The Camera

THE CAMERA

by Teresa Milbrodt

(Content warnings: mention of death, ableist microaggressions)

After a hemorrhage my vision goes foggy, like a pink paisley cloud has settled over my eye. I need my niece or boyfriend to help me at the coffee shop, make sure I add the right amount of sugar and cream to my mug. I take Scott's arm to slalom around other customers as we find a table. The hemorrhages hit me hard. I remember what it’s like to rediscover the world in the smooth ceramic of my mug, scent of roasted beans, bittersweet coffee on my tongue, constant hiss of the milk steamer—details I too often ignore. 

I've been blind in my right eye since birth—it’s normal vision for me—but when the every-other-month hemorrhages started happening in my left eye, I realized it might be nice to have a backup. While I heal, it's difficult to draw or paint for a couple of weeks. I can still teach at the community college because I've memorized lectures about line and color, rhythm, and unity, but my consignment projects and artistic livelihood are thrown off course for about a month. 

There’s an aesthetic allure to this blurred world, but the ethereal rose-colored fog that makes objects hazy and haloed is simply red blood cells floating in front of my retina. 

“Thanks,” I say to Scott, and to my niece Lea, who carried my donut to the table. 

“You two could live with me for a bit if you wanted,” says Scott. 

“We're okay,” says Lea, who is ten and very bright. She’s been staying with me for the past four months, since her mother died. “I don't mind helping.”

She reads my mail and texts, something that I needed Scott or a neighbour to do before she came to live with me. I have a white cane for navigating stairs and sidewalks. My ophthalmologist says the bleeds are caused by over-vigilant blood vessel growth in the back of my left eye, the same kind of growth that made the retina detach in my right eye when I was a baby. For over thirty years the blood vessels in my left eye have behaved themselves, but now they're restless. My ophthalmologist zapped some of them with a laser, but after a couple months they got bored and started growing again. 

It takes a few weeks for my eye to clean itself so I can walk without a cane, but bouncing between levels of sight and sightlessness feels chaotic. I hate the moments of panic when I have another hemorrhage, which starts with a haze that reddens and darkens over the course of four or five hours. I’m more light sensitive after those bleeds; I get frequent headaches, listen to audiobooks with my eye closed, and dream ideas for my next projects. My ophthalmologist says my retina could but probably won't detach during a hemorrhage, though I need to see him the day after one happens to be sure. At each appointment he reminds me to go to the ER if I see lightning flashes, or a lowering curtain that doesn't move. That would be my retina detaching.

•••

I didn't plan my life around the possibility of having a kid—not the tiny apartment, or how I’ve crafted an economic existence around teaching adjunct art classes and doing commission work. For extra money, I sign up for medical tests at the university hospital. Usually that means trying seaweed supplements, sleep aids, and other medications that probably won't kill me. I also have sporadic appointments with my ophthalmologist, and fret about the cost of keeping my sight. My health insurance doesn't cover much.

I'm waiting for a tech to photograph my retina (again) to check for damage after the latest hemorrhage when I hear him talk with someone in the hall about a new experiment. The other guy describes it as “Harebrained, but ground-breaking if it works.”

“How will he find test subjects?” the tech wonders aloud.

“Knock on doors in the vision clinic and ask for volunteers,” says the other guy. His voice doesn't conceal his grin. 

“Test subjects for what?” I ask the tech when he comes back in the room. He pauses for a moment, maybe forgetting I could listen in, but he's prone to be chatty.

“This ophthalmologist, a surgeon, and a few other researchers have teamed up to hook tiny cameras to people's visual cortexes and take pictures,” he says. “It's the first stage in a bigger project to feed those images back into someone’s brain and improve their sight if they’ve had vision loss. I guess the camera worked in rats and the first guy they tried. He was pretty old.”

