Now I See You (26 page)

“Ellie, I’d love to hear more but I think we should probably move on so we get to everyone,” she interjected.

The woman next to Ellie introduced herself; her name was Ruth and she suffered from Usher Syndrome, which as far as I could tell was like RP Plus. Not only were her retinas degenerating, her ears were eroding too, so that she was both part-blind and part-deaf.

Finding out that I had basically gotten the
good
incurable eye disease made me feel both terrifically thankful and depressed at the same time.

“I have cochlear implants, which help me hear,” Ruth was saying, “but I’m finding it difficult to hear some of you so if you could speak up, I’d appreciate it.”

“Yes, let’s be sure and do that,” agreed Franny.

“What?” Ruth asked.

“I said, let’s all try and SPEAK UP,” Franny repeated with a little more oomph.

“Yes, thank you,” Ruth replied.

Emma, the woman sitting next to Ruth, didn’t have an eye disease but was the daughter of a woman with very advanced Usher Syndrome. Her mother hadn’t come because she never left the house anymore.

“It was gradual but now she’s completely deaf and blind,” Emma recounted, looking down at her cup of coffee. “She refused to face it while she still had sight and hearing left, so now she doesn’t know what to do. She never learned Braille or how to sign in her hand, and now it’s too late.”

Good God,
I thought
,
pressing my temples to relieve the tension headache I’d developed.
Is this the Ghost of Blindness Future come to scare me straight, show me how I’ll end up if I don’t change my prideful ways?

If it was, it was not working. I was scared all right; too scared. It took incredible restraint not to bolt out the door and spend the next fifty years drowning in denial in an attempt to forget this ever happened.

“I have no way to communicate with her now,” Emma went on, getting more choked up. “She just sits in her house with the curtains drawn, and I’m really worried. It’s like she’s given up on life.”

At this, Emma broke down in tears.

Oh for fuck’s sake,
I thought, my own eyes welling up. I have always been highly susceptible to the contagion of crying. I get it from my grandmother; both of us have hair-trigger tear ducts.

The man on the other side of her, Mr. Fedora with the seeing-eye dog, reached over to console her. It took a few tries but eventually, his hand found its way to her shoulder. The rest of us just sat in agonizing silence, unable to think of anything to say.

But Ruth, who couldn’t really see or hear Emma, didn’t know why everyone had grown so quiet.

“What did she say?” Ruth asked in the general direction of Franny.

“She’s—um—not talking now,” Franny tried to answer discreetly. “She’s crying.”

“What?” repeated Ruth. “I can’t hear you.”

“She’s
crying,
” Franny replied more emphatically.

“What?” Ruth pressed. “I really need you to speak up.”

“SHE IS NOT TALKING! SHE’S CRYING!” Franny shouted back, looking pained.

The whole exchange struck me as funny, riotously so. I knew it was just a juvenile defense mechanism—I’ve basically laughed away every moment of discomfort I’ve ever experienced—but knowing this did not make it any less hilarious. I felt like I was sitting on my sofa, eating popcorn and watching the scene in
Young Frankenstein
when the blind guy makes a mess with the soup.

A laugh percolated in my throat and the realization of how gauche a reaction that would be only made it harder to tamp down. It would be worse than the time I got tanked at my high school reunion and accidentally laughed during the moment of silence for the people who had died in our class. Suddenly I felt certain that I was going to laugh—not just a little titter but a deranged chortle that would possibly cause coffee to come out of my nose—and it would suck because I had enough problems without worrying that I was going straight to hell for being the shittiest person ever created. But just as I was about to bust a gut, I was distracted by the sound of a woman sighing behind me.

There hadn’t been anyone sitting directly behind me when I came in a half hour ago and I was consumed with curiosity about who the latecomer could be, especially since she seemed to share my perspective that we were watching theater of the absurd.

Uncrossing my legs, I let the sunglasses on my lap fall to the floor, giving me an excuse to turn around and check her out. There, in a chair a few feet away, was a woman who looked to be in her early forties, with dark curly hair, black eyeglasses and dangly earrings. She did not appear to have a cane, or a seeing-eye dog or hearing aids. She looked entirely, 100%
normal
. She saw me looking at her and smiled. I smiled back.

