Until I Say Good-Bye (23 page)

The Old Man of Karpaz

E
arlier in the day, in the same white plastic chair where Stella sang, had sat another extraordinary soul, a man named Savas.

When we booked the reservation, Erdogan had volunteered to help find people in neighboring villages who knew Panos or his father, Petros, the village teacher.

“The elder of the Greek village, the Old Man of the Karpaz, he knew them,” Erdogan said. “I will bring him to you.”

Before we went to the monastery, the eighty-two-year-old Savas appeared. He wore thick black eyeglasses and walked with a cane. He had one upper tooth.

“I am getting my teeth Monday,” he said, beaming.

Savas chose to remain in his Greek village after the Turkish invasion. He became the area's consummate diplomat, Erdogan said, engaging the Turks, promoting peace, hosting the United Nations relief workers who supplied the village.

Savas spoke Greek, Turkish, and British English very well. So well, in fact, he corrected Nancy's pronunciation of the word
daughter
.

“Ah, that's right, you're American.” He smiled.

Savas had gone to school with Panos. I asked if Panos had been a cut-up in class. I had been one: switching the clock, trimming ponytails, and Nancy's favorite, dangling pencils from my nostrils during math lessons.

“No, no. Panos was a good boy. A teacher's son,” Savas said.

Savas knew my grandfather, Petros, and grandmother, Julia. Now remember, Julia was the mustachioed woman I once mistook in a photo for a man.

“Does Susan look like Panos?” Nancy asked Savas.

“She looks like her grandmother,” he said.

Nancy and I burst out laughing. She moved in for the kill.

“Was she a pretty woman?”

“She was . . . a lady,” Savas said swiftly.

Nancy and I laughed uncontrollably. Alina, who recollects as a child being scared of the mustachioed Julia, silently smiled.

I switched subjects, interested in Savas's life as a refugee in his own home.

Erdogan had said there was something Savas wouldn't tell us. That he lost a son in the war. Truly lost him. That his son never came home, dead or alive.

Savas told us that his Greek village was now sixty-eight people, down from hundreds. The youngest villager was forty-two years old, finally married but unable to have children.

I asked Savas if he was happy he'd remained.

“A million percent happy,” he said.

He expressed no bitterness, no hate, no blame, though he had watched his village dwindle away and lost his son.

I will never forget that attitude.

Thank you, Old Man of the Karpaz. Thank you.

I leave Cyprus, the physical island and place in my heart, with your outlook in mind.

New York City

July

Kardashians

M
y daughter Marina was crackin' me up describing her Cuban-American friend's mother, Alex, and Alex's various beliefs.

For example, Alex believes that if you talk on a cell phone when the battery is low, you will get cancer. And if you go to bed with your hair wet, you will get pneumonia. And if you swim in a pool with leaves in it, you will get some god-awful disease.

Marina has been a vegetarian for years now—her choice, not mine—and this horrifies Alex, who is convinced it will impair Marina's fertility.

“She told me I am going to have to put yogurt in my vagina one day,” Marina said.

Marina and her friend, Lizzy, aren't permitted to sleep together in Lizzy's queen-size bed out of fear they might become “lesbos,” as Marina says, making quotation marks with her fingers.

One morning Lizzy's father found them sleeping in the bed. “He asked us if we had kissed,” Marina said, screwing her face up in a WTF expression.

Marina's eyes widen and a true look of horror comes across her face, though, when she says the following: “They make Lizzy clean the whole house!”

Here at the Wendels', a primary source of arguments is Miss Marina's utter lack of tidiness.

Her bedroom and bathroom often look as if drag-queen burglars have rifled through every drawer, tried on every piece of clothing, opened every makeup container, brushed their teeth, then left their spittle in the sink and the flat-iron singeing the vanity.

When I could walk and yell—I can no longer project my voice enough to make loud noises—I did a lot of stormin' into her room, scoopin' up scattered items and hollerin', “I'll give these to a kid who will take care of them!”

I distinctly remember standing in front of my children yelling, “Stop yelling!!”

No more.

Now I am more namby-pamby, another silver lining of this LouG mess. I sit stuck in my Chickee hut, unable to see the jumble in Marina's room, getting my Zen on and mulling how you can't fight nature. You can't fight the messy habits of a teenage girl.

And I can't fight what is happening to me. There is no cure for ALS.

(Which, by the way, is absurd. Seventy-three years after Lou Gehrig's famous speech, there's still nothing. Absurd! I mean, my phone can talk to me. We can play remote control cars on Mars. But we can't figure out how to keep nerves alive.)

“What will be, will be,” I tell myself.

And in comes John, hollering: “I can't believe you let her go to the beach with her room looking like that!”

“Don't fight nature,” I calmly reply.

“Susan! It's unsanitary!”

