Support Group

In a glass skyscraper facing west, women sit around me in designer desk chairs pulled up to gleaming workstations. I do my best to smile and nod at my coworkers as I walk past them pecking at their keyboards—tedious women in their late twenties with bleached hair hanging down their backs like slabs of wood, their rubbery faces creased in concentration as they skim the latest media campaign calendar, refresh their email, praise the newest ad buy. They drink lemon water and wear faux leather ankle boots with cheap button-down shirts that pull at their chests, polyester office sweaters flapping at their sides as they gesture to each other. Their bodies sway with exaggeration as they discuss the latest earnings call and what the cafeteria menu is for lunch. They speak quickly, with excitement. They’re always cold. One of them pulls her hair into a ponytail. Another raises her desk to standing. A few get up and go down to lunch. They walk like they’re falling forward and hold their laptops against their sides like trays.

I pack my lunch every day instead of eating the free meals the office provides downstairs. Two slices of white bread with mayonnaise, iceberg, and a slice of turkey, packaged in tin foil and eaten at my desk. Sometimes an apple wrapped in a square of paper towel. It tastes like the refrigerator. Consistency is important. I spend the hour alone so I can scroll through the message board, catching up on the morning’s posts.

I’m new to the group, just diagnosed. Anybody else have blisters?

Long time lurker, first time poster . . . does it make u tired when u have a flare?

My teeth are becoming discolored. Does anyone have recommendations for whitening products?

I have been suffering for a year from burning in the vulva area.

Are anyone’s lesions tingly? I am experiencing this for the first time on my thighs.

I have the marks all over my body. How long do they take to lighten?

Will I ever manage spicy food again?

There are photos, too, and I study them closely. At 10:30 a.m., Candi posted a photo of a bald patch at the top of her scalp, the thin, white skin covered in taut pink pustules. Twelve likes and fifteen comments. All sympathetic, commiserating. I read quickly through each. There’s another from Kestra, twenty minutes ago: a close-up of four leaking scabs on what looks like the side of her wrist. I can’t stop scratching them, she writes. A plea from Tanya—Can anyone help me?—below a photo of thick calves covered in a mass of spots so dense her lower legs are grey. A few blackened blisters hover around her ankles. I scroll back up to the newest post. Sheila has written Lord I pray for every person in this group, including myself.

I take a sip of coffee and feel dizzy. I inhale and minimize the window. Anna is describing her favorite store’s holiday sale and how it’s more respectable, smarter, to shop online. The one with the ponytail is having some sort of conniption about last night’s date. I get up and walk down the carpeted hallway into the bathroom. It’s empty, and the air is cold and smells heavily of garlic and air freshener. I lock myself in a stall and lift my shirt, prodding at the bowl of my stomach. I slide my phone out of my jeans and turn on the flashlight, aiming it at my skin.

The blisters came two summers ago, after college. I noticed them in the shower one morning. Rinsing quickly and late for work, I swiped a soapy hand across my stomach and felt several small bumps, like flecks of sand. Soaking the bathmat, I held a hand mirror to my skin and saw hundreds of tiny pustules on my front, with more along both wrists. Those were already bigger, thick and raised like mosquito bites. I snapped a few photos with flash and texted them to my mother, then dressed quickly without looking down.

I remembered how a rough patch of skin had developed on my upper arm as a child. It had been about the size and roundness of a quarter, white and itchy. My mother had found it while dressing me for school. It had turned out just to be eczema, but the doctor, in an effort to simplify things, had described it to me as a mushroom. The next few days at school, I was proud to show it off, wearing thin-strapped tank tops, letting my classmates touch the spot if they asked. Each night after my bath, I sat on the lip of the sink as my mother rubbed thick ointment into my arm. The rash was gone within the week, and I had felt a sharp sadness at its disappearance, like a bone caught in my throat.

I step out of the stall and lean onto the sink, looking at myself in the mirror. Greasy hair cloaking rounded cheeks, down-turned eyes, wild eyebrows, my pale neck poking out of a stretched-out sweater. I pick at a few spots above my collarbone and open my mouth to tongue the inside of my cheeks, feeling the white lacy ridges that have formed. Wikham striae, Wikipedia told me. I curl my top lip to reveal a wet, pink gum. No sores yet. The door opens and I snap my mouth like a fish.

Consistency is important.

