THE BATTLE OF HIS LIFE

BOB WATERS IS LOOKING FOR ANSWERS TO A DEADLY ILLNESS AFFLICTING FORMER 49ERS
August 23, 1987

Bob Waters has reasons good and bad to recall his years as a San Francisco 49er quarterback, and so at lunch one day with his football staff at Western Carolina University in Cullowhee, N.C., he started telling some stories. "You fellows may remember Leo Nomellini," he began. "He was a great football player. But there was one thing old Leo was really sensitive about, and that was his wrestling." Waters leaned back in his chair, smiling at recollections of the Hall of Fame lineman. "He wrestled professionally in the offseason, and he couldn't stand for anyone to make fun of that sport. The rest of us, we had sense enough to keep our mouths shut, but there was this rookie offensive lineman in camp one year—I can't even remember his name—who walked right up to Leo and said, 'Hey, Leo, that rasslin' is all a big fake, isn't it?' I guess you can imagine what kind of practice that kid had playing opposite Leo Nomellini that afternoon. I don't believe we ever saw him again."

Waters leaned forward to sip a soft drink through a straw. "You know, I played one year with Y.A. Tittle, my rookie season in 1960, before they traded him to the Giants. He and John Brodie and I were the quarterbacks. Well, we had this halfback, Ray Norton, who'd been a world class sprinter at San Jose State, and I mean he could really fly. The bet in practice was who could throw a ball so far that Norton couldn't run under it. I don't think any of us threw one far enough, but Y.A. liked to say I came closest. Old Y.A. was out here last year visiting from California, and he told my players, 'That's right, old Bobby could throw that ball 80 yards or more. Trouble is, he threw it 80 yards on every pass play. Made no difference if it was a simple out pattern, a screen, a swing or what, Bobby'd crank up and throw it 80 yards.' " Waters was laughing now. "That, of course, is a slight exaggeration."

He is Bob Waters now, head coach for the past 18 seasons at Western Carolina, but back in the early '60s he was "Bobby" Waters, a lanky youngster from Presbyterian College in Clinton, S.C. He had a strong arm, and he could run a little, so when 49er coach Howard (Red) Hickey decided after the second game of the 1961 season to junk the conventional T and operate exclusively from a shotgun formation triggered by alternating quarterbacks, the kid backup got his first heady taste of stardom in the big time. Tittle was gone by then, the victim of Hickey's irrational faith in the new offense, and the other two quarterbacks, Brodie and rookie Bill Kilmer, were pretty much one-dimensional players in the shotgun: Brodie would always pass and Kilmer would usually run. It was the more versatile Waters who kept the defenses guessing.

On successive weekends that year the Niners beat the Lions 49-0, the Rams 35-0 and the Vikings 38-24. The team was 4-1 going into the Oct. 22 game with the Bears in Chicago, and it was leading the league in points scored (an average of 33.4 per game) and in both rushing and passing yardage. But Clark Shaughnessy, who had been scouting the 49ers for Chicago, had recognized that by plugging the middle with a linebacker, the shotgun could be defused. The Bears won 31-0, holding San Francisco to six first downs and 132 yards of total offense. The shotgun was finished, except as a diversion, and so, essentially, was Waters.

He held on until the '64 season, when a severe fracture of the right arm, the last of a series of injuries, hastened him into coaching. But Waters has few regrets about his playing days. They were good times. He made lasting friendships, and on one warm summer night during training camp he met Sheri Gidley of Lafayette, Calif., who has been his wife for 25 years. Like many another former pro, the 49-year-old Waters looks back on his playing years with a mixture of amusement and pride. The memories are good. They are also haunted.

