Fear of Dying (21 page)

The palliative care team has sent a secret box we are not supposed to open till they arrive and a decongestant that makes her very sleepy.

She has an oxygen tank by her bedside, which Ariella, a beautiful Haitian with high cheekbones, uses intermittently. She has given her, at doctor's orders, minute doses of morphine by mouth to ease her pain.

Despite all this, Ariella says, “She's fighter. She could wake up at any moment.”

This time, I haven't wanted to tell my friends anything because she might well come to life again. And when I walk into her room, saying, “I'm here, I love you,” she turns her head and starts babbling nonsense syllables—trying to talk, but this time it's a full gurgle, spewing saliva.

She used to go
ay yi yi yi.
Now she sees my red-and-purple shirt and tries to react to the color with sound. My mother has totally given up control.

How do I know this when she can't speak? I know it because I know her and her love for bright colors. I must have worn this especially for her. Of course I did.

But Ariella lifts her in her electric bed and she gurgles madly, trying to smile at my shirt.

“You always loved red and purple!” I say. And the gurgles increase.

“She's answering you,” Ariella says, and I know this is true, but she is exhausted and sinks back down.

“This is my last job like this,” Ariella says. “It's too hard. All these years with your mother and watch her go down. It's too hard. But I am glad to know her. She was like my mother.” And Ariella begins to cry.

We think we know how death comes, having seen it before, but every death is as unique as every birth. There is no template that applies to everyone.

In the past I used to spend hours with my mother listening to her babbling nonsense. It was not easy. Now I began to understand that it was also a communication. “There is a language beyond language,” Rumi, the great Sufi sage, says.

“She's going downhill,” her Polish caregiver, Karolina, used to say.

“Every day she sleeps more. I tell you and your sisters the truth, the whole truth, and nothing but the truth. She's going downhill—like on a one-horse sleigh.”

I used to have long philosophical conversations with Karolina because I could no longer speak to my mother. Karolina had become her speaking voice. My mother wouldn't like the Polish accent but I know she'd like to have a
voice
. She was glad to use Karolina's voice—or now Ariella's.

“Ayyy yi yi yi” is pretty much all she could say then, and we had no idea why she said it. “Ayy yi yi yi yi,” she'd repeat.

“Why ayy yi yi?” Karolina would ask.

“Why ay yi yi?” I'd answer, knowing nothing.

I had never heard those sounds from her in the past.

And my mother could not answer. She, the queen of Scrabble games with the seven-letter words, she of the brilliant IQ, she of the famous Gertrude, the brilliantly reviewed Mother Courage, and the great Lady Macbeth. She of the portraits in oil, in watercolor, in conté crayon. She of the rare first editions. Now she has been reduced to
ayy yi yi.

“Ayy yi yi,” I echo. “Ayy yi yi.”

*   *   *

For most of my childhood, I believed my mother was right about everything. I echoed her tastes in theater, in art, in music, in books, in politics. Until the dread age of thirteen, I followed her lead in everything. And then I began to rebel—
ayy yi yi.

“Mother, I love you,” I'd say to the
ay yi yi
s.

Did a small curl in her wrinkled lip indicate the beginning of a smile? I couldn't tell. Within a minute or two she would seem to be sleeping again.

And now she sleeps, even more deeply. Is death like dreamless sleep or do images appear? And are they hellish or heavenly? As long as we are conscious, we can't imagine the extinction of consciousness. But seeing my mother's near extinction of consciousness, I begin to see the future. Maybe we are all too convinced of our individuality. Maybe the secret is to become part of the whole.

Can an infinite higher power keep all these individual minds whirring at once? How about the minds of all the people who have ever lived? Is it possible that they are somehow all here in the ether, taking up no space but influencing us? Do ideas remain? Do memories? This is the conundrum we all face.

Watching my mother's breath moving in and out of her withered body, I try to memorize her face, her breath, her history. I breathe with her. How long will I be able to breathe with her?

“She's definitely going downhill,” Ariella now says firmly. “Sometimes at night she calls out for your father.”

“What does she say?”

“She calls his name.”

“Does she ask him where he is?”

“No.” Ariella looks at me peculiarly.

“Well,
I
would like to know where he is and what he's thinking.”

She looks at me even more quizzically when I say this.

I think of my dream of my father in the snow and his anger at having to die. I remember one day about two decades ago when I called my parents one morning to check in and my mother said triumphantly, “We're still alive!” I remember the tone of amazement and victory. Then I got on with my father and he also crowed: “We're still alive!” And now he isn't and she is barely.

Will I ever get over my parents? Does anyone?

When I think of my parents crowing, “We're still alive!” I know they'll always be alive inside me.

I miss them.
Ayy yi yi
is no substitute.

*   *   *

I don't think I would like to end my days the way my mother is ending hers. But maybe she doesn't know she's ending her days.

How can I know how I'll feel till I get there?

There's the rub.

*   *   *

At home, Asher asks me how my mother is.

“Don't ask,” I say.

“That bad? I hope you don't say that about me.”

“But you're getting better.”

“Come here,” he says. I crawl into bed with him and hold him.

“I know how tough this has been for you—father, mother, me, Belinda. But I promise you I'm getting better and I will be here for you.”

When he sounds strong like this, all the phantoms vanish.

But what is love? Is it giving up control?

Okay, I know it can't alter when it alteration finds. And I know that Shakespeare grokked it in the sonnet. My generation used to say “grokked” back in the day (as our kids say).

Robert Heinlein was responsible, I guess. We all read and loved his
Stranger in a Strange Land
, and after that grokked everything.