Back at my desk, I refresh my email. One of the girls laughs at another and says, “Right?” Next to me, Devin asks what I think of her new haircut. She fluffs it with her hand, and briefly, I’m enraptured by its smoothness. I look out the window at the glass buildings gleaming white, trying to envision different scenarios that may arise, like what if a bird flew straight into the window and died. Some hours pass. I have a thought about texting Nicole to get a drink after work.

I weave through the farmer’s market on my walk to the subway and think about stopping to buy some apples, a wet bunch of lettuce. The stall owners are calling it a day and packing up what’s left of their tomatoes, their few well-formed bundles of bok choy. I look at people’s shoes and wonder where they’re coming from, the apartments and people waiting for them. I try not to think of the blisters, try to be just a body in the world, moving forward among the stalls and trees, beneath the cowhide sky.

I walk quickly down the stairs into the thick air, swipe through the turnstile and slide on headphones, playing the first podcast that pops up. It’s a segment from WNYC and a nasally voice is talking about John Keats, the essential ability to hold in your mind two competing ideas at once, some theory about the mysteries of the natural world. The voice drones about life’s uncertainties, its evenness soothing as it orders me to stay with them through the commercial break. An ad for mattresses comes on and I open my notes app and type the words “negative capability” as the train pulls into the station.

*

My mother assured me they were bug bites, and they itched enough that I believed her. But after a week, they got worse—the ones along my wrists itched so much they felt cold. The small bumps on my stomach grew from small specks to hard, raised sores. Every morning more appeared, forming in creases of flesh I had never thought about—the folds behind my knuckles, the seams between my toes, the lines in my neck, my belly button. I spent many nights staying up late reading the internet, staring at bright pages diagnosing eczema, psoriasis, vitiligo, heat rash. I held my wrists to the screen as I switched between tabs of image searches to compare diameters, coloring, shape.

The dermatologist wasn’t sure. He scraped at the top of a sore with a scalpel and told me it wasn’t eczema. He looked like I looked unwell, scanning my face and eyes.

“Have you gotten a Hepatitis C test?” He asked. Just to be sure. “Sometimes that’s really the issue. It could be viral.” His face was smooth like plastic with hard, mean little eyes.

“I think so,” I mumbled, nodding. “No fatigue or anything like that.” Did dermatologists go to medical school? I tried to remember what the internet photos looked liked, shifting awkwardly on the crisp paper.

“You ever wash your sheets?” He felt the inside of my cheeks with a gloved finger. Realizing how little he knew made my chest vibrate. “Also, stress doesn’t help. Rashes are often psychosomatic.”

I asked him if he thought my hair could fall out, like if I started getting the spots on my head, and could he please look at my scalp with that light. I raised my arms to show new clusters in each armpit, lowered my socks to expose rough ankle bones, remembered to lift my shirt so he could feel the bumps along my lower back. His cold fingers spread goosebumps across my shoulders.

The nurse came into the room and lanced a needle into the top of my hand, the biggest spot they could find. I looked away. Her face wobbled into a smile and I stared at the ceiling. A scar there would be less noticeable, though I’d have to give up a hand modeling career, she joked. I’m sent home with a tube of greasy eczema cream to try out and navy stitches knotted deep into my flesh like a quilt.

*

Home from work, while waiting for the hand of time or whatever to carry me to my death, I google negative capability. I click open a pixilated webpage. Embrace uncertainty, live with mystery, make peace with ambiguity, www.BrainPickings.com tells me in curling script. I blink hard, my contacts dry, and I picture them lodging themselves behind my eyeballs, scratching my corneas. I take a sip of beer and let out a small burp, one of those quiet ones, a release of air. At the bottom of the page, flashing letters ask me to set up a recurring donation of fifteen dollars a month. Not a bad price, really, if you’re looking to understand the mysteries of life.

I try not to think of the blisters, try to be just a body in the world.

I glance up at the dirty laundry stacked in the corner. It’s been weeks since I’ve cleaned anything. Dishes are piled in the sink, food hardening along plates and forks like moss. I rarely turn on the overhead lights because the fluorescent bulbs hurt my eyes. I haven’t fixed the coffee table leg, haven’t gotten around to putting anything up on the wall.

Mostly I spend time alone in my room, anyway, sprawling on my bed in the artificial dark—a twin with a plywood frame. My roommate is always at her boyfriend’s. I like the thought of having a boyfriend, enjoy making eye contact with unassuming men on the street. But the thought of a stranger lifting my shirt, seeing the spots, is always too much: Sitting on the couch with some boy, us slipping around the cold, stiff leather of the cheap sectional as I try to explain my skin infection. No, the most I desire is a faceless affair, the safe meeting of anonymous bodies.