When Waters began having trouble with his right arm about five years ago, he was certain it was just the old football injury acting up. He had a plate and a screw in that arm, and he often felt pain there. But this was different. He was getting severe cramps, and there were days when the arm would twitch uncontrollably. His fingers got so clumsy he couldn't even handle a screwdriver while doing a household chore. His team physician, Dr. Walter Durr, suggested he consult a neurologist. The initial diagnosis was that he was suffering from a form of neuropathy, a malfunctioning of the nervous system. His condition worsened. In February 1985 he was referred to Dr. Walter G. Bradley, a prominent neurologist at the University of Vermont. Bradley's diagnosis was ominous. Waters had amyotrophic lateral sclerosis (ALS), the paralyzing and usually fatal neuromuscular disorder commonly known as Lou Gehrig's disease, so named because on June 2, 1941, it killed the Yankee first baseman. It is a disease for which no cure has been discovered and no cause determined, a mysterious and relentless killer. It is also an especially cruel affliction because, in the vast majority of cases, the victim's mind is unaffected and he remains conscious and aware to the very end of his own suffering. He becomes, in effect, a prisoner in his own deteriorating body. Bradley told Waters he may have only two years to live.

Waters accepted the diagnosis, but not the prognosis. One of his staff assistants at Western Carolina had seen a television program that very week about new discoveries in the treatment of ALS that had been made at Baylor College of Medicine by Dr. Stanley H. Appel, chairman of the neurology department.

Waters applied for and was accepted into Appel's program, which initially involves treatment with the drug Cyclosporine, an immune system suppressant first used successfully with organ transplant patients. "We think ALS is an autoimmune disease," says Appel. "It's the body attacking itself and its motor neurons." An autoimmune disease may be defined as one in which the body's own immune system (white blood cells, phagocytes, etc.) attacks healthy cells. The autoimmune theory is but one of many put forward in continuing ALS research, but Cyclosporine treats only the immune component of the disease. "It's a little like taking an aspirin or maybe a shot of Scotch to cure a stubbed toe," says another ALS specialist, Dr. Forbes H. Norris of San Francisco's Pacific Presbyterian Medical Center. "You feel better, but you've still got the problem."

The disease can kill within a year, although some patients have lived as long as 20 years with ALS. Death within 3 to 10 years is, however, considered typical. Waters's condition has not markedly deteriorated in nearly a year, and his morale is high. He is encouraged by this apparent stabilization and buoyed further by a determination to fight the killer rather than sit back, as many ALS victims have done, and wait for it to take him. "I'm approaching this from the aggressor's side," he says. "Not to be too dramatic about it, but I want to get it before it gets me."

Although he has lost the use of both arms in the two years since his disease was diagnosed, Waters continues to coach at Western Carolina. He was on the field with his players at spring practice, and he will be with them again this fall. His 110-78-6 record is the best in the university's history. During the 1986 spring practice, he called his players together to tell them he had a disease "that not a whole lot is known about." Then, in his firm coach's voice, he said, "I'm going to beat it."

"I believe he will," says quarterback Todd Cottrell. "He's a fighter." "He's an inspiration," says senior linebacker Everett Spellman. "We go into games knowing we're playing for a fighter. I think he's an even better coach now than he was before."

Waters has another motivation for attacking the disease. In the years since his retirement as a player, he has kept in touch with Len Rohde, a former 49er teammate who still lives in the Bay Area. Rohde was with Waters the night he met Sheri, and Waters was with Rohde the night he met his wife, Bev. Distance has in no way diminished their enduring friendship. And so, late last year, when there seemed no question about the gravity of his condition, Waters called Rohde to tell him he had ALS. "Bob, that's what Matt has," a stunned Rohde replied. Waters was flabbergasted. Rohde was talking about Matt Hazeltine, another and much more famous teammate. Hazeltine had been an All-America linebacker and center at the University of California. He had starred with the 49ers from 1955 through 1968, had played in two Pro Bowls and had been captain of the team for five years. Handsome and gregarious, Hazeltine was an immensely popular player both with the fans and his teammates. After retiring from football, he built a successful insurance business on the San Francisco peninsula. He stayed close to the team and was one of current head coach and team president Bill Walsh's best friends.

Waters called Hazeltine to commiserate with him and to compare notes. Hazeltine, he learned, had first experienced ALS symptoms in 1981. He, too, had suffered a loss of strength and coordination in the hands and arms. He had been treated first at the Palo Alto Medical Center. Then after his diagnosis in April 1983, he was treated by Norris, the founder and chief physician of the ALS Research Foundation at the Pacific Presbyterian Medical Center.

