Now I See You (22 page)

But if Heather thought I was uncool before, such a tirade would probably only cement this image. So I bit my tongue—as my mother would say, “til it bled”—and by the time I’d claimed Rosa, my rage had melted into sorrow. I was crying as I buckled the baby in the stroller, though she was too busy having a crying fit of her own to notice.

Since there was no way I was returning to the pony ride line, I bought her forgiveness at the Mr. Softie truck where I got her a chocolate cone as big as her head. She stopped crying all at once but it took me a few more minutes of sitting on the curb with my sunglasses on.

I don’t get to select a parenting style,
I realized.
I don’t have that luxury.

As I gradually lost vision, I gradually lost choices, too. It was always little, trivial things, none of them important except when you put them all together. I didn’t get to choose whether to wear heels or flats anymore; it was hard enough handling stairs and curbs in sneakers, much less teetering on four-inch stilts. I’d stopped wearing eye shadow after the third time a friend pointed out it was a bit, um, uneven; now I was forced to go bare because it was better than wearing a clown face. If it was a rainy day I couldn’t opt to take the kids to their doctor’s appointment with the car; it was always the bus.

One little concession that didn’t feel little at all was not being able to choose what kind of watch to wear. The Swiss Army watch my grandmother had given to me at college graduation had been getting hard for me to decipher and when I’d gone to Target to replace it, I’d found there was exactly one watch with numbers large enough for me to read and it was about the biggest eyesore in manufacturing history: an oversized round watch face studded with rhinestones, with a pink pleather band. The only choice I had was whether I’d hide it under my sleeve or wear it with pride, as if it was a fully intentional fashion choice.

I chose the latter—with the watch, at least. As far as my parenting was concerned, I was still trying frantically to keep the ugly truth of my blindness hidden under my sleeve. Little hints of it kept peeking out, though, like when I knocked the toddler down, and I knew I couldn’t keep it under wraps for much longer. The trouble was, after so many years, the hiding gesture had become instinct.

Pull the sleeve down. Cover up.

PART III

Tip #16: On coming to grips with your blindness

You’ll have to, you know. Not “when you’re ready,” because you’ll never be ready, but sooner or later.

Sooner is better than later.

16. RECKONING

The Park Avenue doc had said ten years, that I might have ten years of good vision left. The year of Rosa’s birth marked the tenth anniversary of my diagnosis. But the anniversary came and went, and still, miraculously, it hadn’t happened.

I hadn’t turned Blind. Yet.

Of course, the signs that blindness was barreling its way toward me were plenty and multiplied with each passing year. First, there was the medical evidence, the visual field tests that showed my tunnel vision getting tighter, the contact lens prescriptions that kept getting stronger until Dr. Goodstine finally told me we’d hit a limit and no matter how much he adjusted the prescription, it wouldn’t make my vision any better. It had gotten tough to tell if I’d put my contacts in correctly because I could hardly perceive the difference between what the world looked like when they were in and when they were out.

There were the cataracts, edemas, and development of color blindness. Thankfully, I’d already taught Lorenzo his colors so he could keep me from looking like I was getting dressed in the dark, which I basically was. You know you’re headed toward disaster when you rely on a five-year-old boy for fashion advice.

But I had bigger problems than wardrobe mishaps. By Rosa’s third birthday, I couldn’t read regular print anymore. It was getting harder to fill out forms at the pediatricians and preschool, and I’d taken to eating a lot of Caesar salads at restaurants because I couldn’t make out the print on menus but it was a safe bet that “Caesar salad” was on there somewhere. I smashed my shins into coffee tables and my forehead into monkey bars on a regular basis. I missed stairs, handshakes, sign-up sheets. I didn’t recognize acquaintances until they were practically on top of me.

And I couldn’t read Dr. Seuss. That was a blow.

In the midst of a day full of wiping asses, noses, and tears, and trying not to lose my children in public, nothing warmed the cockles of my heart more than curling up with my kids on the sofa to read
Green Eggs and Ham
.

