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Macmillan Childrens Publishing Group

Now I See You

A Memoir

Nicole C. Kear

St. Martin's Press

MORE ABOUT THIS BOOK

1. THE MESSENGER



This is some Park Avenue bullshit, I fumed, slamming shut my copy of 100 Years of Solitude. I'd been sitting in the well-appointed waiting room for almost an hour before the doctor called my name, and then it was only to squeeze some dilating drops into my eyes and send me back into the waiting room while they took effect. That had been a half hour ago, at least I guessed as much. Now that my pupils were fully dilated, I couldn't make out the numbers on my watch, or the print of my book, either. Which left me nothing to do but stew.

The whole thing was a massive waste of time. There was nothing wrong with my vision apart from near-sightedness; my regular ophthalmologist, Dr. Lee, had said so before she referred me here, "just to be extra sure." It had seemed like a fine idea at the time, but that was before I'd pissed away the better part of a summer afternoon in a waiting room.

Of course, I had nowhere else to be, really. Having just returned to New York for summer break after my sophomore year in college, I had nothing lined up until my acting apprenticeship started at the Williamston Theatre Festival in a few weeks. I'd spent the last few days bumming around the city, sleeping late in my childhood bed, seeing old friends, and taking care of annoying bits of business like this doctor's visit. That, and crying uncontrollably.

Not a day had passed since I left Yale that I hadn't broken down in tears, weeping with the kind of brio only a teenager can manage. The crying was very time-consuming, and once you factored in the hours I spent rereading old journal entries and tearing up photographs, really, there weren't enough hours in the day. Of course, breaking up is hard to do, especially for the first time.

I'm gonna call him, I decided as I stared at the blurry blue book jacket on my lap. But by the time I located a pay phone, near the bathroom, my belated sense of dignity showed up and stayed my hand. Plus, I didn't have a quarter.

It's pointless anyway, I reasoned, a familiar lump forming in my throat. I'd called him yesterday and the day before that and always, the answer was the same. The romance had run its course. Frog Legs and I were through.

Frog Legs earned his name after my grandmother saw Sam in his boxers one morning when he was staying at my parents' over spring break.

"Il Ranocchio!" she attempted in a whisper. Nonny's whispers never really pan out; she is permanently set on town crier mode, like she's got a built-in megaphone in her vocal cords. I shot her a reprimanding look, which triggered her giggling, which blossomed into a guffaw, until that crazy Italian had to take a seat so she didn't have a heart attack from the exertion of howling with laughter.

"What'd she say?" asked Sam, smiling. Having been raised by psychologists, in a home where respectful communication reigned, it didn't even occur to him that my grandmother might be openly deriding him.

"Oh, she's just razzing me, you know, about having a boyfriend." I ran my fingers through his dark, wavy hair and glared at Nonny.

After that, the big joke in the family was that my boyfriend had lady legs. A few months after our breakup, I was able to see the humor in this, but at the beginning of the summer, when the heartache was still fresh, every mention of Frog Legs had me bawling like a kid whose ice cream fell off the cone. Yes, Sam was my double scoop of ice cream with sprinkles, except that he hadn't fallen off the cone; he'd jumped.

I'd met Sam in a Shakespeare scene study class required for our theater major and we'd fallen hard for each other while rehearsing the Romeo and Juliet balcony scene. Just like those star-crossed lovers, though, our relationship was intense but brief. After four months together, Sam broke up with me at the end of sophomore year. We'd been fighting for a few weeks but the final nail in the coffin was when I sneaked into his email account while he was in the shower. I was shocked to discover an email he'd written to a friend in which my beloved had described me as "high maintenance" and "clingy." When Sam came out of the shower, I was in tears, begging him for an explanation.

"You read my emails?" he asked, shocked. I guess that was a first for him.

"Just this once," I sputtered. "Hardly ever." I saw his face set, like a decision had been made. I started talking fast: "But that's not the point. Let's stay on the subject! Which is, I just love you so much! I mean, these have been the best four months of my life!"

