Space Oddity

Photo By Gina Easley www.GinaEasley.com
Photo By Gina Easley www.GinaEasley.com

By Reyna Eisenstark

I. Self-Diagnosis

About a year ago, I was editing a behavioral psychology book when I came across the following sentences: “Special receptors also provide proprioceptive information, letting us know where our body parts are, and their position in space. This awareness is called proprioception.”

I stopped reading. I stared into space. I don’t have proprioception, I thought.

In fact, had this been a movie, there would have been a dissolve from my face, with its look of slowly dawning realization, to a series of scenes from my life playing themselves out in rapid succession: me constantly banging my legs into the low shelves around our living room, the collective disgusted sigh of a group of girls as I once again completely failed to make any contact with the volleyball coming right at me, my toe breaking as I sped from one room to another and failed to clear the wall entirely, repeated scenes of me stepping out of my car to discover it somehow parked two feet from the curb, me walking through various stores with my arms firmly at my sides, terrified of knocking into anything, certain that I would.

This moment of revelation really was like the proverbial apple falling on Sir Isaac Newton’s head and, considering how often I have misjudged and banged my head, the metaphor is especially apt. I realized that not only have I had this problem my entire life, but I have also been compensating for it my entire life, convincing myself that nothing was out of the ordinary.

Funny enough, I vividly remember reading an essay by Sloane Crosley about ten years ago about her serious problem with spatial awareness. Did I feel even a glimmer of recognition? Not at all. I actually chuckled to myself, wondering how someone could possibly get by with such a poor sense of direction. I prided myself on my (falsely understood) excellent sense of direction. Didn’t I read the part about her getting lost in a large box store and did I not recognize that this happened to me regularly? When I read the words, “To counterbalance my deficiency, my visual memory became stronger,” did I not realize that this is how I’d been managing my whole life? No, I did not. And yet, that essay struck me somehow and stayed with me all these years, perhaps stored away as something I might want to revisit at a later date. I suppose this is what they refer to as denial.

The thing about spatial awareness is that it extends way past your body and out into the world. For example, I cannot tell north from south. If I am walking in Manhattan, I picture myself on the street my dad lived on until I was nearly thirty and then picture which way the street numbers went up and which way they went down, and adjust myself accordingly. I thought this—which I have never admitted before—was totally unremarkable. One afternoon, when I was maybe ten, and before I figured out this trick, I asked my father how to get to Vinnie’s Pizza, a now long-gone but beloved pizza place on the Upper West Side (Amsterdam between 73rd and 74th Street). He told me to head west out of the building and then, after a block, to head north. Much as I tried to explain I didn’t know how to do this, he refused to offer any alternatives. He was of the belief that children learned things by simply doing them. What I learned was never to ask my father for directions again. I headed out of the building, choosing a random direction, making sure to note any visual details that would help me trace my way back. This being New York City, I eventually ended up at a pizza place, but it was definitely not Vinnie’s. As I sat there, eating a highly inferior slice and disgustedly watching a couple of flies hover over the pizzas that had just come out of the oven, I thought, This is probably what I deserve.

Because, in fact, I always realized that I had difficulties, but I had no way to explain them. My mother constantly yelled at me for knocking into things, and I often had bruises on my legs or my hips, but I didn’t actually feel clumsy. It’s just that I wasn’t able to see what was often right in front of me or below me, and I didn’t realize the wall or the coffee table or the glass on the counter was so close.

As for driving, I always assumed I had difficulty with parking because I started driving late; I didn’t have the experience. In fact, the only way I can parallel park is to tell myself to deliberately ignore the warning signs my brain is trying to send out. When I start thinking, Oh my god, the car is too close to the curb! I just keep backing in. But this takes enormous concentration, and when I don’t do it, the car ends up inevitably two feet from the curb. Or some unacceptable distance; I don’t really know for sure. Because this is another aspect of having spatial awareness problems: I can’t judge distances at all. I’ve always accepted this as a fact about myself, but when my older daughter was about eight years old and said something like, “Oh, it was about fifteen feet ahead of me,” I actually asked, “How do you know what fifteen feet in front of you looks like?”