Reading to the children has always been my all-time favorite parenting activity, allowing me to combine two of my great loves: literature and lying down. Consequently, I read to the kids at every possible opportunity. I didn’t cook or clean the bathroom; I didn’t do arts and crafts and I didn’t make cupcakes from scratch for their birthdays. This was my only shot at making it to the Mother of the Year finals.

But when Rosa was three and Lorenzo was five, my failing vision turned the reading of
Green Eggs and Ham
from a treat to a tribulation.

The first few pages were easy enough to memorize.

“I am Sam!” I’d start energetically.

“Sam I am!”

Booyah. Cake walk.

But after the first few pages, things got dicey. It’s not that the words were so complex or anything, but there was a world of difference between
house
and
mouse
and
box
and
fox
and the kids were hanging on every word. They didn’t know it, but what they were hearing was the sound of a woman becoming illiterate. The same woman who five years earlier had consulted the OED to write her master’s thesis on Virginia Woolf was now staring dumbly at a four-letter word beginning in “b.” I bet you thought the road to literacy was a one-way street. Not in all cases.

“And I would eat them on a—on a—bbbb—boooo—”

My main strategy was to stall by stretching out the beginning sound of the word until I could figure out what the second half amounted to. Consequently, my kids probably think words like “here” and “there” have four syllables each.

“And I would eat them on a bo-booo—”

I knew there were two more letters to complete the word but what were they? Looked like a U, maybe. Then an L? I felt like I was failing my high school eye exam all over again. No, couldn’t be UL: “boul” was not a word, not even in Seussland. I could almost make it out, damnit, I was so close. Wait, maybe it was WL. That
was
a word! It made sense. Yes! Got it!

“And I would eat them on a bowl!”

“No Mommy!” Lorenzo piped up. “Not on a bowl! On a BOAT!”

“That’s right! Good listening!” I cheered. At least I was honing my child’s prereading skills. “Okay, and I would eat them on a boat, and I would eat them with a coat.”

“MOMMY!” shrieked Lorenzo, giggling madly. “Not coat! GOAT! GOAT!”

“Oh, you’re too smart! Soon you’ll be reading this to me!”
The sooner, the better,
I added silently.

“When do these kids learn to read, anyway?” I asked David later, “Let’s move that up the priority list.”

“Get a magnifier,” he suggested, for the umpteenth time.

“They’re so much trouble,” I protested. “They make me nauseous. They’re expensive.”

The truth was, I’d tried the kind they sell by the register at pharmacies and bookstores and they hardly helped at all, certainly not enough to compensate for the trouble of locating them in the epic mess of my apartment and the sting of admitting that I needed one. Eventually, I’d need a serious, industrial-strength magnifier, but not yet. I wasn’t that bad off yet.

The curious thing about living with a slow-burning degenerative disease is that the progression never feels gradual, even though all medical evidence proves that it is.

I know that my eyesight is eroding slowly, a few more rods and cones every day, some months faster than others, but for the most part, slow and steady. But that’s not the way I experience the loss. The image I see doesn’t gradually get fuzzier and fuzzier like when you adjust the focus on a manual camera: the aperture doesn’t slowly close in, tighter and tighter. From my perspective, my vision holds steady, the disease seemingly paused, until suddenly it takes a giant leap forward, like Pac Man bit a huge chunk out of it. When that happens, suddenly I can’t do something I could do the day before. One day, I can read the demarcations on an Infant’s Motrin measuring cup and the next day, I can’t. One day, I can put eyeliner on straight and the next day, I can’t. I perceive the loss of my vision through the loss of things I’m able to do and that loss, though years in the making, doesn’t feel gentle. Every time it happens, it is sharp, shocking, cruel, like a fast jab to the solar plexus. I am never prepared.

So just after Rosa turned three, when I received an invitation to a birthday party for one of my best friends, Vivian, I grumbled and cursed but I didn’t say “No fucking way.” I was nervous about going, but I thought I could manage.