Hazeltine, like Waters, had refused to indulge in self-pity. "Never once did he say, 'Why me?' " his wife, Deborah, recalls. But unlike Waters, Hazeltine was sinking fast. By December '85, he was confined to a wheelchair, and as the disease spread into his diaphragm, he had had difficulty breathing and speaking. Hazeltine and Waters agreed that it was an amazing coincidence that two members of the same team should contract a disease that strikes only 2 of every 100,000 Americans. Or was it something more than coincidence? They didn't know.

Then, on Dec. 2, 1986, Hazeltine called Waters with even more astonishing news. Yet another teammate, running back Gary Lewis, had ALS. And Lewis was already near death only four months after being diagnosed. Waters called Appel. Could there be some sort of common denominator here? Even a common cause? Appel thought it was worth investigating. "Clusters" such as these could be mere coincidence. Then again, they offered a rare chance for finding a possible cause or even a cure for the disease. A recent investigation of a cluster on the island of Guam, where ALS had spread at more than 50 times the U.S. rate, revealed that an amino acid in flour made from the commonly used cycad seed had led to ALS-like symptoms in laboratory animals. This was considered a significant, if not an entirely conclusive, breakthrough in ALS research, lending support to the theory, as advanced vigorously by Norris, that the disease is caused by early exposure to toxins. Other clusters in recent years—six patients in the Berkeley hills across the bay from San Francisco, four in two blocks of a Los Angeles neighborhood—have, however, cast distressingly little light on the ALS mystery.

But Waters was more determined than ever to get some answers. The disease was obviously picking on his old team, and this somehow gave it a more recognizable identity. It was not so much a terrifying unseen enemy now as a palpable opponent, one he might have a chance to defeat with his old quarterback's resourcefulness. On Dec. 8, six days after his conversation with Hazeltine, Waters called 49er general manager John McVay to ask for the addresses of players who had been with the team from the early '60s to the early '70s, players who had been contemporaries of the three ALS victims. He told McVay he wanted to inquire about any health problems they might have experienced over the years on the off chance that some common medical thread might be running through all of their lives.

Hazeltine and Waters had played together for five years. Lewis joined the team as a rookie in 1964, Waters's last season, so the three had had only one season in common. And yet they had all fallen ill at approximately the same time, some 15 to 20 years after their football careers were over. In his letter to the former 49er players. Waters wrote, "ALS is considered a rare disease. The occurrence of ALS in three teammates from a group of 48 people is far out of proportion to the national norm.... Hopefully, your response to these questions will help us take a giant step in discovering the cause of this cruel disease. I am writing with a sense of urgency, as Matt, Gary, myself and our families are struggling with time."

On Dec. 12, not quite five months after he had been diagnosed, Gary Lewis died. He was 44. He had been a San Francisco high school star whose dream it was to play for the 49ers, and he had lasted six seasons with them, gaining more than 1,400 yards. Waters was saddened by this all-too-sudden turn of events. He could also hear the clock ticking. And then his old team threw him for a loss. The addresses he had requested would not immediately be forthcoming. Any questions regarding the medical history of its alumni, the 49er front office advised him, should be prepared by doctors, preferably in cooperation with team physician Dr. James Klint. The team was already being sued over health problems by one former player, longtime defensive tackle standout Charlie Krueger, and apparently it wasn't about to help yet another gather evidence against it. "It is the policy of the San Francisco 49ers to maintain all of our mailing list information in a private and relatively confidential fashion," team owner Edward DeBartolo Jr. wrote Waters on Jan. 2. "This list is not distributed for personal or commercial reasons."

Waters was enraged. What commercial reasons? All he was doing was trying to save his life. He didn't want money. He wasn't going to sue anybody. "This information is hardly sought for commercial purposes as implied in your January 2, 1987, letter," Waters wrote DeBartolo. He then turned to the NFL Players Association, the NFL Alumni Association and its San Francisco chapter for help and from their files obtained the addresses of some 140 former Niners. To them he sent a much more detailed questionnaire prepared by Appel. To date he has received about 100 responses, all of which are being reviewed by Appel. So far, the results have been inconclusive.

