Painting is her refuge — the one place in her life that tau has not infiltrated. She works with a private instructor at an art studio and tries to get there twice a week. "The reason I love art is if you're really painting you are not thinking about this," she says, nodding at an example of brain portraiture. "You have to completely spiral your brain in a different direction. Once you get into that zone, you're resting your brain. I still struggle with this work being very analytical and art being very non-analytical. So to put the two together is a real brain cramp."
She says her house and garden are a wreck. She's embarrassed to have people over. Nowinski sees the toll elsewhere. "She covers it up incredibly well in public," he says. "But there's times she talks about how this research is slowly killing her."
In October 2011, McKee and Kevin Turner were honored at the fourth annual SLI Impact Awards dinner in Boston for their work on behalf of brain-trauma awareness. Turner, a college star for the Crimson Tide and fullback for the Patriots and Eagles, was embarrassed to share the award with her. "What did I do?" he says. "I just got diagnosed with ALS."
Turner, the subject of a new documentary, American Man, was diagnosed with amyotrophic lateral sclerosis — Lou Gehrig's disease — in May 2010. Two months later, McKee published a study linking traumatic brain injury with an ALS-type disease, which she has subsequently documented in 11 athletes, amateur and professional.
Turner was among 40 to 50 athletes at the banquet who had promised their brains to McKee. But unlike most of them, he is unlikely to survive her tenure at the Brain Bank. As he accepted a hug and a plaque, he knew that the woman with whom he shared the podium and an embrace will someday receive a Styrofoam box containing his brain and spinal cord. "I want her to use it all," he says.
The guests included family members of traumatic brain injury victims — Perfetto, McHale, and Mackey among them — and athletes of every age and pursuit. "Most were men, and they wanted to meet her because to them, she's a rock star," Nowinski says. "She's the person they're trusting their legacy to. They trust her to take care of their brain and how they're remembered. So I had everybody line up in a receiving line as she went up to the podium to accept the award. Everybody cried. Everybody got a hug."
I reached Kevin Turner in his pickup truck at a fast-food drive-in in Birmingham, Alabama. He was grabbing a sandwich en route to his younger son's basketball game. He pulled his boys out of football after listening to Cantu explain the vulnerability of the brain between ages 6 and 14, which made him less popular than he once was in Birmingham. He will allow his older son, Nolan, to return to the field this fall for freshman year in high school once he turns 15. "My youngest, he's 8," he says. "He doesn't know it yet, [but] he's going to take a break until high school."
By the time I caught up with Turner again six months later, Cole had turned 9 and was complaining bitterly about playing flag football instead of "real football." Things had gotten harder for his father too. He can no longer zip his pants or get himself a glass of water or reach into his pocket for his wallet. (He carries a bag now.) His sons know where he keeps the credit cards. They pump the gas and help change the gearshift when dad is driving, as he was when I reached him again.
He pulled over so we could talk, and a police officer stopped to make sure he was OK. Turner told him he was fine. "I can still breathe, so I can't complain," he says.
He still lives alone but is looking to hire someone to be his hands. He can't rely on his daughter and sons anymore. He doesn't go out to eat much. It's hard to get a fork in his mouth, to get to the bathroom in time, to change the channel on the remote, to answer the telephone. A lot of calls go unanswered.
In June, talking was a problem. It's better now. "One day it felt like there was something in my mouth. I was trying to spit it out," he says. "It felt like I had just come out of the dentist. I couldn't feel my lips."
Turner told me in February that he hoped to visit McKee's lab to see where the work is done. He wondered "what they'll be saying when they're digging into my head — 'here's one of his dumb jokes. We need to take that part out.'"
He also said he was worried that knowing him will make McKee's job more difficult. He wants to have a conversation with her, perhaps in September when he is scheduled to attend a conference in Boston on traumatic brain injury and ALS. "I think I know what I'm going to say," Turner told me. "I'd hope I'd say, 'I'm so happy it's in your hands. I want you to be smiling and thinking about how much fun I had my whole life.' I don't want her to have a bad day at the office."