A FAMILY PROJECT : Ex-Football Star Charlie Wedemeyer Is Battling Lou Gehrig’s Disease

Much of Charlie Wedemeyer’s life revolves around the adjustable bed in the back of the den, the one with four boxes at the foot to support his legs and the equipment that helps him breathe. Most everything in sight is either green--plants, the bed linens and the covering for a small couch to his right--or white--the walls, the bookcase to his left. Bright colors, positive colors.

He is 42 and can’t move on his own, can’t hold his head up and can’t speak. Yet, everything seems to be grand. He obviously doesn’t hear too well, either, because so many people told him to give up and die. Still, 11 years after being diagnosed with amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s Disease, and being given three years at the most to live by some, he is still going.

Everyone talks of his eyes, the ones that spend many hours staring straight ahead at the big-screen television about 15 feet away or beyond that through the wood-paneled glass doors and into the backyard. It’s as if he doesn’t notice the seven nurses who come and go around the clock like the changing of the guard.

He even talks with his eyes: a wink, a stern gaze, a wide-open look of amazement. His wife, Lucy--they were high school sweethearts--jokes that the perfect way to keep him quiet would be to shave off his eyebrows.

Even Bruce Snyder, the football coach at the University of California, found the key when he visited last December while recruiting Wedemeyer’s son, Kale: “His eyes are really alive. There’s almost a smile in them, an alertness. That’s the first thing I noticed. They said, ‘Hey, I’m really glad to see you guys.’ That’s what his eyes said.”

He was just what Snyder and one of his assistants, Terry Shea, needed that night. It was two days before Christmas, two days before a much-needed day off and a chance to spend time with his family, after three weeks of nonstop recruiting. Snyder was tired and unsure of what to expect during his first home visit with Kale, a small (5 feet 7 inches, 175 pounds) but speedy tailback at Los Gatos High School, the team Wedemeyer once coached with success.

“I was tired, real tired,” Snyder said. “Of course, I knew some of the background involving Charlie and Lucy and Kale, and to be honest I was a little reticent. One, from being tired and, also, not sure of how this was going to happen, in terms of communication and attitude. I didn’t know if there was any self-pity. I had made the commitment and was looking forward to Christmas to take a day off, so I went into the home less than enthusiastic.”

But everything worked out.

“The home was really decorated,” Snyder said. “There were a lot of the smells of Christmas. You could tell they were baking, and it was a very warm home. Kale and Lucy met us at the door and invited us in. We walked to the back room, and there was Charlie.

“Most visits last an hour to an hour and 15 minutes, sometimes an hour and a half. We left after two and a half hours, and I had goose bumps. I turned to my assistant coach and said that’s the best Christmas gift I’ve ever had.”

Obviously, everyone left impressed. Kale, who scored 33 touchdowns in his two years on the varsity and will be playing in the Shrine all-star game Saturday night at the Rose Bowl, signed with Cal. He also visited Washington State and Oregon and considered Santa Clara but decided on Berkeley because he wanted to be close to his family.

So, what does Charlie see?

“Life,” he replies through Lucy’s lip reading. “Especially when the hummingbird comes every day, my favorite flowers, the gardenias, are around, and the squirrels entertain me and the dogs outside.

“I can see now how much God has used me, and in so many different ways. We have been able to visit and share with so many various groups--other ALS patients, first graders to senior citizens, all sorts of people. It is nice that He has enabled me to have some impact on all these people.”

Does he like his life?

“I love it. We have had so many of our friends and the community of Los Gatos be so supportive. It makes you want to go on living.”

The story began in 1963.

Charlie Wedemeyer and Lucy Dangler, people with drastically different backgrounds, met at the bookstore on the first day of their sophomore year at Punahou High in Honolulu. They hit it off from the start--she thought he looked “pretty cute,” he decided “the minute I saw you I had to meet you” and got her phone number from a mutual friend.

Lucy was blond and fair skinned and a non-islander, the daughter of a Trans World Airlines employee based in Honolulu. Charlie was a native Hawaiian from a family that had far more love than money, and he made it to Punahou, a private school, only because of an athletic scholarship. He grew up as the youngest of nine children in a two-bedroom, one-bathroom house in the low-income city of Kalihi, just outside of Honolulu. His famous brother, Herman, a.k.a. Squirmin’ Herman, was a late-1940s football All-American at St. Mary’s College in Moraga, Calif., who went on to a lasting role on “Hawaii Five-O,” was 22 years older, which still causes some to mistake the relationship as father-son.