"Okay, listen," he said, sitting next to me on the edge of the bed and putting his hand on my arm. "You're great—"

"No! I won't listen to this! I DO NOT ACCEPT THIS!"

"Nicole, come on, let's—"

"Please!"

"Can you just—"

"Please!"

Because, as everyone knows, men dig batty broads with no self-respect.

When it was clear he would not be caving to my charm, I collapsed on the floor and wailed, full-on blubbered—with drool, so much that I choked on it from time to time, sending me into a heightened paroxysm of agony because I realized full well that Sam seeing me choke on my drool probably ruled out getting back together.

It was a shining moment for womankind.

Back in New York for summer break, I was continuing my meltdown at a low simmer. Every little thing I saw—pumpernickel bagels, Dr. Zizmor ads on the subway—reminded me of Sam. Even the MEN'S BATHROOM sign in the doctor's office triggered a Sam flashback. He used to use public restrooms. God, how I loved him. I fought back tears as I regarded my blurry reflection in the women's room mirror.

My hair was beyond help; the heat and humidity had wilted my fine, shoulder-length locks until they hung lifelessly off my head like yarn. I fluffed up the hair on the top of my head with my fingertips but it sunk back down instantly, limp and defeated. My mascara was smudged from the inordinate amount of sweating I'd done on the short walk from Victoria's Secret and there were circles under my eyes that concealer hadn't concealed. But in between the circles and the mascara, my eyes themselves were resplendent.

The pupils had been dilated so much, the irises were eclipsed; all that remained was a thin ring of hazel around the perimeter. It was just an accent, a border separating the black of my eye from the white. The unbroken black reflected the light so that my eyes shone, as if they were a source of illumination themselves. Big and round and colorless, my eyes were nothing short of hypnotic.

I wish Sam could see me like this, I mused. He'd totally take me back.

I'd made it a whole ten seconds without thinking of him: a record. I commended myself as I walked back to my seat in the waiting room to resume staring at the wall.

I should have rescheduled this crap. I'm in no state, I thought. Damn Dr. Lee and her extreme thoroughness.

I'd been seeing Dr. Lee for years, ever since I failed the standard high school eye exam when I was thirteen. Dr. Lee was a colleague of my father's, like all the doctors I'd ever been to, and her office was around the corner from his cardiology practice in Brooklyn Heights, where my mother was office manager/physician assistant/consigliere. The location was convenient considering how fond my mother was of crashing my doctors' appointments. She claimed that she showed up to secure me VIP treatment ("Or else you'll waste all goddamned day in the waiting room!") but I think she was experimenting with how much humiliation a teenager can withstand before requiring psychiatric intervention. I had grown accustomed to her bursting through the door of the exam room when I was at the dermatologist's, calling him by his first name and telling him to please explain to me that if I just stopped eating chocolate, I wouldn't have any blackheads at all. So it didn't even register on the embarrassment spectrum when she acted as armchair ophthalmologist during my first eye exam, offering an unending commentary as Dr. Lee wrote out a contact lens prescription.

"It's just so strange, because everyone in our family has great eyes—none of us wear glasses—although you know what? I told her that if she kept on reading in the dark it would ruin her eyes. This one, with the books! I mean, don't get me wrong, reading is good, of course, but you can take a good thing too far, for God's sake! I hate to say it, I really do, but I was right. I mean, was I right, Eleanor?"

"She's just a little near-sighted." Dr. Lee smiled. "She'll pop in contacts and be perfect again."

Every year, I'd check in with Dr. Lee to keep current with my prescription and eventually, my mom stopped crashing my visits (she had two younger daughters to mortify) and I came to actually enjoy my annual checkup. The office was inviting; a light floral scent lingered in the waiting room and it was always the perfect temperature, even on the most sweltering summer day. I genuinely liked Dr. Lee, who was young, smart, and soft-spoken with a low-key approach and a chin-length black bob that never grew any longer. I was interested in anecdotes about her two little kids and she always wanted to hear about what I was reading. The last time I'd seen her, over spring break, I'd mentioned something I'd been wondering about.