Please have a horrible incurable disease,
I thought.

It may sound unfeeling but I didn’t want to get my hopes up that I’d found a blind friend only to discover it was a false alarm. That had happened the year before and it’d been a major disappointment.

I’d attended a lunch thrown by a national blindness organization to raise funds and awareness for the group’s annual walkathon in Central Park. This was a highly unusual thing for me to do, but on offer was a free champagne brunch at one of my favorite restaurants, whose Belgian waffles with mascarpone whipped cream were enticement enough to get me in the door. Plus, I thought, it would be good for me. David couldn’t come along because he was on kid duty so I was forced to fly solo.

After I’d stuck a name tag on and picked up my walkathon promotional materials—formatted, thoughtfully, in large print—I scanned the room for a place to sit and noticed a table nearly-but-not-quite-filled with twenty-something women, all meticulously made-up with designer purses hanging off their chair backs. Feeling like the new girl in the cafeteria, I asked if I could sit at their table. They welcomed me in and I listened to them talk about their friend who was planning a honeymoon in Tuscany and about the Miss Sixty sample sale they’d gone to last week.

They aren’t defined by their blindness,
I thought with relief.
They don’t even look affected. This is where I belong.

After the waffles had been cleared away and coffee was being served, I summoned the courage to ask what brought them to today’s lunch.

“Oh, our coworker Lillian,” the girl next to me said. “She has this eye disease that is going to make her blind, so every year we go to the walkathon to support her.”

They didn’t look affected because they weren’t. I was such a moron.

“Why are
you
here?” the girl asked me.

I am,
I reminded myself,
at a
“Cure Blindness”
fund-raising meeting.
If there was ever a situation in which I should feel comfortable revealing my blindness, this was it.

“Yeah, I have a friend like that, too,” I lied.

As I was leaving, the girls introduced me to Lillian. She was well spoken with a pretty smile. She had enough vision left to look me in the eye and a good, steady job, far from a charity case. But she wore thick glasses, sensible shoes. She had taken Access-A-Ride over to the lunch. She didn’t seem unaffected. The disease had marked her. And not only did this observation make me feel like a shallow, awful human being, it scared me.

I realized with some irony that I didn’t belong with the cool girls and I didn’t belong with the blind girl. I didn’t belong anywhere, except far, far away from support groups.

But now, in the nursing home, it looked like I might find a friend after all. So I prayed that this dark-haired woman would be afflicted with an untreatable degenerative disease.

And she was, I found out a few minutes later when Franny called a break and the woman sidled up next to me as I filled my coffee from the box on the counter.

“What a terrible choice of venue, huh?” she said, adding creamer to her coffee. “Half these people don’t even have an eye disease, they’re just old. I’m Rachel, by the way. I have RP.”

“Me too!” I all but squealed.

“Here,” Rachel said, nodding down at her right hand which was extended in my direction. “Want to shake hands? I know I can never handle handshakes without a warning.”

This observation took my breath away. She knew what I was, and wasn’t, seeing. She got it. After all these years, my entire adulthood, I’d found someone else who dreaded handshakes.

“I’m a therapist,” she continued her introduction, “and I have three kids—fifteen, nine, and seven.”

I gasped, audibly. Rachel laughed.

“I’m just—just so impressed,” I stammered. Some door that had been soldered shut deep in my consciousness had just flown open. What I was thinking was,
I didn’t know that was possible. I didn’t know you were allowed to have three.

What I said was, “I’ve always wanted to meet another mother with RP.”

As I formed the words, I realized suddenly just how desperately I’d wanted that, though I’d never admitted it to myself. So when Rachel suggesting we take off and have an impromptu breakout session at a nearby coffee shop, I agreed readily.

As Rachel recounted her story, I hung on every word, from her diagnosis as a teenager to the visual decline that happened during her pregnancies to the oh-so-familiar trials and tribulations of childrearing with shrinking vision. How she’d broken her ankle a few years ago when she didn’t see a shoe one of her kids had left on the staircase. How she held her breath every time her kids took their annual vision test at the pediatrician’s. How she’d finally taken the plunge and started using the cane at night a few years ago. I was stunned by how much our stories overlapped, but what I found truly, well, eye-opening were the ways they diverged.

