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June 5, 2008

Losing Stephanie

creutzfeldt jakob disease

The Papoulis family at home in 2008: from left: Caryl, 15; Jim; Demitri, 7; and Claire, 12.

Photo Credit: Juliana Sohn

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Turned out the appalling practice of feeding diseased cows to other cows was not confined to the U.K. The United States — also home to cannibal cattle — was terrified of its own outbreak of mad cow and instituted a ban on the practice the following year. Would that step be enough to ward off a potential epidemic? Countless hypotheticals remain. Do any of the estimated 200,000 “downer” cows among the cattle population of 105 million have mad cow — the striking characteristic of which is an inability to stand up? And if so, how easy would it be for one to find its way into the food supply (particularly in light of this past February’s meat recall, the largest in history, after a meatpacker was found to have allowed sick animals into the U.S. food supply and 143 million pounds of beef had already been consumed)? Or rendered into chicken feed and fed to vast numbers of chickens — the excrement of which is then fed back to vast numbers of cows, infecting them? Another concern is the fact that in humans, CJD, which mimics so many other diseases in its early stages, may be underdiagnosed or misdiagnosed. A Yale study in 1989 autopsied the brains of people who had been diagnosed with Alzheimer’s disease and found that 13 percent actually had CJD. If 4.5 million people are diagnosed with Alzheimer’s each year, that could translate to nearly 600,000 people dying, unknowingly, of CJD, instead of the one-in-a-million statistic the government puts out.

Compounding the mystery, it seems each new scientific finding upends what little is known of CJD. In a 2002 lab study, some mice injected with the BSE infectious agent developed the symptoms associated with vCJD, while others showed symptoms of classic CJD. The conclusion is that it could be possible for some patients with what seems to be classic CJD to have actually been infected with mad cow. “Now people are beginning to realize that because something looks like CJD, they can’t necessarily conclude that it’s not linked to [mad-cow disease],” Dr. Laura Manuelidis, a researcher on the Yale Alzheimer’s study, has said.

Most troubling of all is the theory that perhaps vast numbers of Americans may be silently incubating CJD and vCJD right now. Scientists believe that the incubation period — the time from infection to the manifestation of symptoms — could be decades, maybe as long as 50 years. Which is to say: Could Stephanie, who had been a vegetarian for 20 years, simply start yelling at her kids and forgetting how to spell because of contaminated meat she’d eaten 30 years before?

“I think that we’re on the tip of the iceberg for this disease,” says Howard Lyman, the former cattle rancher who introduced Americans to the concept of cattle cannibalism on Oprah, and then was promptly sued, along with Oprah, by a group of Texas cattlemen. “We’ll look back 10 or 15 years from now and say, ‘Oh, my God, why couldn’t we see that disaster coming?’”

CJD of the bad-luck variety is what the doctors tell Stephanie’s family she has. “We have a diagnosis but can’t explain why she got it,” they say. “We honestly don’t know.”

In the end, it doesn’t really matter. The question is purely academic. Stephanie will die. Quickly.

You should remove her feeding tube, the doctors tell Jim as he moves Stephanie to a hospice. “What the fuck,” he says. “I’m supposed to starve my wife?” They explain to him that there will come a point when her brain no longer tells her body to digest food, and she will choke to death. And, anyway, the doctors say, she probably will not live through the night. But she does.

Andrea and Jim alternate nights, pushing the spare bed next to Stephanie’s and holding her hand as they sleep. They read her her old favorites, The Velveteen Rabbit and The Giving Tree. Friends visit and tell Stephanie’s mother, Pat, stories about her.

As the days bleed into weeks, Stephanie wastes away in front of their eyes. It’s a hellish limbo; everyone’s life is on hold. Jim cancels the family’s annual month-long trip to the beach house in Maine, the first summer he has missed in 35 years. His oldest daughter, Caryl, a star volleyball player, refuses to attend the sports camp at Dartmouth she had been so looking forward to. Instead, she goes to the hospice and hovers in the visitors room. She wants to remain physically close to her mother but not look at her, because looking at her makes her burst into tears. And so Caryl is the first to say her good-byes in mid-August, followed by Claire, the middle child, who plays the violin by Stephanie’s bed. Demitri, just 6 years old, does not really understand what is going on. He thinks maybe Mommy’s having a baby and that’s why she’s in a hospital.

How do you mourn the living? Stephanie’s mother perches next to her daughter’s bed and waits for a miracle, telling Father Joe as he makes his rounds to leave Stephanie be, she is not ready yet. Jim and Andrea try to be realistic. “The percentage of people who have survived with this disease is zero,” Jim says. “So you can’t really argue with that.” Trying to prepare for the grief that lies ahead, they read books — Deepak Chopra for Andrea and a Buddhist book called Grieving Mindfully for Jim. They think about eulogies and funeral services. Life is lived in three-hour increments. Dinner is never planned.

