Blood Matters

by Masha Gessen

  In the twentieth century, if one were to interpret the ban literally, one might have devised a testing program whereby all couples wishing to be married by a rabbi would have had to undergo genetic testing the same way some American states still require people to be tested for syphilis. Naturally, before a global solution like that could appear, less-observant Jews began to take advantage of prenatal testing. The incidence of Tay-Sachs began to decline after a biochemical test (not yet a DNA test) became available in the 1970s, but among observant Jews, virtually none of whom would consider a therapeutic abortion, nothing changed: With a carrier frequency of one in twenty-four Ashkenazi Jews, one in five hundred and seventy-six couples was statistically likely to consist of two carriers. With as many as twelve children in a family, three of these, statistically, would be affected. Kingsbrook Jewish Medical Center in Brooklyn maintained a sixteen-bed Tay-Sachs unit, and there was a waiting list. With most Tay-Sachs children not living past toddlerhood, that means that hundreds of couples were watching their apparently healthy babies suddenly become less responsive, turn into vegetables, and die.

  Rabbi Josef Ekstein had it happen to him four times. Three of his children died of Tay-Sachs while he was living in Argentina. He was so terrified of stigmatizing his six healthy children that, when his family moved to New York State in 1981, he tried to conceal his wife’s pregnancy in case this was another affected child. It was. Ekstein decided to pay a foster family to care for the boy, as is sometimes done among the Hasidim.

  Ekstein described the experience to a journalism graduate student twenty years later. He recalled going to visit the foster family. “The child was not kept clean. I saw the child was not taken care of properly. I saw the child had a rash and was not diapered. Then I thought, ‘Enough is enough. Everyone knows anyway.’ I had to bring him home.” All four of Ekstein’s affected children died between the ages of two and four.

  There is no grief more intractable than that of a parent who has lost a child. When the child’s death is preceded by months or years of exhausting caretaking, when there are healthy children competing for needed parental attention and time, when the wrenching experience is repeated four times over, the burden grows greater and greater still. Psychologists have identified various cognitive, spiritual, and “distractive” coping strategies that parents use to survive the loss. Some manage to see the value even in a short life deprived of experience and sensation. Some find support in a community of others who have faced the same sort of grief. Some—these are more often the fathers—create unrelated challenges to shift their thoughts from the child. It was Joseph Ekstein’s emphatic inability to cope with his sick and dying children that made him decide to go to war. He decided to eliminate the kind of misery with which he could find no peace. His initial suggestion was to create a straightforward premarital testing program in the Hasidic community to keep carriers from marrying each other. Rabbinical and community leaders rejected the idea: Such a program would stigmatize the carriers, they argued, causing more psychological and social harm to living young people than medical good for children yet unborn. “Those families that had the problems with Tay-Sachs, they were in tremendous fear that I am taking out the problem to the streets,” Ekstein told a television interviewer years later. “They were very, very nervous about it that it was going to damage them. Even my own wife was totally against the entire idea.”

  Rabbi Ekstein, then in his midthirties, was perhaps less equipped to devise a genetic-disease prevention program than most American Jews. The title “rabbi” in his case indicated only that he had completed a course of postsecondary religious education, not that he was a community leader. Indeed, he had always worked as a scribe—in Hebrew. Born in Hungary and educated in Argentina, Ekstein spoke little English. The Hasidim, who believe in preserving the shtetl way of life, generally communicate with one another in Yiddish. That would not do, however, for communicating with medical laboratories or reading papers on genetics. When it came to English, Ekstein could not even use a phone book: He did not know the order of the alphabet. But by all accounts, he was extraordinarily stubborn and persistent. He refused to talk to me; a younger colleague explained that journalists had often mangled the rabbi’s words, misrepresenting the program he founded. My own persistence, over months, failed to break through his defenses: The rabbi fed me vague promises and a fair amount of written information, but never met with me or allowed me to visit Dor Yeshorim, the program he ultimately founded.

