A black bulldog, strapped into a red harness, peers over its person’s shoulder and stares at me. We’re in a line at a small, indie coffee shop, where I’m jonesing for some of that famous Seattle coffee. The bulky canine in front of me, indifferently sniffing the air once I become a boring subject to observe, is likely hoping for a morsel of some of the baked goods the scents of which are subtly threaded through the heavy coffee aroma.
A New Englander, I’m a regular at my local Dunkin’ Donuts, although I occasionally go to Starbucks to splurge for an oat milk latte. Most mornings, I use my Keurig machine to brew two cups of coffee, hoping that the caffeine will force my brain to focus, like when you need to reboot a laptop. Control. Alt. Delete.
This coffee shop near Lake Union, not far from one of the several Google office buildings in the city, is brimming with Millennials and Gen Zers, many in running gear and coated with a thin sheen of perspiration. The room is loud as benign chatter bounces off the spartan walls. I feel the sound in my chest. Scott and I — early Gen Xers — definitely feel our age.
The final session I plan to attend at the Association of Writers and Writing Programs (AWP) conference at the Seattle Convention Center is named “Mutant, Monster, Misfit, Myself: Writing the Disabled/Chronically Ill Body.” A few weeks earlier, I’d emailed one of the scheduled panelists, Sandra Beasley, and asked if she’d meet up with me after the session to chat about chronic illness/disability writing.
I first came across Beasley’s work when I taught a narrative medicine course for an MFA in Creative Nonfiction program. Ironically, I took over the class a few weeks into the semester because the original instructor sustained a serious injury. Scrambling to catch up, I poured through the required texts, and discovered the essay, “The Bad Patient” in a collection of short pieces called “Bodies of Truth.” In Beasley’s piece, she described life with a multitude of potentially lethal food allergies. The essay closed with a killer anecdote about her run-in with a James Beard Award-winning chef who seemed aggressively put out that she dared to ask questions about the ingredients. “A curt, volcanic man wearing whites” burst out of the kitchen and approached the table where she sat with her father. “He slapped a dishrag down on the counter. ‘What are you allergic to?’ he asked.” Beasley was only able to name two of her many food allergies before he impatiently blurted, “You good with pig?” A short while later, he placed a dish in front of her. An innate sense of politeness pressured her to take “a tiny bite,” as if her allergies were somehow an affront to the chef’s culinary skills. In reality, Beasley was bullied into playing Russian roulette with pork, and was fortunate to emerge unscathed. “I’m a person who is weighing the risk of dying against the needs of living, day by day,” she wrote. “I’m not the only one.”
Her essay struck a nerve with me because I have a dairy allergy. Unlike Beasley who was born with allergies, I was diagnosed at age thirty-two after giving birth to my third child. At some point, my body decided to respond to butter, milk, or cheese with itching and swelling in my mouth and throat. Sometimes, I feel like a rock is lodged in the base of my throat. When I eat something which was baked with dairy ingredients, I experience significant stomach pain as if a hard fist is pressing from the inside out, at the bottom of my rib cage.
It took me about a year to pinpoint the culprit. I brought the evidence to an allergist who, after hearing my complaints, gave me the side-eye, saying adult-onset food allergies are rare. When a skin test was positive for a dairy allergy, he scoffed at the results and ordered a blood test, reiterating how unusual it is for adults to develop allergies. During the subsequent phone call when he told me the blood test confirmed a dairy allergy, I asked him what I should do with this information. “Avoid dairy,” he said, “and carry an EpiPen.”
I’ve experienced a number of poisonings over the years, like the time I accidentally consumed gravy at a relative’s house without realizing it contained dairy. After downing three Benadryl tablets (I’d long ago lost my expired EpiPen), the combination of the antihistamine and the wine I drank with dinner felt akin to being roofied. I barely made it to the guest room before passing out and sleeping through the worst of the reaction. On Valentine’s Day one year, my husband Scott and I were having lunch at a restaurant that had historically been great with food allergies. The plan was to attend an early evening showing of “The Big Short” afterward. While I was hungrily devouring my food, a disembodied arm reached around from behind and snatched my plate away, like I’d done something wrong. Despite their vaunted allergy protocol, I’d accidentally been served a dish containing dairy ingredients. Scott took me home and plied me with Benadryl. I sacked out in bed and encouraged him to go see the movie anyway since we’d already paid for the tickets. He wound up taking our fourteen-year-old son to see the award-winning film about the impact of subprime housing loans on the U.S. economy. Happy Valentine’s Day.
