An Ounce of Light

Photo by Jordie Poncy on Unsplash

Given all the fancy diagnostic tools in the world—blood draws and biopsies, CT scans and MRIs—my new doctor was relying on a popsicle stick. He split it in half, then took the pokiest, splintered end of that popsicle stick to the underside of my forearm. He scraped a long, diagonal line down my arm’s length, from outer wrist to inner elbow. Then he scraped a second line, running the opposite diagonal. On the wall of this office was the name of an Ivy League–affiliated hospital everyone knows and respects. On my forearm, scratched white into my pale flesh, was now a huge letter X.

I was game for the busted popsicle stick, which might tell you how desperate I was. But also, unlike the other six doctors I’d seen so far, Dr. A. moved with a degree of dispassionate confidence that made me trust him. Maybe, just maybe, he could tell me what was wrong with me.

If, in about ten minutes, my body responded to that engraved X the way Dr. A. suspected, then a simple allergist finally had a diagnosis. If not, well then, I would be left in the dark. Assuming the worst. Believing my body was harboring some mysterious disease.

We stared at it together, Dr. A. and I: the scratched white X. And we waited.

X

For seven weeks, my body had been ablaze with a low-key, invisible fire. The fire burned a millimeter beneath my skin. There were no visible signs of this fire. No rash, no hives, no redness. Sometimes when I walked and my clothes rubbed against my arms and legs, my nerve endings felt like they were being rubbed with sandpaper. On good days, it seemed like my skin was perpetually in that pre-goosebump stage of rising up. Other days, I was just very, very itchy.

The morning it began, I woke before the rest of my family, padded down the steps in the dark, and sat down to meditate. The meditation I do is pretty simple: release all thoughts. A thought includes an itch, the teaching goes, as well as the urge to scratch it. I’ve practiced this teaching for twenty years. But on this morning, I couldn’t. The urge to itch crept up my scalp, down my neck, into my arms. I left my cushions before the timer dinged.

It was five days after the new year, ten days after a Bernedoodle visited my home for the holidays, eleven days after the first somewhat normal post-pandemic Christmas, thirteen days after my third Moderna shot, one day before the first anniversary of January sixth, and three months after I’d read the memoir of a woman whose leukemia began with incessant itching.

Maybe the Bernedoodle had fleas, I thought. Maybe when I carried the wood inside for a Christmas fire, I’d also carried in some mites. I thought of an infestation, like the vitriolic MAGA- cap wearers breaking Capitol glass and hunting hallways.

I stepped into a hot shower. The itching got worse.

There are physical ailments that offer more elegance in their literary possibilities. Vertigo, for one, which poet Pádraig Ó Tuama describes artfully in his book Being Here. Physical pain can conjure a degree of respect or reverence. Tinnitus could be interesting on the page.

But itching? Scratching? It’s cartoonish, the namesake of the animated TV show inside America’s longest-running animated TV show. It’s a joke inside a nesting doll of jokes. Nobody wants to hear about itching.

But also, this essay is not about itching.

So, I won’t say much more, except to say that the worst part was not the burning. The worst part was that if you have no visible explanation for these symptoms, the potential diagnoses are terrifying. You are in the first stages of leukemia. Either that, or your kidneys are failing. Google told me so.

Maybe Google was overreacting, as she tends to do. So, I got the quickest appointment I could with a doctor I’d never met. I still haven’t met him, because his commitment to a clear telehealth image ended with his nostrils and chin.

“I’m just concerned that it could be something systemic,” I told the nostrils and chin. “Something serious. Especially since there’s no rash.”

I waited for him to say it was probably nothing. That I was young and healthy. That it would go away on its own.

“I am too,” he said, his nostril bobbing from the screen’s southwest to northeast corner, indicating that he was nodding. He ordered blood work right away.

X

I’d never seen the crystalline quality of light come so fully alive until I visited James Turrell’s artwork at MASS MoCA, one of America’s largest contemporary art centers. Turrell uses light as a sculptural medium, which is a very weird and cool and even breathtaking thing to see. “Squares of sky seem to float, suspended, in ceilings or walls,” writes one museum curator. “Architecture disintegrates; and brilliant geometric shapes levitate in midair.”

In one exhibit, you step into a vacant museum room and, on the opposite wall, a massive square of white light taller than you beckons you to it. It’s the only thing in the room. Everything else is dark. You think the white square is like a television screen, a physical object emanating light. But you step closer and realize it has space and depth. You put your arm into it, and your arm enters more light. Your arm moves past the museum’s wall.