  The convoluted design of the program follows an unfailing paternalistic logic: Knowledge is dispensed with extreme care, and only when absolutely necessary. Young women and men are tested while still in high school—private Jewish schools for the girls, or rabbinical seminaries if they are men. A Dor Yeshorim representative visits the school to talk about genetic diseases and pass out consent forms. On a designated day, most of the students—roughly 90 percent, by Dor Yeshorim’s estimate—come to school with consent forms signed by their parents and the $120 fee—not enough to cover the full cost of the test, but it helps to offset Dor Yeshorim’s costs on the one hand and, on the other, to communicate the message that the test is both worthy and important. In return, the students receive small cards with Dor Yeshorim’s phone number and the testee’s unique identifying number.

  The blood samples go out marked only with the identifying numbers, not with names. Each shipment includes blood samples intended for quality control—blood analyzed earlier by a different lab, to check that the results match. Results themselves are entered into the organization’s database twice, by two different people, again to ensure that no mistakes are made.

  The young people who are tested never see their results. Indeed, individual results are never dispensed. A couple must call with two Dor Yeshorim identification numbers and ask whether they are compatible. The call will be returned—an average of eight minutes later—to either of the home phone numbers the members of the potential couple put down when they took the test. If neither member of the couple is a carrier of any of the Ashkenazi diseases for which Dor Yeshorim tests, or if only one is a carrier, or if both are carriers but for different conditions—if there is no risk that their children will be affected with a hereditary recessive disorder—the voice on the phone will simply tell them they are “a match.” If both are carriers of a mutation for the same disorder, they will receive genetic counseling—over the phone. Frances Berkwitz, a genetic counselor who began work at Dor Yeshorim in 1983 at the age of sixty, will tell them that, should they get married, they would have a one-in-four chance of having a child with a severely debilitating or fatal disease. Berkwitz will never know to whom she is talking: She will never see the faces of the couple, and she will not hear their names.

  Dor Yeshorim, in other words, is designed to minimize knowledge. Dor Yeshorim staff know the test results but not the people whom they mark as carriers. Most of the carriers will never know their status: The chances of dating another carrier are never more than one in ten. “You don’t need counseling, we do the job for you,” Ekstein told the journalism graduate student. “You don’t get a letter, ‘You are a carrier and just do whatever you want.’ When you go out and explain to your potential suitor that you are a carrier for this and for that, it’s not easy.” Indeed, Dor Yeshorim saves both you and your potential partner from unnecessary knowledge. Only the unlucky few—statistically, one in a hundred couples—will learn of their results. But, unlike other recipients of bad genetic news, they are offered the opportunity not to struggle with a decision: In Dor Yeshorim’s framing, they will already have been deemed “incompatible.”

  Dor Yeshorim has no way of tracking how many of the roughly seven hundred couples they had, as of this writing, informed of their incompatibility actually broke up. By all indications, the vast majority do seek a different partner. For one thing, they tend to return to Dor Yeshorim with a request to check their number along with a new one. For another, the number of children born with Tay-Sachs in the Orthodox
community in North America has gone from an average of fifty to sixty a year in the 1980s to between four and six a year in the 2000s. Some of the couples may marry and then use preimplantation diagnosis—in vitro fertilization followed by the testing of embryos to weed out affected ones—but this would be prohibitively expensive for people. In any case, Kingsbrook closed its Tay-Sachs unit in the late 1990s.

  ***

  My sister is engaged! She’s the sister right above me...

  Ap’s, papers. Aaaaahhhhhh!...

  Dor Yeshorim. Let it be known that I am a huge scaredy cat. But I plan on improving. So I will not think about it, and look the other way, and hope for the best.

  Graduation...

  Senior Appreciation Dinner.

