and keeper of Whaley family tradition. I spent years building myself a collection, nearly as tangible as the dozens of spoons I hung in our living room. Anything we did on a holiday that felt unique, no matter how minor, got added to the list.

Perhaps unsurprisingly, many of these involved food. Holidays are structured largely around meals, after all. If the ostensible focus should be on family, how better to implement that than an activity in which everyone can contribute and participate? Everyone pitches in and everyone gets a literal taste of the results. Eating becomes a communal activity where food is centerpiece, history, raison d’être, and shared experience all at once.

Of course, it’s nourishment too, but that seems like the least important component. The dishes prepared, served, and consumed for the holidays are so much more than food; they are the threads that stitch your present into your future and back around to your past. When I blow on the chunky mashed potatoes Mom only ever makes on Thanksgiving, I’m also accidentally whistling for the first time at five-years-old. When I scream at the TV around a mouthful of pumpkin pie during Thanksgiving-night football, I’m also learning what exactly a first down is when I’m in middle school. When I smear icing on a warm cinnamon bun on Christmas morning, I’m also staring at a pile of presents that contains my first (tiny) diamond earrings at thirteen.

I mined tradition from the details of our meals, not just in terms of what we ate but also how we prepared it. We all had our roles, largely assigned by me. Part of this was a way for me to ensure I was included in the process. My range of motion and strength are both limited, so I’m not the greatest cook, but I can peel potatoes and boil eggs, and I can for sure mash up some yams. I honed in on all our idiosyncracies: how it took me ages to get through a bag of potatoes because I could only scrape off tiny patches of skin at a time; how Mom refused to have water next to her when she made gravy even though she’d always scream at my sister to get her some while stirring; how Dad tasted everything with his index finger, leaving swipe marks in every bowl we dirtied; how cranberry sauce was “red stuff” because neither my sister nor I wanted anything to do with whatever cranberries were. It’s these small moments, these patterns, these intentional (and unintentional) repetitions that turn a bigger-than-normal dinner into a celebration.

It was tradition—my carefully chosen constants—that I clung to when the holidays weren’t quite as shiny and bright as I wanted.

II. Loss

Back in June, I was eating dinner and found I couldn’t swallow. Not like when you’ve got a little cold and your throat feels a bit tight and sore. Not even like when you’ve got a big cold and your throat’s filled with phlegm and other horrors. This felt like my body had forgotten how swallowing worked at all. It was terrifying, but I figured it was a weird fluke.

Then it happened again the next day. And the next. And the next.

I went to doctor after doctor, but nobody could figure it out. And the more I tried to eat, the more it hurt. I’d take the tiniest bites of mashed potatoes—just enough to cover the tip of one tine on my fork—and cough for a full minute after. Soon, my throat felt like it was closing up all the time. I sucked on endless cough drops hoping they might soothe whatever was happening in there, but I still couldn’t swallow.

I was so hungry.

I was so scared.

I went to the hospital. They ran more tests, and finally they had an answer: “There’s nothing mechanically wrong. You can swallow, it’s just taking a lot of effort.”

What does that mean? we asked.

“Your muscles have weakened. They can’t get the food down.”

Turns out this was a progression of the neuromuscular disease I was born with. My last big drop in function happened when I was six years old and I stopped walking. I’d been pretty stable since my pre-teen years, though. Over a decade where I didn’t notice any extra weakness.

Not until that night in June.

I didn’t even know swallowing issues were a possibility. No one ever told me. I don’t know if it would’ve been easier if they had. Maybe I would’ve been watching for signs that it was coming. Maybe I would’ve savored my food more, just in case. I don’t know, but it doesn’t really matter. I wasn’t prepared and it happened anyway.

III. Hunger

A few months after I stopped eating, we were driving down a long, restaurant-filled road. It was just past four o’clock, so they were all getting ready for the dinner rush. With our windows open, all you could smell was smoke and meat and grease. I sucked the air into my lungs as hard as I could, but it wasn’t enough. I didn’t want to breathe in the suggestion of food, I wanted to feel the food sticking in my teeth and burning my tongue. I wanted my mouth filling with saliva around a too-big bite, the pressure of pushing it down my throat, the slight discomfort of an over-full stomach.

