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The Other Half Of the Story

The Other Half Of the Story
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TOO OFTEN FORGOTTEN IN THE NFL CONCUSSION DEBATE ARE THE WIVES AND GIRLFRIENDS WHO BEAR THE BURDEN OF CARING FOR SUFFERING PLAYERS—AND WATCHING THE MEN THEY LOVE SLOWLY SLIP AWAY

THE NOTEBOOK is pink and purple, his favorite colors. His girlfriend picked it up at a Phoenix-area HomeGoods store eight months ago. She shuttles it between their home office and a desk in their kitchen, jotting down things she knows her 53-year-old boyfriend, two-time Super Bowl–winning quarterback Jim McMahon, won’t remember.

May 28, 2012 Told JM about golf out in Mississippi for [country musician Steve] Azar. From Azar’s heading to Mario’s [Lemieux] event.

A few pages later:

On 6/5 told Mac we need to start to get organized for Azar’s event and for Mario’s. Looked at me like I have five heads. And he said, “I didn’t think we were going to Azar’s.” After a few minutes, he looked at me and said, “Baby, you’re right. Sorry. I forgot.”

Laurie Navon started the log to help McMahon, who played for the Bears and six other NFL teams between 1982 and ’96, recall everything from which charity golf events he was scheduled to attend to why the plumbers were at the door. (Plumber was here. Said we need to change our two toilets.) Many of the other wives and girlfriends who care for retired professional football players—who, according to a 2009 University of Michigan study, may be five times more likely than other men their age to suffer from dementia—can relate to Navon’s log. Its details might be unfamiliar, but overall it tells a familiar story. Theirs.

Navon, 46, is part of an unofficial sorority whose members meet at the occasional team reunion dinner or charity golf tournament. They recognize each other by the burdens they share and by the familiar characteristics of their mates: the slow shuffle, the empty stare, the non-sequitur replies to simple questions. Like Junior League members swapping recipes, the women trade tips for managing their partners’ memory loss and mood swings.

Over the course of the last year, more than 140 lawsuits have been filed by players and their families against the NFL alleging that the league had concealed information about the dangers of repeated blows to the head. (The suits are in the process of being consolidated into one, which will be heard in U.S. District Court in Philadelphia. In response, the NFL, which has moved to dismiss the suits, said in a statement, “The NFL has long made player safety a priority and continues to do so. Any allegation that the NFL intentionally sought to mislead players has no merit. It stands in contrast to the league’s actions to better protect players and advance the science and medical understanding of the management and treatment of concussions.”)

The damages the plaintiffs allege include “loss of consortium,” a nebulous legal phrase that really means a life tethered to a cellphone for fear of missing a call from a confused partner who is standing outside a house he no longer recognizes; a sense that the couples’ golden years have been taken away; and, for some of the women, a daily dose of antidepressants to help them withstand their partners’ senseless rage.

These women are not only their partners’ caretakers but also their voices and advocates. They led the fight for the NFL 88 Plan, a fund to help families pay for the care of former players with dementia. They have testified before Congress about the dangers of concussions. And they have served as the primary contacts for lawyers representing the former players in their battle with the league.

Three such women are Navon, Mary Lee Kocourek and Mary Ann Easterling. They fell in love with men who played in the NFL in different decades, and they now find themselves bearing the burden of their partners’ dementia in different ways. Each of them gave SI a glimpse into her life, revealing harsh realities that too often are part of life after football.

The Beginning

Two years ago Laurie Navon would walk into the bedroom of the Scottsdale house she shares with McMahon and find him lying on the bed watching the ceiling fan go round and round. He slept so much—”hibernating,” she joked—that she began to call him This Old Bear, not knowing that he was showing the first signs of dementia. When he did get out of bed to go to the mailbox or the hardware store, McMahon would kiss Navon goodbye, but 20 minutes later she’d find him in the kitchen, keys still in hand, struggling to remember where he wanted to go. Then there were the times he’d get up, stumble on something and accuse Navon of having rearranged their furniture in the middle of the night. Or the morning on the road when she woke up in the hotel bed to hear McMahon calling out for their Doberman, “Teddy. Teddy.” When she rolled over to ask why, he told her, “Teddy will guide me to the bathroom.”

“But we’re not home,” she said.

He looked around blankly. “That’s right,” he said.

McMahon today differs dramatically from the man Navon met at a golf tournament in Florida seven years ago. “I fell in love with him the minute I met him,” she says. “There was something charismatic about him. He sparkled. He glowed. He was sweet and confident and funny and warm and compassionate. Total opposite of everything I’d ever heard about him.” That glow began to dim after an event for McMahon’s foundation before the Super Bowl in 2009. “That was the last time I saw Jim light, not heavy,” Navon says. “Sometimes it looks like the weight of the world is on his shoulders.”