"It was so weird," I explained at the end of the visit as she updated my chart. "I went to Montauk recently and everybody else was oohing and ahhing over the stars but I couldn't see anything. It's no big deal or anything—I just thought I'd mention it because, you know, I was the only one who couldn't see them."

I didn't really care one way or the other about being able to make out the constellations, but the trip to Montauk had reminded me of another trip, when I was ten and my parents had dragged my sisters and me at 3:00 A.M. to the southernmost tip of Staten Island to see Halley's Comet. My dad had been berserk with excitement over what he kept referring to as "literally a once-in-a-lifetime event." He'd even shelled out two hundred dollars for a telescope, causing my mother to mutter "What are we, made of money?" nonstop for two weeks. On the night of the big event, my family stood shivering on the beach for an hour or two before my father finally shouted triumphantly that he'd found it and it looked like a fuzzy snowball. When it was my turn at the telescope, no matter how much I squinted, I couldn't see jack. Not a hint of a smudge. But I'd oohed and ahhed along with everyone else, secretly hoping the next once-in-a-lifetime event wouldn't be such a letdown.

Nine years later, it struck me as strange that I couldn't see comets, or stars either, and I asked Dr. Lee if maybe I needed stronger contacts.

"Your prescription seems pretty good," she mused, looking through my file. "And everyone's eyes adjust to the dark differently, so I'm really not concerned. But since you're here, let's just dilate your pupils and take a look."

A half hour later, she was tilting my head back and peering into my eyes with her flashlight. "Hmmm," she murmured. "Hmmm."

"What is it?" I asked. "Hmmm" is never what you want to hear in a doctor's office.

"Oh, it's nothing," she replied, turning her light off. "I mean, I see a little something but I'm ninety percent sure it's nothing. Just to be safe, I'm going to send you to Dr. Hall so he can check it out."

"Oh," I said. "Okay."

"It's nothing." She smiled. "I just think, better safe than sorry. Sound good?"

"Sounds good," I confirmed.

And it did. As a doctor's daughter, I was accustomed to following up just to make sure. So I made an appointment with Dr. Hall for the next time I'd be back in the city, in early June, and I promptly forgot all about it. Then, one morning after I returned home from summer break, as I sobbed while rereading Frog Legs's love letters, heavily sprinkled with Shakespeare quotes, I got a call from Dr. Hall's office confirming my appointment for that Monday.

I considered postponing the appointment but "I have to phone-stalk my ex" didn't seem like an adequate excuse. Better just to get it over with, I thought, check it off my to-do list.

"Yeah sure," I sniffled to the receptionist, "I'll be there."

In an attempt to pull myself back together, fake-it-til-you-make-it style, I'd gotten dressed up the morning of the visit, in a denim miniskirt covered with blue butterflies and a diaphanous white blouse I'd stolen from my little sister's closet. I'd caught the express train and gotten to midtown in no time, which had left me with a half hour to kill. Convenient, seeing as there was a blowout start-of-summer sale at the Victoria's Secret around the corner from the doctor's office. As I hooked on half-price bras in the dressing room, I felt a rush of optimism.

My rack looks huge in this, I thought. Screw Sam and his lady legs.

I bought a black lace demi-cup and matching French-cut underwear and rushed over to the doctor's office, the pink shopping bag swinging on my arm, feeling almost cheerful. By the time I was finally summoned by Dr. Hall into an exam room though, my cheerfulness had entirely dispersed.

Dr. Hall was fat and sweaty and wore wire-rimmed glasses. Like Dr. Lee before him, he peered into my pupils, but he was quick about it and didn't make any Sherlock Holmes-y sounds. I took this as a good sign.

Then he pulled up a stool and put his hands together on his lap.

"I'd like to ask you a few questions," he said.

"Ummm, okay," I replied, my eyebrows furrowing, "Is everything okay?"

"Let's just get through some questions first, all right?"

First? I thought. Before what? Before he clears me?

I nodded, suppressing a sigh. There was such a thing as being too thorough.

"Are you accident-prone?" he began, leaning back in his stool. "Were you considered clumsy as a child, often bumping into things?"

