Range - David Epstein Page 0,74

was one of Priscilla Lopes-Schliep, one of the best sprinters in Canadian history. At the 2008 Olympics in Beijing, she won a bronze medal in the 100-meter hurdles. The juxtaposition was breathtaking. Priscilla is midstride, ropes of muscle winding down her legs, veins bursting from her forearms. She’s like the vision of a superhero a second grader might draw. I could hardly have imagined two women who looked less likely to share a biological blueprint.

In online pictures of Priscilla, Jill recognized something in her own, vastly scrawnier physique—a familiar pattern of missing fat on her limbs. Her theory was that she and Priscilla have the same mutated gene, but because Priscilla doesn’t have muscular dystrophy, her body had found some way “to go around it,” as Jill put it, and was instead making gigantic muscles. If her theory was right, Jill hoped, scientists would want to study her and Priscilla to figure out how to help people with muscles like Jill have muscles a little more toward the Priscilla end of the human physique spectrum. She wanted my help convincing Priscilla to get a genetic test.

The idea that a part-time substitute teacher, wielding the cutting-edge medical instrument known as Google Images, would make a discovery about a pro athlete who is examined by doctors as part of her job struck me as somewhere between extremely unlikely and patently nuts. I consulted a Harvard geneticist. He was concerned. “Empowering a relationship between these two women could end badly,” he told me. “People go off the deep end when they are relating to celebrities they think they have a connection to.”

I hadn’t even considered that before; I certainly didn’t want to facilitate a stalker. It took time for Jill to convince me that because of her unique life experience, she could see what no specialist could.

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When Jill was four, a preschool teacher noticed her stumbling. Jill told her mother she was afraid of “witches’ fingers” that were grabbing her shins and tripping her. Her pediatrician sent the family to the Mayo Clinic.

Blood tests showed that Jill, her father, and her brother had higher than normal levels of creatine kinase, an enzyme that spills from damaged muscles. Doctors thought some sort of muscular dystrophy might run in the family, but it didn’t normally show up that way in little girls, and Jill’s brother and father seemed fine.

“They said our family was extremely unique,” Jill told me. “That’s good in one way because they’re being honest. But on the other hand, it was terrifying.”

Jill returned to Mayo every summer, and it was always the same. She had stopped falling, but by the time she was eight the fat on her limbs was vanishing. Other kids could wrap their fingers around her arm, and when veins started protruding from her legs, they asked her how it felt to be old. Jill’s mother was so worried about her daughter’s social life that she clandestinely paid another girl to hang out with her. At twelve, she began struggling to hold her body upright on her bicycle, and had to cling to the railing at a roller skating rink.

Jill began to hunt for answers, kid style. She checked out library books on poltergeists. “It really freaked out my dad,” she told me. “He was like, ‘Well, are you into the occult, or what?’ It was nothing of the sort.” She just could not explain what was happening to her, so when she read stories of people with inexplicable afflictions, “Ya know, I believed them.”

By the time she left for college, Jill was five foot three and eighty-seven pounds. She hit the library, poring over any scientific journal she could find on muscle disease.

She came upon a paper in Muscle and Nerve, on a rare type of muscular dystrophy called Emery-Dreifuss, and was startled by an accompanying photo. That’s my dad’s arm, she thought.

Her dad was thin but his forearm muscles were unusually well defined. Jill called it “Popeye arm” when she was little. Another paper describing Emery-Dreifuss patients actually referred to a Popeye arm deformity. The Muscle and Nerve paper reported that Emery-Dreifuss patients have “contractures” that affect joint mobility.

“I’m getting chills reading this,” Jill recalled. She described her own contractures as just like a Barbie doll: arms always bent, neck stiff, feet perma-slanted for high heels. The research indicated that Emery-Dreifuss only occurred in males, but Jill was certain she had it, and she was afraid. It comes with heart problems.

She stuffed