To See or Not to See

It started as a mist taking over my world. For days, I had been cleaning my glasses and dousing my contacts, preoccupied by a vague fuzziness in my vision. Make an appointment, I kept telling myself, get a new prescription. But it was all so expensive—the optometrist, the new glasses, the box of contacts. None of it was in my budget. So I kept cleaning, dousing, trying to overwhelm the haze, trick it into submission.

It was in the dark movie theater, staring at the bright screen, that I realized the cleaning had been in vain. The images on the screen weren’t out of focus, but were as if the film had been manipulated or warped by heat. I closed my right eye as a test. To my left eye, an unharmed film played. Cautiously, I closed my left eye, opened my right: The characters became distorted shapes, a mess of wandering limbs, torsos melded together into one conjoined body. It seemed my left eye was compensating to hide a twisted parallel universe inside my right.

My body stiff, heart pounding, I looked to my friend, wondering if I should tell her. But tell her what? I couldn’t explain it in a sentence I could easily whisper into her ear. And even if I could, would we just leave? It wasn’t as if I could do anything about it in the moment. I hated to be an inconvenience, a burden, so I sat, rigid. Occasionally, I closed my left eye to see if anything had changed—my mind unable to focus on the characters and their petty concerns, unsure what I was watching.

*

Early in my childhood, I realized I could alter the world around me anytime I wanted. Simply by squinting, crossing my eyes, and fluttering my eyelashes, I could induce an entirely different experience of reality. It was as if I could turn on an inner strobe light, creating partial images, moments between moments.

Lying in bed in the morning, I transformed the hazy morning light coming through the blinds—already diffused by a layer of Northwest clouds—into a spiritual experience. I imagined the flickering, soft light was what the afterlife looked like, what God looked like. I felt the out-of-focus was closer to the divine.

Of course, I wasn’t alone in this. Most artistic and cinematic representations of heavenly things took place in the haze of clouds. In some divine representations, subjects were so bathed in clouds and sun they became more illumination than image.

And it wasn’t limited to religion. Most alternate realms and beings were presented as hazy—dreams and ghosts, other dimensions, the act of time travel. I had taken the popular representations as fact and, in the morning light, I felt sure I was accessing one of these realms, tuning in to something below the surface, hidden.

I could only blur my eyes for short stretches, since the act was mildly painful. One time, I tried to test my endurance, keeping the fluttering going for minutes, and came out of it with a soreness that lingered for the rest of the day. I worried I had damaged my eyes permanently.

But once the soreness passed, I used the pain as proof of the activity’s importance: I imagined I was engaged in the work of visionaries and artists, those who suffered to experience and did something with their experiences. But I wasn’t doing anything other than experiencing and, as a mildly obsessive and endlessly concerned child, I sometimes wondered where all this practice would lead. Most days, though, it was enough to rediscover that the world was not static, but malleable.

Blurring was an option anytime I wanted to change reality. Life forced us into so much—there was my mom with the two jobs she hated, my grandma with her graveyard shifts at the hospital, the daily awkwardness of elementary school. Everyone I knew was doing something they didn’t want to do. But life also offered ways to escape, to transcend.

*

After the movie, I went to my optometrist, who quickly sent me to an ophthalmologist. The ophthalmologist took scans, showing me the damage on my retina—like cracks in the desert sand, or a topographical map from another planet. Not smooth, like a normal retina.

The damage was due to pseudoxanthoma elasticum (PXE), a rare genetic disease I was born with. Though it had been diagnosed when I was a teenager, I’d rarely been forced to think about it. The cracks don’t do any harm themselves, but they allow the possibility of blood vessels to penetrate the macula, the retina’s most sensitive layer, leaking blood and causing loss of vision. It wasn’t the blood itself that blocked the vision, but the way the blood pushed and stretched the macula, distorting the world.

The doctor told me I needed surgery. I asked him what that entailed. He said there was a cold-laser surgery that had been used for years, a common procedure, but that it didn’t work for most people. Then there was a drug used in chemotherapy that, within the previous couple of years, was being used off-label and injected into hemorrhaging eyeballs. It wasn’t a surgery, but an injection they approached with the caution of a surgery. So far it had a very high success rate and the risk, he said, was worth it.

I was broke, employed part-time, uninsured, so I told him I’d need a couple of months to get the funding together. He shook his head, clearly frustrated that I wasn’t getting it. He said I couldn’t wait, that the process was rapid, and if I didn’t get treated within the coming weeks, I would be blind in that eye. Irreversible, he kept saying. If you wait, the blindness will be irreversible.

