Home

/

Features

View our flipbook


 

You might not expect a woman who’s going blind to be optimistic. But for Nicole Kear, a dim diagnosis illuminated the path to a very bright future. 

Photography by Miller Mobley

The day I found out I was going blind started out like any other. 

It was 1996, and I was a sprightly and optimistic 19-year-old just starting summer break after my sophomore year at Yale. My chief concern at the time was whether to major in English or theater in the fall. I wasn’t worried about my doctor’s appointment that afternoon in midtown Manhattan because I figured it was a formality. My ophthalmologist had referred me to a retinal specialist after she spotted “a little something” while peering into my pupils during my annual checkup. But she assured me there was nothing to worry about, and I had no reason to doubt her. Besides wearing glasses for nearsightedness, I was the very picture of health. So on that late May morning, I fussed over whether to wear my sister’s denim mini or the vintage pencil skirt I’d just bought in the East Village, rather than fret about what the doctor might say. My mom offered to go with me, but I waved her off, never guessing it would be the kind of appointment where I’d want someone by my side.

When I left the doctor’s office that afternoon, my rosy outlook was in ruins. The specialist, whose bedside manner was less than gentle, had told me that the little something my ophthalmologist had glimpsed was not so little after all. It was evidence of a degenerative retinal disease called retinitis pigmentosa, he informed me, and it was untreatable and incurable. My retinal cells were slowly dying, which would result in gradual vision loss. First the disease would eat away at my night and peripheral vision, and eventually it would claim my central vision, too. He wasn’t sure how long the process would take, but he was “hopeful” that I might make it to 30 or 35 before…

His voice trailed off, not wanting to speak the words. He didn’t need to.

Blind, I thought. I am going blind. 

As I walked the 20 blocks down Lexington Avenue back to my parents’ house, my thoughts thrashed around wildly as I tried to grasp the life-altering implications of the information I’d just received. I was shocked and confused, and a great wave of fear was slowly gathering force within me. But more than anything, I felt instant and irrevocable loss, like a kid who’s just lost her grip on a helium balloon. I made a grab for it, fast, but it was too late, and I watched helplessly as it receded, further and further out of reach. 

That feeling deepened over the weeks as the diagnosis sunk in, and at times I thought I might buckle under the weight of it. But something else was happening, too. Through the fog of my shock and confusion, I started seeing everything with the eyes of someone looking for the last time. Sights I’d always taken for granted—the bits of sparkle in the pavement, the bright, brilliant red of the streetlight—seemed immensely, heartbreakingly beautiful. I’d wasted so much time, I scolded myself, being blind to the beauty around me. Knowing it wouldn’t last forever, I became ravenous for images. 

As the summer wore on, I put on a brave face for the sake of my family, who was taking the news the hardest, but internally I was in a daze, going through the motions—and trying desperately not to be consumed by the sadness and fear that lingered in my subconscious. Sometime in July, the fog began to lift, and my bewilderment gave way to relentless inquisition. One hugely important question begged answering: What now? I was going blind, and there was nothing I could do to stop it. So what was I supposed to do now?

Though I couldn’t control my disease or the blindness it would bring, I could control how I responded to it. I could cower in my house, refusing to recover from the curveball life had thrown me. I could be practical and prepare for my visual decline, learning Braille and blind-proofing my home. Or I could take the diagnosis as an urgent reminder to take nothing for granted and an imperative to carpe diem. In the time I had left, I could stuff my brain with images in hopes they’d be enough to last a lifetime. I could use the death sentence my eyes had been given as a kick in the pants to start really living. 

Bingo.

The revelation was slow coming, but once it arrived there was no equivocation about my future path. The diagnosis had been a wake-up call, and, like any wake-up call, it was unwelcome at first. After getting over the initial sting—rubbing my eyes, shaking off the heaviness of slumber—I was exceedingly glad to be awake. One afternoon, I sat down with my leather-bound journal and drew up an official bucket list, detailing the many things I wanted to see and do before my vision gave out. Then, just as eagerly, I set out to realize those goals. 

