One and the Same (26 page)

Teplica's
Reunion
photo brings to mind the biblical twins Jacob and Esau and their reunion in Genesis after decades apart. When Jacob sees that Esau is arriving with an army, he assumes it's to exact revenge for his childhood theft of Esau's blessing from their father, Isaac. But Esau embraces and kisses his brother instead, and maybe even nibbles him. Los Angeles rabbi David Wolpe explains the nibbling: “In the Hebrew, there are these dots over the word
kissed
, and nobody knows exactly why they are there, but the rabbis suggest that Esau bit him, that he didn't just kiss him. He was aggressive.”

Not aggressive, maybe, but, rather, instinctively affectionate: the prenatal impulse of one twin to connect with the other after such a long time apart.

• •

When I interviewed Kollantai and Pector in Ghent, each emphasized how little emotional vocabulary exists in American society for handling twin loss. It struck me that the antithesis is the Yoruba tribe in southwestern Nigeria, which every twins expert knows well because the tribe has the highest rate of fraternal twin births in the world: forty in every thousand births, compared to twelve in a thousand in the United States. (There is no clear cause of the high twinning rate,
though many believe that the species of yam they eat has properties that enhance fertility.) Because there are so many twin births, and often twins are premature and underweight, there are inevitably frequent twin deaths; the Yoruba honor the dead twin with a statue called ibeji (“twins”), a carved wooden figure that the parents commission from a local artisan and which they honor and cherish, even going so far as to bathe, dress, and feed the statuette. The ibejis are not meant to be likenesses of the deceased newborns, but to represent their souls; the soul in the figurine is supposed to balance the soul of the living twin, which is considered in jeopardy.

“If one twin dies,” explains Nike S. Lawal, professor in Harvard's Department of African and African American Studies, “parents have to do something for the remaining twin, some ritual so the one who died won't try to take the other twin along.”

Every year, Yoruba mothers dance with their wooden twin effigies, singing songs they often write themselves. In an art book of ibeji photographs by George Chemeche, one of these songs is excerpted: “Twins-child, please do not leave me/Twins, please don't go away and leave me.”

Dr. Louis Keith says that he and Donald do think ahead to the time when one may lose the other. “Of course it won't be easy,” Louis says matter-of-factly. “I went to a funeral of a twin who was killed in a terrible accident. It was a Jewish funeral, and as they were getting ready to lower the body into the ground, the surviving twin started talking to his brother
through the wall of the coffin
. I was watching this very closely, because I knew I was able to see into it in a way that other people couldn't. I was thinking to myself, If my brother dies before me, I will only lose his physical body, because I will continue to talk to him. In the coffin, in the shower, wherever.”

Donald agrees: “Our conversation started a long time ago,” he says. “And it won't end when one of us is gone.”

• •

In June 2008, a cheeky, athletic twenty-year-old twin from Gloucester, England, named Emily Blunt learned she had a rare bone cancer. Her identical sister, Kath, did not. One month later, Emily was dead. When the press first published her grim diagnosis, her twin, Kath, was quoted as saying, “I just feel so guilty. … We have always fought each other's battles—but this is one fight I cannot win for her. It leaves me thinking, ‘Why did it happen to her and not me instead?'”

Why indeed?

One identical twin gets cancer and the other doesn't.

One gets Alzheimer's; the other doesn't.

One has schizophrenia; the other doesn't.

Same DNA. Different fates.

Twins provide the perfect storm to study disease because their identicalness highlights any difference. What “goes awry” in one case and not another?

Kathy Giusti, fifty when we speak, is an attractive Harvard Business School graduate with two school-age children. She used to be an executive at a pharmaceutical company, but now she is living with multiple myeloma, a rare blood cancer that afflicts fifty thousand Americans and which few survive. Her identical twin, Karen, a former attorney for
Time
magazine, doesn't have it. Since Kathy's diagnosis in 1996, she's become nationally renowned for creating a nonprofit organization that funds groundbreaking research. The Multiple Myeloma Foundation has raised $105 million and launched four FDA-approved drugs on the market in the last four years.

When I talk to Kathy on the phone, in July 2008, she has survived eleven years, despite being initially told she would die in three. “Telling my sister the diagnosis was devastating,” Kathy recalls. “I think when you grow up as a twin, you believe the twin will always be there for you. I had to explain that I wouldn't be. I had already researched the disease; everything about it was ‘incurable,' ‘fatal,' ‘only going to live two to three years.' By the time I made that phone call to Karen, I knew I was going to die. I said to her, ‘You know I'm usually a fighter, but there's no hope with this disease.' She refused to accept that. She was like a pit bull, calling everyone she knew, doctors, sending articles, helping me figure out what my next step should be.”

Karen not only used her contacts at Time Inc. to mount the first of many successful fund-raisers but she didn't hesitate to give Kathy her bone marrow for a transplant. They had to confirm they were identical—”We'd never known for sure,” Kathy says—in order to make sure they were a match. “That moment was a turning point for me,” Kathy tells me. “I thought, Okay, this is the most horrible thing that could have happened, but maybe there's hope.”

