A Trailblazer's New Path

Sylvia Mackey noticed the first ominous signs seven years ago. Her husband cashed a $10,000 check he inexplicably was carrying in his wallet, then gave half of the money to an acquaintance he hadn't seen in four decades.

"I thought that was strange," she says in what can only be regarded as polite understatement. "Someone gave him a sob story and he volunteered to lend this person $5,000 -- cash."

Soon, the symptoms she saw transcended excessive generosity: Her husband was lying in bed for hours at a time, engrossed by the Weather Channel; leaving business proposals sent to him by associates unopened; sinking into hollow, cliche-filled conversation.

These were extraordinary changes in her husband, John Mackey, a man of mammoth proportions, who while playing for the Baltimore Colts became the most feared tight end in professional football, stood up to arrogant owners and fought discrimination when few were.

The changes at first infuriated Sylvia Mackey.

"You're angry at him for beginning to act stupid, or not normal," she says. "I'm thinking: 'He has nothing to do. Why is he so lazy? What has happened?' "

It wasn't until much later that Sylvia Mackey learned that her husband has a relatively rare form of dementia, a degenerative mental disease.

Watching John Mackey scribble autographs recently during an appearance at a Borders bookstore in Towson, it seems inconceivable that anything about him has deteriorated: At 62, his 6-foot-2 frame is still as straight as a Virginia pine, he has hands as steady and sure as when he was hauling down passes, and his weight is 10 pounds below his high school playing days.

When he speaks, though, it becomes apparent something is not quite right.

"Don't forget," he admonishes a stranger, "I'm sending you out for a touchdown."

Asked if he is proud of the 75-yard touchdown pass he caught to help the Colts win Super Bowl V in 1971, Mackey replies in a voice that is vigorous in tone but empty in content: " 'I' means you can't see. 'Me' means you're missing everything. But when you play together as a team -- T-E-A-M: together everyone achieves the mission, or more. And 'we' means win and enjoy."

He offers, without prompting, "Physical age is how you take care of yourself, and spiritual age is how you think. So I say, chronological doesn't count, physically 32, and spiritually, a kid at heart."

Book just published

While there is never a good time for such things, the timing of Mackey's illness seems especially cruel, because it has denied him the enjoyment from the publication of Blazing Trails: Coming of Age in Football's Golden Era, a book chronicling Mackey's childhood, the racism he endured and his extraordinary college and professional football accomplishments.

The book, published in late August, is the culmination of a dream Mackey had for two decades.

"He's been trying to do a book for years," says Sylvia, his wife of almost 40 years. "He wanted to get the story out because he thought it's inspirational, and important for people to know all aspects of him and football, and how it has changed."

John Mackey still relishes the limelight, evident by the disarming grin that sweeps across his face as he shows off to admiring fans his oversized Super Bowl ring, or gives autographs.

He inscribes his name, followed by "88," then, on a second line: "H.O.F. -- 92."

For Mackey aficionados -- and there are many, even though it's been 31 years since he last walked onto a football field -- the code is easy to decipher. The "88" is the number that was emblazoned on his blue and white jersey for nine years while playing for the Colts; the "H.O.F. -- 92" signifies the year he was inducted into the NFL Hall of Fame.

But he remembers so little else. He doesn't recall seeing his grandchildren moments after visiting with them, or the names of persons to whom he's been introduced five seconds earlier, or the destinations and purposes of trips despite frequent reminders, or even most of the contents of his book.

Sylvia Mackey regards Blazing Trails as a legacy for the public, so that people "know how instrumental he was in making change," as well as for her family, which includes two daughters and a son, all grown, and five grandchildren.

"They have a lot to be proud of, no matter what condition he ends up in," she says. "And they can hand that book down forever and a day."

For all it does cover, Blazing Trails does not refer to Mackey's disease, and only his closest friends and family have known of his illness.

"Here is a fellow who five years ago was a different person," says Pete Wright, a corporal with the Howard County Police Department who frequently chaperones Mackey to autograph sessions. "Now, he's more in the past."

