Now I See You (3 page)

“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 over hearing 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 standing by a canal with a mobility cane in your hand. Stranger things have happened.

2. MY FATHER’S STUDY

It’s an unsettling sensation to witness your past getting a major rewrite. It was like Dr. Hall had run a “find and replace” search on the document of my life; for every instance of “clumsy,” replace with “blind.”

I kept thinking of a book I’d read when I was about eight, a slim paperback about Helen Keller’s childhood. The illustration on the cover was framed in black and showed Helen, about the same age I was when I read it, blindfolded with a white cloth, holding a cat against her chest. I’d devoured the book, like I did so many, in an afternoon, and had read a chunk of it while following my mother around Cangiano’s Italian supermarket. I’d been so engrossed in the book, in fact, that I’d walked into a display of discounted biscotti and caused a cookie avalanche.

“Would you pay attention to where you’re going?” my mother had hissed. “Put the damn book down for a minute!”

So I did, turning my attention instead to picking out what kind of ravioli we were going to have for dinner. There was no way I could have guessed that the reason I bumped into the biscotti wasn’t because I was a bookworm with her head in the clouds but because the cells in my retina were degenerating. Now, a decade later, I kept replaying this scene in my mind, thinking of a phrase I’d recently learned in an Intro to Theater Studies lecture: dramatic irony. As a privileged kid with no impediments, really, of any kind, I’d felt so sad for Helen, so sorry for her. Now the girl with the blindfold was me.

All those accidents I’d had over the years—smashing my forehead into lampposts, bashing my shins into coffee tables, face-planting when I tripped over fire hydrants—they weren’t because I was an airhead who didn’t pay attention. They were because I had one-third the field of vision that everyone else had; instead of a wide arc, 180 degrees, I had a narrow strip of 60 down the middle. I was a horse wearing blinders, ones that blocked out the world not just on the sides but on the top and the bottom, too, and weird little patches in between. And that was at my best, during the day, with all the lights on. In dimly lit places and at nighttime, it were as if I was wearing a dark veil, one I couldn’t take off.

I wasn’t a fan of this Blind Rewrite; the whole thing was maudlin, overblown. I wanted to revert to the original where I was a ditzy blond, because in that story everything worked out okay. In the new story, where some disease was nibbling holes in my vision like a mouse gnawing through a slice of cheddar, everything did not work out okay. Suddenly, somehow, I’d been screwed out of a happy ending.