Doctors compare retinal hemorrhaging to taking a projector screen and bending it. The world is still visible, but curved, its details lost within the arcs. The morning after my appointment, my alarm rang, I opened my eyes, and—even without my glasses—knew the screen had been bent a little further. I put on my glasses and noticed how the light fixtures drooped, how the art on the walls merged together, how everything lacked detail. I went to my job at a bookstore, my left eye working hard to compensate, trying to adjust to this new vision. It took hours for it to not be jarring. Then, when the sun went down, I had to adjust again.

Walking home that night, the streetlights blurred together, businesses and apartment buildings lost their doors and windows and signs, morphing into single distorted balls of illumination. When I looked away, the whole world twinkled in my periphery, as if it were all decorated for the holidays, horrifying and beautiful. I’d never been so aware of light, how qualities of light can so dramatically change the experience of reality. The next morning I woke up, my vision altered, and began the process all over again.

*

I didn’t tell my mom how often I blurred my eyes. I knew she would claim it wasn’t good for me. More than that, though, the experiences felt private—something that might lose its magic if I talked about it.

But since I loved the blur so much, I created a performative version that I enacted at stoplights while riding in the car. Leaning forward in my seat, blurring my eyes, and speaking in my best imitation of a hypnotist, I chanted “melt in my eyes, turn green,” elongating the vowels with each recitation until the light changed.

More than that, though, the experiences felt private—something that might lose its magic if I talked about it.

I liked how it made my mom laugh, how—if I wasn’t paying attention and a light was taking a particularly long time—she requested it. Hey Josh, can you help with this light?

But I also took the responsibility seriously. I believed that if I focused my energy and unfocused my eyes enough, I could do it. I just had to tense the muscles in my body and put their strength to work toward one goal: my gaze intensifying, the illuminated red sinking into the un-illuminated yellow and green, losing its hold over us. Sometimes I swore I could feel its strength breaking.

*

Finding an office for the injections wasn’t easy. I lived in Olympia, the capital of Washington State, and there wasn’t a single clinic in the city or its suburbs that performed them. The closest was thirty miles south at the Pacific Cataract and Laser Institute in Chehalis, Washington. Though they didn’t have a full-time surgeon who performed the injections, one day a week a surgeon came and injected eyeballs all day long. He did this across western Washington, each day at a different clinic in a different city.

Because of this, each shot cost over a thousand dollars and a series of shots were required. Hemorrhaging often recurs, so the first series was sometimes just the beginning. I scheduled an appointment with no idea how I would pay for it.

I usually tried to avoid asking for help. I considered myself independent, a bit of a loner, secretly too proud for any kind of assistance. But I’d also been raised in a lower-middle-class family who taught me that debt was a type of personal failure. I’d made it through the first decade of my adult life free of it and, aside from going blind, debt was my greatest fear. So I was either going to owe money for the rest of my life, or I was going to ask for help.

After some searching, taking recommendations from friends, I found a health-care advocate—an eccentric man with glaucoma who was passionate about hunting, electric guitars, and getting low-income people health care. He was part of an advocacy group whose office was tucked away in a strip mall next to a cemetery. In the back of the office, past a mess of movable walls and stacked boxes, he had a cubicle.

Day after day, he walked me through medical assistance forms. We had conference calls with social service organizations, we emailed church groups, we called the Knights of Columbus—a Masons-like group that he knew funded eye surgeries because he had once tried to become a Knight. We made an appointment with the Knights' treasurer at his home, the first trailer at the only trailer park in the backwoods town of Elma, Washington.

My age caught everyone off guard. Typically only the elderly received retinal treatments and every assistance program was designed with that in mind. No one could figure out what to do with an apparently healthy guy in his mid-twenties, whose eyes showed no hints of their internal issues, or where to point me.

More rejection letters came. The idea was that we could take all these letters and turn them over to somebody, some organization, somewhere, and it would mean something. After every medical assistance organization we applied to turned down these applications, my advocate and I faxed each of the rejection letters to the laser clinic in Chehalis.

We waited.

The day before the first surgery was scheduled, I’d still heard nothing, and assumed I’d have to postpone. So I filled out credit card applications, imagined sucking up my pride and borrowing money from friends and family, wondered how waiting another week would affect my eye.

Then, late in the day, I got a letter saying the Chehalis clinic would cover the treatments through their emergency assistance program. I celebrated, briefly relieved, before realizing how the coverage suddenly made the injections real. Now I couldn’t put it off.

