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.

Pin It

27 comments

  1. Suzanne says:

    Such a lovely piece. It went places I didn’t expect and is filled with quietly powerful prose, like this line: “Most days I am reconciled with the badge of my brokenness.”

    But I appreciated the lighter moments, too. This part made me laugh out loud: “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.”

  2. Maria says:

    Thank you for sharing this beautiful and integral piece. My son is blind, and I related to the many doctor’s appointments and struggles that come with being physically different in our society. I appreciate your perspective and your vision when it comes to humanity.

    • Kim Kankiewicz says:

      Thank you, Maria. I didn’t appreciate until I became a mother how strong my parents had to be through all the appointments and struggles. My encouragement to you.

  3. This is such a timely post for me. My daughter has some dental issues ahead of her and, ate age nine, is beginning to notice the differences between her situation and her friends’. Beyond the usual trial of braces, my daughter has four baby teeth for which she will never have adult teeth. They simply aren’t there. The plan, according to her orthodontist, is to hang onto those tiny baby teeth for as long as possible and then drill implants into her jaw when she is about eighteen.

    The other night at bedtime, she cried into my shoulder because she was the only kid in the fourth grade who hadn’t lost her baby teeth yet. I tried to explain about the beauty of difference, about how everyone has something that makes them unique, about all the famous people she admires who have “handicaps” of their own, about how it’s what’s on the inside that matters. It all fell flat. To a nine year-old girl, that is all just concept, not reality. I imagine it will be harder as she becomes a teenager. The time will pass slowly for her until she can have the cosmetic dental surgery that will make her like everyone else.

    Thank you for sharing your story.

    • Kim Kankiewicz says:

      Thank you, Jamie. Those sentiments fell flat when my mom shared them with me too, but I’m glad she kept reminding me. Your daughter is lucky to have a mom who listens and respects her feelings.

  4. Wonderful essay, beautifully written. I admire your honesty and strength.

  5. Danica says:

    I don’t have the words to express the strength of the impact this beautiful piece had on me.

  6. Lisa says:

    I have been contemplating strabismus surgery myself. I was blinded in my left eye at the age of five after an encounter with a plastic football. My parents opted to watch and wait for 6 weeks after the first surgery. I had a blood clot resting on my optic nerve and they were hoping it would dissolve on its own. It didn’t and by the time I had the surgery blood flow to the nerve had been forever ruined.

    I had my first strabismus surgery at the age of 10, and now that I’m 45 I am just as self-conscious about my lazy eye as you were. Children notice it the most–they look behind themselves to see who I’m really talking to. But enough adults had the same reaction when I worked as a reference librarian that I never felt compelled to return to my career after my son was born almost 15 years ago.

    I was told that my insurance wouldn’t cover a strabismus surgery now because it would be purely for cosmetic reasons. Also I suffered terrible migraines from the age of 10 to my early 20s which I think were from the childhood strabismus surgery. Once my bad eye went enough off track, the migraines mostly ceased.

    At the consultation I did a few years back regarding strabismus surgery, the doctor said it was more likely to be successful if he did the surgery on my good eye–if he pulled that muscle tighter such that my good eye would be…cross-eyed? He said that using my muscles to pull my good eye back to center would also realign my bad eye. But there’s absolutely no way I could have a surgery on my one seeing eye just for the sake of aligning my blind eye.

    • Kim Kankiewicz says:

      Thanks for sharing your experience, Lisa. It’s funny you say that about kids. They definitely seem to notice my eye the most too. And I’m with you. I wouldn’t want to mess with my good eye either.

  7. Megan says:

    I can’t tell you enough how wonderful and beautiful this is, my friend! I had to make the gut-wrenching decision to subject my son to what was essentially cosmetic eye surgery this year for his strabismus. I comfort myself (for now) that it hasn’t devolved into full-blown amblyopia, and maybe this procedure prevented that. Only time will tell, but there’s a tiny grain of fear in the pit of my gut that I’ve doomed him to a life of corrective surgeries. What is a parent to do?

    • Kim Kankiewicz says:

      Thank you, Megan. I didn’t realize J had strabismus surgery. I’m sorry it was a gut-wrenching experience and am glad to hear the results were good.

  8. Antonia says:

    Wow. Just wow.

    • Kim Kankiewicz says:

      Thanks, Antonia! I just clicked on your link and realized you’re the Antonia who published that great essay in the last Brain, Child Jennifer and Stephanie edited. Good stuff!

  9. Gerianne Imdieke says:

    Such an eloquent essay Kim. I admire your talent, bravery, humor and skill with which you express yourself. How fortunate your children are to have you for a mother and you to have the parents who raised and supported and continue to support you throughout this journey of yours. This essay will inspire many young and not so young people dealing with cosmetic and functional challenges. I really enjoy your unique humor and communication style. It’s pretty obvious where your children get their’s from. Congratulations on this publication!

  10. Lisa Stonehouse says:

    I feel like I was right there in the waiting room with you. Thank you for sharing your heart and being vulnerable in such a setting. Your approach to life has always amazed me. Those loving moments with your mom as well as the time you have taken to reflect and explore yourself have helped shaped the mom you have become.

  11. Nicole says:

    Thank you for sharing. You are beautiful

  12. Momo says:

    This paragraph speaks volumes to me…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.

    This is an essay which is both beautiful and integral.

  13. Dina says:

    Your last line is a masterpiece. Well done. I’ll be hanging onto this for teaching future 7th grade English classes.

  14. Liza says:

    Lovely. Thank you -

  15. Heather says:

    My beautiful friend, you have artfully integrated so much of your life, self, and perspective into this thoughtful piece. Entranced so that I immediately savored it again, I celebrate your bravery in allowing all of life’s experiences to become integral to the beautiful woman you are. Thank you for offering your beauty to the world ~ you are more integral than you know. Brilliant ending.