Navon dismissed McMahon’s early symptoms as normal aging until 2007, when, on the eve of the Super Bowl, she caught a TV special featuring a discussion of brain trauma by Ann McKee and Chris Nowinski of the Sports Legacy Institute in Boston. Shortly after that program Navon called Nowinski to say, “I think Mac’s got some serious issues going on.”

Brain scans and other tests recommended by Nowinski confirmed that McMahon was suffering from early-onset dementia, a condition the couple connects to the four documented concussions that McMahon suffered during his 15-year career, including a 1986 season-ending body slam by Green Bay’s Charles Martin. That year a Chicago Sun-Times story had predicted facetiously that McMahon would one day wear the phrase BRAIN-DAMAGED on his famous headbands. His diagnosis turned that joke into a grim reality.

These days Navon and McMahon play backgammon to keep his mind active. She printed a card with his vital statistics and her phone number and stuck it in his wallet lest he ever get lost. She also programmed their car’s GPS with their address and her phone number. Navon makes sure the home alarm is on at all times in case he tries to wander off alone, and she tries to travel with him as much as possible—especially since he called her four years ago after accidentally boarding a flight to Tampa instead of Chicago. She has their picture taken frequently, in case he wakes up one day and no longer remembers her.

“He could stay like this for the next 20 years, which I would take,” Navon says. “I can handle it.” But in recent months Navon has noticed a new symptom in McMahon. He drops to his knees, breaks into a cold sweat and turns a ghostly white, complaining of a pain that he compares to having an ice pick in his brain. It lasts a minute. All Navon can do is watch.

The Middle

The first sign of trouble for Mary Lee Kocourek was that her husband, Dave, was forgetting things and sleeping more than usual. Dave, a four-time Pro Bowl tight end in the 1960s with the Chargers, Dolphins and Raiders, was her high school sweetheart. For years he’d arranged his shoes by color and function, but around 1999 he began to seem disorganized. He frequently misplaced his wallet or his AFL championship ring. She took him to a doctor in 2002, and Dave, then 64, was given a diagnosis of early dementia.

In 2005, Dave took the couple’s dachshund, Tootsie Roll, for a walk near their house on Marco Island, Fla., only to end up at a police station looking for his other dog—although the couple did not have one. In a three-day period in 2010, police twice had to be called in to help search for Dave. (Once, Mary Lee says, they prepared to dispatch search-and-rescue boats into the Gulf of Mexico.) The first time, he turned up, with Tootsie Roll, in the lobby of a Marriott two miles from their house; the next time, in a church parking lot.

Mary Lee became even more vigilant after she walked in on Dave preparing to brush his teeth with a razor. “When you see a man that was so big and so strong and so nice and gentle, and he doesn’t know the difference between a toothbrush and a razor …, ” Mary Lee says, crying. “He could have cut his mouth wide-open. After [he] got progressively worse, I had to watch everything he did. I couldn’t let him take a shower or do any of the things you need to do every morning without me being there. I couldn’t chance it.”

Mary Lee, a real estate broker, began taking Dave to work with her. The office managers assigned him a desk while Mary Lee worked on her listings. At home she relished his nap times. “This is terrible to say, but it was sort of a help that he did sleep, because then I could do other things around the house,” she says.

By 2008 Mary Lee, exhausted by the round-the-clock care, persuaded her husband to attend thrice-weekly adult-day-care sessions by telling him that the program administrator, a family friend, needed his help. The day care helped, but in August 2010 Mary Lee needed back surgery, which would entail a lengthy recovery during which she wouldn’t be able to care for Dave. That meant putting him in a nursing home.

The heartbreaking decision to place a loved one in institutional care is not limited to NFL families, of course. But the process is often made even more difficult by the simple fact that traits that are considered a virtue in professional football players—towering size, hulking frames—are liabilities to nursing homes and the companies that insure them. The wife of one former player struggled to find a facility with a bed big enough to fit her husband, a former offensive lineman.

The NFL does help defray the $76,000 per year it costs Mary Lee to keep Dave in a nursing home, but she still feels the financial strain. Her husband never earned more than $35,000 in a season. She bristles at message-board postings and call-in radio chatter suggesting that plaintiffs in the concussion litigation are motivated by greed rather than need. “They should have told us something about repeated head injuries,” Mary Lee says between tears. “I’ve lost the love of my life. These are supposed to be our golden years, but they certainly are not. I’ve gone into a deep depression, and I’m on medication. I had to put my husband in a home…. I just flipped.”