Scott claims two stools at the end of an oval table with a white surface. I remain in line straining to make out the words on the menu behind the counter with the help of my progressive eyeglasses. I order a hazelnut latte with oat milk and a vegan brunch burrito supposed to contain scrambled tofu, roasted potatoes, spinach, and vegan aioli. I shouldn’t have to mention my dairy allergy, I reason, because there’s no dairy in any of those things. It’s a thrill to just give the order without having to issue any caveats. After I throw in Scott’s request for chai tea and an egg and cheddar sandwich, I join him at the table and we plan out the day. We’re going to visit the Space Needle before I attend my final writers’ workshop. Later, we have plans to meet up with friends for dinner at a vegetarian restaurant.
When my latte is ready, I’m delighted to see the delicate outline of a heart floating in the foam, an ephemeral expression of kindness. This little heart, such a small gesture, makes me feel special in a way that takes me by surprise. I realize they do this for everyone, not just for me, and that’s why the shop promises a “premier coffee experience.” Nonetheless, it’s a bit of thoughtfulness in my cup … one I try not to spill as I awkwardly make my way around the knots of customers.
The menu says this latte is made with espresso and house-made hazelnut syrup, plus the oat milk I requested in lieu of regular milk. At this moment — on the fifth day of my work trip to Seattle — I really need this infusion of caffeine as I’m pretty tired, my brain sluggish. Because I don’t often afford myself a large chunk of time to devote exclusively to my craft, I want to be wide awake to soak everything in. This gift of time feels like a heart etched in foam, a Valentine to myself.
“This is not an identity that can or should stay in the margins,” Sandra Beasley tells the crowd gathered to hear her and four other disabled writers discuss their work.
Describing her food allergies as “pervasive and life threatening,” Beasley says she didn’t consider having allergies as a disability until recently. However, once she started to consider the impact of the allergies, such as her inability to partake of the social rituals in which food brings people together, she recognized that she does, indeed, have a disability. “I don’t particularly love the idea of ‘suffering’ from food allergies,” she tells the AWP crowd. “They inform who I am.”
Referencing her 2012 memoir “Don’t Kill the Birthday Girl,” Beasley says the word “disability” is only used once. It took her years, she says, to realize that she’d been living her life “as a disabled person.” She now embraces the “disabled” label and finds herself welcomed by a community of people who understand her challenges. It’s a community, she says she realizes she “desperately” needs.
When our food is ready, Scott retrieves it. I’m super-hungry; I’m the person for whom “hangry” is often a state of being. I down that food like I’m trying to beat Joey Chestnut in a vegan burrito eating contest. The burrito’s innards tumble out onto the wax wrapping. I pinch the fallen burrito bits between my yellow-stained fingers – from some kind of turmeric spice, perhaps? – and pop them into my mouth, chasing them down with a sip of latte. Compared to my rapid consumption of the food, I’m savoring my latte, sipping it in a positively dainty, restrained way.
Scott shakes his head at the sight of me. I’m soiling napkin after napkin trying to scrub off whatever oil-based binding agent the coffee shop staff used to add a dash of that stick-to-your-ribs feeling to the burrito. I’m having trouble getting the saffron-color off my fingers with dry paper napkins. As Scott tries to ignore my mess and explain what he’s been doing while I’ve been attending writing workshops, I feel a prickle of irritation in my eyes, similar to accidentally getting soap in them in the shower. I wipe my hands on yet another napkin before clearing the corners of my eyes with my fingers in an upward motion. The stinging blossoms in intensity. I again wipe my eyes, thinking an eyelash or maybe mascara is aggravating them. “I’ve gotta go to the bathroom,” I say, hastily excusing myself.
I thoroughly wash my hands with soap and hot water before clearing my tear ducts again. In front of the mirror, I slowly roll my angry red eyes side-to-side searching for debris. I spy nothing abnormal, apart from the color. As I walk back to the table, I have a sensation like I’m moving in slow motion in tandem with a wave of itching and swelling that’s starting to engulf my mouth and throat.
“We gotta go,” I say urgently, anxiety slicing the air like a cleaver.
Scott’s dark, heavy eyebrows knit together. He’s all too used to my medical emergencies. I’ve had multiple sclerosis for nearly nine years and it frequently inserts itself unexpectedly into our plans. I loathe having MS primarily because it hijacks any given day and ruins not just my plans, but those of others, usually Scott’s, too. In moments like this one, I’ve learned, Scott needs direction, needs to know what’s happening and exactly what he can do to help.
