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.
In the weeks that followed my diagnosis, I made a good show of carrying on with business as usual to boost my family’s morale, but I spent most of my waking hours trying to figure out what had happened in that doctor’s office. Was this new information a game changer? What did it actually mean for my future? Dr. Hall had talked about making changes in my life but I was damned if I knew what changes he meant. Was he implying I start pinning socks together in the washing machine? Learn Braille? What did blind people do, anyway? From what I’d gleaned over the past nineteen years, there were three options: penning epic poems (Homer/Milton); composing musical masterpieces (Ray Charles/Stevie Wonder); and selling pencils out of paper cups (homeless people). Slim pickings.
Incessantly, I worried that the diagnosis meant I couldn’t have kids. My children were only conceived of in my mind, but they were fully formed. I had dreamt of them since I was a little girl, swaddling my Cabbage Patch dolls and imagining what I’d name my real babies one day, what songs I’d sing to them at bedtime. I’d imagined my children every night I babysat for the neighbor’s kids, every summer I worked as a camp counselor, every time I cooed at an infant in an elevator. And now I couldn’t, in good conscience, have them.
Could I? I’d never heard of a blind person having kids. How could I change dirty diapers or bandage scrapes if I couldn’t see? How could I avoid walking the stroller into a manhole? Plus, even though I was the first in my family to have the disease, it was genetic and I could pass it on to my children. Wouldn’t that be selfish? All signs on the road to motherhood seemed to say, “Proceed no further. What are you, fucking crazy?”
But childlessness was just the tip of the iceberg. How was I going to work? How would I be a star of stage and screen? Who would find me sexy when I couldn’t apply eyeliner or pick out my own outfits? How in the hell would I have the fabulous life that I was on the cusp of beginning?
I forced myself to get out of the house, but no matter where I was, one insidious fear kept slipping in. It was disconcerting because, having always been a perky, optimistic girl, I wasn’t used to macabre musings. I felt like the ghost of Sylvia Plath was invading my body, an experience that, for the record, sucks balls. I’d be in the communal dressing room at Joyce Leslie in the West Village, trying on swimsuits, when all of a sudden the thought would surface. It was a calm, cold report:
Right now, my eyes are dying. Today, I see less than yesterday. Tomorrow, I’ll see less than today. It will keep getting darker, little by little, like night falling, until the last sliver of sun has set and all the light has died. There is nothing I can do to stop it. There is nothing I can do. There is nothing.
Inarguably, a downer. But not as much of a downer as the general atmosphere in my house.
My parents shuffled around like someone had turned up the gravity dial and it was a struggle to stay standing. Every time I saw my grandmother, she’d start crying and muttering her rosary in Italian, thus creating a vortex of gloom so intense it could’ve sucked the cheer out of Disneyland. An incurable neurotic, she’d spent my whole life worrying about my sisters and cousins and me—calling the police if we were a half hour late getting home from high school, force-feeding us chicken soup when we had the flu—and now, it had finally happened. The nasty twist of Fate she was preparing herself for had arrived and there was nothing she could do to fix it.
There’d been a period of real panic immediately after my visit to Dr. Hall when it dawned on everyone that since my disease was genetic, other members of my family could have it, too; at particular risk were my sisters, Marisa, seventeen, and Jessica, nine. It had been a tense week or so before everyone could get appointments with a retinal specialist (not Dr. Hall, never Dr. Hall again), but finally, it was determined that my sisters, parents, cousins, aunts, and uncles were all unaffected. The crisis was contained in me. Of course by that point, my parents had had ample time to contemplate what it meant, in practical terms, for their nineteen-year-old to be going blind. I can only imagine what they imagined because we didn’t talk about it, but if their hunched sho
ulders and downturned eyes were any indication, the outlook was not rosy.
I’m sure they were trying hard to mask their grief, but hiding intense emotion has never been a skill my family members possess. It was clear that they were devastated, and this frightened me. I was trying to formulate my own reaction to the diagnosis, and their sadness did not point me in a positive direction. No, the message I was getting was pretty much: “Abandon all hope, ye who enter here.”