How did he do it? What did he do? He made you see what wasn’t there. It’s a cutout. The light comes from a room beyond the room. The object of your attention is not an object at all. It’s more space than substance, more nothing than something. How can this be? How can you be drawn to nothing

But light is also something. It’s just not something you can touch.

X

I have a history of not trusting myself. I take a good job, then wonder for a year if I should not have taken it. I get the creeps from a coworker dude, then worry that I’m the jerk. I make a decision that feels good in my gut, then spend months haunted by the fear that it could be wrong. My initial reaction is often as clear as a newly cleaned window. It’s afterward that I struggle. Do I really know what I think I know? Do I see what’s truly there?

Years ago, when my husband and I lived in a first-floor apartment of a house with our two crawling babies, I did not love the bullshitting handyman who lived above us. But he was smiley and neighborly and, for the first year, seemed harmless. In the second year, his perpetual smile dropped. He started slurring a lot of his words. He started shouting at his wife in God-awful volumes at two in the morning. (We called the police.) In the driveway, he once made out with a woman not-his-wife, after which he banged his head so hard on the car doorframe that I was shocked he could still walk.

One afternoon, I found shards of glass all over the front yard, just as both kids were doing those favorite baby pastimes of crawling and shoving foreign objects in their mouths. My husband traced the broken glass back to the shared garage, where a bunch of window panes that once leaned against the wall now lay in a shattered pile. When we asked the handyman about it, he said one window broke, so he broke them all. That way, none would break again. I had to give him credit for his perverse logic. When you fear trouble, one answer is just to create the trouble you fear.

This is not safe, I thought.

When I told my landlord about the broken glass, I thought he’d at least express concern for his youngest tenants, my crawling kids.

Instead, the landlord stood at my door, squinted his eyes beneath his flat cap, and said, “Well, he says you left dirty diapers unbagged in the trashcan. And he had to scrub the trashcan clean. So.”

I took a step back. Unbagged diapers were not an equivalent. I knew this. I had to tell myself over and over that I was not the problem. I knew this too.

And yet, that didn’t stop me from doubting. Maybe I was the problem? Maybe broken glass was no big deal?

We should move, I thought. Should we move? I thought. How can we afford to move? I worried. Our rent included heat, and Vermont winters were brutal. My fingers felt unsteady as I clicked through online rentals, tallied the costs on our small income.

I relocated my whole family and didn’t realize how right I’d been until I sat in a quiet Cape Cod on a hill with nobody shouting above me.

Again and again, I can see what’s right in front of me. Again and again, I can talk myself out of seeing it.

But I can also talk myself into seeing things that aren’t there. It’s hard to know.

X

“What could it be?” I’d asked Dr. Nose-and-Chin before he clicked off the telehealth call.

“We’ll know more after the blood work,” he said.

It was a Friday. I wouldn’t get the results until Monday. That weekend, I didn’t sleep. I spent it teetering on the edge of terror. I thought of the memoir of the woman with leukemia, how the first page was all about itching, and the rest was a fight for her life. I envisioned chemo, medical leave, my family bankrupt, my body heading into the fire of a crematorium. It sounds melodramatic. It felt as reasonable as paying taxes. My whole body was on low-grade fire.

“What if it’s something really terrible?” I whispered to my husband in the kitchen while the kids played in the living room.

“Whatever it is,” he said, “it’s nothing we can’t handle.”

I cried into his T-shirt. My life felt so tender, my children so vulnerable and sticky and unaware.

On Monday, the office of Dr. Nose-and-Chin called. A voicemail said the blood work showed no concerns. The voicemail said that if the problem continued, I should follow up with my regular doctor.

The problem continued.

X

In Philly, you can lie on the floor of a Quaker meeting house before sunset and watch as a rectangular skylight opens above you. If it’s December, the whole sanctuary gets blasted with winter air. This is James Turrell’s “Skyspace.” Some people bring blankets and pillows. Squeezing yourself on the floor between two pews, or lying on the hardwood of one, you gaze up and watch the rectangle of sky. Slowly, perceptibly, the sky changes. It turns turquoise and lavender and green. It turns colors you didn’t know the sky could turn. Meanwhile, around the ceiling above you, cove lighting shifts into saturated hues. In contrast with the rectangle of sky, the ceiling turns tangerine and amaranth, aqua and emerald.