*   *   *

Back to sex. Really, folks, the search for orgasm is pure hunger. You think of it when you haven't had it in a while. After a long time you forget, become light-headed. Sexual starvation is like other forms of hunger, but hunger is not love. Of course, infants love the one who feeds them and cuddles them. But we are not infants anymore—though many people never grow up. Grown-ups, however, few as we are, know that hunger isn't love—or do we? Cats may not know, though dogs do—but let's not get into the cat or dog thing.

*   *   *

Before I married Asher I was, as I told you, with a young actor who was eternally hard. But was that love? I doubt it. And I doubt that even his hardness is eternal. Even
he
may get older—if he doesn't wrap himself and his old jalopy around a tree before then.

Drugs were his thing—pot, coke, meth, you name it. Who knows if he's even alive, let alone erect? When I was with him, I thought his infallible hardness had something to do with my allure. It didn't. He could get hard for anyone who petted and fed him—men, women, animal companions.

Erection—how we all seek it! The hard cock standing up and validating our existence. Men think like this—straight men and gay men both. And women do too—at least when hunger drives us. But does this hardness have anything to do with our charm and sex appeal? Who can tell?

Nikos would fuck anything. He was from Queens but loved Joyce as if he were from Killarney. We did a workshop dramatization of the last chapter of
Ulysses
together:

I was a Flower of the mountain yes when I put the rose in my hair like the Andalusian girls used to … and how he kissed me under the Moorish wall and I thought well as well him as another and then I asked him with my eyes to ask again yes and then he asked me would I yes to say yes my mountain flower and first I put my arms around him yes and drew him down to me so he could feel my breasts all perfume yes and his heart was going like mad and yes I said yes I will Yes.

It's become something of an old chestnut—but it works like mad. Actresses love it. The flower in the hair and all.

Even the kids love it—for the sex, I suppose. Sex is universal—like hunger. We make so much of it when we're young. We make it mean so much more than it should.

Sex is about the next generation trying to arrive. It's not about transcendentalism or philosophy or anything beyond itself. And yet it is, too. If the gods thought it up, they were canny. It seems to mean
everything.

When I think of all the people I married for it, all the lovers I chased for it … But it's just the gods' way of bringing us together in rare intimacy. We give it much more power than it perhaps deserves.

But you only know that when it eases its iron grip on your life.

Darling Mother,

Please don't ever die. I know you are sleepy, spend most of your time dreaming—I wish I knew your dreams—and that you can no longer speak to me or hear me. And yet I want you to live forever because I am not ready to be without a mother. Is that the most selfish of wishes? You say it is. And yet you don't want to die either. You are holding on because you fear extinction—your absolute uniqueness being lost forever. I understand that. I don't want to lose your uniqueness either, but most of all, I don't want to lose mine.

My sister Antonia phones. “I can't do this again,” she explodes. “I need someone to take care of me! She lies there like a queen, but what about me! My kids don't care.”

I aim for calm. I want to be calm. I want her to be calm.

“You're doing fine. This has been a really long slog. Don't give up now.”

Am I saying this to her or to myself? Now, more than ever, I want peace with my sisters, no provocations, just acceptance of one another. Will we ever be able to find that?

Days go by. My mother is up and down and up and down. Sometimes I think she's dead. Sometimes I think she'll never die. Sometimes I think I am not alert enough to her new ways of communicating. When dementia has been with us a long time, the means of communicating change. Color wakes her, as does sound. Music delights her, though I think she doesn't hear. Chocolate slides on her tongue like love.

She sits up and tries to exclaim at the color of my shirt—red and purple with mossy green. An Etro confection she might have worn when she was young. Her taste in clothes was always over the top, ahead of her time, wildly artistic. But she can't speak. She croaks like a frog that might sit on a mossy green ledge, then dive swiftly into the water. She lifts her shoulders strongly, though by now she can't sit up. She exclaims without exclaiming. I know she is approving of my colorful colors—so like those she wore in her salad days. She has found a new sort of speech that is wordless. And then she begins to cough as if she will choke.

We are so unaware of different languages—not Latin and Greek, but the language of color, the language of food. We hardly know all the different kinds of human music. My mother could speak without speaking, laugh without laughing, sing without having a voice. The parents of special-needs kids know this and so do the children of the dying.

I sit by her side while she sleeps and wakes, wakes and sleeps. But one day her expression is black and blank. Something has changed. Antonia feels it and tells me she can't bear to come.

“So, don't come, I'm here,” I say.

“I've been there too much,” she says. “It's killing me. I'll die next. I'm dead already.”

“It's okay. Don't worry.”

“She can't take it,” Ariella whispers. “Leave her in peace.”

So I resist the temptation to call my other sister. I will stay here alone. If the hospice nurse needs to be called, we'll call her. If Mother seems to be in pain, we'll open the secret box we were told not to open. If, if, if. I can manage it. I can handle it. I'm a grown-up. I'm almost an orphan.

*   *   *

Her chest hardly moves. Her breathing is so light we cannot hear it. From time to time she labors to breathe and we give her decongestant. For the longest time, I wanted to be there when she passed from our planet to the moon, but now I see the passage may be imperceptible, unlike my father's. She doesn't want to stay here. She wants to join him—wherever he is. That must be love. She is dreaming of the moon.

We discuss the hospice drill, the hospice box with the doctor. We had accepted a sealed package but were told not to open it till the hospice nurse comes to the apartment.

“What's in the box?” I ask.

“The nurse will tell you when she comes,” the hospice service tells me on the phone.

Over the next several hours, she has her eyes open but sees nothing. Her eyes are blank, dead letters, staring into space. Perhaps she is already on the moon.

*   *   *

I go home for a few hours, but when the phone shrills at six
A.M.
, she is gone.

My sister Em and I meet in the morning darkness and go to her apartment. Toni has made it clear that she can't bear it.

“She must have passed in the wee small hours,” says Ariella, with bright drops falling from her round brown eyes. She is agitated.