I wasn’t hungry. My body doesn’t recognize hunger anymore, not in the way it used to. This was craving—the need to fill an emptiness. It hurt, but not in any way that seemed to matter.

At some point during that car ride, I started scratching my chest. Up and down and up and down, exactly where a pendant would go if I wore necklaces. I scratched until the skin heated up under my fingers, until it stung, until it filmed over with some clear liquid. By the time we got home, I’d scraped off a patch of skin two inches long and half as wide. It was vaguely diamond-shaped and road-rash red.

At some further point, not that day but near enough, I realized it’d be fall soon. It’d be October, then November, then December. It’d be my favorite time of year—or well, what used to be my favorite time of year. I didn’t know what it’d be now. I didn’t know how I’d handle the infinite Publix commercials this year, let alone the actual holidays. I worried the not-hunger would take me over entirely. Like maybe I’d scrape away more and more patches of myself, and maybe I wouldn’t care if I did.

IV. Composition

I didn’t, by the way. Not because it was an unhealthy way to cope, but because I didn’t want to be seen coping at all. No matter what my therapist said—and she was very clear that I needed to grieve—I didn’t want to appear anything less than utterly composed. I’ve spent my whole life clothed in others’ assumptions about my difficult, tragic life. Admitting I was still hurting felt like admitting they’d been right all along, that I deserved pity at worst and sympathy at best. So I didn’t scratch again, even though I rested my fingers on the same now-healed skin every time I felt that ache inside. Even though it had felt sublimely reassuring when my wound ended up infected, whether because it gave me a different hurt to focus on or because it proved the not-hunger hurt was real, I don’t know. Probably both.

V. Preparations

We bought a 23-pound turkey for Thanksgiving this year. To my knowledge, that’s the biggest one we’ve ever had. Dad tried to talk Mom out of it at the grocery store, but her hands skimmed right past the smaller birds.

“I never get a big turkey,” she said. “I want one this year.”

“But why?” Dad asked. “We’ll never eat it all. Especially this year.”

I wasn’t watching them to see if he gestured at me to solidify his point, not that he needed to; we all knew he meant that I wouldn’t be eating any, not this year or ever again. I stared at the turkeys. A pile of carcasses, I told myself. Just bodies. Just death and flesh and bones. I searched for the disgust my newly-vegetarian sister would likely feel standing next to this display, but all I found was the memory of warm, tender meat on my tongue and the comforting weight of it settling in my stomach. I brought my hand up to my chest, as if to clutch a pendant.

“It’s okay, Mom,” I said, gaze still fixed on the birds. “You want to get it, so get it. It’s okay.”

As Dad hefted the 23-pound turkey into our cart, I kept staring at all the ones that had been too small, all the ones we left behind. I didn’t—couldn’t look away until Mom and Dad had moved on toward the dairy section. Partly it felt like a compulsion, some masochistic urge to stare at the thing I feared. Because I was afraid. For weeks I’d been trying to convince myself that Thanksgiving’s never a big deal in our house anyway. That it would be just like any other dinner. That at least I wouldn’t have to raise my shield against that giant extended family I’d always longed for.

But partly it felt like preparation. If I invited in the not-hunger in small doses, then maybe it wouldn’t be so bad later. Maybe I could build up an immunity, or at least a tolerance. If I couldn’t control the hurt, maybe I could work with it, let it nestle in me rather than surprise me. Of course, as I’m writing this I realize this might have been what my therapist meant when she said I needed to grieve, when she encouraged me to let myself feel however I felt. But staring at those turkeys—in the grocery store and later at the one bathing in our sink as it thawed—didn’t feel like grieving. It felt how I imagine training for an athletic competition must feel: painful but productive. Intentional repetition to build strength and stamina.

VI. Festivity

Thanksgiving morning, Mom did whatever it is she does to the turkey while I half watched the parade and half scrolled through Twitter watching the parade. Dad put the bird in the oven about an hour before Santa showed up.