  Jewish teenagers’ blogs made it apparent that Dor Yeshorim had become an accepted rite of passage, as banal and momentous as high school graduation. Miriam could not quite recall when Dor Yeshorim became a fact of life. She and her husband had not been tested: The program was younger than her oldest child. In fact, she recalled, they and everyone else in their summer community had given money to Dor Yeshorim in the early days. And now she could not see any of her children marrying without checking “genetic compatibility,” in Dor Yeshorim’s language.

  Normally a budding couple in the Orthodox community would go on eight dates before becoming engaged (for the Hasidim, the average number of dates is more like two, and the dates are conversations in the girl’s parents’ home, while the Orthodox would likely go out to a lounge). So a courtship might last a month or so—and Dor Yeshorim would urge the young people to check their numbers against each other earlier rather than later, to avoid bitter disappointment. But Miriam’s eldest daughter was engaged to her husband within a week of meeting him.

  “It was a story for the books.” Miriam beamed. “It really was. He had dated for many years. He was dating for seven and a half years. He was very much sought after. He was driving to Baltimore to meet a girl, making like this huge effort—and nothing! He even went out with my daughter-in-law, my oldest son’s wife. It wasn’t what he was looking for.” Miriam’s husband had tried to help to find a match for this young man, who had no family in New York, but nothing worked—until he met Miriam’s daughter at a small recital in their apartment. “Somehow it was so natural and it was so obvious,” said Miriam.

  When did they check with Dor Yeshorim? Miriam called to the other room: “Nachum? When did you check with Dor Yeshorim? In your whole dating career? Tell Masha how it happened.” In the other room, a baby screeched and a man’s voice mumbled something unintelligible. Instead of Nachum, Miriam’s daughter, radiant and disheveled in the way of new mothers, emerged from the other room. “We went out on our fourth date,” she said, “and he asked me to marry him. But first he had to check with Dor Yeshorim the next day. So he didn’t really ask me fully, ‘Will you marry me?’ but the next day he found out in the morning and he sent me a text, he messaged me, and that night he asked me to marry him.

  “The first time he just like gave me a smile, and it was, like, understood. And the second time—” Mother and daughter laughed, and I never got to hear how precisely Nachum proposed, and what exactly he put in the text message that morning. It was all so well understood by everyone—it seemed it was fate. So, what if Dor Yeshorim had said, “No match”?

  “Then they would not have married,” said Miriam.

  “No question about it?” I asked.

  “No question about it,” she answered.

  Just then her daughter, who had been tending to the baby, came back into the dining room, where Miriam and I sat at a very long dining table, Miriam’s index cards spread out on the tablecloth before us. Miriam’s daughter said she knew a man who was about to get engaged to a young woman but got bad results from Dor Yeshorim and broke it off.

  “In Vienna,” the young woman continued, referring to the city where her husband, Nachum, had grown up, “there is this couple who never checked Dor Yeshorim. She is from Australia, and I don’t think they even knew about it.”

  “They just didn’t think about it,” added Nachum, a balding, flushed young man who had now joined the conversation, the screeching four-month-old baby in his arms.

  “They just didn’t think about it,” said his wife. “And they have a kid that has—what does he have?”

  “Tay-Sachs!” exclaimed Nachum.

  This was the best evidence I had seen of Dor Yeshorim’s success. The institution’s existence was now so much a given that people who did not use it were, in the new generation of Orthodox Jews, becoming the stuff of legend. And Tay-Sachs was clearly becoming an abstraction: a disease with a forgettable name, affecting faraway people.

  Miriam, meanwhile, was recalling a long-ago time, when she herself was looking for the perfect match. It was a long process, and she kept a meticulous record of it, two thick notebooks in which she noted down the details of every date. Her first one took place on February 16, 1975, and it was not good. “Uncle Lazar and Cousin Laishe suggested him,” Miriam read aloud to me. “An accountant... It was pouring out. Sunday afternoon. I was so nervous: my very first date. I wore Mommy’s blue dress with red trimming. Mommy wanted me to wear my good girdle. I just couldn’t. I wore Mommy’s good black boots.... Not too bad. Nicely dressed, not horrible-looking. We finally left. Went by train to Madison Square antique show. He just wanted to look at the Yiddishe things. Not my speed. He spoke badly of someone that I knew, which upset me. He never had heard of the Titanic, which to me was ridiculous. He bought me sheet music of Freylach. Came home by train, discussed uncomfortable seats in the old trains. Finally: home, sweet home.