It was such a peculiar question, I didn't know how to respond for a second. I couldn't fathom how my childhood grace, or lack thereof, had anything to do with me not being able to see the stars now. Besides, I hadn't been an especially clumsy child, had never broken a limb, never been to the ER for stitches. I'd been a regular kid. Normal.

"Umm, no, I don't think I've ever been accident-prone, really," I replied. "I mean, sometimes I bump into things, like everyone. Nothing memorable."

He nodded.

"Although," I went on, "last summer, one night I tripped over this massive tree root on the beach and it ripped up my thigh, which was crazy, because I didn't think a tree root could be so, you know, dangerous. I probably should've got stitches but I was with my friends and we just … anyway, it's okay now. You can hardly even see the scar."

"Uh-huh," he grunted, weighing my answer. I instantly regretted having said so much.

"Of course, that's not being accident-prone," I added quickly. "I mean, that's just being human." Instinctively, I yanked on the hem of my miniskirt, pulling it down to cover the waterfall-shaped scar on the front of my right thigh.

Dr. Hall crossed his arms in front of his chest: "Did you play ball sports as a child?"

Was this a getting-to-know-you game? How much information was I supposed to offer about my childhood interests? Would he be inquiring next about my favorite ice-cream flavors?

"I didn't really like sports," I replied. "I've always been more of a bookworm. I'm an English and theater major."

It was odd to have him fire off the questions without taking any notes. I mean, the questions were odd to begin with, but without him recording my answers, it felt like he already knew what they would be.

"Why didn't you like sports?" he pressed on. "Was it hard to excel at them?"

"I'm sorry, but I don't know what this has to do with anything." I was starting to feel exasperated.

"Just bear with me please."

Dr. Hall seemed equally exasperated. I could tell he was anxious to move it along, get this ordeal over with so he could call in the next patient and interrogate them about their T-ball batting average.

"Honestly, I don't know." I sighed, tightening the backs on the silver hoops in my earlobes. "I didn't really like sports and I wasn't that great at them, either."

"Uh-huh," he muttered cryptically, bobbing his head. "Uh-huh."

My response seemed to be exactly what Dr. Hall was looking for, and this realization made me angry. I felt like I was playing a game I'd never heard of with someone who knew the rules and had seen all my cards. This game sucked. I wanted out.

"Do you have your driver's license?" he asked.

"No," I shot back. I wasn't accustomed to being so discourteous to authority figures, doctors in particular, but I had the distinct feeling that I was under some kind of attack and it was instinct to try and protect myself.

"Why is that?"

"You don't need a car in New York City."

I was not about to tell him that my Driver's Ed instructor, Al Corbassi of Staten Island, had stopped the car after my third lesson and told me flatly that he'd return my money but he couldn't teach me to drive. My head wasn't in the game, Al explained. I couldn't change lanes without nearly bashing into the vehicle next to me, I went through dozens of stop signs, and I kept veering into the parked cars. "You'll try again another time," Al reassured me, before having me drive myself home for the last time.

Realizing he'd hit a wall with the questions, Dr. Hall rolled his stool a little closer and asked, "Can you see my hand?"

"What?" I asked, my face hot now, my voice rising. "I don't know what you're talking about."

"This hand. Can you see it?"

I turned my head to the right and there, a few feet away, was Dr. Hall's big, meaty paw waving its sausage fingers.

"Yes, I see it now!" I exclaimed. "It's right there!" I felt a sense of urgency, like I was sprinting across a subway platform to jump onto a train car just as the doors were slamming shut. And I'd made it, I thought, had gotten onto the train before it pulled out of the station. I'd seen his hand.

But it was too late. Dr. Hall turned his back to me to jot down some notes, and the length of time he spent writing made it clear that I hadn't passed his tests, any of them. If I had, there'd be precious little to write.

I've answered all his questions, I thought as I watched him scribble in my file, but he's not clearing me. He's not saying good luck at school and have a nice day.

It was obvious, too, that by failing the tests, I'd confirmed some hunch he had. I was furious that Dr. Hall wasn't bothering to mask his satisfaction in having his hunch—whatever the hell it was—confirmed. But more than my anger, I felt a mounting wave of terror building.