And yet, I managed to live forty-six years without really knowing what was wrong with me, without quite realizing that something was wrong with me. I have always had a remarkable visual memory for things. I can find things in my house by picturing where I last saw them. When I was once accidentally dropped off at my private elementary school on a day the school was mysteriously closed, I managed to walk home just by recognizing the streets I had passed each day in the car and retracing them back home. I had been compensating just fine.

II. Diagnosis

This whole realization happened to coincide with an ordinary visit to the optometrist, in which the optometrist, using an instrument new to that particular office, noticed that I had enlarged optic nerves. This being a sign of glaucoma I was immediately directed to an ophthalmologist, and after a battery of eye tests that culminated in my eyes being held open (not unlike like the famous scene in A Clockwork Orange minus the Ludwig Van) and bright lights shined in them, it was determined that I did indeed have enlarged optic nerves.

But six months later, my enlarged optic nerves were exactly the same, and it was thought that perhaps they were just like this naturally. More (horrible, nauseating) yearly tests would determine this. And then, back for another ordinary visit to the optometrist, I casually mentioned to her my recent realization of the spatial awareness problem I’ve had my whole life, which, I was beginning to realize, involves poor peripheral vision. She was delighted! This was definitely related to my optic nerves! They must have been enlarged for most of (or all of) my life, thus affecting my peripheral vision all this time! It probably had nothing to do with glaucoma at all!

So there it was. I had spent a lifetime struggling with something that wasn’t even my fault, that a simple eye test could have detected years ago, but somehow never did. This realization also brought with it a flurry of memories: panic over having to make split-second decisions of left versus right, panic over a Frisbee coming straight toward me, panic over driving in the dark when I can no longer see the lines that keep me from drifting too far to the left. I felt exhausted just thinking about it.

And yet. There was also a sense of great relief. There was now a medical explanation! My problem was neurological! I’m off the hook for everything!

III. Self-Awareness

And yet. There was something about this realization that was sad, too. In all my reading about spatial awareness difficulties, I couldn’t help noticing that there are easy ways to detect the problem (I had every single sign) and that there were ways to improve it (this was never attempted). I’d been dealing with this as best I could all my life, but (and I knew already that the answer was definitely no and that this question needed to be buried with so many other questions from my painful childhood) couldn’t things have been made just a bit easier for me?

A couple of months ago, my sixteen-year-old daughter started driving lessons. Once, after a lesson was over, her driving teacher said to me, oh so casually, “She’s doing really well. She has a really great sense of how much space she takes up. It’s actually something called proprioception.” I smiled. In my head, I translated this into “Your daughter is not you,” something that I didn’t know I needed to hear until I heard it.

When we went driving together, I asked her to bear with me because I was panicking every single second. This was only because, since I have no sense of where exactly the car ends, it appeared to me that she was driving in the shoulder. But she was not. I watched with amazement as she calmly navigated us down country roads (with no dividing lines!) and then on to the highway. This person who was once inside my body, and then basically hung all over my body for many years, now distinctly had a sense of her own space. She was better at this than I was. I was just figuring it out.

•••

REYNA EISENSTARK is a freelance writer and editor living in Chatham, New York. She is a regular contributor to Full Grown People. You can read more of her writing at reynaeisenstark.wordpress.com.

Read more FGP essays by Reyna Eisenstark.

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Eye of the Beholder

eye
By Gina Kelly www.ginakelly.com

By Kim Kankiewicz

I wait in a lobby with purple carpet and rounded walls and a magazine rack stuffed with picture books. A fifty-gallon aquarium nests in a cubby four feet above the ground. Orange and green nursery school furniture occupies the central space, surrounded by clusters of adult-sized chairs. I am thirty-five years old and the only patient here without a parent.

My life story could be set in eye doctors’ offices. I’ve been pinned by technicians to a reclining chair in Phoenix as my first ophthalmologist dropped atropine into my pupils. I’ve written fawning essays about an eye doctor in South Dakota who nicknamed me Trouper. I’ve leaned into tonometry machines in Iowa and Kansas, with medical students lined up to scrutinize me. I’ve mourned for an eye doctor in Minnesota who died of cancer. I’ve formed an uneasy friendship with the wife of an eye doctor in Nebraska who had an affair with his nurse. I learned I was pregnant from an ophthalmologist in Boulder reviewing pre-operative blood work.