I switch tabs to the forum, skimming a couple new posts. I’d found the group when it had all started, by typing in “skin rash itchy, cancer on stomach, psychosomatic?” into Google and going deep. Like page ten, eleven, twelve-deep. There was a lot about rosacea and shingles, pages on autoimmune diseases, Lyme disease, chronic fatigue. And then a link took me to a page where hundreds of people were posting images of small blisters and captions like Does anybody else have this? and I just made another appointment, I’m not imagining this, right? An endless stream of pink, wet mouths, white-capped sores, flakey scalps, yellow gums.

I scroll to the top and see a post from Sandra: I said I was going to wear a dress for my birthday and I did!!! I’m making peace with it, this will NOT define me. I zoom in on a photo of her in a short, black polyester dress and silver stilettos. She’s smiling wide beneath thinning bangs, sores dot her legs and arms. She looks confident, pleased with herself in some subtle but essential way. I throw her a like, feeling generous. It isn’t often I participate in the group like that, make my presence known, but sometimes I do feel indebted, like I owe them something. My fellow sufferers. And the mindless scrolling has sometimes paid off, has given me something in return, though to get to the useful stuff I have to search through photos of limbs coated in peeling blisters and close-ups of purple fingernails breaking off. These suggestions are always simple, like eating the same meals every day, taking turmeric pills, cold showers only. It sometimes seems to help if I do it all regularly.

And it’s where I’d read about SkinEze from Cheryl—embarrassingly, the group’s “conversation starter.” I was intrigued by its all-natural ingredients—beeswax, lemongrass, konjak root, marjoram oil, coconut oil, lavender—and its promise to soothe and cure. I ordered it from Cheryl’s Etsy store and three weeks later it arrived at my apartment: a sixteen-ounce plastic tub labeled in thin-handwriting, packed to the top with an opaque cream so strong I could smell it through the cardboard box. I had a bad feeling about the state of things, but SkinEze calmed me. It became a part of my self-prescribed beauty routine.

Each night after a cold shower, I cover my body in the sludge and rub a tablespoon of tea tree oil into my scalp. While standing naked on the bathmat, I eat three turmeric capsules, a vitamin D tablet, an iron supplement, two magnesium capsules, and a sugar-coated Advil. I brush my teeth with baking soda and water and swish coconut oil around my mouth. I wash my hands and then dress in long cotton pajamas, socks on my hands and feet. I turn off the lamp and run the AC on high. As I drift off, I imagine the ointment dissolves my puckered skin to reveal new, clean flesh beneath. That I shed the sores and they slide off my body, drifting into the air like dust motes and disappearing in the night.

Each morning, the socks flung off, I feel along my hairline and count new bumps, run my hands along my stomach to check the blisters. They’re still there, multiplying.

*

“Hey, chica! Can I give you some feedback on our meeting just now?” my boss is telling me. I minimize a window and spin my chair towards her and say, “Noooo problem!”

She tells me that I spend too much time looking down at my hands, fidgeting with my sleeves. Eye contact is important. Did I have something going on? I smile and shake my head and say, “Thank you for the feedback! Just tired!” and she says, “Okay, great, girl, just wanted to check in!” and I say, “Cool, thank you!” and spin my chair back around.

She is wearing a sweater that has been repeatedly advertised to me on Instagram and is so unashamed that I feel sorry for her. I chew a piece of ice and scratch at my wrist. There was definitely something embarrassing about Jess, in her total lack of self-consciousness. I wouldn’t be surprised if she got up and started twirling around, even hugged herself. It’s her unadulterated joy that gets to me. We’re so lucky to be here, she’s always saying. It’s so nice. We’re so lucky.

The day moves on. I copy edit a business marketing article about the Super Bowl. I’m allowed to refer to it only as “The Big Game.” Across from me, Devin and Alice are splitting a cupcake in half with a plastic knife. They are being bad today. I feel very still and very empty. People around me are laughing, chatting. I can hear soft music leaking out of headphones. I skim The New York Times wedding section and read about a couple who met each other on the uptown C in 2013. I switch tabs to scroll Craigslist missed connections, trying to find descriptions that resemble me. Instead, I read a posting about a man who hit his head while entering a train in Greenpoint.