Is the sky really lavender? Or are the contrasting cove lights making it look lavender? It’s some kind of magic trick, made with light and color and time. If you were standing outside, what color would it be? You don’t know. And here, it doesn’t seem to matter.

X

The itching and burning were the worst after sunset. And sunset came so quickly in winter. Once the sky turned dark, I wanted to lie under the white fleece blanket my kids called “Marshmallow” and not move an inch.

I taught my classes at night. I stood in front of twenty students and wondered if I could keep teaching and undergo chemo or radiation or whatever I needed to keep living. One evening, I didn’t notice I was furiously scratching my back until I caught a redheaded, tattooed Gen Z-er staring at me. I withdrew my hand from behind my shirt. I forced myself to keep my arm at my side.

Sometimes, after itching, I found a few red micro-islands raised on my skin. Proof of something!

“Look!” I called out enthusiastically to my husband. “Hives!” He served dutifully as my audience of one to every dumb itching development.

But the bumps were minor, and an hour later, they vanished. They hardly represented the fire I felt. This is real, I kept telling myself. But without any proof, maybe it wasn’t?

X

How many times have I been told that I don’t see what’s there? That my version of reality is questionable? Or wrong? Hundreds? Thousands? Somewhere in the cosmic books of history, a tally exists for every time a woman is told she can’t trust herself. That guy is fine. Those boys mean you no harm. This problem is in your head.

Author Kate Bowler writes about doctors dismissing her severe abdominal pains for months before she was finally diagnosed with stage IV cancer. When author Tricia Hersey was pregnant, her OBGYN said her son looked “too big” on scans for Hersey to deliver the baby on her own. Hersey insisted her boy would be exactly eight pounds, but the OBGYN mandated a C-section. When the doctor weighed her baby on the scale, he was exactly eight pounds. “You knew!” the doctor said.

When my water broke with my first child, the hospital required me to submit a sample of the fluid, just so they could be sure it wasn’t actually urine.

“But I think I’d know the difference,” I said, “between peeing and my water breaking.”

“You’d be surprised how many women can’t tell,” the otherwise kind male OBGYN said.

I wondered if the doctor remembered that, in women’s anatomy, these two fluids emerge from different holes.

“Women have been driven mad, ‘gaslighted,’ for centuries by the refutation of our experience and our instincts in a culture which validates only male experience,” Adrienne Rich writes. “The truth of our bodies and our minds has been mystified to us.”

X

But what happens when you gaslight yourself? And do you do it because the culture does it early and often, or because you are just predisposed to self-doubt?

Then again, how could you know for sure, when you live in a world that thinks women can’t tell the difference between urination and labor?

It seems impossible to separate the self from the world. Just like it’s impossible to separate Turrell’s cove lighting from the rectangle of sky. The lighting turns green: the sky appears purple. The perception of one shapes the other.

X

I followed up with my regular doctor. Because she wore a mask over her nose and mouth, she was the opposite of Dr. Nostrils-and-Chin. Her dark eyes below her hijab were calm and caring.

She asked me to hold out my arms. She inspected them closely. It was late January. She said she saw evidence of dryness. She encouraged a gentler soap and lotion after showers.

I loved her kindness. I also knew this ailment wasn’t a surface-level need for lotion. It was deep and fiery. I still believed I was dying. I went home and hydrated. I also hardly slept.

Weeks later, I returned to her with the same problem. “What about leukemia?” I asked her directly. “Kidney failure?”

“The blood work looked normal,” she said.

“I just need you to look at me,” I said, locking with her blackish-brown eyes above her mask, “and tell me I don’t have leukemia.”

“You don’t have leukemia,” she said.

In the absence of proof of anything, my brain kept hanging on to the worst answers.

She added “anxiety” to my file.

“You think this is from anxiety?” I asked her.

“Anxiety can cause a lot of things,” she said.

X

But the real reason I’m talking to you about Turrell is because of one particular exhibit called “Hind Sight,” which isn’t about light at all. It’s about light’s absence. “Hind Sight” is contained in a room of absolute darkness. The sign beside the entrance shows you a little map, outlining the way to the exhibit. You’ll need the map. Once you take a few steps, you won’t be able to see anything. The sign advises you to use the handrail.

