The door to Ann McKee’s office is a shrine to the human brain: artistic, scientific, and comic. An iridescent Andy Warhol carrying a Campbell’s Soup can keeps company with a newspaper photograph of the anatomist and neurologist who created the Wilder Brain Collection at Cornell University. A teenage boy slouches across a 2006 cover of The New Yorker, the lobes of his not-yet-adult brain depicted under a baseball cap. “MySpace” dominates his prefrontal cortex, an illustration of just how much has changed in social media, sports, and brain science. A bumper sticker asks, “Got brains?”
Brains she’s got. Brains in glass jars in the storage room across the hall from her office. Brains blown up in digital images taken from autopsies she has done on some of America’s most famously deceased athletes. Brains stored in a deli case in white plastic tubs that might otherwise accommodate 10 pounds of potato salad. Brains in baggies, slices of tissue that, she says, remind some people of the pickled ginger served with sushi.
This is the Brain Bank at the Bedford Veterans Administration Medical Center in Bedford, Massachusetts. Here, in a small room dominated by stainless steel, McKee performs autopsies. She examines the brains of athletes — men and women — who, without really knowing it, put themselves in harm’s way. She sees the brains of soldiers who knew the risk. In all of them, she sees what happens when the brain is assaulted.
Among other things, Ann McKee is chief neuropathologist for the VA, Boston University’s Alzheimer’s Disease Center, the Framingham Heart Study, the New England Centenarian Study, and the Center for the Study of Traumatic Encephalopathy, which was created in 2008 to examine the impact of collisions between oversize human beings in pursuit of balls, yards, pucks, wins.
She is a mother, a painter, and a frustrated jock who says she can’t keep up with her family. She is exhausted and inexhaustible. “I think it shows, but I can’t stop.”
Only she thinks she looks her age — 59. “Most neuropathologists look and sound like they’ve spent time in formaldehyde,” says David Hovda, director of the UCLA Brain Injury Research Center. “Ann, well … ”
“She’s a brilliant scientist who happens to be a little blonde bombshell,” says Eleanor Perfetto, widow of former offensive lineman Ralph Wenzel, whose brain tissue is currently being studied in McKee’s lab. Like McKee, Perfetto, a pharmacist who has a Ph.D. in public health and a senior position at Pfizer, knows the challenges of being a woman in a male-dominated world. “That’s why people look at her and think, This is a woman who cuts up brains? There’s such a dichotomy. Her work is something a lot of people would not want to do, and certainly not a lot of women. She’s so unexpected.”
“I’m a Cheesehead,” McKee says.
This explains the framed 1968 Green Bay Packers yearbook and the January 22, 1969, cover of Sports Illustrated with Jerry Kramer cradling Vince Lombardi in his arms. Her pooches at home wear Green Bay Packers dog tags. Within reach of her desk, she has a roster of empty-headed bobbleheads — Brett Favre in green-and-gold, in white-and-green, in purple-and-white; and Aaron Rodgers, Favre’s estimable successor in the huddle and in her affections. And a hero of another kind of artistry — a ringer in street clothes named Vincent van Gogh.
Every football Sunday, she parks herself in front of the TV in her authentic Packers foam Cheesehead ($17.95 at packersproshop.com) and Rodgers’s no. 12 jersey and prays that none of the men on the field end up on a dissection table. To date, she has found ravages of CTE, the neurodegenerative brain disease that has become her life’s work, in over 70 athletes, nearly 80 percent of those she has examined. Among them: 18 of the 19 NFL players she has autopsied; three NHL enforcers; and a boy just 17 years old. McKee, who received $1 million in funding from the VA as well as a home for her lab, has also documented evidence of CTE in combat veterans exposed to roadside bombs.1
“I have absolutely zero concern that it is influencing her research,” says Dr. Ramon Diaz-Arrastia, director of clinical research at the Center for Neuroscience and Regenerative Medicine at the Uniformed Services University of the Health Sciences, who knows how hard it is to get scientific funding as well as McKee’s scrupulous reputation.
“The coolest thing about Ann is she spends all day doing autopsies on NFL players and can’t wait for the weekend to put on her Packer sweatshirt and climb into bed with a big bag of popcorn and a beer,” says Gay Culverhouse, former president of the Tampa Bay Buccaneers, who now advocates on behalf of former players.