On Jan. 13, a month and a day after Lewis's death, Hazeltine died. He was 53. He had gone to his insurance office only the day before and had spent his time there saying goodbye to friends and business associates and dictating personal letters. "He just decided to go quietly," said Norris. "He had gotten to the point where he couldn't generate enough air to speak clearly. We could've put him on a breathing tube, but he didn't want that. I guess he'd finally lost patience with the disease. You know, one of the characteristics of this ALS thing is that it seems to take really nice people. Everyone has noticed that."

"Matt chose to live a quality life," said Deborah Hazeltine. "He did as much in his life as three people could've done. He made things fun. When I first heard about the disease, I was devastated. Here was this beautiful, healthy man...but Matt just saw it as a hurdle to be cleared. It was a hand he was dealt, and he was going to play it. He was never once despondent or depressed. He actually made things easier for me. I don't think there was a sad moment. We laughed a lot. There was no bitterness in that man. We traveled, did as many things as we could. We went to 49er games. Matt always wanted to be remembered as a 49er. I know if he had his life to live over again, he wouldn't have changed anything. He knew he was a good man."

Of the three old teammates, Waters alone was alive, his situation all the more precarious. But with the death of Hazeltine, the 49ers apparently recognized the error of their earlier ways and began casting caution aside and rallying to Waters's cause. It had been a long and bitter winter for them. Waters's brave fight was receiving sympathetic attention from the national media, and the team was looking like the villain of the piece. Two former players had died just a month apart from the same rare disease, and a third was holding out against it, seemingly without much help from his old team. Then, on Feb. 20, Krueger won a possibly precedent-setting judgment against the 49ers in the California Appeals Court. Krueger was entitled to damages, the court ruled, because team doctors failed to advise him of the severity of an injury to his left knee after a 1963 operation in which one ligament was removed and another was found to be irreparable. The team had, in fact, permitted him to play when it knew he was risking permanent injury. On June 3 the state supreme court rejected a 49er appeal and let the decision stand. It is now up to the San Francisco Superior Court to determine how much the team must pay its former player.

Krueger played for 16 years, appearing in the Pro Bowl twice. The team retired his jersey number, 70. But at age 50 he is hardly a walking advertisement for the NFL. In fact, he has trouble walking at all. He cannot climb a flight of stairs without experiencing acute pain in his injured leg, which in 1979 had to be surgically straightened, and he can stand comfortably for only a short time. His court victory has scarcely assuaged the bitterness and disillusionment he feels for the game he played so well.

"If I had it to do over, I wouldn't play," Krueger said this spring, sitting on a park bench near San Francisco Bay. He owns a liquor store across the bay in Concord and has been married for the past 14 years to the former Kristin Adler, daughter of the onetime General Director of the San Francisco Opera, Kurt Herbert Adler. Despite his imposing and battered body, Krueger is a soft-spoken and thoughtful man. "Pro football is such an overwhelming environment for a young player," he said. "Every day somebody new—coaches, the press, the guy on the street—is telling you who you are. It's a helluva way to live. America's game? Well, all I can say is, if Tom Landry is a Christian, then Lord help the lions. Bobby Waters is concerned that his illness may have something to do with football. I'm right along with him. Hell yes, I'm concerned."

So are the 49ers, particularly since the appeals court ruled in the Krueger case that even though DeBartolo didn't buy the team until 1977, he is still legally responsible for the football-related disabilities of players whose careers ended before then. The ALS deaths and the Krueger case have been sorrowful experiences for a team that, save for the brief and stormy stewardship in the late '70s of general manager Joe Thomas, has prided itself on taking care of its own. (Thomas had alienated 49er alumni by removing photographs of such Niner heroes as Hugh McElhenny, Joe Perry and Tittle from the team offices and by generally banishing the past.) Walsh and McVay had worked hard to bring the old boys back into the fold. And they were succeeding until these recent setbacks. Waters has assured the team he has no intention of taking it to court. All he wants is any medical information that might yield some clues to his dilemma. Was there some medication, for example, that he and his two departed teammates might have taken in common? Waters had requested all of his medical records, but the 49ers have thus far been able to supply only those dealing with his injuries on the field. The search for more complete information was further complicated by the absence of Dr. Lloyd Millburn, the team doctor in Waters's playing years, who returned recently from a seven-month trip sailing around the world in a private boat. In the meantime, says McVay, "We're turning this place upside down trying to help Bob. We're doing whatever we can, but it's hard to know just what to do. It's a terrible situation."

