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The reception for former NFL players was getting noisy and Sylvia Mackey decided to retreat to an empty conference room to get her husband away from the din. As they sat quietly at a conference table, she noticed another couple coming through the door, the wife tightly grasping her husband’s hand. Sylvia didn’t recognize the hulking sixty-three-year-old former player or his wife, but she did recognize the signs of the disease that was ravaging his brain.
Sylvia got up, walked across the room, and introduced herself. Then she looked directly into Eleanor Perfetto’s eyes and said gently, “Your husband has dementia.”
Eleanor nodded and replied softly, “Yours does, too.”
Even though she hadn’t spotted John Mackey’s symptoms from across the room, Eleanor recognized the name. Like most everyone else in Baltimore, she knew that John Mackey had been diagnosed with dementia, just as she knew that he had been a superstar for the team that once enthralled the city, the Colts. Now she finally had the chance to bond with another wife who was going through the same ordeal that she was with her husband, Ralph Wenzel. Sitting at the conference table, the two women shared experiences as their husbands stared blankly off into space.
They started with day-to-day caregiving challenges, but soon moved on to the topic that was threatening to make their lives impossible: finances. Sylvia said she’d had to go back to work several years earlier at the age of fifty-six, taking a job as a flight attendant. The Mackeys needed the money as well as the health insurance the job afforded. They never had much of a nest egg—John had earned less than $50,000 per season during a ten-year Hall of Fame career that ended in 1972—and his pension of $1,950 a month wasn’t enough to cover their living expenses, let alone the escalating cost of his care. For her part, Eleanor was afraid that Ralph’s worsening dementia might send them into bankruptcy. Though she had a good job as a senior director at a major pharmaceutical company, she knew it wouldn’t be enough as Ralph’s disease progressed. Ralph, who had made so little during his seven-year career as a backup lineman that he depended on offseason jobs to make ends meet, was receiving only $925 a month from his NFL pension. Eleanor was already searching for an assisted-living facility because she knew she wouldn’t be able to care for him at home much longer. Good ones were expensive, and she didn’t know where the money was going to come from.
Sylvia nodded reassuringly and told Eleanor that help might be on the way. She’d been lobbying the NFL to create a program that would help families take care of former players who had developed dementia. A few months earlier, in the spring of 2006, Sylvia had written a three-page letter to the NFL commissioner, Paul Tagliabue, in which she described her husband’s decline and explained how it was going to ruin her family financially. She told him that dementia was “a slow, deteriorating, ugly, caregiver-killing, degenerative, brain-destroying, tragic horror.” She pleaded with him to help her family and all the others struggling to care for retired players with disabilities like her husband’s.
When it came to dealing with the NFL, Sylvia had learned the art of negotiation by borrowing a page from her husband’s playbook. A soft-spoken leader by example on the playing field, John Mackey had emerged as the outspoken ringleader of the fledgling players’ union at the bargaining table. Elected the first president of the modern NFL Players Association in 1970, he organized a strike and led the union through bitter negotiations to win an improved pension and benefits package, then sued the NFL for the right of players to bargain with any team and become true free agents once their contracts expired. By taking on the NFL’s imperious owners and beating them at their own game, he cleared the way for the players who followed him to become rich. Unfortunately, Mackey and his peers never got to reap the rewards of the multibillion-dollar monopoly they helped build. Salaries were low—players earned less in a full season than today’s stars can make in a single series of downs—and careers short. Even today, the average NFL career lasts barely three years; football remains the only major sport that does not have guaranteed contracts that pay off in the event of career-ending injury; and an alarming number of players limp away with physical infirmities and with cognitive impairments that might not show up until years later. For retirees from Mackey’s generation, those consequences were here now.
Sylvia Mackey knew better than to apply for disability benefits from a league notoriously stingy with pensions related to football’s occupational hazards. She considered filing a worker’s compensation claim, but the futility of that was clear to anyone following Mike Webster’s tortuous case. Now that her husband could no longer advocate for himself, Sylvia found another way to appeal to the NFL for help on his behalf. She took her case to Tagliabue and then to his successor as NFL commissioner, Roger Goodell, to win support from the owners her husband once battled. Then she pressed the Players Association for months until the union her husband once led finally acquiesced.