I ask for the ophthalmologist's number, call his office, and request more information and the pay rate. He asks if I can come for a consultation. Three days later he offers a cup of weak coffee as I explain my variable vision. He's intrigued, says the hole that they’d make in my skull for the camera would be very tiny, and shouldn’t affect my motor control or emotional state. At least it didn't in rats and the human test subject. 

He gives me reams of paper that explain their research studies. I can't read them since the pink paisley fog of my latest hemorrhage hasn’t cleared, but I'm intrigued. It is important for me to be a responsible auntie with my intact brain, but that task includes buying food and paying rent and covering the costs of having a kid. The economic possibilities of lending another snippet of myself to science are interesting. The pay rate is good—as much as I’d make in two and a half months, in addition to covering medical expenses and time lost from work. The camera makes me wonder about aesthetic possibilities. Maybe those photographs could be fit for a gallery show. I could recuperate some of the income I lose when my vision turns rose. 

I show the documents to Scott and Lea while we eat Chinese take-out—beef with broccoli for Scott, chicken with oyster sauce for Lea. Usually I’d get mixed vegetables with tofu and some manner of spicy sauce, but today I need the decadence of fried dumplings. Scott flips through the papers. 

“You’d need a medical degree to read this,” he says.

“It's worked in rats and an old guy,” I say.

Is it wise to ask a thirty-four-year-old computer programmer and ten-year-old kid for their opinions on a sci-fi robotics experiment? Probably not, but I do anyway. My niece reads the paper from my fortune cookie.

“Those who live in straw houses should have good building skills,” Lea says. “I think that means go for it.” 

I'm too curious and frustrated not to. The ophthalmologist said it's a tiny hole. The rats have been okay.  

•••

I should be more worried about the surgery since they’re somehow doing it on an outpatient basis, but the ophthalmologist and his surgical partner remind me for the millionth time that it's a very small hole for a very small camera that shouldn’t affect my vision. They don't tell me exactly how it'll work, just that it's pretty easy for brain surgery, and the camera will be simple to access via my laptop with a password. To take pictures, I tap a tiny button on the side of my head. I can disguise it as a scratch. Or like I'm thinking deeply about something.

“You're lucky to try the prototype,” the ophthalmologist says. “Most people would have to sell everything they own and take out a loan to cover the expense.”

I don't know if this is reassuring, since it’s not the most enviable lotto prize. I’ve won an extremely costly, extremely experimental procedure due to a near-desperate economic situation—I'm scrimping to pay rent, my niece sleeps on the futon, and we’re praying we don't have to move in with Scott. It would be manageable, but a tighter fit.

I don't remember the surgery, though I am technically awake for it—just doped up on pain medications. Later, Scott says that I kept singing “Frère Jacques” in recovery. The ophthalmologist said to call if I didn't stop after a couple hours. When I come back to myself I'm lying on Scott's couch, and Lea asks if I'd like pizza. I shake my head, just wanting toast since my stomach feels odd. Probably the anesthesia wearing off. I finger the bump on the side of my head that feels like a zit. It's tender, but I can't help trying out the camera. The last hemorrhage was two weeks ago, so my world is still hazy and haloed with the remnants of blood. We have established the passwords and laptop link to my brain camera, so downloading photos is too easy.

“Wow,” says Scott when I show him the image. “It's like seeing the couch through a filtered lens.”

“Blood cells,” I say.

“That looks awesome,” says Lea. “Ghost world.”

I agree that it's beautiful when I don't need to read something. Over the next few days, I take pictures and pictures and pictures, but after another week my eye has cleaned itself thoroughly enough that they are less interesting. Since I can read my email and snail mail without assistance, I return to routine, catching up on commission projects and grading students' sketches that have been on my desk for days. For the first time in a year and a half, I wait with slight excitement for the next hemorrhage.

•••

Lea says her pain flares started before her mom died, and got worse after that.

“The first doctor told Mom it was stress and I should relax,” she said after she moved in with me. “Others said it was all in my head. Mom believed me, so we went to more doctors.”