What the team has done is cooperate both personally and financially with the local alumni chapter in raising money for ALS research. At the 49ers' request, NFL Charities has agreed to donate $125,000 over the next five years to ALS research—$100,000 to Appel and $25,000 to Norris. The current 49er players have turned over to Appel $20,000 collected from fines. Some $64,000 was raised for Norris's clinic at a golf tournament held in Hazeltine's memory in May. And on July 11, Waters was in San Francisco for an ALS fund-raising banquet given by the local chapter of the NFL Alumni Association. He was in the city for several days before and after the banquet, renewing old acquaintances and even paying a sentimental visit to Kezar Stadium in Golden Gate Park, where the team played when he was a 49er. "It brought back a rush of memories," he said. "Some good, some bad."

A crowd of more than 800 attended the alumni banquet—at $150 a plate—in the Fairmont Hotel. Walsh was an honorary chairman of the event, although he was not there. But the 49ers were well represented by both current and former players, including members of the "Million-Dollar Backfield" of the mid-1950s—Tittle, McElhenny, John Henry Johnson and Perry, all of whom are in the Pro Football Hall of Fame. Rohde introduced Waters and embraced him as he approached the podium. "I am in awe of this evening." Waters said, obviously touched. "I am in awe that so many of you are here. The people behind this didn't have to do it, but they did, and I thank them. I still believe we can win. I still believe we can find a cure."

"I'm proud of this," said master of ceremonies Wayne Walker, a former Detroit Lions linebacker who is now a San Francisco sportscaster. "I am proud that we are a brotherhood."

As that banquet so eloquently demonstrated, Waters's lonely struggle has not been without results. It has, in fact, brought national focus to a deadly disease that, says Norris, "lacks sex appeal" because it affects such a small percentage of the population. Actually, ALS has claimed some famous victims besides Gehrig—actor David Niven, jazz musician Charles Mingus, composer Dmitry Shostakovich, boxer Ezzard Charles, United States Senator Jacob Javits, General Maxwell Taylor, who died April 19, and playwright (The Solid Gold Cadillac) and biographer Howard Teichman, who died July 7. But it has never inspired much fund-raising zeal. Norris's clinic, which treats 300 to 400 new patients a year, operates on an annual budget of only $170,000. If, says Norris, ALS researchers had $25 million, "I'll tell you what we'd do. We'd cure it."

The 49er cluster has also put some ALS theories to the test. Can medication be at fault? Waters knows that he and the other Niners did use some of the same drugs. At least 75% of the players had injuries treated with the painkiller DMSO (dimethyl sulfoxide), which because of its quick-acting properties and dreadful odor, was then called "snake oil." Most of the 49ers took cortisone. One year Waters took the steroid Dianabol to help him gain weight ("I was always the skinniest 49er"), but neither Hazeltine nor Lewis tried Dianabol. There is, in fact, no medical evidence to show that any of these drugs has a connection with ALS.

No connection has been made either with the fertilizer Milorganite, but that product, to the understandable dismay of its manufacturers, has been much in the news in the 49er case. The team's practice field in Redwood City was fertilized in Waters's day with Milorganite, which is processed sludge sold by the Milwaukee Metropolitan Sewerage District. The Milorganite of that time was known to have a high content of the metal cadmium, and metal poisoning has long been suspected as a possible cause of ALS. It was reported by The Milwaukee Sentinel earlier this year that of the 155 employees of the Milwaukee Metropolitan Sewerage District who have died since 1961, two suffered from ALS. Dr. Benjamin Brooks, director of the ALS Clinical Research Center at the University of Wisconsin, has said that three of his patients used the fertilizer. And Krueger recalls ruefully, "We were in that stuff neck, arse and elbows."