1. Fly the Trapeze

My mother was less than pleased when I told her I was going to circus school in San Francisco—
that is, until I assured her it was only for the summer. One year had passed since my diagnosis, and I was moving full speed ahead with my carpe diem campaign. When I’d returned to Yale that fall, I decided not to choose between my two great loves, theater and English, but to declare a double major. One of the many acting classes I took was “postmodern clowning,” which sounds pretentious but boiled down to just red-nose-, Bozo-the-clown-type stuff. The class fanned the flame of my love for the circus, so when I heard about a summer internship at the San Francisco School of Circus Arts, where I would receive contortion training in exchange for teaching kids clowning, it felt serendipitous.

Though never athletic, I’d always been naturally flexible, and that summer, under the guidance of masters straight from the Shanghai Circus, I learned what power my body held. I couldn’t so much as do a handstand in June, but by September I could hold one for a full minute, my arm muscles rippling, and even touch my feet to my head while doing it.

Occasionally, I had a chance to try the flying trapeze, and the first few times I could only shake my head. Just the sight of that incredibly high and narrow ladder made me feel a little queasy.By summer’s end, however, I’d accepted the challenge, climbing up the wobbly ladder without looking down. As I waited at the top to catch the bar, my heart was thundering so hard I felt unsteady. But as soon as I leapt from the platform, my fears fell to the nets below. For a few expansive minutes, I flew, soaring through thin air with a velocity that was dizzying and a lightness that took my breath away. 

2. See the World

I’d lived in New York City all my life with the exception of the college years I spent in New Haven,Connecticut, a whopping two hours away. I always wanted to travel, but I counted on doing it later. Suddenly, I realized that if I wanted to see the world, it was now or never. 

I went first to Rome, where my mother had been born and much of her family still lived. There, I sat in front of the Pantheon, drinking in every column, every chiseled Latin letter, sketching these details in my journal in an effort to permanently imprint them on my memory. Trekking to Northern Italy to visit family, I picked sweet peas at my great-uncle’s farm and hiked cloud-capped mountains to see where Ovid once lived. I was enveloped by the warmth of what felt like a motherland, as I watched men on Vespas smoking cigarettes, listened to women gossiping while leaning out of windows, and smelled the sweet aroma of marinara sauce simmering on stovetops.

Spending all the money I’d saved from birthdays and graduations, I bought a Eurail pass and set off with my sister to Paris, where we watched Grand Guignol puppet shows, and Amsterdam, where we stood by narrow canals eating wheels of black licorice. I witnessed the sunrise over Venice’s Bridge of Sighs, and I felt near to bursting with awe at the beauty and the grandeur. 

3. Become a Star

I’d always wanted to be an actress “when I grew up,” and I’d starred in plays—singing, tap-dancing, stage-fighting, soliloquizing—since I was old enough to read a script. After my diagnosis, I had to reassess my career plans. How could I become the next Reese Witherspoon while being led around by a Seeing Eye dog? I couldn’t. 

But I wasn’t being led around by a Seeing Eye dog now, I reasoned. Sure, pursuing a career in the performing arts wasn’t a rock-solid long-term plan, but I no longer had a long-term outlook. I was too busy making hay while the sun shone.

After college graduation, I moved back to New York, where I got headshots, a talent agent, and my Actors’ Equity card, enabling me to audition for Broadway shows. I performed Shakespeare in the Lower East Side, 1950s cult classics in the West Village, and avant-garde German theater on St. Mark’s Place. 

There were challenges: Between scenes, the rest of the cast and crew relied on the illumination of glow tape to enter and exit the stage, move sets, and place props. My eyes couldn’t discern the weak glimmer of the tape, so when the lights went out I sank into a deep, unrelenting darkness. Making matters worse, the things I typically used to orient myself—furniture, walls, doors—were not fixed points, but elements of a constantly changing set. 

Accidents were unavoidable. I grew accustomed to getting tangled in backdrops, nearly falling off stages, and bashing my body parts into hard, unyielding objects (and people). Still, it was a small price to pay for what I got in return. Not only was I happy, I was fulfilled. When I strode onto the stage, right into the center of hot, bright lights, I felt a thrill that was worth every bruise, every fleeting humiliation. 