Much of Mary Lee’s social circle has vanished. “When you’re not a couple, you’re not included in many things,” she says. Even if she wanted to take Dave to a restaurant, she couldn’t because he wears adult diapers. Trying to go to a doctor’s appointment is often complicated by Dave’s refusal to get in the car. “Sometimes I have to get some people in the street to help me,” she says.

Their time together is mostly limited to Mary Lee’s nightly stops at the nursing home for a happy hour of apple juice and chips with her husband. She does her best to talk to him, but sometimes he speaks only gibberish, indecipherable even to the woman who’s been married to him for 54 years. He doesn’t know the day of the week, the month or the president—though he has been heard singing his alma mater’s fight song, On, Wisconsin!

“I’m lonely, and I’m sure it’s lonely for him, too,” Mary Lee says. “I just wouldn’t want anyone else to go through this.”

The End

Mary Ann Easterling heard her husband, Ray, say it time and time again: No nursing home. Which is why on April 18, the day before he took his own life, Ray, 62, was grilling his primary-care physician about how long it would be before what remained of his mind would wither.

“Three years,” the doctor said.

On the car ride home Ray, a member of the Falcons’ Gritz Blitz defense that in 1977 set an NFL record for fewest points allowed in a season, turned to Mary Ann and said, “I don’t believe what he said.”

Mary Ann had decided to take him to the doctor following an episode earlier in the week. Her cellphone had rung while she was at her job as an administrator and teacher at a home-school collaborative near their house in Richmond. She heard Ray’s voice on the other end, frantic. He was on his way to the post office but suddenly didn’t recognize his surroundings. Trying to keep her voice from registering any emotion, Mary Ann helped him divine his location: He was outside the building they had lived in for a decade, years ago, directly across the street from the post office.

“This was another step along the road,” Mary Ann says of the incident. “We had been stepping down like that for three years. In my heart I was sad for him because I knew he [would no longer] feel right about going out by himself.”

Mary Ann first noticed Ray’s decline in the late 1980s, about a decade after he retired from an eight-season pro career. The normally vibrant, devoted man she’d met at a Thursday-night Bible-study class in 1975, the man who prayed with her every day, had become sullen and depressed, and he began having outbursts of blistering anger. “Little things would set him off,” Mary Ann says. “You feel like you’ve got to walk on eggshells.”

By the 1990s Ray, who’d had a successful career in financial services, began making impulsive and risky decisions, a hallmark, some scientists say, of chronic traumatic encephalopathy, a deterioration of the brain believed to be linked to repeated blows to the head. He took out a line of credit on their house and invested in a nutrition business. More troubling to Mary Ann, Ray didn’t do what he usually did before making a big decision: pray with her. The business failed, and they were forced to sell their home and live in the office across from the post office—the building that Ray later wouldn’t be able to recognize.

As the years passed, Mary Ann’s fears grew. Ray was combative with co-workers, and by 2008 he could no longer make business presentations without losing his train of thought or button his shirts without Mary Ann’s help; the fine motor skills in his hands were all but gone. In the last year of her husband’s life, Mary Ann listened to him tell wild stories about people following him as he jogged and complain that she didn’t care about him when she left the house for work.

Then while surfing the Internet one evening in 2010, Mary Ann found a report suggesting a link between her husband’s symptoms and his football career. Three months later a battery of tests confirmed a diagnosis of early-onset dementia. “Although I was very sad,” Mary Ann says, “it was also a huge relief to know that it was something organic that was wrong.”

On the morning of April 19, Mary Ann found Ray’s lifeless body next to a handgun. That his behavior—and his decision to take his life—stemmed from brain damage he might have incurred as a football player gives her, oddly, a sense of peace. “It’s a disease that eats at the brain,” she says, “and the player can’t help it.”

Not long after Mary Ann buried Ray, a woman from their church whose husband suffered from Alzheimer’s approached her to say, “Do not feel guilty about feeling relieved.”

“It was a relief,” Mary Ann admits, “because every day [with Ray] was a conflict. Every day was like I was going to war—and not physically; it was all mental and emotional.” She finds comfort in her faith and in Ray’s final words to her in the note he left: I am ready to meet my Lord and savior.

The last three decades have made her tougher, Mary Ann says. Which explains in part why, even after Ray’s death, she presses on in her legal battle against the NFL, intent that the league create the kind of medical-monitoring program that could have benefited her late husband.

Ray’s framed Falcons jersey, his old football helmet and an old game ball still sit in his home office, exactly as he left them. On the ball are written the words YOU PAID THE PRICE. Mary Ann looks at it occasionally, knowing that the inscription applies to many other men—and so, too, to the women who love them.

Story originally appeared in Sports Illustrated, September 10, 2012
http://www.si.com/vault/2012/09/10/106231591/the-other-half-of-the-story

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