How many specialists did they see before a diagnosis of fibromyalgia? My niece doesn't remember, but she was put on medications and a milk-and-egg-free diet in the hopes of decreasing her flares. We do stretching exercises in the evening. She hates them and says it's easier if I'm with her.

We both ache for my sister, who was three years younger than me but acted like she was older. She'd be pissed that I got the camera implant, say I was putting my teaching and graphic design work at risk. Now I don’t have to argue the point with anyone but myself. Lea has her own body to worry about, and the pain that makes it difficult to get dressed for school.

Some nights I let her sleep with me. We hug each other and try not to tear up.

•••

The next fog happens seven weeks after my camera surgery, a Wednesday night. I sit up straight at my drawing table when I see a slight gray haze in the corner of my vision, the first sign of a hemorrhage. I work until the lines on my paper have disappeared into a cloud of white. It will turn gold, then pink, as blood cells seep in front of my retina.

“Picture time,” I sigh to Lea, who's doing homework at the kitchen table.

“I'm sorry,” she says, patting my hand.

I take a few pictures of the apartment in these early stages of the hemorrhage, but not too many. I’m worried about the possibility of seeing the lightning flashes and dark curtain of retinal detachment. I’m always nervous about that until the bleed stops, when I’m mostly reassured that I avoided serious and lasting damage. Now I grab my watch that announces the time when I press a button on its side. It lives in a ceramic bowl on my dresser. Knowing the time is comforting when I can’t see numbers on the clock.

The morning after a hemorrhage is rocky. The world is awash in pink waves that look much like a lava lamp. I slide my hand along the kitchen counter, remembering how to move when I can only see a foot in front of my face. I distinguish the grape jelly from the strawberry because the jar is taller. I note that the toast is done by the smell of browning. After I hug my niece goodbye and send her off to school, I grab my white cane from where it's been hanging on the closet doorknob, folded up and waiting.

I lock the door to my apartment and graze my fingers along the hallway wall, swinging my cane back and forth until the tip drops down. I’ve found the steps to the first floor. Outside I gaze down a street of pink paisley swirls and decide to walk two blocks to the park, though when my vision is this cloudy it might not matter what I'm photographing. Does the camera have a maximum storage capacity? It must, but I take pictures until I need to sit on a bench and rest. I close my eye. The brightness of this landscape is exhausting, but I’ve survived another hemorrhage without retinal detachment.

I’ve thought too much—or maybe just enough—about the potential to further lose my vision. There are things I wouldn’t miss seeing—nasty bits on the evening news, frowning people, disorderly desks that make me itch to put papers in stacks. But there are other parts of the world—ugly smells, noises, tones of voice, pavement cracks that catch the tip of my cane—that matter more when I have less sight. Since I've had these pink fogs, I've met other folks with limited vision who say it’s not the end of the world, just another way of moving through it.

“I used to be 20/70 and now I'm 20/200,” said Katie, the low-vision trainer from the Sight Center who brought the cane and talking watch to my apartment after I signed up for services. “You figure out how to adapt. It's not easy, but the more you do things with less sight, the more normal it becomes.”

“Tell your students to say their names before they ask or answer a question,” said Sam, another trainer from the Sight Center. She used to teach second grade but now she works in elementary schools helping kids with vision loss and calming terrified parents.

“Parents are the worst,” she says. “I remind them that their kid isn't dying, just needs large-print books or to learn braille. Kids are adaptable.”

I wait until Lea gets home to help me download the pictures to my laptop, since I can't see the keyboard. She says I took over three hundred shots.

“These are so cool,” Lea says, an aesthetic judgment I don't trust since I'm her auntie. But when Scott comes over, he says I have a good thing going.

“No wonder you need the cane,” he says. “These are really… wow.”

“Thank you,” I say, not expecting that validation would be a side effect of the camera. I haven't been making this up. The bright yellow line along the curb is invisible to me until I'm standing on top of it.