The night they met, Sylvia told Eleanor that the details were currently being worked out on a program to help take care of retirees suffering from dementia. She said she was pretty sure that the NFL would do the right thing and put it in place soon. In the meantime, the women exchanged phone numbers and e-mail addresses, and soon became a support group of two.
A few months later, the league adopted the 88 Plan, named for the number John Mackey had worn on his jersey. The program would provide up to $88,000 per year for institutional care and up to $50,000 per year for home care. Sylvia and Eleanor were among the first to apply, and their husbands became the first two recipients.
The NFL made it clear that the 88 Plan was in no way an admission that concussions sustained on the football field were linked to dementia. Rather, the program was promoted as simply an effort to help care for the growing population of aging retirees suffering from dementia. Sylvia had never pressed the NFL to admit to a link, though she certainly had reason to suspect that football was the likely cause. All she had to do was think back to those fall Sunday afternoons she spent watching the Colts and remember the way her husband played the game.
The NFL had never seen a receiver quite like John Mackey. He possessed the strength of a lineman, the speed of a sprinter, the hands of a surgeon. Whenever he caught a pass, defensive backs would cringe at the sight of this six-foot-two, 225-pound locomotive, ball cradled under one of his massive arms, rumbling toward them like a runaway train. Rampaging around, over, and through would-be tacklers, Mackey revolutionized the position of tight end. To a position previously reserved for lumbering blockers, he brought the electrifying ability to break open a game with a single rousing play—like the pass he grabbed, after it tipped off two sets of fingertips, and then converted into a record seventy-five-yard touchdown to help lead the Baltimore Colts to their first Super Bowl title in 1971. The same breakneck style that made him history’s greatest tight end may also have made him football’s most famous dementia victim. In Sylvia’s mind, the touchdown that stuck out most did not occur in the 1971 Super Bowl, but rather in a meaningless exhibition game six years earlier. She was haunted by the frightening image of him galloping across the goal line, crashing headfirst at full speed into an unforgiving goalpost, then staggering in dazed confusion to the opposing team’s huddle and then over to a seat on the opposing team’s bench. That concussion was so spectacular that it led the NFL to move the goalposts back off the goal line deep into the end zone. Whether it also led to her husband’s early onset of dementia is something Sylvia could only suspect.
John was barely into his fifties when Sylvia began to notice signs that something was wrong with him. His memory was becoming spotty, his judgment impaired, his moods volatile. Always a tireless ball of energy who inspired teammates with his work ethic, he was now lying in bed for hours on end just staring at the Weather Channel. Once so articulate a union leader that he could go jaw to jaw with arrogant NFL owners and rally striking players with spellbinding speeches, he was now often at a loss for words.
By the time h
e was sixty, his symptoms had intensified to the point where Sylvia was worried enough to take him to a neurologist. The doctor diagnosed frontotemporal dementia, a rare degenerative brain disease that starts in the frontal lobes. The diagnosis could explain his behavioral and personality changes as well as his lapses in judgment, especially when it came to business decisions. That was small consolation to Sylvia, who now realized that nobody could help her husband and that his condition was just going to deteriorate. The only saving grace was that John seemed completely oblivious to his fate.
He still loved being John Mackey, football hero. He still loved going out in public and signing autographs for adoring fans. He would proudly flash his oversized Super Bowl ring and Hall of Fame ring. And he would proudly tell his favorite story—about his record seventy-five-yard touchdown in the Super Bowl—over and over again to the same fan without realizing he’d already told it. He could remember the 1971 Super Bowl like it was yesterday, but he couldn’t remember what he did yesterday. He could pick out old teammates from highlight reels, but he couldn’t recognize them when he ran into them at alumni events. He could spend hours playing with his grandchildren, but he couldn’t remember their visit minutes after they’d left.