As you start down the corridor toward “Hind Sight,” the only source of light is behind you. The corridor is dark but not pitch-black. After a few meters, you turn 180 degrees to the right, and the clichés are insufficient but also true: darkness will close in on you. If you go with a child, this is when they’ll grasp your hand tighter. If you go alone, this is when you might seek out the handrail, flu season and Covid spikes be damned. The darkness becomes a dense and thick thing, and if you’re like me, you’ll put your hand out in front of you because you’re certain you’re about to walk into a wall. An ounce of light would be everything.

You feel the handrail bend, and you let it guide you through another 180-degree turn. Then it stops. Your hand drops into open air. You still think you could smack your forehead into a wall at any moment. You have no sense that the whole space has just opened into a room, but the map told you it would, so you believe the map.

You paw around in the nothing. Your hand eventually finds an armrest. You position yourself in front of a chair, ease into it, and wait in the black. You try to remember what the sign said: It can take as long as fifteen minutes for your irises to open sufficiently to perceive this work. In the meantime, you will be in total darkness.

X

I went to a dermatologist. She told me to change my laundry detergent. I did. No relief.

I went to a Chinese medicine practitioner. She felt my pulse and said I was “stressed out.” Which was true. Low-grade, full-bodied burning will do that to a person. She gave me an acupuncture treatment that made me feel amazing and calm and, for the first time in weeks, unconcerned about dying. Then the sun set three hours later, and the itching returned.

Google lightly suggested that maybe I had a full-blown bodily yeast infection, which also meant I was dying.

I kept living. I stopped Googling.

My general practitioner, to her credit, didn’t settle on my mental state as the cause. “Just because something could be from anxiety doesn’t mean we treat it as such. I think it’s time for an allergist.”

At nights after I taught, I lay as still as I could beneath the marshmallow-white blanket.

X

When you’re sitting in the pitch-black room, waiting for your eyes to adjust, you know something’s there. You just can’t see it yet.

X

Before I was in labor, I dreamt that I was in labor. Was it minutes or hours before? I don’t know. It was dreamtime. A soupy, timeless, magic time. A time when my self-doubts couldn’t possibly distract me from the truths I held inside me.

In this dreamworld, I was wandering through a hospital, strolling down the hallways, gliding past doors and between partitions. All of a sudden, I felt it. My water breaking. Suddenly, in the dream, I gushed.

Then, in real life, I gushed. I was closed-eyed in bed, cocooned in my sheets. Water leaked from between my legs.

I woke.

I realized: I had known before I knew.

X

“Your body is yours and knows the way.”
— Tricia Hersey, Rest Is Resistance

X

If you had asked me, during this itchy and anxiety-riddled time, to get very quiet and ask myself what I knew, I would have told you at least some things for sure. I would have told you more than my fear and doubt could offer.

I would have said: This is not from anxiety.

I would have said: I am not dying.

I would have said, still: I can trust my body’s messages. Something is not right.

X

Here is what you might see on a wall when your eyes finally adjust in the absolutely black room of “Hind Sight”: a barely there amorphous gray splotch. The faintest source of light. It’s so faint, you might not be able to place its shape. Circle? Oval? Blob? It’s like a reflection of a reflection of light, like a moon of a moon. Or it’s like a gray puddle’s mirroring of a dulled silver spoon, then dimmed a few degrees.

I leave “Hind Sight” wondering if I really saw what was there. I leave how I often feel: unable to trust myself.

X

We sat there together, Dr. A. and I, waiting for the white X on my forearm to speak.

Meanwhile, he wrote words on the paper-covered examining table. What he thought I had, he said, was dermatographia. Derma, he wrote, meaning “skin.” Graphia, he wrote, meaning “write.” The ability to write on the skin. The skin turns into a page, and a scratch will leave a mark that can last an hour. This is because the body does have hives, but they’re so deep beneath the surface layer of skin that they’re imperceptible.

If Dr. A. was right, a person could scratch my skin, and minutes later, red imprints of their marks would rise up and remain.

“Look down,” he said.

I lifted my forearm. Sure enough, the X against my blue veins had risen, bright red.

X

“Excuse me,” I say to a woman in a black shirt with the museum’s logo. She turns to look at me.

I tell her what I saw. I describe the barely there faint gray thing.

I don’t ask, Did I do it right? Did I see it right? But that is what I am asking.

She nods. “You saw what was there.”

You saw what was there.