I wait a week and a half before approaching the owner of a gallery where I’ve previously shown my work. It's tucked down an alley in our one-block arts district. The pictures I submitted before were pedestrian, colored pencil drawings of animals from the humane society, so I'm nervous about this reveal. I spend too long explaining my hemorrhages and the camera surgery to the gallery owner, who touches my hand and says to show her the damn pictures already.

She's quiet while scrolling through the photos. I feel those fabulous fifteen minutes of fame floating through my fingers and falling on the floor. Then she asks when I could have the pictures printed, matted, and framed.

I ask how many. She says about a hundred. I say I don't have enough money to frame them all. That costs a pretty penny.

“Good mats, then,” she says. “With a cardboard backing. We can sell them cheap. Maybe print out two hundred of the best images and some doubles. Could you be ready in a month? One of my artists just asked for a two-week extension. We'll get you in then.”

“Um,” I say, “sure.” We shake on it. She says she'll write up a contract and I can pick it up tomorrow. We'll do a thirty–seventy split. I stand up, slightly dazed, and ask if there are any pictures in particular that she'd like me to print.

She shakes her head. “They're all fabulous. You’ll make a mint.”

The next month is a maze of buying matboard, cutting out mats, centering photographs in the mats, and securing them with acid-free archival tape. The gallery owner calls to say maybe three hundred pictures wouldn't be bad. Since it’s close to the end of the month and I pay out-of-pocket for Lea’s acupuncture treatments, we live on peanut butter and banana sandwiches until opening night.
The gallery isn't big, and even with my sight mostly restored I can't walk around without bumping elbows. How did we get a crowd with halfway decent promotion and a food budget big enough for cheese, crackers, and boxed wine? Everyone turns to congratulate me and tell me I’m brilliant. No, I want to say, just bleeding strategically.

The gallery owner crushes me in a hug. She knows people in the computer and biological sciences department at the university—dropped off a few fliers there, and mentioned the project at the end of a couple photography classes. We’ve gleaned an eclectic cluster of art students, med students, scientists, and programmers milling about with plastic cups of burgundy.

“Just like pink paisley,” I hear one of my art department colleagues say as she stands in front of a photograph of a park bench tinged with crimson.

Between sips of water I talk with various people about photographic composition, sporadic hemorrhages, neural pathways, and using a cane to negotiate coffee shops. I’m hoarse by the end of the evening, and my fingers ache from one too many people who shake hands with a tight grip, but we’ve sold two hundred and seventy-one photos.

“What did I tell you?” says the gallery owner. “They're like popcorn. People can't own just one.”

More surprising are the phone calls that start the next day and don't stop for a week. People told people about the gallery show, who told other people. Everyone wants me for a lecture, as an after-dinner speaker, or to do a presentation with slides. The gallery owner says collectors are coming in to ask for my photographs. We'll raise the price, see what the market will support.

“You'd better set a good price for a lecture fee,” she says.

For my colleague in the art department who wants me to talk about the nexus of art and technology, I do a presentation for free. But people in the technology department want me to chat about the link between bodies and machines. Another prof wants me to stop by the school of medicine to discuss my hemorrhaging and variable vision to ophthalmology students. The students would also like to shine bright lights in my face after the Q and A, but if they want me as a specimen, it'll cost them.

I don't know how the medical textbook company finds me so quickly, or the students from campus radio, or the morning chat show on the AM station. A week and a half after the gallery opening, I’m part art sensation and part medical curiosity.

I’m walking around town without my cane for the moment, drawing pictures of dogs and cats at my usual coffee shop. I need to finish work on a fundraiser calendar for the humane society, but I listen to the chatter.

Isn't that the weird artist we heard about on the radio?

How many minutes of fame have I used up? Five? Seven? Ten? In elementary school I was known as the weird girl who held books too close when she read because I was nearsighted. I'm still the weird girl, though now I don't mind the label so much.