4. Fall in Love

One of the perks of a life in the theater is you don’t have to look far to find whirlwind romance; throw a rock, and you’ll hit half a dozen soulful artists who dish up drama and passion in large quantities. The quality of that romance was somewhat questionable, but at 21 years old I subscribed to the philosophy that you have to kiss a lot of frogs before you find your prince. I kissed most of the frogs south of 14th Street.

I watched Montgomery Clift movies with handsome Colombian-American actors in dilapidated Hell’s Kitchen walk-ups. I drank prosecco with lawyers in perfectly appointed apartments in Chelsea. I rode in the passenger seats of cherry-red convertibles and on the backs of motorcycles. 

The attention was not only enjoyable but also a big boost to my confidence. For a time, after my diagnosis, I had been painfully aware of how much of the picture I was missing due to my tunnel vision. This made me skittish, insecure. It was hard to walk forward boldly when I didn’t know if I was about to fall into a manhole. But ticking items off my bucket list was transforming me into a more confident, fearless version of myself—one who wore red lipstick and heels everywhere, who laughed with abandon, who wasn’t afraid to make the first move.

My romances afforded me constant excitement, which distracted me from the fact that I was losing more vision with each passing year. When I thought about the cute bioengineer who was taking me out later or the charming actor who asked for my phone number, I forgot about how it was growing harder for me to read the newspaper or walk home down dark side streets. 

It didn’t take long for the whole thing to grow tiresome. Romances, begun with so much heat and promise, would fizzle out after a few weeks. I started to crave something more substantial, more enduring.

Fortuitously, that’s exactly when David reentered the scene. He was a novelist from Tennessee whom I’d met during our senior year in college. We struck up a friendship that seemed like it could blossom into something more, but David had a serious girlfriend at the time. He confessed that he had strong feelings for me, but he wasn’t at liberty to explore them. So we parted ways and, shortly thereafter, graduated. It didn’t take long for him to become the one who got away, the face I’d think of late at night when I was alone—and sometimes even when I wasn’t. 

When our paths crossed again in New York about a year after graduation and he explained that he’d broken up with his girlfriend, it felt like an act of divine intervention. Within a few months, he’d gotten my name tattooed on his arm: six jet-black letters rising from his pale skin. After a year, on bended knee in the middle of the Smoky Mountains, he asked me to marry him. I didn’t have a moment’s hesitation. My eyes might be failing, but I recognized the love of my life when he was standing in front of me.

5. Conquer Hollywood

I loved my hometown profoundly, as if it were a living, breathing person. But I wondered what life was like outside of New York, and it seemed a little cowardly that I’d never spent any significant amount of time beyond the tristate area. So when I got the chance at 25 to go to Los Angeles as part of a theater festival, I decided to make it more than just a visit. I was an actor, after all, and in L.A. the streets were paved with TV pilots. David and I quit our day jobs as long-term temps at an investment bank, packed up our stuff, and ventured west.

I was bowled over by California’s beauty. Rolling, golden hills that looked like sleeping lions. Jagged cliffs with precipitous drops to the churning, foaming Pacific Ocean. Even the light was different, and the smells. Every time I walked out my front door and inhaled the scent of jasmine, I stopped to marvel. In New York, I encountered plenty of smells, but few of them were pleasant. Sniffing jasmine blossoms made me feel like a Disney princess.

I didn’t know how to drive, but David taught me, which was both a personal triumph and a recipe for disaster. It’s hard to ensure safety when you can only see objects right in front of you.

Driving wasn’t the only part of life in L.A. that was draining and stressful. It became more difficult to make it through auditions and rehearsals without revealing what was a growing handicap. In the six years since my diagnosis, I’d become totally night-blind, so navigating dark film sets and backstage areas was now nearly impossible. Even networking was difficult; in the dim landscape of parties and bars and shows, I struggled to discern the face of my conversation partner, making it difficult to remember the person later.

My field of vision had shrunk, little by little, so that my days were riddled with minor collisions as I bumped into objects that were too low, too high, or too much to the side to be in focus. There were brushes with coffee tables, tree branches, people crossing my path. I missed stairs, knocked over glasses, and fumbled my lines. 

They were all small mistakes, short-lived moments of lost composure, but so constant that they exhausted and demoralized me. I loved acting, but I longed for a career where I felt at ease. 