Even more troubling than the memory problems were the personality and behavioral changes. Once calm, measured, and mild-mannered, he now had a hair-trigger temper and would sometimes scream and curse at his wife in public. At times he was so explosive that he scared even Sylvia. This wasn’t the man she had married four decades before. They had made the perfect All-American couple—the handsome football star and the beautiful fashion model—always the envy of the eyes watching them dance at galas as if they were Fred and Ginger. The advent of John’s symptoms changed all that. At first, they irritated his wife and strained relationships with his grown children. When the diagnosis came, it brought understanding and compassion. Sylvia missed the man she married, but she stuck by the man he’d become. She didn’t blame him for the outbursts, the insensitivity, the ugly words—she blamed the disease.
Getting others to understand was another matter. John’s paranoia made him suspicious of people, sure that they were trying to steal his possessions. A few years after the diagnosis, John and Sylvia were traveling to an autograph-signing event when his Super Bowl and Hall of Fame rings set off an airport metal detector. He refused to remove the rings, his most prized possessions. When two armed security guards moved in and grabbed him by the arms, he elbowed his way past them and marched toward the gate. It took four guards to wrestle him to the ground while Sylvia screamed, “Don’t kill him! Please don’t kill him!” The sight of her husband handcuffed, confused, and agitated, coupled with the realization that he could very well have been shot to death, left Sylvia shaken. Life would never be the same. John already needed round-the-clock monitoring, the family’s only respite coming when he was at an adult daycare center. Soon he would require full care in a nursing home.
Sylvia glimpsed that sad future on the winter day in 2007 when she brought John to visit Ralph Wenzel at the Annapolis assisted-living facility that Eleanor had recently moved her husband into. The two men had played together on the same offensive line with the 1972 San Diego Chargers late in their careers, but the onetime teammates now had no memory of that or of each other. Even after they were reintroduced to one another several times, neither could remember the other’s name.
“Do you remember playing with Ralph at all, John?” Mackey was asked.
“Who’s Ralph?” Mackey replied.
“The guy sitting to your left,” he was told.
Turning toward Wenzel, he said, “You’re Ralph?”
“Yes.”
“I’m John Mackey,” he declared, staring blankly ahead.
Sylvia and Eleanor looked at each other and smiled sadly. They would exchange a lot of knowing glances throughout the visit. During lunch, John used a spoon to drink his coffee, thinking it was soup, while Ralph had to be fork-fed by Eleanor. John uttered non sequiturs like “I got in the end zone,” while Ralph could only mumble a few nonsensical syllables. Ralph, his head drooping, was unresponsive for much of the visit. Eleanor tried to jog his memory by pointing to a black-and-white photo of the Steelers teammate who had been his best friend. Ralph couldn’t remember the man, and Eleanor couldn’t help feeling she was losing a little more of her own best friend.
When Ralph’s symptoms had first begun to appear, Eleanor hadn’t realized that this was a sign that her husband was slowly slipping away. She put his bout of depression down to a job loss. She teased him when he misplaced his wallet or forgot to transfer money from the couple’s savings account to cover checks he’d written—he was in his early fifties and she figured the memory lapses were just a sign that he was hitting middle age. She did think it was a little strange when he began to have problems making simple decisions without her help, like picking something to order at restaurants. But all the changes were too subtle to set off any alarm bells.
Though he never said anything to Eleanor, Ralph knew there was more to those subtle changes than she suspected. The short-term memory lapses had been worrying, but then he had an experience that convinced him that something was going very wrong with his brain. As football coach for a private school in Washington, D.C., he would start each practice by describing the play his kids would be working on. One day, as he started to explain what they would be doing, one of the players stopped him and said, “We did that yesterday, Coach.” At first Ralph didn’t believe them. But when they repeated, almost verbatim, what he was planning on saying this day, Ralph was shocked. He knew they were right. But he still couldn’t remember anything from the day before. He never told Eleanor. But as time went on, his memory lapses became more frequent and profound, and she realized that it was time to take him for an evaluation.
