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Re: The Woman Who Would Save Football
Staging is determined by the amount and distribution of tau. In Grade 1, a few hot spots appear on the surface, clustered around small blood vessels. "You see those holes on the side walls, the holes and tangles in a circle around the hole?" she says, pointing to Owen Thomas's damaged brain tissue. "That's a 21-year-old brain!"
The blood vessels vex her and perplex her. "Why the blood vessels?" she says, tracing a painterly splatter on his brain with her forefinger. "What am I missing?"
She was talking to the disease, not to me.
In Grade 2, the spots multiply but most brain tissue is undisturbed. Thomas had Grade 2 of the disease when he committed suicide; the 18-year-old had Grade 1.
In Grade 3, the neurofibulary tangles she likens to skeins of unraveling yarn invade multiple lobes of the brain. Besieged, the medial temporal lobe atrophies. The hippocampus, essential for learning and memory, is attacked. The amygdala, which governs aggressiveness and rage, is assaulted. Symptoms multiply and intensify: headaches, depression, insomnia, anxiety; loss of impulse control, executive function, and emotional regulation; tremors, vertigo, slurred speech and a staggered gait; and finally dementia.
A slide of Dave Duerson's tissue demonstrates the awfulness of Grade 3 CTE. Under the microscope his brain tissue looks like the bark of a tree. "You see all those little spots of damage?" McKee says. "And he doesn't even have the worst case of this. This is really substantial disease, especially since he's only 50."4
Women lose lovers, friends, husbands, partners. Men lose their way, their memories, their lives. Ministers forget verses from the Bible. Hall of Famers fail to recognize themselves on trading cards. Outpatients get lost en route to the doctor.
Women lose lovers, friends, husbands, partners. Men lose their way, their memories, their lives. Ministers forget verses from the Bible. Hall of Famers fail to recognize themselves on trading cards. Outpatients get lost en route to the doctor. "A lot of ex-wives step in to help their ex-husbands," says Culverhouse, who created the Players' Outreach Program in Tampa Bay to provide health care and disability benefits for former players. She has an Ed.D. from Columbia University, a terminal illness, and a history of concussions from falling off too many horses. (She, too, has promised her brain to McKee.) Her clinic schedules appointments on Saturdays so players aren't recognized. "One of the ex-wives set the GPS so her former husband could get to our medical center," she says. Hours after his appointment, one of the nurses found him driving around the parking lot in circles. "No one had reset the GPS."
With each new report about reckless, homeless, abusive players, drug addiction and suicide, McKee wonders: How much is attributable to brain disease and how much to the corrosive effect of celebrity and entitlement on a particular personality structure?
"There are horrible life changes in terms of memory, emotion, and lack of impulse control, which heaps gobs of negativity on them, divorce, addiction, businesses that fail," Cantu says. "It's a vicious cycle, a perfect storm. The final event for those that die young is not the brain damage per se but what the brain damage has led them to do, which is what caused Dave Duerson to put a gun to his chest."
Duerson's last conscious act was to preserve his brain for science. That choice, Cantu says, also guaranteed a very painful death.
The most affecting of McKee's visual aids is a triptych she created documenting the progression of the disease. When she paints, she prefers oils, figurative painting. This digital portrait is deconstructed 21st-century abstract art.
The first panel, a slice of healthy brain tissue, reminds me of one in a series of Sam Francis paintings called "Blue Balls" but rendered in purples and whites. The second panel, a section of John Grimsley's brain, looks like a Jackson Pollock — Shimmering Substance, perhaps. The last panel from the boxer, who was her patient zero, calls to mind Willem de Kooning's Excavation.
The images have entered the public domain and the collective sporting unconscious thanks to permissions granted by family members. Still, Virginia Grimsley had the wind knocked out of her one day a year or so after her husband's death when she saw one of McKee's brain images flash across the TV screen: John's brain. She reminded herself — "It's good. It's all good. It has to come out."
Then she left a message for Nowinski. "You might want to warn the families."
Nowinski had hand-delivered John's slides to Houston in advance of the Family Conference, a conference call with family members during which she and Stern present their findings. Grimsley doesn't remember much from that time. Her synapses were snapped when her 45-year-old husband, a lifelong hunter, accidentally killed himself while cleaning a new gun. She now believes that he forgot that there were bullets in the chamber. She asked her boss, a pediatrician, to be on the call when she got the results from Stern and McKee. But it turned out Grimsley didn't need a translator because, she says, McKee is "so plain-English."