I joined my hands together on my lap and squeezed. My heart was racing.

Something is wrong, I realized. Something has happened.

Finally, Dr. Hall pushed the top of his pen to retract the point and leaned out the door of the exam room, calling his nurse.

"Set her up for an ERG," he instructed.

"What's that?" I asked quietly. I wasn't angry anymore. I'd be good, I'd be compliant, and maybe he'd like me enough to say I could go, that everything was fine.

"It's an electroretinogram test. It measures the electrical response of your retina to light," he said. "We can do it for you now and when it's done, I'll take a look at the results and we'll talk about it."

I followed the nurse into another exam room where she put more drops into my eyes. Then she pulled over a big, mean-looking machine with lots of red and black wires.

"I'm just going to place these electrodes onto your eyes," she explained.

I wondered if that matter-of-fact delivery ever worked for her, if people ever just said, "Cool, whatever." I raised my hand in front of me in a "halt" gesture.

"Electrodes?" I repeated.

"Yes, they're basically contact lenses with the electrodes attached," she reassured me. "Don't worry, your eyes have been anaesthetized; you won't feel a thing."

It doesn't take many trips to the doctor to learn you can't believe them when they feed you that line. The electrodes didn't hurt exactly, but they were bulky and heavy and caused me to blink involuntarily. This was unfortunate—and a serious design flaw, I decided—because every time I blinked, the electrodes would pop out. Then the nurse would sigh in a castigating way and reinsert them, first covering the lenses with goop, whose purpose, I guessed, was to help transmit the electricity from my retinas. This goop made my eyes tear incessantly, which made me blink, which started the process all over again.

I tried to pretend it was a game—a staring contest like the kind I played as a kid—but the punishing process of keeping my eyes pried open with those grotesque versions of contacts itching like mad was nothing like child's play. I fought against the muscles of my face, which conspired to squeeze my lids shut and expel the foreign objects lodged inside. I tried not to think about A Clockwork Orange. I tried not to think about how intensely pleasurable it would be to drop my lids shut, just for a second, relief like cool water running down your throat on a scorching day.

So, the nurse was dead wrong; I could feel things, all sorts of things, and none of them were pleasant.

"I need you to stop blinking." It was part order, part rebuke.

"Sorry," I replied. "I'm trying."

But I lost the stare-off, again, and out popped another contact.

"The more you blink, the longer we're here." She pointedly squirted fresh goop on the torture device and reinserted it onto the surface of my eye.

I swallowed hard to keep myself from crying. If blinking annoyed her this much, imagine how apoplectic she'd be if I broke down in tears. It occurred to me that it probably wasn't the smartest idea to apply mascara that morning. Then again, I'd expected a few drops and some flashlights, not electrodes.

Finally, the nurse had gotten what she needed and handed over a bunch of tissues to mop up the goop that was oozing out of my eyes. I let my top lids drop and relished the cool, quiet easiness of not looking. Being able to close my eyes whenever I felt like it was a terrific luxury, one I'd entirely taken for granted.

You don't know what you've got…, I thought.

The nurse held on to my elbow and led me back into the first exam room, because with all the drops and the goop, I could hardly see anything. I sat back in the exam chair, eyes shut as my relief was replaced with foreboding.

Everything might still be okay, I reminded myself. There's been no bad news. But there was a "yet" that followed the thought, and I knew that I should brace myself for impact.

I heard the door open and a rotund figure waddled in. Dr. Hall regarded the ERG printout for a minute and then he spoke, slowly, deliberately.

"Now, I want you to remember that I'm just the messenger here," he began. "Don't shoot the messenger."

"What is it?" I asked.

"You have a degenerative retinal disease." He paused, waiting for a response, but I sat there, silent, so he went on.

"It's called retinitis pigmentosa and it's genetic, even in your case, where no one in your family has it. Essentially, the photoreceptor cells in your retina, the ones that turn light into electrical impulses for the brain, are dying."

He paused.