A slow deterioration

The Mackeys believed life after football would be quite different.

Indeed, it was at the beginning.

Upon retiring at the end of the 1972 season with the San Diego Chargers, John Mackey was involved with several business deals, and Sylvia was a successful model, providing the couple with a comfortable if not lavish lifestyle in California.

Slowly, though, Mackey grew indifferent to his business relationships and the family's finances, until he neglected them altogether. The family increasingly depended upon the money Sylvia earned as a model and in commercials.

Among those she modeled for were Vogue magazine and the catalogs for Sears and J.C. Penney. She also appeared in numerous commercials for McDonald's, Nestle Tea, 7UP and communications giant AT&T.

The money was good but not dependable, ranging from $90,000 one year to $11,000 in another. Nor did modeling and commercial work provide benefits, like medical insurance.

Sylvia Mackey at first tried nudging her husband. "I said, 'What are you doing?' And he kept saying, 'Oh, I'm going to a get a job.' "

He never did, so five years ago, at the age of 57, Sylvia Mackey began a second career as a flight attendant for United Airlines to help make ends meet.

It was at this time that her husband's behavior began changing more noticeably: John Mackey's memory was fading; he was often lethargic; and when he was busy, it usually was with the trivial.

One day Sylvia Mackey returned home to find her husband anxious to show off a tiny shelf he had constructed.

"I'm thinking a big businessman like you doesn't get a joy out of putting this little shelf together and showing it to me like he's so proud," she recalls. "It really wasn't cute, or pretty or anything."

Another, more troubling, trait was also emerging: John Mackey's tone became threatening -- "violent" in the words of his wife. Those eruptions for a time severed the relationship with his youngest daughter, Laura, now 35.

"He used profanity. He called me a bitch," she recalls. "I wouldn't stand for it from anyone. I was shocked that he would use that type of language with me, because I was always the baby to him."

She didn't speak with her father for two months.

Back to Baltimore

Sylvia Mackey was confused by her husband's erratic behavior and intemperate outbursts.

It wasn't until after the Sept. 11, 2001, terrorist attacks, when she was laid off for three months from United Airlines and had time to observe her husband around the clock, that she was gripped by alarm that he was seriously ill.

Her fears were confirmed shortly after by neurological specialists at the University of California at Los Angeles, who diagnosed John Mackey with frontotemporal dementia.

The disease, the cause of which is not certain, is relatively rare, incurable and typically worsens with time. It affects one's ability to think, and serious changes in personality and behavior and significant memory denigration are common.

"After that diagnosis, I realized that he wasn't going to be a major contributing factor in our financial affairs anymore," Sylvia Mackey recalls thinking. "I had to do everything."

Even with her husband's pension from playing in the NFL -- about $1,900 a month -- and the money he earned from occasional personal appearances, she knew that in time their savings would be wiped out.

"I realized, to make life easier, we had to get out of California," she says. "I cut our living expenses by more than half. And I thought, what a more fitting place to live than Baltimore. It's like coming full circle."

She moved them to Baltimore last year, purchasing a condominium in Cross Keys.

Some stick by

Sylvia Mackey rarely expresses sorrow, but sometimes the regret can't be concealed.

"It's so sad," she says, pausing for a long second. "There is nothing that can be done to treat it, only medications that can be tried to slow down or temporarily arrest a certain behavior. I read about things that look hopeful ... but the research is 10 years away."

A common symptom of the disease is becoming obsessive, and Mackey has become fanatical about his physical health. After ballooning to more than 300 pounds after retiring from football, he's down to 207 now, less than he weighed in high school.

"I don't want to become a sumo wrestler," he says.

And he's just as likely to spontaneously tell people about the merits of red wine.

Never a drinker, Mackey now enjoys a daily glass after hearing it was good for you. "Whenever you're in your 60s, it's red wine," he says, "because the NFL doctors said it gets iron to your heart and keeps you above ground. ... Never liquor and never beer."