For McKee, the Family Conference is her first chance to fill the holes in the lives she sees under the microscope. For the wives, mothers, and daughters she calls "the crusaders," it is an opportunity to reclaim their loved ones from memories and reputations ravaged by disease.
"They're the only witnesses, which is also what intrigues Ann," Nowinski says. "The worst things are only seen by one person, and these stories never would see the light of day without them."
This is when she feels most like a clinician. "I'm being a doctor to people, but now the people are the families they've left behind."
She is asked "a million questions," Nowinski says, and stays on the line as long as there are answers she can give. "She allowed me to talk," Grimsley says simply. "I think she got a sense of who John was. This is not just brain tissue to her. This is someone's life, someone's memory, someone's husband, someone's son, someone's father."
After two and a half hours, Grimsley finally had a way to understand how a man who made his living as an outdoor guide ending up shooting himself to death. For the first time since his death in February 2008, she could exhale.
Tom McHale's slides arrived by mail at his widow's home along with a caution from McKee: "You might want to wait to open them until we are on the phone together."
Lisa McHale couldn't wait.
The impact was concussive. Her body shook. Her mind went blank.
McHale, who now works as a liaison between families and SLI, had been so sure they wouldn't find anything; so positive he had never suffered a concussion during nine years as an NFL offensive lineman. But doctors at the drug rehab center where he was treated for repeated relapse, depression, and irritability had no answers for them. "You seem to have embraced all that we have," a doctor told Lisa and Tom days before his death. "I've treated professional athletes before and I've had a similar problem, and I don't know what the problem is. Maybe it's the humility thing. Maybe you just can't reach that level of humility."
Lisa thought: You don't know my husband at all.
But she was no longer sure she ever knew him. Where was the sweet boy she met in college at Cornell? Who was this addict who used drugs with their three children in the house? Who succumbed to the overdose that killed him after Lisa told him he had to leave? Maybe I just remember Tom wrong, she thought. Maybe I glamorized him — because nobody's that good, and nobody changes that much.
After McKee presented her findings, McHale told her: "You gave me back my Prince Charming."
Sylvia Mackey heard from McKee and Stern two weeks before the Super Bowl in February, seven months after the death of her husband, John, the Hall of Fame tight end, no. 88 for the Baltimore Colts. She was the moving force in the creation of Plan 88, which pays $88,000 a year toward the care of players with dementia, and she is still fighting for the benefits she and other widows are due. She wasn't apprehensive about receiving McKee's report — she was relieved that the results confirmed what she already knew inside. Her 45-year-old son cried.
She says the diagnosis of CTE and frontal temporal dementia explained John's fixation with what she calls his "man bag," a black leather shoulder bag he took everywhere, including to Bobby Mitchell's charity golf tournament in Washington, D.C. "You couldn't touch it," she says. "At a photo session, a lady reached for it and he pushed her back and cursed at her. It was the last time he was invited."
The bag contained the Sharpies he used to sign his autograph: John Mackey, no. 88. The prosaic tools of the celebrity trade were a reminder of who he had been. "We had to send that bag to the assisted living facility," she says. "Finally he forgot about it."
By then he couldn't remember anything at all.
On June 18, Eleanor Perfetto called Nowinski to make arrangements for her husband's brain to be delivered into McKee's care. Ralph Wenzel, who was 69, had been institutionalized since early 2007. Perfetto had long considered herself a widow.
Ralph disappeared little by little after being diagnosed with dementia in 1999. "One morning he got up and went into the bathroom before I could get him dressed," she says. "He came back and said, 'I need to get dressed. There are people in the bathroom.'"
Perhaps he was confused by his own nakedness. The doctors weren't sure.
By Christmas of 2006, belligerence had supplanted hallucination and delusion. He went to live in a lockdown facility. A month later, Perfetto and Wenzel gave an interview to Bernard Goldberg of HBO's Real Sports, though she did all the talking. By then, Wenzel, a high school physical education teacher in his second career, could barely speak. "He hadn't spoken the whole day," Perfetto says. "They probably filmed him six or seven hours. They were hauling the equipment out of the facility. He walked up to Bernie like he wanted to say something. Bernie said, 'Yes, Ralph, what is it?'
"Ralph looked at him very seriously and he said, 'The kids. The kids.'"
Ann McKee doesn't sleep.
"How could she?" Mackey says.
Complete brain rest, the prescription for concussed athletes, is not an option for her. "I wake up in the middle of the night and I work," she says. "I get up and write part of a grant proposal. I dream about their slides. I dream about their lives. I can't put this to bed."
“The purpose of education is not to validate ignorance but to overcome it”