One of the very best things about having children, besides the heart-exploding love, is the fact that you have a get-out-of-jail-free card for most social events for at least two years. Coworker’s retirement dinner? Regrets, baby’s got a cold. Neighbor’s Superbowl party? Regrets, baby’s napping. Family reunion? Regrets, baby’s teething something awful. That excuse is worth the pain of childbirth, particularly a birth with an epidural.

The excuse was especially valuable to me because most of these social functions occur after dark. Being night-blind, I sometimes forget that not everyone thinks nighttime sucks raw sewage. It always comes as a surprise to me that many of my friends, particularly the single ones, actively enjoy the night, so much so that they create a whole life within its bounds. This is what people call a “nightlife.” I have found that people who have a nightlife aren’t content with just having theirs, they want
you
to have one too, and they won’t stop inviting you to dinners and cocktail parties until you’ve got a nightlife of your very own.

Thanks to having my kids two years apart, I got almost five years of maternity leave from my nightlife and I enjoyed every minute of it spent in my pajamas on the couch. But when Rosa turned three, my get-out-of-jail-free card expired. I had kids now, not babies, and there was no good reason I couldn’t leave them with their daddy.

Except that I needed their daddy to come along with me. I never said as much to David when I asked him to be my plus-one at a party but we both knew that it wasn’t only his charming company I wanted. After years of practice, David had learned exactly how to help me navigate in the dark, and even more importantly, he’d learned to do it so surreptitiously that no one would notice. A few close friends, including Viv, knew about my vision problems, but we’d hardly ever discussed it since the diagnosis, and I hadn’t mentioned that in the past twelve years, things had, ummm, deteriorated a bit. There were no two ways about it: David was the safety pin holding my shoddy nightlife together.

David hadn’t enjoyed his position as my seeing-eye guy when we were living in LA and he didn’t enjoy it now, either. The hermit in him loathed being an escort and having to make small talk, and the Honest Abe in him hated the cover-up. More than once, he pointed out that as long as I refused to come out of the disability closet, he was forced to be my beard. And wasn’t this part of why we moved back to New York, he asked, to give me my independence back? So, though it made my life easier to have him on my arm, whenever possible, I tried to go it alone.

Which is what I decided to do for Viv’s thirty-third birthday, despite the fact that none of the event details boded well for my success. None of our mutual friends were able to attend. The party started at nine p.m., way after the forgiving window of dusk. And the venue was a new hotspot in the West Village. Not only was it totally unfamiliar to me, but I knew it’d be dim, because if there is one thing you can count on, it’s that the hipper the bar, the darker it is.

I seriously considered telling Vivian that we were out of town or Rosa had the croup again but I’d done that for the past three years and Viv was one of my best friends. I was beginning to feel like an asshole, in addition to a liar.

Besides, I thought, what the hell happened to carpe diem? What the hell happened to living like there’s no tomorrow? After a day of potty training and volunteering at kindergarten recess, I deserved a night of empty talk and overpriced cocktails.

Screw it,
I decided.
You only live once.

That evening, I unearthed the blow drier, dusted off the dangly earrings, and spent a good twenty minutes applying makeup in the magnifying mirror. With the help of cutting-edge breast-support technology courtesy of Victoria’s Secret, I was able to turn back the clock to my prebreastfeeding splendor. I put on heels, figuring I might break an ankle but I wouldn’t be holding a baby, so even if I did, it’d be okay. When I stepped on the B train to Manhattan, I felt like my hips made an audible “va-va-voom” sound when they swayed. I was back in the game.

I didn’t stumble or bump into anyone on the subway ride over. I managed to make out the street signs and locate the bar without too much trouble and I was only a half hour late, which by my clock is pretty much on time. But as I strutted toward the bar’s front door, I felt my optimism falter. The place wasn’t just dim, but a kind of deep, unforgiving dark I associate with Hades, or the countryside. There didn’t even appear to be tea candles on the tables, which was totally unprecedented. At the very least, I could always count on a few measly tea candles.

Unbelievable, just unbelievable,
I fumed, getting defensive so I didn’t have to feel sad.
Isn’t there some kind of legislation mandating a certain amount of illumination in a commercial establishment? I mean, this is a lawsuit just waiting to happen.