They sat across from the neurologist as he questioned Ralph about his symptoms. The doctor quickly zeroed in on the memory problems and asked how long Ralph had been experiencing them. Ralph told him about the episode with the high school kids, which had happened almost five years earlier. Eleanor was stunned. She couldn’t believe that Ralph had been able to compensate and to cover everything up for so long. Then the doctor moved on to Ralph’s concussion history.
“Have you ever had a concussion?” the neurologist asked.
Ralph laughed and then responded, “More than I can count.”
“Were you ever completely knocked out?”
“Oh, yeah.”
“How many times?”
“I really don’t remember how many times. But it was a few.”
“Were you ever knocked out and, when you came to, you really didn’t know where you were or what you were supposed to be doing or what had happened?”
“Oh, yeah. I remember a game where I got knocked out. When I came to, I got up and I got back on the line. I was in the next play, and when I was supposed to run, I ran in the wrong direction. After that they pulled me off the field.”
Ralph was diagnosed with mild cognitive impairment and the couple was warned that there was a good chance it could progress to Alzheimer’s disease as time went on. Eleanor was surprised that someone as young as Ralph could be in the early stages of a disease that had struck no one else in his family. Both his parents, who were in their eighties, were still mentally sharp, as was his older brother. The neurologist suggested that the cognitive impairment might be related to Ralph’s years playing football: “It seems to me that we’re dealing with some damage that happened as a result of the head injuries you had in your life.”
As the neurologist was finishing up, he asked Ralph, “Do you understand what is happening to you?”
“I sort of do,” Ralph replied.
“What’s it like?”
“I feel like there’s a door in my head that closes. And it closes when it wants and it opens when it wants. And I can’t control that.”
As time went on, Eleanor saw that the door in Ralph’s head was closing mo
re and more often. When it was open, she’d see glimpses of the man she’d fallen in love with two decades before, the shy, quiet guy with the dry sense of humor who would casually drop a one-liner in the middle of a conversation that would send everyone into fits of laughter. She’d been captivated by that sense of humor from the first night she met the big, burly bear of a man at a Halloween party at the Indian reservation where they’d both been working, he as a thirty-something coach and teacher, she as a pharmacist just out of college.
They’d connected instantly and soon became inseparable. Over the years they zigzagged around the country, moving any time either of them got a particularly good job offer. Though they socialized, they were happiest when they could spend time alone together working on some domestic task. Cooking was something they both especially enjoyed sharing, and Ralph was always happy when he could create a new culinary masterpiece.
Ralph’s decline was mirrored in the meals he cooked. Often when Eleanor was working late, he’d have a sumptuous repast ready when she walked in the door. But as his cognitive skills declined, he started to have problems figuring out meal plans. He’d greet her enthusiastically with some steaks he grilled, but there’d be nothing to eat with them. He’d gotten so absorbed cooking the meat that he’d just forgotten to make anything else. Eventually Eleanor took over all the cooking. She felt a sadness descend each time she walked into the kitchen to cook a meal, remembering that this was something that she and Ralph had delighted in and now she was preparing food just to keep them fed.
Within a few years, Eleanor had to hire a “housekeeper” to look out for her husband when she wasn’t around. Over the course of seven years, the housekeeper went from a few hours a day to full-time. It was hard, but they seemed to be managing—until late in 2006 when the couple took a trip to the West Coast to visit relatives. Out of the familiar surroundings of home, Ralph seemed to deteriorate overnight. He became obsessive and paranoid and started having frightening delusions. When he became violent, threatening to hurt both Eleanor and his father, the family took him to a local hospital where doctors worked to calm him down enough to allow the couple to fly back home. One day, while Eleanor was waiting for Ralph to stabilize, a friend brought over a newspaper story that had appeared on the front page of The New York Times describing football-related dementia and a crusader who was trying to bring the issue to the public’s attention. Eleanor made a mental note that she would contact both the crusader, Chris Nowinski, and the Times reporter, Alan Schwarz, when she and Ralph got home.
The Concussion Crisis Page 30