“I think there was dairy in the food or the coffee. I’m having some kind of reaction. We need to get Benadryl.”
The other “Mutant, Monster, Misfit, Myself: Writing the Disabled/Chronically Ill Body” panelists have a host of ailments which they sometimes incorporate into their work. A poet, Jennifer Givhan, infuses her writing with elements of her illnesses which range from irritable bowel syndrome (IBS) and Hashimoto’s disease, to fibromyalgia. It’s on the page where she says she dives into “the underbelly” of her constant stomach pain and “[dredges] the sludge out.” Givhan says she uses verse to process her anger and frustration.
Categorizing her writing as “body horror,” Givhan tells attendees that when she was growing up and plagued with stomach woes, her family made fun of her and treated her uncontrollable symptoms as “kind of a joke.”
At times, Givhan, who is on Zoom, becomes tearful when she speaks about living in her “pain body” where “[my] brain and my body have betrayed me.” Being sandwiched between scribes whose own bodies have confined and dictated their lives, Givhan says she feels a communal sense of support, something which Beasley agrees she has also been missing.
We walk in our hurried East Coast clip, across the busy Mercer Street, and duck into a Bartell Drugs on the corner. As soon as I locate a box of antihistamines on a shelf, I tear it open. “Water?” I say to Scott, not bothering with niceties as the pressure in my chest is escalating. A uniformed security guard approaches. The ripped-open medicine box lies on the shelf and I’m taking a big swig from the icy bottle of water Scott has handed me so I can choke down the tablets. We haven’t paid for anything yet.
“I’m having an allergic reaction,” I say through choppy, labored huffs. Pointing to the box and lifting the hand holding the water, I say, “We’re gonna pay for these.”
The man’s eyes widen, as people’s eyes usually do when you tell them you’re having an allergic reaction. “Oh,” he says, his tone soft, “hope you feel better.”
What I actually feel is woozy and weird as Scott guides me to the front of the store to pay for the water and medicine. I do not tell him I’m starting to panic. All I want to do is to return to our hotel room two blocks away and lie down. I now know I won’t be attending Beasley’s panel.
Inside the hotel, I walk-run to the lobby bathroom because I need to scrub the makeup off my now-burning eyes as soon as possible. So focused on putting cool water on my eyes, I don’t look at my face until I’ve bathed my eyelids in water. The corners of my eyes look like they’ve been layered with flesh-toned puffy paint. Every spot I touched in the coffee shop is now swollen. The vertical outline on either side of my nose between my eyes appears flattened. I do not look like me. Coupled with a throat that feels as though it’s closing like a locked door to a panic room, I return to the lobby and tell Scott, who is unsuccessfully trying to hide his shock over how I look, that we need to go to the nearest hospital.
“Want me to call an ambulance?” he asks.
“No, just an Uber. We can make it in an Uber if it’s not too far away.”
I don’t want to turn this into a big deal. I want immediate medical help without the aid of blaring sirens. This seems reasonable to me in the moment; I’ve never had to seek emergency care for my dairy allergy, so the mere fact I want to go to the ER is significant.
Scott, being Scott, asks the concierge for a hospital recommendation. Our grown children joke about his penchant for pestering hotel concierges for referrals, as well as his animated and extended conversations with hotel staff. Today is his first request for an emergency department referral. The thirtysomething concierge looks panicked when she sees my face and hears my now-labored breathing. She recommends a hospital less than two miles away in the First Hill area of the city, nicknamed “Pill Hill” because there are four medical facilities in the neighborhood. This turns out to be a good recommendation. My decision to have Scott call an Uber is not.
I do not speak during what seems like an extraordinarily long ride, delayed by construction which the driver could’ve avoided had he followed the directions suggested on his iPhone’s navigation app which we can see from the backseat. My exhales break the tense silence, pushing past my lips in erratic bursts of air. I press the cold plastic water bottle against my neck, trying to soothe the pressure that makes me feel as though my upper chest is going to implode. Fear continues to build like bile in my throat. Hives are marching across my arms and chest, exposed by my V-neck black blouse, like an invading army. The floral scarf that had been wrapped around my neck is now balled up in Scott’s sweaty hands. There’s no need to have anything wrapped around my neck when the throat inside is constricting.