Because her job requires her to be out of town for days at a time, Sylvia Mackey has developed a routine for her husband, one his obsession with health has helped.

She often leaves for him a plate of cooked sea bass, soybeans, bananas, orange juice and soy milk. "He can eat the same thing every day; it doesn't bother him at all," she says. She doesn't leave the car with him, but Mackey is content to take walks in the neighborhood when the weather is nice. A few friends help out by checking in on him when Sylvia is out of town.

Mackey is oblivious to his illness. "You look back on what he was, but the thing is, it's never going to hurt him," his wife says. "He's as happy as a kid."

Reactions from others to the changes in him, however, vary widely, both within and outside the family.

Some friends, like Corporal Wright and former teammate Lenny Moore, help watch after and entertain Mackey.

But others, once close friends, don't call anymore.

Sylvia Mackey insists she doesn't fault them.

"I don't think people are consciously saying, 'I don't want to be around him,' " she says. "It's just that ... what are they going to do? The conversation will be over in three minutes. They ask, 'Hey, how are you doing?' and he says, 'I'm on offense. I'm blocking for you.' "

Daughter Laura doesn't quite buy her mother's claim of charitable understanding.

"The hardest part is not necessarily who he is . . . [but] the way other people react," she says. "It's amazing who your friends are when you are doing well, and who they are when you are sort of down and out.

"A lot of people have turned away. It doesn't hurt [my father], but I can see how it has affected my mom."

Mackey's annual invitation to play in the Bobby Mitchell Golf Tournament doesn't arrive anymore. When his name was mentioned at the podium at a tournament banquet in July 2001, Mackey ran onto the stage and would not leave until the organizers found a way to lead him off. Later, he insisted on clutching a pear-shaped canvas bag during a group photo of Hall of Fame inductees attending the golf tournament.

"He just keeps junk in it, but he had to hold onto this bag that he is possessed with," Sylvia Mackey says. "They told him, 'No, John, we'll hold it,' and somebody reached to take it from him. He said, 'Get the [expletive] away from me.' That was unnerving for them. ... So here he is in the picture with all the Hall of Famers, and he's standing up holding this bag."

And while the Mount Washington Tavern enjoys the times Mackey dines there and entertains customers by freely giving autographs, two other restaurants in Baltimore have asked him not to return.

"He might go up to the same table five times and ask them if they wanted an autograph," his wife explains.

Hard on family

While those moments at times are awkward and embarrassing, they are not the worst of Mackey's personality and behavioral changes. When irritated, he still becomes belligerent, sometimes cursing at his wife in public.

But Sylvia Mackey professes neither to be embarrassed nor hurt by her husband's unpredictable and insensitive conduct.

"I don't care who hears it," she says. "It's the disease. I don't owe them an explanation or anything."

The illness has affected the three Mackey children differently as well.

Son John Kevin Mackey, who lives in Atlanta with his wife and three daughters, is "very understanding" and supportive, his mother says.

Laura, who once displayed "horrible anger" toward her father, patched up their differences after the diagnosis, and has plans to relocate to Baltimore from California to help care for Mackey.

"It made me less angry at him and more understanding, knowing it wasn't his fault," she says. "I'm more compassionate of him."

Another daughter, Lisa, has had trouble adjusting to the changes in her father.

It has been especially hard, Lisa Mackey says, because she was always the closest to her father. She fondly remembers the days when she would dash into the room and jump onto her father's lap and they'd sit there talking.

She acknowledges that she doesn't visit with her parents as often as "perhaps I should," but attributes that as much to her family's schedule as to uneasiness with her father's illness. She is employed as a reading specialist at Bladensburg Elementary School, and her two sons are involved with youth sports.

But she admits it has not been easy adjusting to the radical changes in her father.

"He's like a totally different person," she says. "The hardest thing to accept is his overall behavior around everybody. It bothers me more than it does the others. ... I just get nervous. I don't feel comfortable being around him by myself. His behavior is like a time bomb."