I have lapsed so in that department of parenting. The badger-the-heck-outta-your-kids-to-make-them-better-neater-sanitary-people department. I can travel to Hungary and Cyprus, but I cannot walk into my daughter's room to tell her to pick up her dirty shirt.

I have saddled my poor husband with the job.

John, formerly one of the most even-tempered Joes you will ever meet, now has near-daily meltdowns trying to get the kids to pick up wrappers, put their clothes and dishes away, or help unload the dishwasher.

A fiber bar wrapper left on the sofa can result in a fifteen-minute brouhaha, beginning: “I told you not to eat on the sofa!”

This morning, John awoke Aubrey by banging on a pot and ordering him out of bed to pick up said wrapper.

Poor John. I have let things slide and slide, unwilling to ask the children to do the things I used to do. Now making him be the disciplinarian. The parent who walks in the room—now that I can't walk—and tells them no.

“Don't you dare make Marina feel like she has to be the mom,” I tell John all the time.

Mercifully, Marina is fourteen years old. Which is to say, she is living on another planet. She is often too busy with her friends to think about me.

Much of the time, she may as well be riding in that remote control car on Mars.

I was reminded of this the other eve when she bopped in the room and asked if she could change the TV channel to the reality show
Keeping Up with the Kardashians
.“Sure,” I said, eager to share something with her.

I prefer
Law & Order
or
Frozen Planet
or perhaps
My Big Fat Gypsy Wedding
, the last to marvel at how the young women in that community dress like prostitutes. The gypsy wedding show at least has a cheap gaudy quotient going for it. But the Kardashians?

Marina watched rapt with attention as a bunch of gorgeous women whose names all begin with “K” and their emasculated spouses fought, and the K's played jokes like hiding one another's Ferraris, and K-Mom flitted in and out of their mansion, too busy with her booming business to cook dinner for her children, while driving with the K-kids in her sports car, flipping birds and cursing at other drivers.

Marina was fascinated.

“Whyever would you want to watch this show?” I asked.

“What's not to love?” she answered.

“What do you love about it? What? Help me understand.”

“Oh, Mom, you are so cute.”

Yes, Marina often says I am cute, as she bops from one room to another, dyeing her hair or raiding my closet, passing me in my chair as I try to feed myself from a tray like a two-year-old.

“You are soooo cute,” she says.

And my soul smiles.

I am glad I am cute to her.

“I want to take you on a trip,” I tell her. One that she will remember long after I'm gone. I want a way into her world, at least for a few days. I don't tell her that part.

“Where would you like to go?”

Her eyes pop open wide. She smiles. “Calabasas, California. To meet the Kardashians.”

She is not kidding.

Years ago, I saw the movie
Life Is Beautiful
, about a man in a concentration camp with his young son. The man reinvents the experience for the child, hiding the horror in humor and fantasy. Hiding the horror with his spirit.

That is what I try to do every day with ALS. For a long time, we did not say the name around the kids, because then they are one Google away from the horror.

Early on, a psychologist advised John and me not to talk about my disease with the children. Children ask, he told us, when they are ready.

Marina has hardly asked a thing.

I hope hope hope I am doing the right thing. That I am doing what I should for my children. I wonder if one day it all will backfire, if Marina will be disappointed that we did not discuss my disease or what dying young taught me.

I hope not.

She is only fourteen. And perfectly herself.

I am an awful prognosticator of human behavior. I never ever woulda guessed that humans would pay $5 for a cup of coffee if you gave it an Italian name. Or pay big bucks to stand in the sun and watch race cars drive around in circles. Or watch
Keeping Up with the Kardashians
.

But this I do know, or at least I think I do: the stronger I am, the stronger my children will be.

Wesley thinks it's the coolest thing that I now eat on a tray just like he does at school. He's sheltered, too, by Asperger's.

“Mom, can I use your tray?” he asks.

“Of course,” I answer.

He plops beside me. “This is cool,” he says.

He watches intently as I take an olive and lift it slowly toward my mouth.

“Do you like Lilo or Stitch?” he asks.

I look at him, chewing slowly. He smiles. Yes, my son, this is very cool indeed.

And Marina?

I would have taken you to Calabasas, California, in a second, my love. But you can't just walk up to the Kardashians—even if you still can walk.

Marina's Trip

T
he trip to New York came together in a second, right in the beauty parlor, while my hairstylist was coloring my hair.

Kerri is more than a hairstylist, she is a friend. We have known each other for ten years. Our daughters have been good friends since kindergarten. Our sons used to carpool to school.

She had been divorced from her husband for as long as I had known her. Now she was getting married to her girlfriend Pam.

Pam is a microbiologist. An amiable, sweet-souled scientist adept at interacting with people as well as petri dishes. Kerri was over-the-moon happy to have found her. She didn't have to tell me that—though she did, a hundred times.

I could see it in the bouncy way she slathered on my dye.

Kerri is what I call a hug-the-housekeeper girl—so affectionate she hugs everyone, including my housekeeper Yvette, each time she comes over. When she's happy, you know.

