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Separation Anxiety

When I later learn that the Knitting Factory appearance was held at four o’clock on a Sunday afternoon and arranged by a producer doing a documentary on conjoined twins, my heart sinks. I feel worse when I discover that Chuck Harris, the agent whose name Reba had given me, has a thriving career representing, according to the L.A. Times, “freaks, geeks, and assorted other oddities.” But Harris, of all people, spins me around. He’s a true Hollywood character—voluble, funny, and irrepressibly enthusiastic about “the girls.” Yeah, Reba’s grandiose about her prospects, but who isn’t, he says. “I’ve got this guy—ears pointed, implanted whiskers, split lip, cat eyes, looks like a tiger,” Harris says. “He’s always complaining that I don’t get him enough work. He wants to do Shakespeare.” What Harris loves about the Schappells is how each of them is so implacably her own woman, he says, how excited they are about every bit of work they get. So, Reba’s living a little fantasy, a dream. “What I don’t do is stand in judgment of that,” Harris says. “I say, ‘Sweetie, you keep hoping. Ya never know.’ ”

These days, James Goodrich sees Carl and Clarence every month or so, when he goes out to Blythedale for the regular spina bifida clinic or for Aguirre-related media events. The twins’ days are long. Carl and Clarence spend their time going from physical therapy to occupational therapy to preschool—three hours in the morning, three more after lunch. The boys are night owls, and Arlene doesn’t have the heart to just turn out the light and close the door, so Carl and Clarence stay up till ten, eleven, even two in the morning, the singsong of Barney or Elmo or the Wiggles droning in the background.

Arlene doesn’t know when the family will be able to go home. Their departure date depends partly on the boys’ skull reconstructions and partly on when Blythedale thinks they’ll no longer need inpatient rehabilitation. When the boys do return to the Philippines, they’ll find a much-improved place to live. Embarrassed by the specter of the country’s tiniest celebrities returning to such backward surroundings, the owner of the land on which the Aguirres’ small village is located finally agreed to electrify it.

Carl and Clarence continue to improve physically—Clarence is on the cusp of giving up his toy grocery cart and walking unassisted, and Carl isn’t far behind. They’re still struggling to talk, though both boys are babbling more and using sign language. At the end of June, Clarence had what his speech therapist calls “a long-awaited language spurt.” He’s saying a few words, “Mama” and “Carl” among them.

Although Goodrich muses about the prospects for Carl and Clarence “to grow up and be just like any other kid on the block” and Staffenberg has explained many times how he preserved the boys’ hairlines so they’ll be “better off in school, with their friends,” the staff at Blythedale remain cautious about the boys’ prognosis. Blythedale neurologist Joelle Mast says, “Are they continuing to make progress? Yes. Will they be normal? I really don’t know.” The twins are testing at about only 16 months cognitively, though who knows if the surgery is the cause, she says. “Just by the nature of having your brain joined, you’re at the risk of development and learning disabilities.” Yet Mast also mentions two facts about the impact of the separation on Carl that Goodrich doesn’t tend to talk about: He had some weakness on his left side and suffered seizures (now controlled by medication)—both signs of neurologic dysfunction, however slight.

Goodrich, for his part, is unabashedly proud of the attention he and the hospital have received for the Aguirres. Citing what he calls the “twin-halo effect,” he says Montefiore’s occupancy is now at an all-time high, that the emergency room is the seventh busiest in the nation, that the boys have been a magnet for attracting high-caliber young doctors, and that the hospital has by now “more than made back” the money it laid out on the case. (Montefiore senior vice-president Steven Safyer dismisses the notion that the expense, which he puts at close to $3 million, has been recovered. “Where I put the return is in the pride of people here,” he says.)

Goodrich hasn’t experienced any financial windfall from the case—he’s paid a straight salary by Montefiore—but his professional profile has risen dramatically. He’s given 60 medical lectures already this year, where his annual total used to be about 25. His caseload is up by a third, his waiting list stretches to two months, and nearly every day he hears from a desperate parent of a deformed or neurologically impaired child seeking a second opinion, calling to see if Goodrich can make a miracle happen for them too.