It’s a sentence so simple, so relieving, so necessary, so everything, that I don’t know what to do with it. Put it in a trinket box? No, I want it closer. Hide it in my bra cup? I want it right by my beating heart. I want to swallow it down into the center of my body, that core where my contractions began. You saw what was there.

X

Dr. A. wrote more words on the paper. He said that because I’d experienced my condition for longer than six weeks (he wrote 6 wks on the white paper), it was officially chronic (he wrote chronic). He said chronic urticaria, or hives, could last two to three years (he wrote 2–3 yrs), or a lifetime. He did not write lifetime.

I nodded and felt euphoric. A name! A diagnosis! An answer!

One to two weeks after a Covid shot, Dr. A. said, these symptoms appear. He had seen the condition in fifty patients so far. A later online search would send me to places like the NIH and Forbes, confirming as much. Dr. A. said he was headed to a medical conference that very weekend, where doctors would discuss the reaction. Why does it happen? What does it mean? He’d learn more and let me know.

Meanwhile, there were allergy medicines we could try, he said. First over-the-counter, then more aggressive.

I was elated. Not because I might have a condition of vague burning and itching for the rest of my life, but because I had a name for it. And a treatment. I was not dying. I was just allergic. Seven weeks of believing I was a fragile bundle of illness, seven weeks of barely sleeping, seven weeks of manic Googling—even a few weeks of thinking maybe my anxiety was driving me to an itchy madness—and now I was free. And all it took was a busted popsicle stick scraped across my arm.

When I left the allergist’s office, the sky was bright blue, and the air was crisp, and the February sun shone with the strength that says we’ve surpassed winter’s darkest days. I felt like I was flying as I clutched my diagnostic report and a prescription for super strong antihistamines.

X

“What do other people see?” I ask the museum worker.

She explains that not everyone sees what I saw. For some, the faint splotch of color against the black wall creates a lava lamp of oozing shapes. This is what she herself sees. Other people see colors, especially purple. Some have reported seeing blue or red, or even flashes of green.

“But you?” she says. “You saw what was there.”

X

I took copious amounts of antihistamines. The burning and itching decreased considerably. Without feeling mildly aflame all the time, I could focus on my work. Without wondering if my body was quietly eating itself, I could laugh with my kids. I could enjoy a whole movie without Googling my untimely death.

“So you’re better!” Dr. A. said at our six-week follow-up.

“Well, I feel better,” I said. “On the drugs.”

He told me I could take the medication for the rest of my life.

I wanted to find out what he had learned at his conference. Did he gain any insights? Had there been any studies? What did the medical community say about people with my reaction?

Dr. A. turned away from me. Where his passion and curiosity for research had bloomed in our last meeting, this time the subject deflated him. He said who really knew why I’d developed the symptom. He said maybe I was just the kind of person who got dermatographia. He said maybe I would have gotten it anyway, with or without the vaccine. He said, in other words, that the problem was probably me.

In a month and a half, the symptoms were gone. Also in a month and a half, I got Covid for the first time.

X

I know my third shot gave me dermatographia. I know Dr. A. spoke the truth on my first visit. I know my Covid shots kept me safe when variants were their deadliest—and I’m grateful for them. I also know we shouldn’t shush stories, or bodies, that we find inconvenient—I know silencing does more harm. I know when my body is in labor. I know that my water breaks first, and then the contractions come—a second baby confirmed this. I know when a guy is not trustworthy. I know when it’s time to move on.

Some things I know, and I don’t know how I know them. But if I can’t see the thing I sense, or if I can’t validate my intuition with a person’s opinion, I flail. In every room of my life, I need a museum attendant. I need someone to nod at the exit of precarious or strange events and say, Honey, yes, you saw what was there.

X

An hour into “Skyspace,” a mechanical timer goes off. The door to the skylight protracts. The ceiling becomes a solid enclosure again. You pick yourself up off the floor, or the pew, grab your pillow, and head out of the sanctuary space. A Quaker guy in his sixties stands at the door and thanks you for coming.

An hour ago, when you’d entered the meeting house, you’d ignored the sky. Now you want to see it fully. It’s no longer contained in a rectangle, so you have access to its immensity. It’s no longer surrounded by Turrell’s cove lighting, so you can name its unfiltered color. Maybe it’s a chestnut-charcoal. Maybe it’s an indigo-onyx. Maybe it’s humming on the horizon with a line of electric blue. Regardless, it keeps shifting, changing, getting darker, darker—except the stars. All those stars!