During the wait for the hair dye to glom onto my gray, Kerri told me details of her upcoming wedding.

It would be in New York, where same-sex marriage is legal. Her dress would be ice-blue, Pam's dress black. Reception at Pam's sister's house in Hackensack, New Jersey. Cupcakes made by the Cake Boss, with hydrangea flowers because hydrangeas look like butterflies. Kerri's deceased mother loved butterflies.

There were a host of other details planned to memorialize their loved ones lost. Their bouquets would be mementos of those souls. The coins Grandpa always rubbed together; the flowers Grandma made with fabric from her old dresses; a small photo of the baby that died; a piece of beach glass—ice blue and tear-shaped—that they found one day when Kerri was badly missing her dead brother.

In her shoes, I would have been hyperfocused on the perfect bouquet: purple roses atop short stems bound in just-the-right-color ribbon. And here were Kerri and Pam, their chief concern to hold the dead in their hands.

I was so moved, I invited myself to the wedding.

Then I remembered that the year before, Marina had wanted desperately go on a school trip to New York. Until I told her she'd have to improve her school grades, that is. Then she decided it was too much trouble.

“Do you want to go to New York City?” I asked Marina that night. “Kerri is getting married there.”

“Sure,” Marina said.

“Is there anywhere else you'd rather go?”

Marina smiled. I gotta brag, she has the prettiest smile. Calabasas, anyone? “No, Mom,” she said. “New York is good.”

“We can shop.”

“Really!” Now she was excited.

“We can go to a Broadway show. One with trumpets. And maybe . . . Kleinfeld's?”

Marina and I loved the television show
Say Yes to the Dress
: the bridezillas playing dress-up at the famous bridal shop Kleinfeld's, the fashion, the drama, the families coming together. I told her so many times: “Baby, we're going to Kleinfeld's for your wedding dress one day.”

And I always keep my promises.

At least the ones that mean something.

“Okay,” Marina said.

“Maybe you can try on a dress.”

“Mommmm! I'm only fourteen.”

The previous weekend, Marina had gone to an eighth-grade dance. Her first. For hours upon hours, she shopped for the dress, the earrings, the shoes, the right shade of foundation, and then a second trip for the right shade of lipstick. That's my girl!

She looked gorgeous, mature yet young. With her first pair of high heels on, she walked like a newborn pony, her legs too long for her body, unsteady. She was the vision of youth, that self-conscious smile.

She hadn't even started high school yet, and I was suggesting a wedding dress.

“Just for fun, Marina. Haven't you ever wanted to see that store?”

“I guess so.” She perked up. “And then we can shop.”

“Of course.”

I didn't tell her what I was thinking at that moment. That she was right on the cusp. That she could be anybody she wanted to be.

That I would not see the woman she became. I would not see her graduate, or listen to her senior concert. I would probably never meet her date to prom.

I didn't tell her how much I wanted this. To visit Kleinfeld's. To watch my daughter walk out of the dressing room in white silk and see her, suddenly, ten years in the future, in the back room before her wedding, in a moment I will never share.

No expectations, I told myself.

Don't make Marina's life about you.

In New York, I promised myself, we would do what came naturally. Marina would try on as many dresses as she wished, but only as many as she wished, even if that was none. I would not ask anything of her. I would not have expectations. I would not force my daughter to do anything she didn't want to do.

I realized long ago, when I was diagnosed, that I can't force anything. Get your Zen on, Susan. What will be will be.

We would not buy a dress. Some journalist wrote that later: that Marina and I were going to New York to buy a wedding dress.

That writer: what a man! No woman in her right mind would buy a wedding dress at least a decade before her marriage. No mother would force that on her daughter. Fashions morph. Times change.

I simply wanted to make a memory.

I wanted to see my beautiful daughter on her wedding day. I wanted to glimpse the woman she will be.

Maybe I would cry. Mothers cry, right? But I knew I would laugh, too. Because I would be with my Marina. I would be imagining her happy.

That's the memory I wanted to make.

When my only daughter thinks of me on her wedding day, as I hope she will, I want her to think of my smile when I say to her at Kleinfeld's, “You are beautiful, my child.”

“You are so cute, Mom,” Marina said, bringing me back to the moment. “We can totally go to Kleinfeld's.”

She took a strand of hair that had come out of my ponytail and tucked it behind my ear. Something I could no longer do, even when the hair tickled my nose.

She put her arm around me in a teenage almost-hug. I patted it with my curled fingers.

One moment, perfect like that.

She jumped up, that Marina smile on her face. “Can I have some money? Casey is going to get ice cream.”

“Sure, honey,” I said. “Get my wallet out of my purse.”

She did.

“New York,” I said, smiling as she slipped $20 into her back pocket. “Bring me the change, please.”

“Oh, Mom,” Marina said. “You are so cute.”

And she was gone.