It’s September 21, Caryl’s 15th birthday, and for the first time in months, she is actually looking forward to something.

She was a little reluctant to have a party at first — how can you even smile when your mother is dying? — but her family convinced her that her mother would want her to celebrate. Stephanie is crazy for birthdays. And so — even though she had been doubting the very existence of God since her confirmation in May, right when her mother got sick - Caryl prayed all last night that her mother would not die today.

Andrea runs with a pink theme — Stephanie’s favorite color — and pulls out rosy-hued bowls and tablecloths and candles left over from Stephanie’s infamous birthday bashes. She unloads the overflowing bags of food. Normally the sous-chef, Andrea attempts to make Stephanie’s specialty, the one she reserves for special occasions — pumpkin tortellini with garlic and pine nuts — all on her own.

At 2:22, the phone rings. It’s her mother. Stephanie is dead.

Caryl bounces into the brownstone five minutes later, her cheeks still flushed with excitement from her volleyball tournament. Jim tells her that her mother just passed, and Caryl flees downstairs to her room. The celebration, she says, is off.

As soon as Demitri hears the news, he wails, his little-boy screams so heartbreakingly loud that Jim takes him outside, away from the girls, trying to contain him. And suddenly, after about five minutes, he stops crying completely. Lifting his head, he looks into his father’s eyes. “Well, I have to go get ready for my sister’s 15th birthday now,” he says. “It’s Caryl’s birthday today, and we have to help her.” Demitri walks back into the kitchen and hangs pink decorations with his aunt until, eventually, Caryl returns upstairs as guests arrive with beautifully wrapped gifts. As Caryl opens them, Stephanie’s friends try to make jokes: You should steal her birthday. You don’t have to keep this one; pick another day.

“It was almost as though it was orchestrated,” Andrea says of Stephanie’s dying on Caryl’s birthday. “Maybe Stephanie knew that this was the only way we could handle it — all being together.” Stephanie’s Catholic mother takes a more religious view. “Stephanie tried so hard to be there,” she says. “I hope I can tell Caryl sometime that your mom loved you so much that she left on your birthday, because she was going to be born again in another place, in heaven.”

Inside the ballroom at New York’s Grand Hyatt, people laugh and eat and hug as they flit from the cookie-decorating table to the brunch line, pause by the face painter and the magician, then make their way over to the mountain of gifts waiting to be wrapped. Hundreds of guests bundle Leapsters and Candylands into shiny sheets of paper as Jim conducts a children’s choir and plays the piano while a booming baritone belts out “Where Are My Angels,” the first song Jim wrote after Stephanie died, two-and-a-half months ago.

This party, the eighth annual gift-drive brunch for the Foundation for Small Voices, was Stephanie’s pet project. But Jim can’t let it go. After she died, he found a file on her computer meticulously outlining every detail for organizing it, as well as a five-year plan for the foundation, written right before she got sick. For Jim, these future plans feel like Stephanie’s legacy, and so, he says, “We’re trying to live it all out.” He doesn’t know what else to do. Stephanie was the planner.

“I haven’t really been taking care of myself, taking care of my own needs, psychologically and whatever,” he admits the day before, sitting in his cluttered basement music studio. Losing himself in work — so far that’s how he’s managed to not think about Stephanie’s clothes hanging there in the closet. But he knows it’s time to somehow trudge forward, into the unknown. “I’m sort of trying to find my way now,” he says. “I don’t know what I’m going to do about changing my life as a father. I don’t know what is the right way to be,” he says of trying to meet the needs of all of his children by himself. “I’m trying to figure out how much freedom to give my daughter to get really mad about things and be really bitchy and talk back to me. I want to give her a free card to do that, in a way, because she needs to let some of that out, but I don’t know when it crosses into being a 15-year-old who needs to be disciplined. What is mourning? What is her just being 15?”

And so he does the best he can. He lights a candle with Demitri every night so that his son can talk to his mother. One of those nights, he told Demitri that some Native Americans think that when a person dies, they come back to earth as an animal. “What kind of animal would your mother be?” he asked Demitri. “What’s an animal that can do everything really well?” Demitri responded.

And so now Jim will try to do everything really well. Stephanie and Demitri had such a special bond, he says, that he understands why his son needs to curl up in his arms in bed every night. Jim throws the warm blanket over them both, trying to be the safe haven that Demitri needs, the part of the world that makes sense.

Just as Jim says this, Demitri runs into the studio, crying over some young-child slight. Throwing his little arms around his father’s neck, he finds comfort, reaching under Jim’s Star Wars T-shirt and slipping his finger into his father’s belly button.

For more information about Stephanie Martini’s charity and to donate, go to foundationforsmallvoices.org.

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