Rachel wasn’t the first in her family to have RP—her mother and a grandparent were diagnosed with the disease as well—and in part because of this and in part because she was just made of stronger emotional mettle, Rachel had never kept the disease a secret. Not from her kids, or her friends, not even from her employer. It was just something people knew about her, she said, and really, it wasn’t a big deal.

In fact, Rachel seemed incredibly well-adjusted, remarkably free of Sturm and Drang.

“Do you ever feel guilty?” I ventured when my coffee cup was almost empty. “About the kids?”

“What do you mean?” Rachel looked blankly at me, which was surprising as I’d anticipated that she’d understand exactly what I was talking about.

“I just feel so guilty whenever I bump into them or step on their feet or I can’t drive them someplace,” I elaborated. It was something I’d never told anyone, not even David. “Like they’re paying the price for my problem.”

“But all kids do, and every parent has a problem,” Rachel replied. “And this one’s not your fault.”

“Right,” I affirmed, looking down at my coffee.

“Why should you feel guilty?” Rachel was puzzled. “You’re a good mother, I can tell just by talking with you.”

“Yeah,” I replied uneasily. This was enough support-grouping for one day. I pulled my jacket on.

“I mean it,” Rachel persisted.

“Okay,” I told her, lining up the zipper. “Thanks.”

“You are a good mother,” she repeated.

And then, moments away from my clean getaway, I crumbled. This time, no amount of chortling could keep the feeling at bay. The support-grouping had cracked open my shell and now my emotional matter was oozing out as I wiped away tears, right there in the crop-to-cup coffee shop filled with hipsters and freelancers and toddler-toting stay-at-home moms.

I’d spent five years soothing and nursing and teaching my children, and through it all, I had been carrying around the feeling that I was not good enough. I would never be good enough. My kids deserved better. For five years, I’d wanted more than anything—more than a windfall of money or a good night’s sleep or an all-expenses-paid beach vacation—for someone to tell me I was a good mother, knowing the whole story. And now someone had, and I believed it.

“I’m glad I stuck it out at the meeting,” I sniffled as we stood, readying to leave.

“Me too,” Rachel smiled. “And you should give it another try later. There are a lot of interesting people who come and some really good information.”

“Maybe,” I nodded, walking toward the exit.

“Oh, watch out for the glass door,” Rachel warned. “I walked right into it the last time I was here: how humiliating is that?”

We exchanged phone numbers and made a plan to get the families together for dinner. I walked home with a skip in my step, giddy and cheerful and amped up on too many cups of coffee. I’d gotten what I came for and more—a friend, and a roadmap.

Tip #19: On reading

Once you become literate, you read without even meaning to. It’s just instinct; see text, decipher it. Except for when you can’t see the text anymore—not well enough to discern letters and numbers, anyway. What to do then?

You could, of course, get a magnifier. That would be sensible and effective, but not very discrete. It’s hard to be surreptitious staring through a massive magnifying lens á la Sherlock Fucking Holmes.

No, the obvious answer is: teach your children to read as soon as humanly possible and force them to be your personal print-to-speech translators.

What makes this strategy so ingenious is that it will look as if you’re helping your kid and not the other way around. No one will guess that you’re relying on a kindergartener to comparison shop at the supermarket or to tell you what service changes affect the 6 train. When you urge your little one to sound out the letters on a label or a sign or permission slip, it will simply look as if you’re offering them the opportunity to nail down their reading skills.

In this way you can feign literacy and campaign for Mother of the Year at the same time. Multitasking at its finest.

19. SURRENDERING

When Lorenzo was an infant and my identity was still in flux, I attended a Mommy and Me yoga class. Yoga has never been my thing, despite the fact that I’ve always wanted it to be, and doing it while holding a screaming baby in a room that stank of feces did not make it more appealing. Consequently, it was my first and only Baby on Board yoga experience; it did, however, leave an indelible mark. At the beginning of class, while we were still unrolling our mats and unpacking infants, the instructor told us a story I will never forget. She had two young kids at home, she said, and she had just gotten over the stomach flu.