'Whatever it takes'

By all accounts, John Mackey has never physically harmed anyone, but there is the constant dread that someday that could change, and perhaps require him to be placed in a facility where he would receive around-the-clock supervision.

"He's talked a good game, but John's never been violent," his wife says. "But I do worry about it. I have a feeling that there's going to be an incident that's going to make me realize that I have to do something else."

As a football celebrity, Mackey always received preferential treatment, "so now, if we have to stand in line, he becomes belligerent," Sylvia says. "He becomes very determined. It's me, me, me -- nobody's going to tell me what to do." She carries a letter from a psychiatrist so that airport security treats her husband gently, "or he might go off."

Friends say Sylvia Mackey has been remarkable in caring for her husband while also holding down a fulltime job with United and still accepting occasional modeling assignments.

"She has never complained," says Wright. "She makes the most out of a tough situation. She does whatever it takes."

Her daughter, Laura, thinks her mom "needs some support right now," but adds that Sylvia has never asked for assistance.

"I ask, 'Mom, what can I do to help?' but I'm still waiting for the answer," she says.

Sylvia's response is stoic. "It's my burden. Everybody's got their own problems," she says.

But clearly she sees herself as up to the task. "I read where 43 percent of the caregivers die before the patient dies," she says. "I'm not going to be one of those 43 percent. I love life, I have a good time, and I'm happy. I know what to expect."

Her only hope is for a cure, though she acknowledges: "That's not going to happen. But that's want I'd want. I don't want to see him go downhill."

While others try to adjust to the changes in John, she somehow sees the silver lining.

"I'll tell you one thing," Sylvia says, "I've heard, 'I love you' more in the last two years than I heard in the first 38 years."

Book took a team

The book Blazing Trails: Coming of Age in Football's Golden Era (Triumph Books, $24.95) is described by the publisher as John Mackey's autobiography.

That's something of a stretch, even for the as-told-to genre often used for books about athletes. Mackey's mental illness prevented him from writing or telling much of his story, and the book covers only half his life.

Blazing Trails was written by Thom Loverro, a sportswriter with The Washington Times, and is principally the result of a collaboration with Mackey's wife, Sylvia. Much of the book is based on notes taken by the Mackeys over the years, old newspaper clippings and records, and interviews with Sylvia Mackey.

"Thom talked to John at a point where he was sort of aware of what he was doing," she recalls, but then "John reached a point where he could no longer really do the interviews.

"Thom and I did all of it through what I told him over the last two years. He would call me, we would talk. I'd send him articles. That's how we put most of it together."

Still, the book provides a glimpse into Mackey's thoughts on a number of issues:

On signing with the Colts: "I desperately wanted to be drafted by the New York Giants. ... I was crushed when they passed me over."

On Baltimore fans: "There were no fans, perhaps in all of sports, like Baltimore Colts fans ... "

On Johnny Unitas: "The greatest quarterback to play the game ... "

On Colts coach Don Shula: "Shula was an excellent coach. He taught us to do everything we could to take advantage of and find the weakness in the players we were going up against. He also told us that you must go back and study yourself to find your own weaknesses."

On pro football's team owners, after he became president of the players union: "The owners clearly did not realize that this was a different time for the union. They figured we would just buckle and sign what they wanted. But we didn't, and that's why I led the players in a walkout ... "

On being inducted into the Pro Football Hall of Fame: "It was my time in the sun, and my feet were on the ground, but my head was in the clouds. ... It was that kind of day, to celebrate not just what I had accomplished, but how I did it as well, with the life lessons of honesty and integrity - and color blindness - that I have learned at home from my parents, the lessons I have tried to pass on to young men and women."

On winning the Super Bowl: "I had finally won the big one. No matter what else happened to me, I would always be a Super Bowl champion."

On the end of his career: "I'd like to think that I gave as good as I got in the game, that I had contributed as much as I had received from football."