  “Critique,” Miriam wrote at the end of the description. “Not for me. Too religious and narrow-minded. Uncultured, uneducated, not good-looking at all. Took me by train.”

  Miriam proceeded to meet about one new young man every month. Number thirty-nine came on December 22, 1977. “Shalom is in first-year medical school. If I had known, I never would have agreed to meet him: I’d never marry a medical student.” Miriam paused to explain that this was because medical students were never home. “But Uncle Leon didn’t even ask me: he just called one night and told me that this Shalom will call. And so he did. He called to speak to me and we had a very nice talk about thirty or forty minutes about euthanasia, abortion, etc.” Miriam laughed.

  It went downhill from there. “He is probably one of the ugliest boys I’ve ever met. He had this terrible case of acne. Emaciated, tall, extremely thin face, a mark on his nose from his glasses.” A painstaking description of a miserable date followed, in Miriam’s fine handwriting.

  In another year, Miriam finally went on a date that she rated “Terrific. A+.” Like all descriptions of love, the one that closed out her second yellowing and fraying notebook was predictable: “Really gorgeous, unusually handsome boy. Charming. The most charming boy I’ve ever met. Outgoing, friendly, talkative, and what a personality! I think he is perfect.” From all appearances, Miriam’s husband, who was baking chestnuts in the kitchen with the younger boys while we talked, was perfect.

  Miriam shut her notebook. “In those days, we didn’t do research,” she sighed. “See, look, ‘Uncle Leon called’—he called, that was it! It was much different then. No one did proper research. I would never do that to my girl. Today it would never happen like this. Never! Never! Thank God we have come a long way since then.”

  Here was the explanation of why Dor Yeshorim worked as well as it did. Matchmaking, in the Hasidic and Orthodox communities, was a science. Miriam’s index cards, and even her premarital notebooks, were simple databases (her daughters will surely use computers, quite possibly with custom matchmaking software, when it comes time to marry off their children), to which Dor Yeshorim had added just another field. In addition to information on family background, education, extent of religious observance, community activities, other interests, personality quirks, world outlook, appearance, and manner of dress, there was now genetic
health—a category that had in fact always been considered but that had now been refined and given its own procedure. This also explained why, though Dor Yeshorim quickly grew to serve the ultra-Orthodox and the Hasidim in North America, Britain, and Israel, it had the most difficult time reaching into the Modern Orthodox community.

  ***

  “I’ll wear a blue shirt, I’ll wear a white shirt, I’m not going to go to work in a T-shirt. I haven’t worn jeans since I was like ten or twelve years old.” Rabbi Howard Katzenstein was trying to explain Jews to me. We were sitting in his cramped office in Lower Manhattan, at the Orthodox Union, where Katzenstein was in charge of the kosher compliance program and also served as business manager. He had a bookcase stocked with cans of Pepsi, jars of canned goods, and various other packaged foodstuffs. This was the kosher hall of shame: items that were marked as kosher—either by accident or oversight or devious design—but were not. “When we have something that is potentially not kosher, I drop everything: It’s Priority One,” Katzenstein explained when he interrupted our interview to fire off an e-mail acknowledging that another kosher snafu had been resolved. Here was another reason Dor Yeshorim had worked: It worked in a community every one of whose members was committed to observing strict dietary limitations even in this overstuffed time in American history. This they did in the name of community and identity: Faith, after all, is a private affair in Judaism, while observing tradition is a community effort. Dor Yeshorim offered a new tradition, which, the rabbis confirmed, grew logically out of Jewish law, and the community absorbed it easily.