About a week after the diagnosis, I walked into my father’s study and found him crying. At first, I didn’t notice he was crying. What I noticed when I walked into his home office, located off the kitchen, was the massive medical volume lying open on his desk. I’d never seen one of those behemoths off the shelf before; until then, I’d suspected they were a front, like a hollowed-out Bible that houses a flask or a pistol. But now my father was sitting at his huge oak desk, always so neatly organized, with his narrow shoulders slumped over the book. The gooseneck clip light was on and he was wearing his reading glasses, turning the tissue-paper pages.
“What are you doing?” I ventured.
He turned to me, and his face looked so crumpled and sagging, I instantly regretted saying anything.
He looks so old, I thought.
“Come here, honey,” he said, beckoning me over to a wooden chair near his desk. Then he smiled, one of those sad smiles people muster up to make you feel better but that have the exact opposite effect.
“I want to tell you—,” he started, and then his voice broke off and he removed his glasses.
My father is not an unemotional man—he gets visibly angry and disappointed and excited—but I’d never seen him cry before, not even when his mother or father or brother died. My dad is the fix-it guy. He repairs things. If you’ve got a splinter, he takes it out. If you’ve got an infection, he prescribes antibiotics. If you’re on vacation and there are five of you and only one bed, he fashions luxuriously comfy sleeping surfaces out of suitcases and outerwear. Broken toasters, wilted orchids, malfunctioning heart valves—there is nothing my father cannot fix. Almost nothing.
I’d known the diagnosis was bad but watching my father cry, it seemed worse than bad. It seemed insurmountable.
“I just want to tell you that I’m sorry,” he managed, wiping his face briskly. “It’s my fault. I gave you my genes, and they did this to you.”
As the Park Avenue doc had explained it, since there was no family history of the disease, mine was probably a spontaneous mutation, which meant that my father’s self-flagellation was, technically, unwarranted. Which would’ve been helpful to mention had I not been struck dumb, as well as half blind.
“If one of the genes was just a little different, this wouldn’t be happening,” he went on.
“It’s okay,” I croaked.
“I wish I could take this off of you and put it onto me. You don’t deserve this.”
The lump in my throat was getting unmanageably big, and I knew any second, the only thing that could make the situation worse was about to happen, and I’d start crying, too. Pretty soon, my dad and I would be bawling in stereo, and the sound of that sobfest would attract my mother and sisters, and then everyone would be weeping like a goddamned Greek chorus. This had to end, now. I cleared my throat.
“It’s not your fault, Daddy,” I began with confidence. “And it is going to be all right. There is a lot of promising research and I’m young so there’s plenty of time. It’s going to be all right.”
I made up the shit about “promising research.” I mean, there probably was some mad scientist somewhere injecting stuff into rat retinas or reconstituting cadaver eyeballs, and for the purposes of this emergency pep talk, these endeavors qualified as “closing in on a cure.” I must have sounded convincing because my father smiled.
He took my hand and squeezed it. Then he put a bookmark in his medical book, closed it, and told me he was going to bed.
I, on the other hand, might never sleep again. Seeing my father cry was more harrowing than having electrodes attached to my eyes. Whatever else happened, I had to make sure I never saw my father cry again on my account, because I might not make it through the next episode with my wits intact. I’d have to deliver on my pep talk, make sure it did turn out all right. The first step was clear: get the hell out of Bleak House. That was easy enough, as I had to report to my post as acting apprentice in Williamstown shortly.
But there was another, more important step I needed to take to turn things around: from now on, I’d keep my depressing disease to myself. It was becoming clear that I’d have enough on my plate without having to deal with the pity and concern of other people. Unlike leprosy or elephantiasis, nobody would know about my disease unless I told them—for now, at least. And I had a right to privacy, I reasoned; I had a right not to be reduced to The Tragic Case. As far as my family was concerned, not only did I have a right, I had a responsibility.
Tip #3: On handshakes
When you lack peripheral vision, handshakes can be a real pain in the ass. You’ll inevitably leave folks hanging with their palms splayed out expectantly, and they will have no choice but to conclude you’re a stone-cold bitch.