When I watch the final AWP session online — weeks after it occurs — I am intensely moved by the poem Beasley reads aloud from her collection “Made to Explode.” In the poem, “Death by Chocolate,” she responds to a novelist’s request for input on a plot twist involving the poisoning of a woman with a shellfish allergy. Beasley considers the myriad ways in which she could be similarly killed:
Death by ice cream. Death by cake. Death by cucumber, though that would take a while; perhaps gazpacho as a short-cut. Death by mango.
Death by Spanish omelette. Death by dairy,
an abstraction sexy to someone who has never side-eyed
cream brought out slopping toward the coffee;
who has never felt histamine’s palm at her throat,
who says Cheese makes life worth living.
Death by dairy. The phrase makes the hairs on the back of my neck stand on end.
Whether it’s because I’m having trouble breathing, because my torso is marked by hives, or because the skin around my eyes is starting to fold in on itself like Shar-pei’s, an ER staffer quickly helps me into a wheelchair and rushes me into an emergency bay where a team awaits. Two curious medical students linger, clinging to the wall of the room taking in the textbook case of anaphylaxis.
A couple of nurses help me wiggle out of my blouse and into a wrinkled blue johnny, as my gray, plaid pants and chunky-heeled, lace-up ankle boots awkwardly protrude from beneath the hospital gown. Sticky, circular heart-monitoring electrodes are placed on my chest. I’m handed a bright blue plastic bag, its opening tethered to a white circular ring, in the event I need to vomit. I haven’t yet, but I do dry-heave often. Someone, I’m not sure who, administers a really uncomfortable IV in the crook of my right arm which sends sharp protests of pain when I bend the limb. Someone, I’m not sure who, wraps a white blood pressure cuff around my left bicep and repositions the oxygen sensor from my left index finger where she doesn’t think she’s getting a good reading, to the tender outer ridge of my left ear. For several minutes, I feel detached from my corporeal self, disembodied, an object upon whom a parade of strangers is acting. I’m informed at one point by a physician that I’m going to be given IV steroids and antihistamines to counteract my body’s response to whatever it is that’s now causing a multi-system anaphylactic reaction.
The most painful treatment? The Epinephrine injection into my left shoulder, necessary because the hospital is out of EpiPens, that’s what I think someone says when explaining why I have to endure this shot from hell. A laser beam of ache screams through my muscle which, momentarily, distracts me from worrying about whether I’m going to suffocate. I even cry a little as the pain lingers for minutes afterward. This is noteworthy because I rarely cry in public, usually just in private while watching the episodes of “This is Us” or weepers like “Titanic.”
The elephantine pressure on my chest starts to dissipate. Breathing becomes easier and it occurs to me how often I take air for granted. The red welts disappear as if by magic, although the tissue around my eyes remains swollen.
The ER doc reassuringly lays her hands on my boot-covered ankles and urges me to carry an EpiPen because any subsequent exposure to dairy will likely result in a more intense physiological reaction and will require immediate response. As she dispatches Scott to the pharmacy to fill the EpiPen prescription, she suggests I visit an allergist again.
It will be worse the next time.
Throughout the writers’ conference, I’ve been contemplating my identity as a writer with a disability, thinking solely about multiple sclerosis, given that it’s a degenerative disease and the damage it causes cannot currently be repaired, only managed. One of those workshops – “Writing Through the Pain: Faces of Chronic Illness in Contemporary Literature,” features two authors who live with multiple sclerosis. Poet Allison Blevins — whose latest collection “Cataloguing Pain” includes meditations on her MS — notes that, when it comes to her writing, “anger feels better and that’s where I am.”
Author Emily Hockaday, who lives with fibromyalgia and whose father died from ALS, says she hopes people “in the chronic illness community” feel comfort in having their experiences validated through her work, adding that she only recently began connecting publicly with those issues. “You know what? That is me!” she says.
During a break from the panels, I take a series of escalators to the bookfair in the basement where I spot Hockaday at her publisher’s table. I purchase her latest book of poems, “Naming the Ghost,” which she kindly signs for me. Over a rather sad, dairy-free salad and a can of Diet Coke, I flip through it. This passage stands out:
My body betrays me.
The fibromyalgia pain becomes something
more sinister: my father’s ALS, cancer, terminal.
Surely this will end with my death.
As I continue to process my Seattle ER experience, I remain leery about putting faith in what anyone says about the contents of the food and drink they offer me, worried that whatever passes my lips could again poison me, could send me on an impromptu, red-light tinged, wailing siren ride in the back of an ambulance as it races to the nearest hospital. It will be worse the next time. A simple cup of coffee will never just be a cup of coffee again.