My sister and her roommate came over just as the national dog show started. They’d brought their own dogs with them: a black lab-dachshund mix and an eight-week-old husky named Sybil. We congregated in the kitchen for a while, cooing at the puppy as she skidded on the tile floor. The kitchen was warm already. I breathed through my mouth.

I watched the dog show while everyone else cooked. I didn’t peel the potatoes. I didn’t help with the deviled eggs. I didn’t mash the yams. I sat in the living room, rooting for the Skye terrier (who ended up winning) and ignored the sounds coming from the kitchen: pans banging, faucet running, my whole family laughing.

Once the early afternoon lull hit, after everything was prepared and all we had to do was wait, we decided to watch Inside Out. Neither my sister nor her roommate had seen it, and Mom and I had loved it when we saw it in theaters. I warned my sister she’d cry. (She cries at everything, but don’t tell her I told you.) Most of the movie, I petted Sybil. She was racked out on the couch, so to reach her I had to angle my chair away from the screen. I buried my hands in her obscenely soft coat and watched her sleep. Behind me, Joy was slowly learning the importance of Sadness.

By the time the movie ended, my sister was sobbing and dinner was ready.

I sat at the table while everyone else rushed around me setting our places (normally my job), dragging in more chairs, arranging the dishes so no one could accidentally knock a tray over. My sister’s roommate, being a guest, was instructed to wait, like me. Someone had given her the plate with fruit around the edge—my Thanksgiving plate, always.

“Do you mind switching plates with me?” I asked. She didn’t, although my family all jokingly rolled their eyes at me.

We didn’t go around the table and say what we were thankful for. Dad usually makes it a point to do so; it’s the one tradition I think of as his and not mine. He may have just been extra hungry, or maybe he didn’t want to put our guest on the spot, but I can’t help wondering if he didn’t want me to have to pretend I was thankful before this particular meal.

I ate the little bit I could. A few bites of mashed potatoes drenched with gravy. One bite of yams (they were too sticky for me to manage). Half of the goop inside a deviled egg, spitting out the chunks of relish. It took me longer to get all that down than for everyone else to have seconds, but no one rushed me. We talked about nothing in particular, punctuated by Mom periodically asking if I was okay.

We watched football while Dad ate pumpkin pie. I can technically still eat it, but not after forcing down even the paltry amount I’d had at dinner. I focused on the announcers’ chatter and the refs’ calls and the crowd’s screams rather than the quiet, steady chewing.

Before bed, Mom plunged a box full of formula into the feeding tube that now comes directly out of my stomach. “Mmm, tastiest Thanksgiving ever,” I joked, genuinely smiling, even if I was also cringing a little.

But I didn’t touch my chest once all day.

VII. Traditions

I’m still not exactly looking forward to Christmas, but I’m not dreading it the way I was Thanksgiving. Sure, I won’t be able to eat our traditional cinnamon buns, but I can lick off some icing. And I probably won’t find anything edible on Waffle House’s menu for our traditional Christmas dinner, but I can have some hot chocolate and maybe pour some maple syrup onto a spoon. Don’t get me wrong: it’ll still hurt, but at least I know what to expect. At least I can be prepared.

It’d be easy here to talk about making new traditions and how it’s not the food that really matters so much as the people. Maybe that’s true, but it’s not the whole truth and it isn’t a particularly helpful truth for me.

I miss food. I don’t know if that not-hunger is ever going away. It feels like it’s becoming less present and that’s something, but it’s still a near-constant hurt. Pretending the traditions I’ve spent my life creating and clinging to can be casually traded in for new ones would feel like a betrayal. It would feel like admitting they really were silly all along, just like my family always said. I don’t want to deny my traditions any more than I want to deny my hurt. And I don’t think I have to. If grief is about letting yourself feel however it is you feel, then I’m going to keep inviting the not-hunger in while praying for the pain to ease. I’m going to spend my Christmas day wanting all the foods I can no longer eat while savoring the ones I can.

I’m going to make new traditions, even as I mourn the ones I’ve lost.

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Kayla Whaley is co-editor of Disability in Kidlit and a graduate of the Clarion Writers' Workshop. She specializes in being way too earnest on the internet.

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