I should not be here alone, I thought. I wish my mother were here.

"The disease usually begins by destroying your rods, responsible for night vision and peripheral vision, which explains you bumping into things and your trouble at nighttime. The degeneration of the cones, which are responsible for central vision, typically comes later on, though how much later depends on the individual patient."

There were tears sliding down my face, from the goop. I wasn't crying. I felt like it was important to tell the doctor this.

"I'm not crying," I said. "It's just the goop."

"I understand," he replied.

Then I asked him if he meant I was going blind.

"Now, please, remember, I'm just the messenger," he stammered. He seemed nervous, which was disconcerting.

I couldn't imagine this was standard protocol for delivering bad news. It seemed unlikely that in medical school, the professor of Intro to Bedside Manners had instructed a younger, thinner Dr. Hall to sprinkle his diagnosis with the phrase "don't shoot the messenger." Was I even sure this joker was fully licensed? I knew more about breaking unfavorable medical news than he did, and my wealth of knowledge was gleaned entirely from overhearing my father on the phone and watching prime-time hospital dramas.

"As I said, the loss of vision happens at a different rate for everyone," he continued. "Some people become legally blind, some retain light perception, others lose all vision. Some sooner than others. It's impossible to predict. So far your progression has been fairly slow, so all we can do is hope that it continues that way and that you have another ten, maybe fifteen years with lots of usable vision left."

My vision had just been given an expiration date. That seemed a bad sign.

"So the answer is yes, then," I clarified. "I am going blind."

"In a manner of speaking."

"In what manner of speaking?" I shot back. There was no point in being polite anymore. "I mean, it's not figurative, is it? I'm not losing my perspective. I'm going blind."

Dr. Hall said nothing.

"So what medicine can I take?" I ventured. "Or do I need an operation?"

"Unfortunately, at this time…," he began, and hearing his tone switch from upbeat to regretful was enough of an answer to make me stop listening. There was no cure, no treatment. This was the real deal, an old-school affliction where you get it, you're fucked, case closed. But as my mind fell with increasing speed into despair, I clung for a moment to a ledge of doubt.

"How can you be sure? How can you be sure that I have this?"

Dr. Hall unfolded the ERG printout and handed it to me. Although it was blurred, the chart was easy to make out. It was more or less a straight line.

"This is supposed to be sinusoidal," he said, "with ups and—"

I cut him off: "I know what sinusoidal means."

"It's supposed to show peaks in electrical activity when your retina responds to the light," he explained. "But in your case, we're not seeing those peaks."

There's no equivocation in a graph that should be wavy but is flat. Staring at that flat line, I knew no second opinion was necessary.

"This is going to affect the way you live your life," Dr. Hall went on, "and in a way, you're in a fortunate position now because you're just starting out. You're going to want to consider this factor as you choose a career, and a place to live, and a partner."

I closed my eyes. Dr. Hall disappeared, along with his flat-line graph and the eye chart on the wall behind him. It wasn't exactly darkness I found behind my eyelids; it was just absence, nothingness. I wondered if that was what blindness would be like.

"You're going to want to start making changes," I heard Dr. Hall say. I opened my eyes and found him leaning forward, looking at me intently.

"Do you understand?" he asked.

"Yes," I replied.

But I didn't. I didn't have a fucking clue.

Tip #2: On sharing the news

There is no good way to break the news of your incurable degenerative disease to loved ones.

Not the weirdly upbeat delivery ("So, guess who's going blind?"). Not the made-for-TV-movie approach ("There's something I need to tell you; are you sitting down?"). Not the downplayed, bratty teen approach ("So my eyeballs are rotting. Whatever."). All the ways bum people out.

Prepare for tears. Gifts of talismans. Sudden and impassioned religious gestures such as the laying on of hands and benediction with holy water. None of this is likely to make you feel better. It may, in fact, freak you the hell out, and cause you to determine that this news is the kind best kept private. Just be sure you know what you're getting into. You may find yourself a grown-ass woman in a disguise holding a mobility cane. Stranger things have happened.



Copyright © 2014 by Nicole C. Kear