I look up to see Carrie eyeing me like a worried dog.

“I have a lot of bug bites right now, too,” she says. “So weird.”

“What?”

“Don’t scratch! Or touch!” She hands me a Band-Aid. God, what? “Put that on so you don’t scratch. Otherwise you’ll have a scar.”

I smile that particular smile designed to hold back tears and use my reflection in the laptop screen to peel the Band-Aid onto an oozing spot on my neck.

*

The biopsy came back inconclusive, so every month I go back to the office for a check-up. I’m not sure what they’re monitoring. The appointments are short because the doctors don’t know anything new. They take my blood and measure potassium levels. They lift my shirt and nod at my back and feel the lymph nodes in my neck. They ask me if I am still itching. Yes. The spots were still appearing all over at a regular rate, though some of the first outbreaks had gotten better, had become less painful.

I see a new doctor. He tells me they can inject each of the red, angry spots with cortisol, which will make them flatten out and “deactivate” more quickly. I am unsure.

I imagine the ointment dissolves my puckered skin to reveal new, clean flesh beneath.

I look at him and suddenly feel extremely tired. “But there are so many spots?” Sweat gathers in my armpits. I can smell my own deodorant. “Wouldn’t that take a long time?”

“Yeah, it may not be worth it.” I look at the nurse. Her hair looks like a hat. “The injections only sting a little bit, and they could, maybe, speed up the process. But we see rashes like these sometimes lasting several years before going away on their own.”

It’s true that with time, some of the angriest spots on my front had started to flatten, the hard, blistered caps peeling away. When that happened, they’d leave behind flat, purple marks like bruises. They no longer itched, but I was left with ugly reminders of what had been. And new clusters were still forming, now on my shins and upper arms.

I stare at his face, his eyelids a thick curtain of skin.

“It’s not exactly a permanent fix,” he says. “Remember, stress doesn’t help.” He looks residually arrogant.

I nod. All is well, I say to myself. The phrase had surfaced in my brain, an incantation from somewhere—a book? My mother?—that had lodged itself there.

“There is a type of therapy we haven’t tried. UV radiation. Basically, zapping you with light to kill the bad cells could keep them from coming back. It tends to work, though it’s a bit of a process.” Something about the way he keeps saying “process” gives me a chill. It feels abstract, like it’s all the same to him. What I want is a quick and immediate fix, to not have to think of my body unfolding steadily through time.

*

At home, I search the forum for mentions of “light therapy” and find nothing, which leaves me feeling betrayed. Why have I placed so much trust in this ghostly chorus of stricken women? They don’t know any more than I do. I briefly consider writing a post to the group, sharing the little I’ve gleaned. But diverging from what they tell each other feels like another betrayal. No, maybe it’s better, for everyone, if they don’t know.

I begin wondering if maybe the sun is enough. I start going to the nearby park to sit on the grass with my face to the sky. I roll up my jeans, bare-shinned against the thick wind, willing the blisters to burn off. Sometimes I take off my sweater and lay down in just my bra, raising my arms to expose my armpits, feeling like a child.

This is all a consistent sort of malaise, a draining of feeling. I long for the urge to cry or scream, to be gripped by some emotional surge. But feelings sweep past me, like headlights down a dark alley. My plunge into despair is entirely, vividly physical. The rash stays. Sometimes when I look at the inside of my arms straight on, the spots seem to have disappeared, and for a brief moment, I can marvel at their smoothness. But then I extend my elbows and hundreds of spots come into sharp relief, like looking at a painting up close.

All is well, I say to myself.

More blisters flatten, leaving behind masses of smooth, dark marks. But new spots still grow anywhere the skin is pale and soft. I pick off scabs as if their physical removal signifies recovery, leaving bloody craters, and new, pink blisters in their wakes.

*

I have to go to another office because my usual place doesn’t have the right machine for the procedure. I walk instead of taking the subway, and the air smells fresh and tight, like rain. I check my reflection in a window before heading up, attempting to get the long-suffering look off my face. The office is on the fifth floor at the end of a long hallway, and inside, I squint against the fluorescent brightness. A nurse checks me in. She looks unbearably mortal, black hair tucked neatly behind her ears, a large, fake diamond strung on a silver chain at her throat. Briefly, I imagine grabbing it.