•••

Even with the aid of pictures, there are things about my hemorrhages that are hard to explain to others. When a fog happens, I’m more aware of my body, of being on the inside looking out. It isn't a sensation of being trapped—more like finding myself in a spacecraft in an alien world, red like Mars in a dust storm, but I’m the only person who noticed the change. Maybe that's why I want so badly to capture these images. I don't know if the impulse is a need to say, See what I have to put up with? or See what you're missing? Maybe both.

As much as we try to understand what it's like to walk in someone else's shoes, we can only have their shoes—not their bodies, their heartbeats, their past experiences. The space of shoes is an apt metaphor, inherently limiting.

•••

“Is this how it feels to be old?” Lea asks when we have our nightly massage sessions, me rubbing her limbs to keep them limber. She says touch makes the hurt go away better than stretching exercises.

“I don't know,” I say.

“The worst part was the doctors who didn't believe me,” she says.

Technology needs to push beyond my camera to invent a hat for medical students that would shoot electrical impulses to the nerve nets in their brains. Then they could understand what arthritis feels like, what chronic fatigue syndrome feels like, what gallstones feel like, or a migraine. I assume it's a matter of strumming a few synapses. Pain may be all in our heads, the chatter between nerves and limbs, but that doesn't make it less real. We spend half our lives enjoying the fact we have bodies: loving good food, good walks, good books, good sex, and the other half dealing with the body's aches and pains and inconveniences.

•••

My ophthalmologist says this time he is darn near positive he can make my hemorrhages stop. He wants to use the laser to zap my blood vessels, but also do surgery with tiny knives.

“And if that doesn't work?” I say.

“More laser,” he says.

I wrinkle my nose. “What's the risk I could lose my sight after surgery?”

He pauses. “Present.”

I have my second gallery show on the horizon—the owner wanted me to make bigger prints and frame some of them, and she has a crew lined up from the local news station to do a story. I’m becoming used to this way of seeing: the periodic pink fogs and detours they demand. I know when to have my cane at the ready. I’m improving my ability to cook by scent and not sight, and measuring spices by dumping them in my palm. I’ve been taking pictures of animals, haloed ghost dogs trotting down the street and cats lazing on windowsills that look like aquariums.

I could try surgery, and accept the risk of complications.

I could refuse surgery, and accept the risk of retinal detachment with the next hemorrhage.

Either way, my vision might shut off—along with the camera.

If we could stop the bleeding, I wouldn't have another evening that feels like it lasts eight years. I wouldn’t watch pink paisley slowly eclipse my sight, my heart thrumming with the fear that someday my sighted eye could shift to a world of blurs, or the gray of moving shapes, or maybe the language of light and dark. I would adapt. And—as now—it would not be easy.

I leave my ophthalmologist's office thinking this must be like the sword swallower's dilemma: The thing that most distinguishes us, our livelihood, could lead to serious injury. How many times to roll the dice? Could I take enough pictures to satisfy me for the rest of my life?

Could there be a moment when I would miss the pink paisley haze?

•••

The gallery owner asks me to come over for a nine o'clock meeting, and proposes a performance art piece. She'd like to alter my camera from one that shoots still pictures to a video camera we could hook to a monitor.

“Possible?” she says, cup of coffee halfway to her lips.

I wrinkle my nose. Probably not that dangerous... I say I’ll ask the ophthalmologist and surgeon, both of whom attended the gallery show and were impressed. (They also said it’ll be at least five years, or maybe a decade, before my camera could feed images back into my brain, but they’re working on it.) I'm not as excited about the prospect of a video camera if it involves another small hole, but if we could capture my vision on video and break it down into still frames, the sales would be stunning. Maybe enough to pay for my niece's college education and a larger apartment.

My regular ophthalmologist said to call when I made up my mind about surgery, though we don't have to do it now.

“But every hemorrhage is a risk,” he reminded me. “You can't assume you'll always have a well-behaved retina.”