Hope was an understatement. The transplant put her into “complete response,” which means doctors can't find the cancer cells anymore.
That doesn't mean the cancer is gone. “I can relapse anytime,” Kathy explains. But for the time being, she's alive, feeling stronger, and thrilled to be able to watch her daughter's cheerleading squad and her son's all-star games. “With an incurable cancer, you always live your life on the edge,” she explains. “I know that whatever I'm seeing could be the last time I ever see it. So I'm just happy watching any moment that's important to my family. Do I think my son will get into another all-star league? Yes. Do I think it will happen again in my lifetime? No.”

Kathy Giusti has no resentment that she was the twin who got sick, but she is curious about the biological or genetic reasons for it. “There are times when I say to myself, Something else must have happened to me,” she says. “I do believe there are viruses—like mononucleosis—that happen to you along the way. Or I could have a weaker immune system. I tended to get sick more than Karen when we were kids.”

When Kathy was first trying to entice researchers to study her cancer, she leveraged her twinship, knowing that scientists hunger for cases where identical twins are discordant for a chronic disease. But some doctors, according to Kathy, were initially reluctant about exploiting the information Karen carries inside her. “The last thing anyone wants is to take a healthy twin and make her sick,” Kathy explains. She said that she and Karen had to convince researchers that they were not only willing to accept the risks but eager to do so. “It's one thing to create a foundation to fund the research,” Kathy says. “But we wanted to
be
the research. I think twins care so much about each other, they're willing to do anything.”

In 1997, Kathy moved to southern Connecticut to live near her sister, in large part because she wanted Karen close enough to help raise her two children, Nicole, then four, and David, then a year old. “If anything were to happen to me,” she says, “I knew she would be there to help my husband, Paul. Karen and Paul are the two rocks in my life. I've needed to be strong for my children and for the foundation,
but the people I can fall apart with are my sister and my husband. My sister is a great mom, and she has three phenomenal children, all incredibly close to my children.” She adds a thought that chokes me up: In thinking about her inevitable absence, she was comforted by the assurance that her kids, Nicole and David, would continue to know her through Karen. “Because she's so similar to me,” Kathy explains. “My kids see that Karen and I are different. But I always felt that if they wanted to know what their mom was like, they would know me by knowing her.”

Dr. Thomas Mack's life's work has been centered around these kinds of cases—where one twin is chronically sick and the other isn't. He says identical twins tell a story others can't because they start the same genetically and when one diverges, the cause can often be traced. A towering, burly lumberjack of a seventy-two-year-old, Mack is dressed in suspenders when I meet him in Los Angeles. He graduated from Columbia Medical School, worked in Pakistan for the Centers for Disease Control, became a professor of epidemiology at Harvard's School of Public Health, and now teaches preventive medicine at the Keck School and USC/Norris Comprehensive Cancer Center.

Mack gives the example of Hodgkin's disease, which he and his wife, Dr. Wendy Cozen, have studied for years. “Someone years ago suggested the hygiene hypothesis,” he tells me over a soda water in a loud Los Angeles restaurant, “which means the cleaner you are, the more you are at risk for certain diseases, including asthma and Hodgkin's.” So Cozen suggested they ask twins which of them put more dirt in their mouths. “And we also asked about every other difference like that, which we could pick up between them. And it turns out that those are, in fact, pretty substantial determinants.”

How can twins know who put more dirt in their mouths over a lifetime?

“Well, the nice thing about twins—are you a twin?”

I say yes.

“So if I asked you, ‘Who put her thumb in their mouth more often when you were kids, you or your sister?' you'd know.”

Robin did.

“See? We find that both identical twins agree as to which one did. So we tested that, decided it was a reliable determinant, and then looked at the one who did it more often.”

The one exposed to fewer germs was more likely to get Hodgkin's.

So the dirtier you've been, the better off you are?

“Right. Now we haven't published that yet, but the evidence was fairly strong.”

He found the same counterintuitive result with sun exposure and multiple sclerosis (MS): the more sun, the less chance of disease.

“If we're right that sunlight does, in fact, protect,” Mack says, “and I don't know if we are right, because we don't know the mechanism by which it would happen, but if we're right, then because we know that MS is, in fact, a strongly familial disease—in other words if you have it, your kid has a four or five times increased risk of having it—then I'm going to tell you, ‘Get your kid out in the sun.' Now I don't want to tell you to do that
too
much because I don't want you getting melanoma. But we know that the sun has both negative and positive aspects and you should get a little of the positive as well as the negative. Keeping that kid in the dark all the time is not a good idea.”

I would have assumed that the identical twins in his MS study would have had similar sun exposure in childhood and thus would not have been helpful to test the hypothesis that more ultraviolet light means less chance of having MS. “Obviously, we wouldn't have learned what we did if there hadn't been some twins who were in the sun differently,” Mack explains. “We only can use the twins when we're very sure there is a difference; one of them wanted to be on the beach all the time and the other one didn't want to. One of the other questions about MS when we started that study was, ‘Could it be
caused by a virus coming from dogs?' So we asked twins who slept with the dog the most. And we got very clear answers about that.”