I decided I needed to steel myself and, that night, I watched the only film I could think of with a moment of eye harm: Un Chien Andalou, a 1929 surrealist short film by Luis Buñuel and Salvador Dalí. The film’s most memorable element, and the scene that’s become a staple for disturbing film collages, is the moment where a doctor slices a woman’s eyeball in half.

I watched it over and over and, between viewings, I read everything I could about PXE. I joined its international nonprofit advocacy group. I researched the seemingly endless list of side effects for the drug that was going to get shot into my eye. I watched the film one last time before going to bed that night and when the doctor cut the eyeball, I didn’t flinch.

*

In third grade, a craze began around a book called Magic Eye. I didn’t understand the attraction. It was filled with pages of ugly, pixelated patterns that supposedly held some secret I couldn’t see. Other kids told me to just blur your eyes and, each time they did, a sadness washed over me.

Things like this always happened as a shy only-child: I thought I was good at something, thought I knew a subject so well, then found out that my abilities or knowledge hadn’t been challenged or pushed by outside forces. My ability to blur the world, to access other realms, was obviously lacking. There were dinosaurs and planets behind those walls of patterned nonsense, and I couldn’t blur my eyes enough to see them.

Magic Eye went from being a single book, an annoying oddity, to an entire franchise. Notebooks, bookmarks, binders, glossy posters. And with each item, I felt more certain the spiritual was being sold and exploited. Blurring the eyes was supposed to be something sublime, something that could change the world around you.

But here it was cheapened, revealing unremarkable boats and statues. I was upset that I couldn’t see through Magic Eye’s wall, but I didn’t really care to see their concealed mundane images I could see in other books. I just wanted to believe my eyes were magic, that only I could see things that existed below the surface.

I just wanted to believe my eyes were magic, that only I could see things that existed below the surface.

*

The next day—though I had prepared and though it was funded—I still held on to the possibility that there was another way. I’d only talked to a doctor at a different clinic who knew about these treatments from medical journals. I hadn’t even been to this clinic, hadn’t met this doctor. I went in hoping that this new doctor would respond to the questions I had about the drug and together we could weigh the risks.

But as soon as he entered the room, a team of nurses behind him, gloves were being put on, little metal tables were being filled with tools, and I couldn’t seem to stop the forward motion.

Finally, I raised my voice enough to ask about what I’d read: the treatment’s newness, its unknowns, its potential side effects. He stared at me, clearly uninterested in the questions.

He remained quiet several beats longer than was comfortable before saying, “Yes, those are certainly possible. You could experience headaches or nose-bleeds, you could have hair loss, everyone reacts differently. We could insert this into your eye, you could be allergic, and you could go blind instantly. Or we could do nothing and you’d be blind in a month. Those are our options.”

My right eye clamped open, the nurses and the doctor hovering over me, my roommate who had casually given me a ride nervously watching from the corner of the room, I realized I hadn’t asked a very essential question. “How do I not watch the needle go in?”

The doctor answered, “Look up and to the left.”

I did and immediately felt as if I’d been toppled by a wave and pulled under. A rush of bright, cloudy fluid entered my vision and spread, crossing from my right eye over to my left, moving in all directions at once.

Unable to see out of either eye, I thought I was one of those rare allergic cases. Everything was white, thick, blurred and bright. But soon the shapes of the hovering nurses reappeared, the fluid slowly cleared. And in the wake of that brief, profound horror and undeniable beauty I felt momentarily ecstatic, unconcerned about the drug in my eyeball, what it meant for the future.

The surgeries happened in a series of three, one a month. Within a few days of my first injection, my vision began to clear up. Soon after my second injection, I stopped noticing any distortion. The third just felt like overkill.

In a way, I was thankful for the excess, because it seemed like it sealed the deal. We’d gone above and beyond, and because of that my eye would be better far into the future. But less than a year later, I had another hemorrhage. Hemorrhaging in the same eye, another series of three shots.

Shortly after, at the beginning of a two-month tour with a band I was playing in, I grew convinced that my eye was hemorrhaging again. Behind the wheel, looking through the windshield into sunny California, it seemed obvious. The distortion was too horrifying to be normal.

I called my clinic, thinking I might have to quit the tour and catch a bus home, so that I could get the financially-covered treatments. My insides tightened and curled into a private, internal fit.

It was unfair, I thought, that everyone I knew could take a trip without worrying, and I now had to be forever protective, on guard.