Thankfully, there’s an easy solution. Be aggressively friendly and beat your partner to the shake. As soon you sniff an introduction in the works, shoot your right hand out like a ramrod. With lousy depth perception, you may misjudge how close they’re standing and end up making contact with your potential friend’s solar plexus instead of their hand. Should that occur, act like it was fully intentional by rubbing the fabric of their shirt between your fingers, offering a relevant observation, for example: “What is this, cashmere? Or is it a blend?”
This tactic works best when your partner is donning linen or silk or worsted wool, and less well when they are wearing, say, a white Fruit of the Loom T-shirt soaked through with sweat from their morning jog. Still, at worst they’ll assume you’re a flirt (not necessarily a bad thing) or that you’re an eccentric with a background in textile arts (even better).
3. CARPE DIEM
If I had hair like that, I’d be smiling, too, I thought as I slammed my hammer down. For a second, I felt better. Pounding nails into wood has that effect. Then I realized I hadn’t driven the nail in, only flattened it on top of the wood like roadkill.
“Sonofabitch,” I muttered. It was my grandmother’s favorite curse and always made her feel better. But my mood was too far gone. Not even a fancy expletive like “holy mother of shitballs” could do the trick.
It was clear: I had no future in construction. Which was fine by me. I didn’t want to be building the sets for the Williamstown Theatre Festival in the first place; I wanted to be treading on them, as an actor. I didn’t want to be hanging lights or Xeroxing scripts either, but none of that was as bad as building sets because not only was I piss-poor at it, but a construction site is no place for a half-blind person. Navigating my way across the set-in-progress, I felt like a character in a video game, trying to step over nails, saws, and screw guns, trying to dodge lumber as it was carried around—all with tunnel vision.
I’d imagined that my gig as acting apprentice would involve more Molière master classes, less coffee runs. I was, consequently, pretty disgruntled. Ruby though, a fellow apprentice, didn’t seem to mind in the least. I knew this because my eyes had been glued to her, with a pathetic envy, for the past few days.
Ruby was no traffic-stopping beauty, but she had stupefying auburn hair—the kind of ringlet curls I’d pined for, ever since I was six years old and begged my mother for my first hot-roller set. My own hair could only be described by the endearing term “dishwater blond” and was so lifeless it looked like the “before” shot in a shampoo commercial. Between her curls and her full figure, Ruby looked like she’d stepped out of a Rubens painting. And this is what I thought every time I saw her—Rubenesque Ruby. It was wildly aggravating.
It wasn’t really her hair that made me jealous, or because she was dating one
of the Equity actors, or the fact she could drive nails in straight. It was because of her damned joie de vivre. Ruby was genuinely devoid of negativity and emotional strife. Ask her to haul out the garbage or sew four million sequins on a hat and she’d nod, honestly happy to be of assistance. Making matters worse was the fact that when she’d tried to shake hands the first time we’d met, I’d been too busy staring at her Disney princess hair to see her hand extended. Finally I’d noticed the expectant, then confused look on her face, pieced together what had occurred, and looked down just as she was lowering her wilted palm. Now, even though she was perfectly civil, I knew she thought I was a whopping asshole. Of course, being so magnanimous, she bore me no ill will, just felt sorry for my sad little shriveled-up heart.
“That’s not why you should feel sorry for me!” I wanted to shriek every time I saw her, but it was too late to clear things up now and besides, she was right: my heart was shrinking down to a Grinchish size.
Not so long ago, I’d been a perky, capable girl like Ruby who—apart from the Frog Legs episode—had no reason to be anything other than sunny and optimistic. But ever since my visit to Dr. Hall, I’d been in the thick of a metamorphosis.
During my first few weeks at Williamstown, I just felt empty. My heart was like a vacant apartment that those chirpy roommates Joy and Hope had moved out of. By midsummer, the new tenants showed up and they were motherfuckers. Fear and Anger stomped around my insides, making renovations I hadn’t approved—ripping up the floors, knocking down support walls. It wasn’t just fear of the future that plagued me, but terror about what could befall me at any moment. Now that I knew how much of the picture I couldn’t see, I felt skittish all the time. Was there someone silently standing at my side? A car speeding through my ever-widening blind spot? Fueling my fear were the accidents that happened constantly—banging my forehead into an open cabinet, twisting my ankle when I missed a stair.
Now I See You Page 3
