Tuesday, November 30, 2010

Making Sense of Death

I don't think Nicky understand's death, I think he understands "gone".  His dad is alive, but he has not seen him for over 3 years and every week he says "No Dad. No Papa. No Father. One Mom. One Nicky".  The Polar Bear died 6 years ago and Nicky often says in a sad voice with a sad look on his face  "Polar Bear died, no Polar Bear". His Dad isn't dead, but he never see's him, the Polar Bear at the Zoo is dead, and he never see's him. So to Nicky I imagine they are both the same, they have the same end result. They are not here for him to see.  But I know the time will come when friends and family will pass away and I Nicky will miss them just like we all will, and I've wondered how I would handle it.  I read "Wrestling with Angels" today a mom's story and thought it was well worth passing along.

by Liane Kupferberg Carter
“Do you miss your parents?” my 18-year-old son Mickey asked me last week.
“Yes,” I said.  “Every day.”
“Me too,” he said, and sighed.

His grandfather died three years ago.  In the past few years we have lost most of our elderly relatives, and Mickey asks about them too.  “Does Aunt Tessie  still love me?”  he will ask.  Like many children with autism, he is very literal.
We were supposed to have Sunday brunch with my father the day in July he died. Driving out to Long Island that morning, I telephoned repeatedly to say we were on our way, only to hear the answering machine pick up again and again.  By the time we tore into the parking lot I was frantic.  “You stay in the car with Mickey,” Marc said, racing into the lobby.  Minutes later, he reappeared and motioned me out of the car. “I called 911,” he told me, wrapping his arms around me as I struggled to stifle my cries.  Mickey flew from the car.
“Grandpa is dead?” he said.
We could hear the rising wail of sirens, saw a stroboscope of flashing red lights as cars and cruisers careened into the courtyard.  I drew Mickey tight and covered his ears.
Two days later, I clutched hands with Marc and my older son Jonathan as we buried my father.  Mickey was home with Milagros, the sitter who has loved and cared for him since he was an infant.  He had already seen too much. Friends and family followed us home for the ritual lunch. Baskets of bagels, bowls of hard-boiled eggs. Round objects, to symbolize the eternal circle of life. Mickey wandered solemnly from room to room, stopping in front of a group eating at the kitchen table.
“Are you here because you’re sad about my grandpa?” he asked.
Months later, as I  stowed away Mickey’s summer clothes, I noticed that he had taken all his photos of his grandfather and put them in the closet, facing the back wall. I returned them to his book shelf. A day later, they were back in his closet.  I asked him why he had put them there.
“No no no. No talking,” he said.
I understood. It is all I can do, some days, to look at those pictures myself.
“Do people come back from heaven?” he asks repeatedly. Over and over, I tell him no.
“Do they come back from shopping?”
I say yes, of course.
“What about James’ parents?” he asks.
I know who he means. He’s talking about the book James and the Giant Peach.  On the first page, James’ parents go shopping in London, where they are eaten by an angry rhino, and James has to go live with his wicked aunts.  Is this why Mickey often waits up late at night when we go to dinner and a movie?
Sometimes he’ll look up at the sky and ask if Grandpa is up there.
“I don’t want him to be dead,” he’ll say. “Make him come back.”
“He can’t come back,” I say.
“But I want him to!” he cries.
Other times he asks for concrete details: “Who buried him? Is it with sand or dirt?”
He plays Nintendo games endlessly, watching characters who “die”, only to be reborn in the next game level.  A high-tech version of Wile E. Coyote and Road Runner, forever chasing each other through an undulating landscape of cliffs and chasms.   Or he pores over my wedding album. The married pictures, he calls them. Pointing out all the relatives who’ve died, asking me to name them.  Inexplicably, he finds the name “Bernie” hilarious, repeating it to himself again and again for days.  When we drive by a cemetery, he will ask, “is that a cemetery?  Are strangers buried there?”  I think of Elizabeth Kubler-Ross’s Five Stages of Grief. They’re not unlike the stages you go through when your child is diagnosed with autism.  I’ve learned that grieving isn’t linear; I cycle through each stage again and again.  Just as Mickey is doing.  How can I explain death to him? I can’t explain it to myself. Often I wake in the dead of night, awash in a wave of nausea. How will he cope with my death? Who will love him when I am gone?
Mickey writes stories. He began doing this a few months before his grandfather died, when we took my increasingly frail father out to eat at Bruce’s Deli.  Waiting for food, Mickey busied himself by writing stories about his grandpa on the back of a paper place mat, filling every available bit of white space with inky words.  Now he writes stories whenever we go out to eat.  The stories are all the same.  Always about someone who has died.  In each one, a zoo animal escapes, invades that relative’s home and makes a big mess.  The animal breaks the computer, the dishwasher and TV. It eats everything in sight. Every story has a title: “Aunt Tessie and the Bison.” “Aunt Harriet and the Panther.” “Grandma and the Warthog.”  The stories don’t vary much. The syntax is off. He will only write them on a piece of paper torn from a small spiral notebook in my purse. And yet, these stories are powerful, filled with action and anger.  Most of them end along the lines of, “Aunt Tessie yelled get out you ugly mean bison. But that bison didn’t listen. That bison at Aunt Tessie’s house forever. The End.”  Sometimes he resolves them with: “Uncle Jack has to call 911.  The police arrest the monkey to put the monkey to jail. The End.”
A year later, when we hold the unveiling, the Jewish tradition of honoring the deceased with a marker or headstone, we take Mickey with us to the cemetery, thinking that seeing the grave may answer some of his questions.  Surprisingly, he walks through the group of gathered relatives, shaking hands, happily greeting people by name. As social as a politician working a crowd.  Standing front and center by the grave, he eyes the unfamiliar rabbi. “Hi, I’m Mickey. Who are you? Are you helping us pray?”
We are driving home after getting Mickey a flu shot when he asks suddenly, “Who buried Martin Luther King?”
I say, the people who work in the cemetery.
“Can God make people alive again?”
I say no.
“But he has to!” Mickey says, now angry.
“People’s bodies die. But we still love them, and think about them, and talk about them. Our thoughts and feelings about them will always be in our heads and hearts,” I say.
“My family is in my heart?” he says.
He thinks a moment. “Are they buried in my stomach?” he asks.
He stacks his stories in a cubby hole in his desk. “Sit with me, Mom,” he says one afternoon, and I perch on the bed beside him.  He wants to nap, so I cover him with a quilt. “Mom,” he says. “You’re being like a flight attendant.”
I smile.  “I’m right here,” I say.
“Mom?”  he says.  “When are my cats going to die?”
“Not for a very long time,” I say.
Then one day, at City Limits Diner, he looks up from the story he is writing and says, “Are people in stories alive?”
“Not exactly,” I say. “People who have died stay dead.  But it’s very good to write about them.”
“Will they come back?”
“No,” I say.
And then he smiles radiantly. “But they’re alive in my stories!” he says.
“Yes,” I say, and give him a hug. “Yes.  Absolutely.  They are.”

1 comment:

  1. Very powerful stuff. Thank you for sharing...as these kids are so visual, death is hard for them to "imagine" and grasp. Drawing & writing help. Other than that, it is a concept that is not helped by the resurrection of cartoon characters after they are blown to bits, or Halloween imagery. These only confuse most ASD kids by trivializing death and making it even more muddled than it already is. I think Liane Kupferberg Carter did an amazing job at helping Mickey get a handle on death...for now.