Decades after his brother found notoriety, Charlie, all 5 feet 7 inches and 170 pounds of him, developed into a massive local hero. He starred in football, baseball and basketball at Punahou. He was later named Hawaii’s Athlete of the Decade for the 1960s. Lucy would often bring gardenias and Charlie would pick one out of the batch and put it inside his football helmet before a game.

Together, they went to Michigan State, where Charlie shared a four-man dorm suite with another budding superstar, Steve Garvey. After their freshman year, Charlie and Lucy were married.

Wedemeyer played three years of varsity football for the Spartans, first at quarterback and then, as a senior in 1968, at flanker. He had his best season there, playing in the East-West Shrine game and the Hula Bowl. During the regular season he rushed for 147 yards and 1 touchdown in 21 attempts. He also caught 9 passes for 108 yards and a touchdown. He gained a reputation for brains-over-brawn blocking.

“The reason is that he does a ‘look out’ block,” his coach, the late Duffy Daugherty, once said. “When he wants to block some guy and might clip him, he hollers, ‘Look out.’ Then when the guy turns to see what’s up, Charlie lets him have it.”

From Michigan State, Charlie, with Lucy and baby daughter Carri, went to Central Michigan, where he earned a Master’s degree in community education. From there, Wedemeyer, his family four-strong with the birth of Kale, was hired as a math teacher and assistant basketball and football coach at Los Gatos High in this community 10 miles outside San Jose. In 1977, he became head football coach.

Wedemeyer’s reputation grew quickly, especially as an offensive strategist, and his playbook bulged with complicated formations. Butch Cattolico, a top assistant who joked that in later years he “ran out of body parts” to signal plays to the quarterback, recalled when three or four major colleges approached Charlie about jobs at a coaches’ clinic in 1979.

He was 33 at the time, his future seemingly limitless. But he was also aware that pecking away inside him was a disease that, one by one, would eventually render almost every involuntary muscle useless. The illness is painless and is without any known cause or cure, but it would progressively zap him of the ability to grip a pen, hold his arms up, to walk and to talk, while leaving his mind and emotions intact. Death often comes from respiratory failure due to muscle failure.

According to the National Institute of Health, Lou Gehrig’s Disease strikes 1 in every 100,000 people, while the Muscular Dystrophy Assn. puts estimates at 5 to 7 per 100,000. Eleven years ago, it became Charlie Wedemeyer’s disease, too.

He was dropping the chalk a lot while trying to write on the blackboard in class. Clumsiness, he said. When it persisted and went to the doctors, they came up with the real diagnosis.

The Wedemeyers spent the better part of a year denying or ignoring the reality, in direct contrast to their attitudes today. As Charlie worsened, however, everyone began to see it wouldn’t go away.

“He had trouble walking or picking things up,” said Kale, who was 7 at the time. “I didn’t know much about it, I just knew that he needed help. I guess the first time I realized something was wrong was when he came home one day laying in the back of a station wagon after some tests or therapy. I asked someone, ‘What are they doing to my dad?’ ”

Over the next few years, the Wedemeyers adjusted, but not without a great deal of pain. Lucy, a real-estate broker, became a wife, mother and nurse, before the family had outside help. The chore often fell on her to lift Charlie into bed, to hold him upright during showers, to help him with exercises. Back, shoulder and neck pains resulted and forced her into therapy of her own that continues today, even though there are others to do the lifting.

Kale (Hawaiian for Charlie and pronounced KUL-ly) was often a fill-in nurse himself. On one memorable shift during his freshman year, he looked over his father on the 9 p.m.-8 a.m. shift while his mom was bedridden with pneumonia. When Charlie had trouble breathing in the middle of the night, he called for Lucy, who came into the other room and collapsed not far from the bed. He cleared his father’s throat, helped his mother back to her room and finished the shift. In all, he far surpassed the 15 allowable absences during that year.

“I should have been kicked out of school,” he said.

Of course, Los Gatos, the school and the community, were sympathetic to the cause. There were fundraisers to help offset the medical costs insurance would not cover--the nursing care is $60,000 a year--and another gathering engineered by the National Football League Alumni Assn. brought in $60,758. There was notoriety, too, which, like the fundraising was an adjustment for Charlie. He wasn’t keen about people donating money to his family and he didn’t go much for the publicity.

“At first, I was very apprehensive because my personality was such that I had always been a shy person, and to think of the TV cameras invading our privacy bothered me,” he said. “But after a while, I felt if we could help one person, maybe it would be worthwhile.”

The cameras were there in the summer of 1985, when he coached an area all-star game from his hospital room. He was rushed there after his breathing stopped and he was near death. Doctors strongly advised against him even watching the game, but Lucy had a line cleared from the stadium to the intensive care unit and, watching the proceedings on a monitor, relayed the plays Charlie called.