In all those encounters, I’ve never been the right age for my eye clinic. As a child with glaucoma, I grew accustomed to being an anachronism. Among the crepe skin and hunched backs, I was pink cheeks and muscled legs. It was one of the ways my visual impairment made me uncomfortably visible.

I laugh when, two decades after my diagnosis, I find myself the lone adult patient in a room full of children sporting eye patches and doll-sized spectacles. The mother next to me, a nervous twenty-something, glances my way, and I pretend to be amused by the book I’m holding. I hadn’t considered what should have been obvious when I scheduled this appointment: a specialist in strabismus, colloquially known as “lazy eye,” is primarily a pediatric ophthalmologist.

This is confirmed when the doctor enters the exam room twenty minutes later. He is wearing a Mickey Mouse tie. He skims the pages in my fat file and wheels his chair over. We sit knee to knee as he shines a penlight into my blind eye, then studies it through a scope.

“Working around your other surgeries, I can get you to eighty percent alignment,” he says.

“Would this be covered by insurance?” I can see nothing from my right eye, which is why it’s wandered further off kilter every year since the surgery in my teens that marred my appearance without saving my sight.

“It’s medically justifiable,” the doctor says. There’s some practical benefit: face-to-face communication would be less distracting for my conversation partners. And my blind eye takes in just enough light to claim a functional benefit.

Realistically, though, strabismus surgery won’t improve my vision and isn’t necessary. I knew this when I made the appointment. What I am contemplating is, for all intents and purposes, cosmetic surgery.

•••

I once vowed, horrified when a classmate had breast implants before she was old enough to vote, that I would never opt for surgery that wasn’t medically necessary. My smug self-assurance came from an unusually informed perspective. By my twenties, I’d lost count of the eye surgeries I’d endured. Enough to have preferences regarding anesthesia. (Fentanyl is nice.) I knew that surgery is always nightmarish, recovery always excruciating.

The collective experience of surgery made me feel like a cadaver, indifferently carved open and sewn back together. When the doctor in Boulder joked that mine was his first pregnancy announcement after screening for six thousand cataract operations, I wasn’t impressed. I was just glad to be distinguishable from the other 5,999 patients.

Only on the operating table did I want my handicap to stand out. Everywhere else, I wanted to appear intact. I tried to achieve this by excelling in school, performing onstage, and ultimately starving and exercising my body until it collapsed and I left college for bulimia treatment. Eating disorders are complicated, their genesis complex, but I know mine originated between an exam chair where I squinted against the light and a school hallway where I wore sunglasses indoors, between a hospital bed where I wanted to be conspicuous and a waiting room where I did not.

Healing from an eating disorder is simultaneously complicated and simple. Recovery is a lifetime process, but it often comes down to treating oneself with both gentleness and brutal honesty. I’ve acknowledged my self-absorption, my complicity with a system that values women’s adherence to narrow standards of beauty above all else. Most of the time, I resist preoccupation with my appearance by throwing balled-up socks at the television when a woman is blatantly objectified and asking myself who would possibly benefit if I were more attractive.

Who will benefit if my wonky right eye is aligned with the left one? I don’t believe anyone has ever been too distracted by my lopsided gaze to maintain a coherent conversation with me. I suspect some acquaintances have not even noticed what feels to me like a huge deformity. Despite the growth I think I’ve experienced, I have to consider that in the end this surgery is nothing more than vanity.

•••

The operation takes place at a children’s hospital. The intake nurse, who rarely needs to differentiate between patient and child, talks to me in a high-pitched voice. Even when she catches herself, she seems unable to adjust her register. To add to her discomfiture, I am accompanied by my mother because my husband was called away on out-of-state business. My mother has experienced nearly as many eye surgeries as I have and is worried primarily about finding her way back to my house if I’m not lucid enough to navigate. She comforts me, unexpectedly, in a way my husband could not.

“It’s a simple repair,” she says. “Nothing to feel conflicted about.”