“Well, I don’t usually do it in my bed,” McKee says.
The Packers’ loss to the Giants in the playoffs was a blow, but also an opportunity to work. By Super Bowl Sunday, she had recovered sufficient equilibrium to host a family party. She wore her Cheesehead — and even volunteered to send me a photograph. “I love it — I love football,” she says, her face falling like the pocket collapsing around her favorite quarterback. “I’d like to put everything I know about it in another room when I’m watching it. But it’s hard to do it through the whole game. I have enormous admiration for the physical athleticism and ability. It’s strategic but requires skill that most people don’t have. I get extremely caught up in it. At the end of the game I think, How could I watch this?”
The day America gave itself to Super Bowl XLVI feels as long ago as the Roman Empire. Since then?
• March 2: NFL commissioner Roger Goodell announces the findings of an investigation into bounty hunting by the New Orleans Saints, a system — football’s favorite word — organized by defensive coordinator Gregg Williams.
• March 21: Goodell suspends Williams as well as Saints general manager Mickey Loomis and head coach Sean Payton.
• April 4: A tape recording of Williams’s pregame exhortation is released: “Kill the head, the body will die.” (Those pregame, pep talk fighting words sicken Perfetto. “I’ve seen what happens when the brain is killed,” she told me a month before her husband’s death. “It is a long, agonizing journey for that body to die.”)
• April 19: Ray Easterling, former Falcons safety, commits suicide. He and his wife were lead plaintiffs in the first class action suit filed against the NFL, in August 2011, seeking damages for seven former players. A year later, there are approximately 113 suits pending, involving more than 3,000 players, which have been consolidated into a master complaint in federal district court in Philadelphia. This class action suit charges the NFL and official helmet maker Riddell with negligence and hiding information linking football-related head trauma to permanent brain injuries.2
• April 30: Headstrong, an Off-Broadway play about a former NFL player living with post-concussion syndrome, premieres.
• May 2: Goodell suspends four Saints players, including Jonathan Vilma and Scott Fujita, a member of the NFL Players Association executive committee who has advocated for independent neurologists to be on the sidelines. That same day, Junior Seau, a future Hall of Famer who did not have a diagnosed history of concussions, was found dead with a self-inflicted gunshot wound to the chest — the same awful methodology Dave Duerson chose when he killed himself, leaving a suicide note asking that his brain be left in care of Ann McKee and her team. The findings of CTE in Duerson’s brain were released on May 2, 2011.
• June 13: Pop Warner football, which registered more than 285,000 children ages 5-15 to play in 2011, bans head-to-head hits and limits contact in practice to 40 minutes a day. That night, Terry Bradshaw, the former Steelers quarterback who now receives treatment for short-term memory loss at the Amen Clinic in Newport Beach, California, told Jay Leno: “In the next decade, we will not see football as it is.”
Grade 4, a more florid form of Grade 3, is generally only seen in those who live with the disease longer. “Mostly people who have lived into their 60s or 70s or who had prolonged, extensive exposure, a long career, or both,” says Cantu, chief of neurosurgery and director of sports medicine at Emerson Hospital in Concord, Massachusetts.
It is a measure of the sea change in public perception that Junior Seau was immediately popularly diagnosed with CTE, despite the existence of personal problems that might have played a role in the suicide. On July 12, his family announced that part of his brain tissue had been donated to the National Institutes of Health’s National Institute of Neurological Disorders and Stroke for study. Two weeks later, Goodell announced the creation of NFL Total Wellness, a new program of mental health benefits, including Life Line, a free telephone service staffed by mental health professionals and suicide prevention experts. The next day the medical examiner in Richmond, Virginia, confirmed a diagnosis of CTE in Easterling’s brain.
The potential cost of employment in McKee’s favorite sport is never far from her mind. She reaches for Green Bay Brett and flicks his molded-plastic noggin with her finger. The oversize head bobbles and wags, lurching back and forth on its spring like a kid trying out a pogo stick. Only the smirk on his prefab mug remains fixed.
“Get the irony?” she says.