 

 

6. See My Children

A few months after David and I were married, I discovered I was pregnant. This was far and away the best news I ever received in my 27 years of life; the word “overjoyed” didn’t begin to sum it up. The baby I dreamt of was finally on his way, and I’d be able to see his face. 

It had been eight years. Most of my vision loss was peripheral, with some acuity problems thrown in thanks to the cataracts that had begun to form, which made everything blurry. Color blindness was beginning to set in, making matching outfits a thing of the past. Depth perception had become a bit of an issue too, so I needed to exercise more caution on stairs. 

Because of this, I was nervous about taking on the huge responsibility of motherhood. It was hard enough for women with eagle eyes. As a woman who was steadily becoming more blind, how would I fare? Occasionally, I was seized by worry about the accidents that could result from my failing eyes. What if I tripped on a wet wipe and face-planted while holding the baby? What if I measured the Tylenol incorrectly? 

But I could let go of the great, gripping fear I’d harbored since that day in the doctor’s office—that when my baby was born, I wouldn’t be able to see him. When my son made his entrance, just after midnight on Thanksgiving night, I soaked in so many sights: his strong chin, bee-stung eyes, the complex curvature of his ear, so tiny it made my heart ache with tenderness. 

Two years later I saw my daughter for the first time, a ruddy, round-cheeked newborn sporting a Mohawk. There were details I couldn’t see, like the exact length of her miniscule fingernails, but I didn’t waste time worrying about that because I was positively brimming with the most spectacular, awe-inspiring images I’d ever seen.

By the time I was 34, I was deemed legally blind and had been trained on a mobility cane. My cataracts, which couldn’t be removed, made it impossible for me to read regular print. Money was tight, and our two kids were a handful. It seemed insane to even consider adding a third. But I wanted one desperately, and so did David. For the first time in a very long time, I felt hemmed in by fear. We knew what was in our hearts, but whether or not it was a good idea wasn’t clear at all. 

Am I capable of taking care of another baby? After careful consideration, I knew the answer was yes and that, no matter what came later, I’d do whatever was necessary to provide for my child, to nurture him or her physically and emotionally. It was far from a guarantee but as close as any of us really gets, I decided. 

My third baby is now 2 years old, and I’ve been able to read her books (if the text is big enough), take her to the playground (if it’s enclosed), and watch her blow out her birthday candles. 

Of course, having seen the faces of my kids hasn’t allowed me to cross the item off my bucket list. It’s been just the opposite. The birth of my children gave rise to an entirely new bucket list, and this one—the list of things I want to see them do and become—has no end. 

The first time I watched my son draw a self-portrait in bold, bright marker, I felt a desire to see his paintings hanging on the walls of an art gallery. Tightening my daughter’s backpack straps on the first day of school made me want to see the slant of her cap at her college graduation. Whenever I stop to admire the robin’s-egg-blue of my youngest’s eyes, I think about how I want to see them when she’s 10 and 20 and 55. The more I see, the more I want to see; it’s a hunger that can never be satisfied.  

But I’ve learned not to peer too anxiously into the future. Hindsight may be 20/20, but what’s to come is too murky for any of us to make out. My eyes are so dim that I need to train them on the present, to soak up as much as I can, to slow it down, to make it last. As much as I can, I stop to smell the roses—and while I’m there, I look at them, long and hard. Those blazing red streetlights. The way the skin on the top of my children’s noses wrinkles when they smile. 

I don’t know the kind of life I might have had or the kind of woman I might have become if that appointment 18 years ago had actually been routine—if the “little something” in my eyes had been just that and nothing more. What I do know is the life I have is nothing like what I expected, but it’s everything I wanted—full of beauty, love, and a light beyond anything the eye can see. 

 

Nicole Kear is the author of the new memoir Now I See You. She’s now tackling her next bucket list item: “Get a full night’s sleep.”


Share the Spirit
Send This To A Friend Print Page
 
Start Your Adventure
Round Trip One-Way
 
 
Max. 8 passengers per reservation.
Ages 2+
Ages 65+
 

Read Gary Greeting
Gary Kelly's Greeting
Perspectives from Southwest Airlines Chairman and CEO Gary Kelly. Click Here

Pace Interactive