My feeding tube means I can no longer enjoy the feeling of being sated after a meal. But there are other ways to nourish myself beyond my body.
This has been a strange year for me aside from being a high-risk disabled person during the pandemic. In the spring, I put the final touches on my memoir, Year of the Tiger, filling the book with writing about my love of food and our family’s Chinese food traditions. I commissioned artist Felicia Liang to illustrate some of my favorite foods for a book chapter titled “Food Heaven” that included dishes such as chawanmushi, soondubu jjigae with seafood, o-toro nigiri, and potato chips with champagne. I was excited and ready to share my story with the world.
But my passion for eating came to a screeching halt this summer when I had a medical crisis that required a tracheostomy and a G-J (gastric and jejunostomy) tube rendering me unable to speak or eat. Having muscular dystrophy, a progressive disease where all muscles weaken over time, I’ve experienced difficulty swallowing in the last 10 years, adapting by shifting to soft or fatty foods that help with swallowing. While I aspirated saliva and food from time to time, there were several days in a row this summer when I kept choking every time I ate. I would swallow a bite or sip and half would not go down, requiring me to spit it in a cup so I could catch my breath. For days I tried to keep my caloric intake up by drinking lattes and letting my warm tongue melt tablespoons of peanut butter right after. Eating one small container of Trader Joe’s peach and mango yogurt would exhaust me. These were the last things I ate before going to the ER.
Food is essential to life, but it is so much more. Food is more than fuel or a calorie count. Food is cultural, political, and social — it ties people together and is a form of identity and pride. There’s nothing more wonderful than feeling satiated after a hearty meal like a bowl of spaghetti showered with grated parmesan cheese or a perfectly charred smashburger with caramelized onions and avocado dripping with special sauce. This is the sensation I miss most, as only medications and hydration go into my stomach via g-tube and liquid food through my small intestine via j-tube. Although I receive nutrition, I do not feel satisfied.
My inability to smell (because I do not inhale air through my nose) and eat has not diminished my desire for food. When I was in the ICU for four weeks I would leave the Food Network on during the times I was alert enough to pay attention, feasting on shows that I would never watch regularly: Guy’s Grocery Games and Pioneer Woman. The second episode of Iron Chef: Quest for an Iron Legend featuring Esther Choi made me want everything she made, such as her pork rib-stuffed donuts with sesame milkshake and dalgona cookie. A nurse saw me watching the episode and asked if I was torturing myself since I was temporarily on TPN (total parenteral nutrition), a form of intravenous nutrition. Was it torture? I didn’t even consider that, because it was my way of fulfilling my desire visually.
In the months since, I have been satisfying (or exacerbating) my cravings by watching posts and reels on Instagram. I never paid attention to reels before, but there are endless sexy scenes of fried egg yolks breaking, butter bubbling on cast-iron skillets, and heaps of noodles lifted by chopsticks going into voracious mouths. In particular, I love (Eater reporter) Bettina Makalintal’s Crispy Egg Instagram featuring her daily creations and Roy Choi’s food vlogs. A typical vlog has Roy at a restaurant with a spread of delectable dishes in front of him. I love marveling at the sheer abundance of the order, love seeing him take huge messy bites of food (something I cannot do), and the ecstatic expressions on his face. Seeing and hearing delicious food being eaten allows me to temporarily live vicariously on an empty stomach. I wish I could switch bodies with Roy for a week so I can eat my way through Los Angeles and the San Gabriel Valley. Some dreams can come true, right?
I dreamed about food while I struggled to maintain basic nutrition with tubes sticking out of holes in my stomach and throat. Here are a few dreams I recorded in my journal:
I was at a potluck and I put this huge rack of barbecue ribs on a paper plate, but it fell and I was so sad about it, so I got another plate and put ribs, a roast chicken thigh, and some deviled eggs. The end.
There was a counter laden with pastries and a cheese danish with streusel was on a tray I couldn’t reach. Someone brought one down for me and wrapped it in a napkin so I could eat it. I was happy.
I haven’t been in a grocery store or bakery in over two years. I fantasize visiting the new H Mart in my area and loading up on all the snacks and goodies. If only I could feel full from my dreams.
One of my goals is to be able to eat by mouth to supplement the liquid food that goes into my feeding tube. My doctor wants me to gain strength in a few months and conduct tests to see if my throat muscles are strong enough to swallow safely. When I asked if I could at least taste something in my mouth, doctors and nurses were concerned I could aspirate again, which could lead me back to the hospital with pneumonia. Alas, the relentless siren song of my constant craving was irresistible.
A few weeks after I got home, my friend dropped off several flats of peaches and nectarines from Masumoto Family Farm. I love Elberta peaches and wrote rhapsodically about them recently. My parents froze a bunch in the hopes that I could have a cobbler or smoothie one day. I went two months without tasting anything and I had to take a chance despite the risk of aspiration and the warnings from health care providers. After all, it was stone fruit season.
My dad blended one fresh peach and fed me a small spoonful carefully. With one small sip, I felt a burst of sunshine and immediately spit it out. Taste buds have muscle memory too — the sensation of the sweet and tangy pureed peach danced on my tongue, a delayed reunion of deliciousness. I slowly began to taste other liquids bold in flavor: the broth from Din Tai Fung’s braised beef noodles, peanut butter chocolate fudge ice cream from San Francisco’s Hometown Creamery. Because life is too short, two months after my hospitalization, I invited a few friends to eat outdoors at the Morris — it was my first time dining out in three years and I wanted to celebrate being alive.
While I enjoyed selecting the multicourse meal for them — which was an act of pleasure and care — I intended to take a small taste of fries. Abby, my friend who sat next to me, fed me by dunking one fry with aioli at a time while I held my spit cup. The hot, crispy, and soft potato! The cool, creamy, and garlicky aioli! My eyes rolled the back of my head as Abby continued to send fry after fry in my mouth. In the midst of that blissful moment I let my guard down and almost choked when a bit of potato went to the back of my mouth. I tried to produce more saliva and coughed as best as I could with tears streaming down my face from the effort. Food has become dangerous and thrilling at the same time. I refuse to let my fear steal my joy and am determined to have a maximalist life. Viva noncompliance!
Life without flavor and scents can be difficult, but this is the reality of millions of chronically ill and disabled people. Our lives are not merely ones of deprivation, tragedy, or sadness. Nutrition is required for survival but eating is more than mere sustenance. It is a sensory smorgasbord that delights and pleases. It is a chance to commune with family and friends, a space to belong, care, and share.
What does the future of my passion for food look like with such uncertainty? Each day I am trying to figure out how to nourish myself beyond my body. As the holiday season approaches, I will sit with my family and eagerly watch them eat. I will enjoy the meal even though it won’t end up in my belly. Instead of joining them in a toast with prosecco, or the dinner of roast duck, wontons, or Shangdongese chive dumplings, I will make eye contact with everyone and give them long cat blinks. This is my love language: sharing space and enjoying the meal with them even though it won’t end up in my belly.
Alice Wong is a writer, activist, and consultant based in San Francisco. She is the founder of the Disability Visibility Project and author of Year of the Tiger, available now. Felicia Liang is an artist and illustrator based in the Bay Area, California, whose work reflects the communities and cultures she’s around and her own inner musings.