Over the last four years, McKee has become the most visible member of a cohort of research scientists and family members — wives, mothers, daughters, and sisters of the dead, dying, and demented — who have forced the issue of chronic brain trauma into the forefront of American consciousness. The process has engendered enormous publicity as well as criticism and jealousy in the scientific community, which is every bit as competitive as the NFL. Her work has brought “a great deal of acclaim, exposure, and recognition,” says neurosurgeon Robert Cantu, clinical professor of neurosurgery at Boston University and co-director of CSTE. “But at the same time it’s brought a great deal of pressure. Not everybody greets her findings with the same degree of enthusiasm.”
War-painted denizens of the upper deck may view her as The Woman Trying To Destroy Football. In fact, she is The Woman Trying To Save Football From Itself. The process has engendered a particular intimacy with those who entrust their loved ones to her posthumous care. Virginia Grimsley, whose husband, John, was the first NFL player diagnosed by McKee, says, “He’s in good hands with her. They’re all in good hands with her.
“If Joe Six-Pack was as educated as the wives that have gone through this and as Dr. McKee, Joe Six-Pack would sit down, shut up, and continue to drink his six-pack,” Grimsley says. “She’s not trying to destroy football.”
McKee says: “I’m just trying to tell football what I see.”
What she sees through her microscope is mediated by a painterly sensibility that suffuses how she talks about her work, how she approaches it, and how she presents it. She was an art major freshman year at the University of Wisconsin. She gave it up in favor of making a living, but she never quit making art. “I think you have to be creative to make a difference in science,” she says. “So being artistic, it’s not always going with what is accepted. I’m not your run-of-the-mill scientist.”
It took an artist to see beyond Joe Theismann’s splintered tibia, Johnny U’s gnarled fingers, and Bo Jackson’s necrotic hip to the head-banging obvious and to grasp the importance of aesthetics in changing public opinion. “Actually, I do think that makes a big difference,” she says. “I think that laying out something in a visually pleasing way is very important. I look at Mad Men and how you advertise to get your point across. In order to swing public perception and gain acceptance for your work, you have to be your own advertising firm.”
She photographs every brain before autopsy and memorializes slivers of tissue in irrefutable portraits of disease that line the hallways of her lab. Exhibit A: a montage she created from sections of 27 damaged brains, white matter arranged like so many Marilyn Monroes by Andy Warhol. “This is Eric Scoggins,” she says. “This is Wally Hilgenberg. This is Mike Borich, a college player. We got it from the coroner, so it’s not a complete section. This is John Grimsley. This is Dave Duerson. Up here we have Derek Boogaard, the hockey player.”
Some painters revisit a single image again and again — a billowing sail or perhaps a lily pond — finding the particular in the generic. Tau, a protein in brain cells that turns rogue with repeated trauma, is McKee’s subject; the brain is her canvas. “If you look at the paintings of Van Gogh, he saw things other people didn’t see,” Hovda says. “Good neuropathologists see things through a microscope that you and I don’t see clearly, and I have spent a lot of time looking through a microscope. It’s because they have an artistic appreciation for what they are seeing and the ability to recognize it as pathology. She has demonstrated pathology in a way that is beautiful and irrefutable.”
To gaze upon McKee’s montage is to see the unseen. Daniel Perl, professor of pathology/neuropathology at the Uniformed Services University in Bethesda, Maryland, who has known and worked with McKee for two decades, says: “I think she has completely changed the way we see the experience of playing football.”
Can I see a brain?” I ask.
“Sure, we can go to the morgue,” she says.
She leads the way down the hall to an unprepossessing room in an unprepossessing brick building on the campus of the Edith Nourse Rogers Memorial Veterans Hospital. Currently, there are 125 brains registered to the Brain Bank, among them 21 veterans who experienced mild traumatic brain injury. Chris Nowinski, co-director of CSTE and founder of the Sports Legacy Institute, a nonprofit organization dedicated to concussion awareness, secures the donations. Five hundred athletes — including him — have promised their brains to McKee.
They arrive in buckets packed in Styrofoam boxes, inside plastic bags on wet ice. Sometimes, after hours, deliveries are made to her home. Once, inadvertently, a box was left with a neighbor. “I can only imagine what they were thinking,” she told Mark Kram of the Philadelphia Daily News in 2009. It hasn’t happened since.
The contents are precious, so on-time deliveries are essential. “Our greatest fear is that something will get lost,” she says. “We have to go from hand-to-hand-to-hand.”