But Dr. Leonard Kurland, senior consultant in epidemiology at the Mayo Clinic, in Rochester, Minn., cautions against putting too much stock in the Milorganite theory. Until more substantial proof is found, he says, "Let's stop beating on this company. The people in Milwaukee get more cadmium in their beer than in their fertilizer." And, says Lou Spadia, who became president of the 49ers the year after Lewis, Hazeltine and Waters played together. "If it's Milorganite, my whole family's in trouble. I used that stuff on my lawn from 1950 to 1976. It was my favorite fertilizer."

Bob Waters, Sheri and their two daughters, Kim, 22, and Mica, 18, live in a neat, sprawling house in the hills above the Western Carolina campus. Their son, Jeff, 24, lives only a few hours away in Charlotte. Waters's illness has drawn an already close family even closer. "I think our kids have grown these past few years because they've had to face things other kids haven't," says Sheri. "They know there may come a time when their dad won't be able to do anything for himself, when he won't be able to even talk, when he might die. They know also that handicapped people must go on with their lives, as their dad has. We really don't dwell on our problems, despite all the attention we've gotten recently. And it's wonderful that Bob is still able to work. Most people with ALS tend to stay out of the mainstream of life. Bob could never do that."

In fact, he is a busy man. Despite his disability, he personally recruited the 17 incoming freshmen who will play for Western Carolina this season. And he is busy now preparing for a difficult schedule that includes not only his Division I-AA Southern Conference opponents but also I-A powers Clemson and South Carolina. "This disease will take one's dignity away," says Waters. "I have seen people who can communicate only by blinking their eyes, so I consider myself one of the fortunate ones. I can't feed or wash myself, but I can walk, and I've got my family and my coaches. It's frustrating not being able to take care of myself, but I've learned to do what we coaches call 'sucking it up.' "

Hope and the search for answers have kept this courageous man vigorous and active. Since his condition has remained relatively stable for nearly a year, he may be one of those fortunate ALS victims whose disease has, in Norris's words, "burned itself out," which is to say he will get no better but he may get no worse for another few years.

Waters was sitting in his office at the Ramsey Center on campus a few months ago before a spring football practice. He seemed to take strength from the possibly impossible task he has undertaken. "You know, even if we find out that what happened to Gary and Matt and me has nothing whatever to do with the 49ers or NFL football," he said, "we will still have accomplished something, because we will have eliminated something. We will have eliminated one possible cause. That's research and discovery right there." Waters rose on legs still strong and walked to a window, where a shaft of thin spring sunlight cast him in frail silhouette. "I really don't want it to be football," he said finally. "No, I don't want that to be the answer." He smiled, aware of the irony of what he would say next. "Football, you see, has been my life."

PHOTOJOE McNALLY PHOTONFL PHOTOSALS HAS KILLED NINER TEAMMATES HAZELTINE (TOP) AND LEWIS. WATERS (BELOW, IN '63) IS THE LONE SURVIVOR. PHOTOVERNON J. BIEVER/NFL PROPERTIES[See caption above.] PHOTOJAMES DRAKE[See caption above.] PHOTOBILL BAPTISTAPPEL SAYS THAT THE DISEASE CAUSES WATERS'S BODY TO "ATTACK ITSELF." PHOTOMICKEY PFLEGERKRUEGER (NUMBER 70, IN 1970, AND NOW) WON HIS SUIT AGAINST THE TEAM. PHOTOWALTER IOOSS JR.[See caption above.] PHOTOJOE McNALLYWATERS HAS LOST THE USE OF HIS ARMS, BUT HE MANAGES TO GET ALONG WITH THE HELP OF GADGETS AND WIFE SHERI. TWO PHOTOSMANNY RUBIO[See caption above.] PHOTOJOE McNALLYWATERS CONTINUES HIS SEARCH FOR A WAY TO BRING SENSE OUT OF TRAGEDY.

HOLE YARDS PAR R1 R2 R3 R4
OUT
HOLE YARDS PAR R1 R2 R3 R4
IN
Eagle (-2)
Birdie (-1)
Bogey (+1)
Double Bogey (+2)