By December of 1985, his situation not-so-quietly developed from a local story to a national human-interest triumph. He had already outlived original life expectancy by doctors, and now Los Gatos would play for the Central Coast title.

Charlie, told by administrators a few years earlier he could no longer teach at Los Gatos, had the Wildcats, semifinalists the season before, playing for the championship. He was on a respirator full-time, couldn’t talk and his physical condition was so bad that when the donated golf cart he and Lucy rode in hit a bump, his head would flop forward limp. Somebody would have to set it back for him.

But Charlie was definitely the coach, through an amazing process: He would call the play, with Lucy, also wearing a wireless headset, reading his lips. She would tell Cattolico, who would run to the sideline to signal the play in like a third-base coach.

The Wildcats did it this way for much of the season and never got called for delay of game. This night merely magnified it because of the stakes. A scene emerged at San Jose State’s Spartan Stadium that was part circus because of the television cameras on top of the built-in emotion that comes with every title game. And when Los Gatos won the championship with a coach who could not even talk and a lip-reading wife, it became a night for all-time in California high school football history.

School administrators took Charlie’s team away from him a couple weeks later.

He didn’t go quietly. Charlie and Lucy asked for a meeting with the principal and were granted one. They went to the school, into Ted Simonson’s office and heard the explanation, the same one they got over the phone, that Simonson felt a walk-on coach who couldn’t communicate well made for a difficult situation.

Charlie made a clicking noise with his mouth to let Lucy know he had something to say.

She turned his way, got the message, and turned back to Simonson with the matter-of-fact response: “Charlie says you’re an (expletive).”

It came down bad for everyone. Charlie lost the job he loved--the job that, in many ways, kept him going--Simonson went against public emotion in making a very difficult decision, and Cattolico became a bad guy.

Cattolico, like several other assistant coaches, had long ago drawn weary of the situation. They had to deal with too many non-football problems to get through each week and didn’t know how much longer they could go on writing out daily practice plans ahead of time to help communications the next day while still spending hours on the normal grading of classroom assignments. The fact was, and even the Wedemeyers will say so, Charlie wasn’t supposed to last this long.

“At first, it was very positive,” Cattolico said. “Charlie was still very active and everybody got along well. But I think, especially when he lost his ability to talk, that it made things very difficult. As Charlie got sicker and sicker, the amount of time he put into football was greater and greater. Some of the other coaches, including myself, were unable to keep up with him. He wanted to spend three hours a day just on the field, and we didn’t. He always liked to spend time on the field, but this was more than normal.

“It had become an obsession with him. He’s kind of a perfectionist, and it had all gone along so smoothly previously. All of the sudden, people are having trouble understanding what he was saying and what he wanted them to do. He was still calling the shots, but we (the assistant coaches) were doing all the leg work. It would take 15 or 20 minutes to understand where he may have just wanted somebody moved three feet to the left. It became very frustrating to all of us.

“The general mood came to the point that we had been to the semifinals a couple years in a row and we all would have liked to stay with him and get the championship. We felt like it would come in the near future. When it did, a lot of the coaches, and I know I did, felt we did as much as we could do.”

So, in January of 1986, Cattolico resigned. Simonson, having to choose between the much-loved and much-respected current coach or losing a possible replacement for down the line and someone who is said to be a very good math teacher, went against public sentiment. More than a few saw it as a cold-hearted ultimatum by Cattolico: Him or me.

“There may have been some hard feelings at the time,” Cattolico said the other day, sounding as though the emotions of the time are still fresh. “When I resigned, I said, ‘I don’t want to take away from you, but I can’t do this anymore.’ It got to the point where I would have to write down every single thing we were doing on the field to communicate to each other. Football starts to lose a little fun when you have to do that kind of work.

“I felt there was some real pressure put on me when I resigned. I was literally told that I couldn’t resign, that I was trying to push Charlie out. I said there were personal reasons and that should have been enough for anybody. I was accused of some things that really bothered me, such as I was trying to undermine Charlie’s authority. The way it turned out, maybe they were right.

“But I had a letter of resignation turned in and they could have taken it. I was looking into positions at other schools. The whole thing, as far as I was concerned, could have gone on without me. But, in all honesty, I never undermined Charlie. In fact, I have gone out of my way to make sure he would still have a spot. He was a brilliant coach, he had an outstanding offensive mind and I learned a lot from him, but it reached a point where I felt I couldn’t go on.

“I still don’t know to this day if I did the wrong thing or not. My general attitude was that I needed to get out of football for a year to get a break. I’ll be honest. After nine years (as an assistant), I felt that if the job was going to go to someone else, I was the one who deserved it. I’m sure to this day there are hard feelings, although I obviously wish there hadn’t been. But I can’t say there aren’t.