At the lab, the brain is weighed, photographed, and preserved in fixative, a Formalin derivative that firms the tissue and makes it easier to cut. Half will be frozen at 80 degrees below zero Celsius for future investigators; the other half becomes McKee’s raw material.
McKee regards each as a charge, a challenge, a privilege, a person. “It’s actually the person of the body,” she says. “If you don’t have a brain, you have no identity.”
She sees beauty in the infinite handiwork of the human brain and the complexity of its structure. “I do love the way the brain looks. I love the way it’s shaped. When I see a brain that’s been damaged, it hits you like — ”
“You see tearing of certain structures. You see holes where they shouldn’t be. You see shrinkage.”
She has seen brains that have defied aging and those that have aged prematurely; brains that have sustained damage from a concussive rocket blast 150 feet away and brains damaged from one too many head butts at the line of scrimmage. She has seen so many brains she has lost count. “Somewhere in the thousands,” she says. “One hundred and fifty a year for 25 years — what’s that?”
In the morgue there is a single autopsy table, and a drawer labeled FEET FIRST, HEAD BY DOOR. Her colleague Dr. Victor Alvarez opens the drawer, revealing the remains of an unidentified donor swaddled in a crisp white hospital sheet, a bundle as small as an Egyptian mummy. “Just like on TV,” he says.
At McKee’s behest, Alvarez retrieves the atrophied brain of an elderly veteran from a white bucket. Fixative had rendered it the color of a peeled potato too long exposed to the air. The weight was scribbled in Magic Marker — 1,017 grams.
“Should be 1,400,” McKee says — the size of a small chicken. “The NFL guys should be 1,600. Some of them weigh half that much.”
Alvarez placed the brain on a black cutting board atop the stainless steel table and took up his scalpel. He paused, almost imperceptibly, before making the practiced and decisive cut.
It felt like a sacred pause.
“That moment of awe lasts a long time, because you not only open the box but then you investigate, take photographs,” McKee says. “There’s a somberness that sometimes comes over the room because you’re now starting to become involved.”
There is excitement too. She doesn’t want anyone to get the wrong idea of what she means by this. It is the exhilaration bred from intellectual rigor, the thrill of scientific discovery and the tantalizing prospect of finding a way to diagnose the disease in the living and intervene in the degenerative process before too much damage is done. The work is compelling and consuming. One morning, two new donations were delivered to the lab at the same hour a widow arrived to see where her husband had been diagnosed. McKee asked: “Do you mind if I just … ?” The visitor understood: She just couldn’t wait to take a look.
By definition, pathology begins with the denouement. “Now you’re at the end, and then you’re going to slowly unravel the mystery, the puzzle,” McKee says. “You start with what the brain looked like at death, get an idea of how impaired it was, and then over the next few months you’re going to unravel the rest of the story.”
She may know if the donor on her table played football or hockey or launched one too many headers on goal. Scientific bias precludes any further familiarity. Googling will have to come later. “I have to know the name,” she says. “A number of times it’s come up they want me to just use numbers, and I can’t do that. It’s got to have a name because it is a person, a life.”
She was born into a football family in a football town some 30 miles from Lambeau Field. As a young girl she was known as AC — as in the spark plug — because she was the fastest kid in school.
Growing up she loved Barbie as much as she did Bart Starr. Of course. “She got Ken and all those wigs,” McKee says.
She was a cheerleader in high school — “The only sport they allowed me to do.” Her brothers played college football — as did her father, whose 1930s team picture from Grinnell College hangs in the conference room where we met. “We would spend nearly the whole summer at Post Lake,” she says. “Our best friend was the high school coach, and so Mr. Dillon would have us run the tires every morning and we did football practice. That is what we’d do all summer. My brothers would let me play.”
McKee on McKee: “I had promise.”
She was the youngest of five children, seven years younger than the next-oldest sibling, Chuck, a star high school and college quarterback. “I just admired him like crazy,” she says. “I went to every game of his. One time when I was 8 I put a sign in the yard because people would go past our house to get to the stadium: ‘Chuck McKee lives here.'”
The NFL was interested, but he wasn’t. “He didn’t think it was so good for him, actually,” she says. “He didn’t say it was about his brain, but I think he was looking at his longevity. He went to medical school instead. He’s a huge reason why I’m in this business.”