I fill out my information on an iPad and hand her my insurance card, then sit on a warm, cloth-covered seat. Only one other person is waiting, an older woman with tired blonde hair, reading a copy of Time. I avert my eyes, careful to look only straight ahead at the wall or down at my hands. I am terrified of somehow communicating my private ailment, such secret humiliation, that I’ll inadvertently leave behind some clue as to why I was here. What’s she in here for, in her prim sweater and dark jeans? She looks like someone who gets annual skin checks. I picture her naked, ensconced in a paper gown, the doctor quickly scanning for oddly shaped moles. I look down at my own jeans, black and ripped at the knees, an old grey sweatshirt folded over the tight waistband. I’d kept on my heavy men’s coat and scarf, even inside.

Sarah will be helping me today. She looks about my age, maybe younger. An enclosed, pale face, narrow shoulders and thin fingers. The room is cold and feels heavy with peroxide and mildew.

“So what you’re going to do,” she says in a chipper voice, “is take off all your clothes. You can put them on that chair.” She smiles and lifts up a Ziploc bag with my name on it. “This will be your bag, you’ll use it every time you come back.”

I think about what returning to this cold office will be like, standing here staring at Sarah three times a week. The need for continuous treatment felt like some strange bondage to my body, a required dedication that disturbed me. I feel sudden rage at Sandra, Tanya, Candi, those women who have made me hopeful, convinced me into thinking I could be easily cured by some cream, a diet, a single ray of sun.

“There’s a tube of sunscreen in here, you’ll need to generously apply it to your nipples,” Sarah says.

“What?” I let out a dry, hiccupping laugh. Sarah glances up from the baggie, thumbs a mostly healed zit at the corner of her mouth. What does she think of me? I picture her at her college graduation, grinning in a cap and gown, eagerly awaiting her life to begin as a training associate in a pitilessly lit Bushwick dermatologist office. That she had a passion for medicine as it involved skin, had finally gotten the job she’d worked so hard for. It was not impossible. She is looking at me intently, grinning. She seems happy.

“Also—and this is really important—you’ll need to put this over your head when you’re in the machine.” She takes out a white cotton pillowcase from the bag and hands it to me. “Make sure it fully covers your face.”

I nod. I am laughing again. I can feel myself turning red, like when I take a B12 vitamin and my face flushes.

She holds up a pair of goggles. “These will go on under the pillowcase—obviously. Extra protection.”

I take them from her. The lenses are iridescent and they look like beetles. I bite the inside of my cheek.

“The doctor wants you to hold your arms up over your head to make sure that area is exposed.” To my surprise, I feel a sudden wave of tenderness, a protectiveness, toward her. “Any questions?” I shake my head.

“Okay, so.” Her voice thickens with enthusiasm. “Clothes off, sunscreen, goggles, pillow case. Then you’ll ring the bell and get into the machine, and I’ll come back in and turn it on.” I want to ask her how I will both ring the bell and maneuver into the machine with a pillowcase over my head.

“It doesn’t hurt, right?” Dread rears up in me.

“Oh, honey, no, of course not. It’ll just be bright in there,” Sarah says, and there is a moment when I think she is preparing to hug me. We look at each other as I start to unwind the scarf from my neck. Honey. “Okay, I’ll leave you to it!”

The indignity of what I am doing turns my stomach as I continue undressing. I eye the machine, a long metal tube with a curved door, about seven feet tall and pushed tightly against the wall.

The need for continuous treatment felt like some strange bondage to my body.

With my boots off, I look inside. Its walls are lined in long, cylindrical light bulbs covered in what looks like chicken wire. There’s no top to it, which comforts me. On the outside, there’s a small screen with the number of minutes of exposure, and an absurd red button. I take off my pants and underwear. I remove my bra and take out the requisite sunscreen. I picture my nipples withering, like grapes on a vine. When I’m fully naked, bare feet on the cold linoleum, I extend an arm to ring the bell. The goggles tint everything orange. I walk quickly into the machine and close the door behind me, then fit the pillowcase tight over my head. I hear the door slide open and Sarah comes in. “Alright, five minutes. I’m going to start it now.”

The machine is loud, a whirring that hurts my teeth. I squint and through the goggles and fabric I can see that I am bathed in light. I spread my feet and stretch my arms.

Silently, I start counting seconds. I try to imagine what I could post in the group. There will be no evidence, no proof of what has happened. I want to go back and be in all the places I had ever been and see it all again with what I now know—this isn’t the end of something.

I cannot tell how much time has passed. I close my eyes. Sarah was right. I don’t feel anything at all.

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