•••

We don’t think of bodies as a finite resource. We use them up for our careers, for recreation, wearing down muscles and joints, braving backaches and broken bones, having headaches and heartburn, straining sight and stamina. Sometimes we know the price of success is exhaustion, but we don't feel that in our skin until we near the point of collapse. Teacher and technician, firefighter and fiscal officer, ballerina and bartender—there’s no job in which you can't overextend.

We’re sure we’ll stop before we break.

•••

The surgeon says I don't need another hole; he can poke the first button and reset the camera to make it so that I can take videos for the three-evening engagement with two quick pushes. If that goes well, I could do one more weekend at the gallery, then have surgery. Goodbye to ghosts and the worry of losing my sight for good. If there are no complications.

When I ask Scott what he thinks, he says it's my decision. I take this to mean he doesn't want to tell me what he thinks.

To some people, the choice may seem like no decision at all: I should have surgery and lose the space of fear and unknowing. Why continue to risk my vision so I can create something others will call art? But the people who worry aloud about vision loss get on my nerves. They're trying to empathize with my predicament, but they never get further than painting it as a tragedy.

“I don't know how I'd deal with your condition,” one of my colleagues says while we’re in the copy room. “The possibility that I wouldn't see my family or partner or friends again, that I wouldn't be able to help my kids with their homework—”

“People adjust,” I say lightly, though I want to scream that visually impaired folks aren't layabouts. Katie and Sam would laugh and say that if you can't figure out how to help a kid with their homework when you don't have much sight, you're not being creative enough.

I wish I could go back to medieval times when people would have called my fogs visions, or angels. Something otherworldly. We’re living in an age of scientific causes, but sometimes I want mysticism. Yet those same people who called my visions angelic would have said my niece was exhausted because she was demonically possessed, and they might have tried to do an exorcism or bloodletting to find a cure. I think we’d both rather she stay with the dairy-free diet.

•••

The only problem with performance art like this is that we have to schedule it when I have a hemorrhage, which means waiting until the evening when I see a gray haze, calling the gallery director, and telling her to start promotions. This time she's pleased, says it’s perfect timing since it's Tuesday night, so we have a couple days to publicize before opening on Friday. We’ll have the show all weekend, and maybe next weekend too if I'm still hazy enough to be interesting.

“It'll be interesting all right,” I say, surprised at the flatness of my tone, but I was almost done with the final touches on the cat greeting cards for the humane society. I've been working on them forever, and now I'll have to call tomorrow and explain there's been another delay due to life turbulence. Whenever I think I might be okay with my variable vision—even able to embrace it—some kind of gut punch reminds me it’s still difficult.

Tonight’s one of those nights where I’m worrying about hemorrhages, afraid that I'll have to phone the gallery owner from the hospital and tell her the show is off because I need emergency surgery to reattach my retina. I call Scott and ask if he could please come over and bring takeout, because I don't feel like cooking.

“Another hemorrhage?” he says.

“The exhibit opens this weekend,” I say. I wish I were more excited, and I probably will be tomorrow morning once I’ve settled into the idea of seeing pink paisley for three weeks.

Lea and I curl on the futon to wait for Scott. She grimaces through my gray haze. Aching again.

“Arms or legs or everything?” I say.

She nods. I hug her tightly. She says the warmth helps, but I also understand the body comfort of having someone near when you feel disoriented. I blink. No lowering curtain of vision loss; just a world slowly tinted rose as I go to my other planet. At the gallery show this weekend I will shake hands and say yes, it’s very interesting to see the landscape this way. Patrons will wonder if they could ever do what I do.

It's simple: I have no choice. Just this pair of dice to roll like everyone does, making decisions with our bodies, moving through the world the best we can, waiting for the next curve in the road. We find our paths, our ways to adapt as our bodies change and age and shift, finding others who understand our corporeal selves so we don’t have to waste time explaining the intricacies. Tomorrow I will walk into the world with my white cane, marveling as I always do at the sensitivity of the tiny ball at the end as it rolls along the sidewalk, feeling the texture of concrete and cracks. I will remember that it’s beautiful.