Last on the familial depth chart — “shorter, slower, dumber — last to the table, the last in everything,” she learned to “fight and scratch for position.” Good training for future tussles with the NFL. A twice-divorced mother of three, she presides over an almost empty nest — her 26-year-old daughter is a med student and a newlywed; her 22-year-old son played soccer, not football. He was a great goalie, his mom says, and would have been a great wide receiver. “I would have loved him to play, because it’s what you do in my family. His dad didn’t want him to play. And I thought my husband was the biggest wimp because of that. Turns out now it might have helped him.”
Her 16-year-old daughter lives at home in Massachusetts. “I’m still dealing with driving carpool,” Mckee says, rolling her eyes. “I’ve been a mother for a l-o-o-o-n-g time.”
The no-nonsense pantsuits and plain button-down shirts she favors in public appearances may be appropriate to her very particular workplace, but do not succeed in lowering her profile. Hip red reading glasses that magnify piercing blue eyes are accompanied by an unexpectedly girlish giggle and a mordant sense of humor. She has stared down congressmen and NFL officials with those baby blues. (“She’s not exactly Jack Klugman,” says Robert Stern, a co-director of CSTE.)
Initially McKee was greeted by the league as enthusiastically as Vikings fans at Lambeau Field. She first met with what was then called the “Mild Traumatic Brain Injury Committee” at NFL headquarters in New York on May 19, 2009. She remembers sitting at an “enormous boardroom table with a bunch of non-smiling men in suits. The atmosphere was cool and noticeably testosterone-filled,” she says. “There were a total of two females in the room.
“The reception was one of complete dismissal. The men representing the NFL had made up their minds that anything I had to say was not accurate or not applicable. After I spoke, there was continued denial that the findings had any merit, and they proceeded to let me know that.”
“If she sat in the corner and I showed the pictures, the response would have been the same,” says Dan Perl, who also addressed the meeting. But over the years, McKee’s heightened profile and accumulated results have engendered some not-so-subtle sexism. “Being marginalized by the NFL and a lot of our colleagues — that has a lot to do with being a woman,” says Perl.
The October 28, 2009, hearings before the House Judiciary Committee represented another Rubicon. Before swearing an oath, she had to decide, “How much did I believe it?” The demented condition of a childhood hero — the Packers’ splendid safety Willie Wood — was deeply affecting, as was her testimony and that of Culverhouse, and Perfetto, all of which left Congressman Lamar Smith fuming and Congressman Ted Poe grumping about “the end of football as we know it.” Why, if Congress gets involved, Poe groused, “we would all be playing touch football out there.”
“I love the scowl she gave the congressmen,” Virginia Grimsley says. “I’d like to give them a scowl myself.”
Within a month the NFL had accepted the resignations of the co-chairmen of its discredited brain injury committee and configured a new one: the Head, Neck and Spine Committee. Cantu serves as a senior adviser, as well as medical director of the National Center for Catastrophic Sport Injury Research. In April 2010 CSTE received $1 million in unrestricted funds from the NFL, part of which has funded McKee’s research whether it’s something the NFL agrees with or not.3
A study published in May in the journal Science Translational Medicine linked CTE in athletes to military veterans exposed to concussive battlefield blasts. The study, authored by McKee and Lee Goldstein of the Boston University School of Medicine, comparing autopsies of four athletes and four veterans, suggested that roadside bombs injure the brain in ways strikingly similar to tackles and punches. They also demonstrated evidence of the disease in laboratory animals two weeks after being exposed to a single blast.
But giving voice to the dead on 60 Minutes, in the pages of the New York Times, and before Congress (four of 25 pages on her CV are devoted to media appearances) has also made her a target. Richard Ellenbogen, co-chairman of the NFL’s Head, Neck and Spine Committee and chairman of the Department of Neurological Surgery at the University of Washington School of Medicine, says she needs to publish more in peer-reviewed journals and conduct studies with controls comparing incidence in collision sports with other athletes, such as rowers and female basketball players. He also says she has crossed the divide from hard science into advocacy. “She’s possessed,” says Ellenbogen. “She is no longer impartial.”
This is a charge Cantu adamantly rejects: “She is a scientist first, not an activist first.”