But when I called my clinic they told me their one location outside the Northwest was in Albuquerque, New Mexico, and if I went there they would honor the emergency funding. I was playing a show there in a week, so I made an appointment.

It was a relief, a cause for celebration, but the appointment also turned me into an inconvenience, the kind of burden I hated to be. Our tour had us playing in a different city or town every night and now we had to squeeze one more thing in to this tight schedule, go out of our way, because of me. On the way to Albuquerque we hit traffic, then got lost on the way to the clinic, and found ourselves running down its expansive halls, trying to find the office for my appointment.

It wasn’t the humble single-floored clinic I went to in Washington, but a multi-leveled facility that seemed to cater to an entirely different class of people. In our cut-off shorts and thin t-shirts, out of breath, road-worn—my curls untamed in the unfamiliar heat, my female tour-mates’ legs and armpits unshaven—we looked like we’d arrived from another planet.

I got all the tests and I was wrong. There was no hemorrhage, nothing to treat. I had developed permanent damage from the hemorrhaging—scar tissue, essentially—and I’d mistaken that uncorrectable distortion for new bleeding. The change from gray Northwest skies to the perpetual sun of California and the Southwest meant that I could see the damage more clearly. It was the light that fooled me.

It was the light that fooled me.

Embarrassed to make such a fuss over nothing, I asked if there was a way I could test myself and, with confidence, they handed me a piece of paper. It was a four-by-five-inch sheet, poorly Xeroxed, with a simple grid of uniform squares.

I don’t know exactly what I expected, but I wanted more than this. I at least wanted several pieces of paper, a series of exercises to practice, some new way of viewing the world. But they told me that this, a grid developed in the 1940s, was the only at-home option. If the eye was hemorrhaging, the grid’s lines became wavy, like the boxes were a net, blowing in the wind.

On the road, I tried using the grid, but it felt as futile as staring at a Magic Eye—there was nothing there, nothing to gain from it or understand, even though I’d been assured there was. I focused my attention on it, wishing I could just see the blood, so I’d know.

But with the permanent damage, the lines were always a little wavy. And each time I looked, the lines seemed a little different. If I stared with the assumption that I might be experiencing the beginning of a hemorrhage—a “leak,” as they called it—then the lines looked wavier. If I stared at it thinking I was just experiencing the effects of the damage, the lines looked less wavy.

So I invented my own tests as I went about my days. Close my left eye and look at a street sign. The page of a book. A billboard in the distance. A computer screen. The graffiti on a lamppost. From this, I tried to determine if what I was seeing was permanent damage or a new hemorrhage. Sometimes it worked and it was clear what was what.

But there were so many variables, so much to consider. The weather, the time of day, overhead-lit or lamp-lit—each changed the quality of light and light was vision. But my emotional state, my stress level, and how much I slept mattered. The more I paid attention, the less sure I was.

I always assumed, eventually, the difference between permanent and new would become obvious. But if anything, I’ve just become more paranoid as the years have gone by, more obsessed with details. I call my right eye my one bad eye and while my left eye compensates most of the time, I notice the damage in certain ways light is transmitted—bright sun through a window, overhead lighting in an office building, a thin layer of clouds reflected in water.

At least a few times each year, the light makes me question what I’m seeing and I can’t let it go. I keep focusing on the damage and, in this focusing, I stop being able to differentiate. I call my eye doctor, schedule an emergency appointment, only to be wrong again.

My vision is also gradually changing. The doctors call it “scar creep.” The damage from the hemorrhages expanding on its own, changing my vision for the worse along the way. My vision doesn’t feel like it’s ever static. It’s always shifting.

*

I no longer need to blur my eyes to see things differently. I just close my left eye and a new world opens up. It’s not an escape, nor transcendent, not like the blur I experienced as a kid. It’s distorted, rough, and sometimes it shakes me, fills me with loss—even though the actual loss is so small, a tiny hint of what it could be.

The damage is clearest with the moon. I’ve been a night owl my whole life, and the moon always fills me with a rush of energy, a particular awareness of being alive I don’t have during the day.

I’m more myself when the moon comes out. I teach night classes and often, when I walk home and turn the corner onto my quiet block, the moon hangs low in the sky, illuminating my path. But as my vision changes, the moon grows fuzzier, a ball of light shifting in and out of focus. To look at it makes me woozy, unsteady on my feet. But to look at it also feels important, necessary—an opening to the blurred alternate realm that’s a part of me, and also more than me.

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