“The family really never said much, but Charlie has an awful lot of supporters. I think I was the first one, maybe the only one, who kind of stepped away from the situation. But I felt I gave Charlie nine good years as an assistant coach in which I never stood up and took credit and never once asked for glory. We were very good friends and I think we’re still friends. We’re just not very good friends like once upon a time.”

Charlie’s response: “At first, it was very difficult to accept and I was very disappointed. But I have no bitterness or anger.”

With junior Kale Wedemeyer playing a key role from the start, Los Gatos went 9-2 in 1986 and advanced to the division semifinals. Last season, with Kale rushing for 1,154 yards and 19 touchdowns, the Wildcats opened 10-0 before losing in the semifinals again.

Los Gatos succeeded, with Cattolico in charge and Charlie still at every game and most every practice as, officially, coach emeritus. Even in victory, though, Cattolico felt the pressure and the need to clear his tainted reputation, whether he had wronged his friend or not.

“I’d like to say no to everybody,” Cattolico said. “But deep down inside, I felt like Charlie had nine winning seasons and some of the things he did will never be repeated, so I constantly feel like I have to compete with him. Nobody should have to do that. He won championships with football teams that were not real talented while coaching from a wheelchair. Coaching from the sidelines and standing up, I know I can’t do some of the things he did.”

Where you find great love, you find great miracles. --Wedemeyer family motto

This is no miracle. With proper medical supervision and the all-important right attitude, ALS patients have been known to live 20 or 30 years, with increasing ease thanks to technology. Still, the Wedemeyers have become something of a model family of how to handle the adversity, treating the disease with a daily dose of love and laughter as much as medicine.

“It’s not the most dramatic case of all time,” said Dee Holden, a nurse and the executive director of the San Francisco-based ALS Research Foundation who has been associated with the Wedemeyers for years. “But it is a lovely case. It’s a pictorial case.”

The Wedemeyers have shown they can laugh even in the most scary moments. Simply, they find it a lot better than crying. Once, in the early stages of the disease, Charlie fell to the ground while Lucy briefly left the family car idling in the driveway. The Honda began to roll toward Charlie, and she managed to jump in and stop it just in time. There were tears and apologies, and then relief.

“If I wanted to run over you,” Lucy told him, “I’d have used a bigger car.”

Charlie laughed.

When he recently balked at one of Lucy’s suggestions because he didn’t think there was time, she simply pulled the tube pumping oxygen out of his tracheotomy pipe and, as the alarm screamed in the background, said, “Are you sure you don’t have time?” Charlie complied. “I thought you would,” Lucy said, giving air back to her husband.

The tough part these days is keeping Charlie at home. He loves to go shopping, clothes especially, and out to dinner. He makes speeches, motivational and Christian-related, to church groups, booster clubs, junior college students, juvenile hall internees, and Lions Clubs. He went to most every of Kale’s track meets and plans to go to all Cal home games and is even talking about several of the away games. This week, Charlie, Lucy, several nurses and Carri, are in Southern California for the Shrine game, staying in the San Fernando Valley to be able to attend every North practice at Cal State Northridge and today moving to a hotel in Pasadena for the game Saturday night.

“I was at an ALS group meeting for kids once, a support group, and a lot of the people talked how they couldn’t get their father or mother out to do things,” Kale said. “I was shocked. I can’t keep my dad in the house.”

This is a family of which movies are made, maybe even books. Indeed, the some two dozen writers and producers have approached the Wedemeyers for their story, although none have developed. A PBS special, which generated 1,000 letters of praise and support for the family, is the only thing so far.

“The Hollywood producers couldn’t believe we weren’t falling at their feet to have a movie done,” Lucy said. “But when you have almost died three times, you’re not impressed by much.”

Now Charlie isn’t sure he has the time such a project would take. There’s too much going on.

But you do have an important message, right?

“People with a terminal disease tend to be depressed and give up,” he said. “But if you think about it, it’s all terminal because there are no promises for tomorrow for anyone.

“So many people dread the thought of getting up when the alarm rings at 6 o’clock in the morning, but they should be glad to get out of bed. We tend to take those things for granted and not appreciate what we have. I thank God every day that I can see and hear and be able to breath through this machine and get nourishment through these tubes.”

Now, Charlie Wedemeyer is in the best shape in five years and his face is full of color. His 21-year-old daughter is at San Francisco State majoring in music production and is the lead singer in a rock band, his 18-year-old son was an academic all-state selection and will be playing college football in a few months, and his wife, the same lady who cussed out the school principal for him, is still his biggest supporter, a quarter of a century later. What next?

Lucy leaned close to get the answer: “A lot.”