McKee sighs. “You get enemies in this business.” She must tread a not-so-fine line between SLI’s advocacy mission and the publishing protocols of medical research. “This was discussed from the day we started working together,” Nowinski says. “She recognized she would be criticized in academic circles for talking about [some of] the work before academic publication. A lot of the blame — pushing for some of the information to get out comes from me.”
Hovda, whose research into the neurobiology of concussions demonstrated the vulnerability of the brain to second insults, says McKee’s science is rigorous, significant, and does not overinterpret the available data, which is inherently limited by the facts of neuropathology — you only get to diagnose people who are already dead.
The bull’s-eye on her back is likely to remain there as long as postmortem exam remains the only way to diagnose CTE. Progress toward identifying the disease in the living has been rapid — compared to the agonizingly slow pace of Alzheimer’s disease research. Blood tests for tau, diffusion tensor imaging, functional MRI, and biomarkers that will allow doctors to image the disease are all in development. Already, Hovda says, researchers at UCLA can image tau and beta-amyloid deposits in laboratory animals, and may be able to do so in humans within the year. “I’d love to put her out of this business,” he says. “And I bet Ann would love me to put her out of business.”
McKee says: “I’ll keep this up as long as it takes.”
Longevity runs in her family.
She never expected to get inside the head of the NFL. She thought she would become an internist and turned to neurology and neuropathology not to get away from people but to get closer to what makes them uniquely themselves. “They entrust me with their privacy, really,” she says. “What a person’s tissues look like, what struggles they were going through during life, and then what disease they have at death is a very private matter. That’s as naked as you could possibly be. It’s revealing yourself and revealing your internal structure.”
For 25 years she studied tau in perfect anonymity, trying to understand its pivotal role in aging and Alzheimer’s disease.
“Why tau?” I asked.
“Because it’s pretty,” was the artist/pathologist’s reply.
The tau protein, named for the 19th letter of the Greek alphabet, is a naturally occurring substance in brain cells. Its job is to hold together microtubules, which are rigid, hollow rods like beach reeds that serve as conduits between brain cells. Tau provides “the scaffolding to support its shape and also to help transport molecules, nutrients, back and forth,” McKee says. “Without tau the cell would collapse and the transport functions would be critically impaired.”
With repeated head trauma tau turns insurgent, a guerrilla force occupying and killing more and more of the brain. “It falls off the microtubules, and so they fall apart too,” McKee says.
Each concussive blow to the head — a right cross, a body check into the boards, a helmet-to-helmet collision in the open field, a header inside the goalie’s circle — becomes a potential IED, a bomb hidden on a neural pathway. Think of it this way, she says: “This transport function of the cell is just like a road. And the road just fell apart.”
Dementia pugilistica — punch drunkenness — first appeared in the medical literature in 1928. In 2002, Bennet Omalu, then a neuropathologist at the University of Pittsburgh, diagnosed the first known case of CTE in former Pittsburgh Steeler Mike Webster. He joined forces with Chris Nowinski, who procured three more donations, including former Eagle Andre Waters. All showed evidence of CTE.
In 2003, McKee performed an autopsy on a 72-year-old veteran who had been diagnosed with Alzheimer’s disease 15 years earlier. She found toxic tangles of tau common to Alzheimer’s and CTE, but they appeared in a totally unfamiliar pattern. And there was no evidence of the beta-amyloid plaques also present in Alzheimer’s patients.
After the autopsy, she learned he had been a world-champion boxer. “That was the aha moment,” she says. “I kept asking my colleagues if they had another boxing brain. I couldn’t get it out of my mind.”
McKee’s laboratory does the neuropathology work for the Framingham Heart Study, the landmark multi-generational investigation into causes of heart disease. “I went back and stained all the Framingham heart disease cases we had, looking for a pattern of change that looked anything like this. I have drawers and drawers and drawers of these slides, and nothing looked like it.
“Then [in 2005] we got another through the Alzheimer’s Center. There wasn’t any history of head trauma. I went through all the medical records and nothing, so I got the name of the family. And I called the daughter, and she said, ‘Well, he did box professionally in his 20s.’ So, that was like, ‘Okaaay.'”