Mothers don’t cause eating disorders, but if you made a list of the ways they might contribute to them, very few of those factors would apply to my mom. She has an incomprehensibly easy relationship with food. She makes healthy choices as a way of life. I don’t recall her uttering a single deprecating remark about her body or mine. The closest she came to criticizing my appearance was asking semi-regularly, “Is that what you’re wearing today?” as if I’d donned a costume to amuse her before dressing in my actual clothes. (Retrospective photographic evidence explains her bewilderment.)

I didn’t understand my own feelings about my eye disease, and I hid them from my mother. She hid from me the likelihood that I’d be blind before adolescence, the plan to relocate to a city with a blind school, the fears that she was inadequate to help me survive. What I saw was my parents’ unwavering presence. Intuiting that my vision was at risk, I was unworried. My parents would take care of me. Little did I know my mother felt as insufficient as I did.

The surgery is not as simple as my mother predicts. Through the haze of anesthesia, the operating team’s conversation sounds graver than usual. The operation, I later learn, lasts an hour longer than scheduled. When I awake, my surgeon explains that he discovered additional real estate left from previous operations. He’d altered his game plan to avoid damaging a shunt. In practical terms, this means more pain and less certainty of success.

It will be days before my eye turns from blood-red to white, weeks before I can peruse the lasting impact of surgery. Will it noticeably change my appearance? Will it change anything else?

“I’m glad you could be here,” I tell my mom, when she has driven us home without a wrong turn.

“Me too,” she says.

•••

My children are solicitous when they return from a friend’s house after my operation. This is their first brush with eye surgery, and their concern charms me. I explain the procedure as my mom defined it for me, as a repair. They don’t know the surgery is an attempt to improve my appearance; I won’t let on that I wish to be beautiful. It’s an intermittent desire, one that no longer defines me, yet I’ve gone under the knife to satisfy it.

I want to spare my little girl from measuring her value in a mirror, but Signe is learning, inevitably, that beauty matters. She has confided that she hopes she is pretty enough to have friends in kindergarten. I stumbled through what I hoped was an appropriate response, enumerating the qualities that make her a good friend. She looked unconvinced.

When Signe stared at my face a few months before surgery, I thought of an essay by Alice Walker. Walker dreaded the day her daughter would notice her mother’s disfigured eye, just as my daughter was noticing mine. The pivotal moment in Walker’s essay is when her daughter remarks, “Mommy, there’s a world in your eye.” I shouldn’t set much store by this atypically affectionate account of Walker’s relationship with her now estranged daughter. Even so, I was crushed when my little girl said, “Your eye looks scary.”

She recognized my hurt before I masked it and apologized for days afterward. I reassured her she’d done nothing wrong, talked about how differences make us beautiful, told her my blind eye reminded me to be grateful for the eye that can see. But she had observed that deep down, I too hope I’m pretty enough to belong.

You won’t find integral as a synonym for beautiful in any thesaurus. In my vocabulary, they share meaning. Integral means both whole and essential to the whole. If you are integral, you are complete, and the world would not be complete without you. What I have learned over years of reflection is that when I long to be beautiful, I long to be integral.

•••

Three weeks after surgery, my irises are horizontally aligned so closely you might think they were allies. The overall effect, however, is unremarkable. My right iris remains a paler shade of green than the left. My right pupil is still the black-marker dot of a child’s drawing, never dilating because it never beholds light. My right eyelids, stretched and sliced over decades of treatment, still gape like snarled lips.

As a child, I heard a doctor say my disease could “burn out” by adolescence. I imagined a celebration, like a sweet sixteen party with balloons and cake, attended by my friends, my doctors, the aunts and uncles who inquired about my eyes during holiday dinners, the teachers who had visited me at the hospital. Now, as an adult who should have outgrown such naive fantasies, I had let myself believe again that a single moment in my ocular history could unbreak what came before.

Most days I am reconciled with the badge of my brokenness. Most days understanding my desire for beauty as a desire for wholeness is enough to make peace with it. Most days I believe I am integral to—and through—my mother and daughter and every woman who wants to be integral, too. But some days I close my eyes, unseeing and unseen, and dream of revision.

•••

KIM KANKIEWICZ has written for Brain, Child, Denver’s Westword, the Saint Paul Almanac, and public radio. She is a recent transplant to the Seattle area, where she hasn’t yet found an eye doctor.