In 2008 Nowinski came calling. He had parted ways with Omalu. He was also suffering the consequences of his WWE career, when he was known as Chris Harvard. Four wrestling concussions and two others on the gridiron had left him with severe headaches and impaired short-term memory — although he hasn’t forgotten the taste of blood in the back of his throat that accompanied hits he took as a defensive tackle for the Crimson. (Thanks to a recent pickup basketball game, the count is now seven.)
He consulted Cantu about his symptoms. The doctor-patient relationship evolved into a professional alliance. They created SLI and later partnered with Robert Stern, director of Boston University’s Alzheimer’s Disease Clinical & Research Program, to create the Center for the Study of Traumatic Encephalopathy with the goal of acquiring and examining brains of deceased athletes exhibiting symptoms of premature dementia. All they needed was someone to do the autopsies. “Have I got the neuropathologist for you!” said Stern.
McKee sounds a lot like a football coach when she talks about her team at the Brain Bank, except, she says, her people give 400 percent. Over the course of three or four painstaking months, McKee’s staff will cut half the brain into slices the thickness of white bread. They will use a high-tech deli slicer called a Microtome to shave 50-micron slivers of tissue — 0.001968 inches — which will shrink to less than half that size and be stained, fixed to slides, and magnified, perhaps 100 times, under the microscope.
“Handwork,” she calls it.
Unstained, tau is unidentifiable. Staining makes the texture and the damage palpable. Some pathologists use a blood-red color to dramatize areas of disease. McKee favors brown, the color of dried blood.
On the day I visited, she spoke about the woman who prepared her slides for the last decade and whose devotion to her craft, despite failing health, was that of a mother hoping to find a way to protect her son. “An artisan,” McKee calls her. “Like a person who makes a mosaic out of a million little pieces. It can take three or four hours just to lay the tissue out on the slide” — not including cutting and staining — “because you get it when it’s wet and you have to manually smooth down every single teeny-tiny wrinkle.”
John Grimsley, a linebacker who suffered three concussions in college and eight in the NFL, was the first NFL player whose tissue they examined. What McKee saw was so unprecedented in her experience that she twice asked Dan Perl to come look at the slides. It was a case of: Do you see what I see? He did. “When you look at the tangles, you say, ‘Wow,'” Perl says.
While McKee and her staff dissect and preserve tissue, Stern, who oversees the CSTE registry, interviews family members to develop a case history: number of years and position played and in what decade, number of concussions suffered and symptoms noted. The most frightening finding is that “the biggest problem isn’t the concussions, actually,” McKee says. “It’s the sub-concussive hits that mount up every single time these guys line up.”
It’s been estimated that there are 1,000 to 1,500 of those kinds of hits per season per person in the NFL. “A big job liability,” she says.
In November, Stern received a $1.5 million grant from the National Institutes of Health to study 100 former players between ages 40 and 69 with symptoms consistent with CTE who played positions at the greatest exposure for getting hit in the head — defensive linemen, linebackers, offensive linemen, and defensive backs. The goal is to establish risk factors for the disease and genetic predisposition. “If we can figure out the genetic risk, we could be much smarter about informing individuals who are considering playing these sports what their relative risks are,” McKee says.
Despite new NFL rules limiting the number of padded practices, and protecting defenseless receivers, the cumulative effect of violent collision remains dire. McKee believes there is “a window of reversibility” of perhaps one year before the disease has had “a chance to gain speed [and] cause the cells to die.”
Stern: “With each brain that comes in, especially the younger ones, and especially the ones without any known significant history of concussions, but a whole lot of sub-concussive blows, that’s where she gets really scared. That’s where we all get really scared.”
Posters hanging in the conference room show the sickening march of the disease — an 18-year-old who looked like he had cigarette holes burned in his brain; Owen Thomas, a junior and co-captain of the University of Pennsylvania football team who never suffered a concussion; Dave Duerson, who played 11 years in the NFL.
McKee has developed a four-tier system for staging the disease that first invades the front cortex — the province of judgment, insight, inhibition, and concentration — and then begins to “work its way inward, penetrating the essence of a person.”
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
There is also litigation pending against individual franchises. Eleanor Perfetto filed the first workman’s compensation claim, against the San Diego Chargers, on her husband’s behalf in April 2010. Her attorney expects the first of the 50 such suits he is handling to go to trial in January.
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.”
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.”