On the Day of the Fundraiser for My Dad

Sidelines
By Kalani Simpson
From The Honolulu Star Bulletin, Sunday, March 26, 2006


MAU HAS BEEN FIGHTING FOR THIS NIGHT
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LEGEND has it that John Mau is the one who received the first scholarship in the history of University of Hawaii men's volleyball. He smiles at that. The real story isn't as glamorous as it sounds.
It was a "tuition waiver," he explains. And he and Steve Kop split it. One got $116.25 for the first semester, then the other got it for the other half of the year. This was in 1970, he says, so long ago that Larry Price was their coach.

And how was Price at coaching volleyball?

"Basically, he was a football coach," Mau says, and laughs. But it was Price who hustled, and who cared, who thought volleyball should be a bigger sport at UH (he got some of his football players to come out for the team), who pushed for that first "scholarship." And Mau and Kop are an asterisk in history, now.

What great, wonderful days those were.

UH had its alumni matches last weekend, men's volleyball players from every era coming out to play before the varsity match, and they honored Mau. There are pictures of it, Mau seated in the middle, everyone gathered around him beaming, proud to be there, shining eyes. These are great days, too. They're just harder now.

There will be a party tonight, people coming together "out of the woodwork" to honor him again. They'll celebrate him, and sing songs and tell stories and probably shed a few tears. People who went to elementary school with him will be there, or those he met in his 32 years with City Parks and Recreation or fraternity brothers or old teammates and who knows who else. It's amazing how many people he knows.

"It got bigger and bigger," Mau says.

Close friend Clifton Chee says Mau is just that kind of guy. This party is going to be that kind of night.

"It's a chance for people to get involved and tell me, and interact with me while I'm still alive," Mau says. "That's basically, you know, it. While I'm still around being able to communicate. I look forward to it. It's an opportunity not only for me to see them, but for them to see me. So that's the good thing about it, while I'm still able to ..."

He stops.

His eyes are moist, at the corners.

He's working on a speech, for tonight, for all his family and friends. He wasn't sure of the exact words yet, but it was sure to have a certain theme.

He considers himself the luckiest man on the face of the earth.

IT WAS IN sports that he first noticed something. Playing in his over-50 basketball league, his 3-pointers no longer reached the rim. On the golf course, Chee was suddenly outdriving him, and that was definitely a change. Then, Mau's back started hurting, and he walked kind of stooped over. There was some numbness, and they wondered if it was a pinched nerve.

They finally went to the doctor, but everything was inconclusive. There was one test, then another. "It's the process of elimination," Mau's wife, Bernice, says. Then there was a muscle biopsy, and in October 2004, the diagnosis came like a slap in the face.

Lou Gehrig's Disease. ALS.

"Well, we didn't know what ALS was," Bernice says. "We sat there, we were shocked. We didn't know how to react. Because we didn't know everything about it. All we knew was Charlie Wedemeyer had it. We never really read his literature to find out how devastating it is. It took us a couple days before it really sunk in what was to come. And it was completely -- real hard."

She cleared her throat.

ALS. "Tuesdays With Morrie." The neurodegenerative disease that gradually paralyzes a body until its owner can no longer even breathe.

It seems you can think of so many local people who got it who were active. Wedemeyer. Dick Jensen. Ann Kang. Active, athletes, just like Mau. Nobody knows why.

Isn't that the joke? Didn't a famous athlete have Lou Gehrig's Disease?

Friday, Mau couldn't lift his arms. They know what's coming.

"Being on a ventilator," Mau says, "not being able to communicate."

They know what's coming.

"He sits here all day long now," Bernice says.

"It's just one of those things," John says. "Take it with a grain of salt. One of those things."

NO ONE COULD have handled this as well as John Mau has. No one has as many friends as he does. No one is as consistently as nice a person as he is.

"Even though he was part of the bureaucracy," Chee says, and we all laugh.

But it's true.

He would deal with the public and have every person leaving with a smile. He would come in on weekends or at night just to open a door for someone. As manager of Kapiolani Park and McCoy Pavilion, he was nice to the homeless instead of chasing them away. People notice things like that.

He's so nice, "As a wife, it can be frustrating at times," Bernice says.

It's no surprise that so many are coming out tonight, that he feels so blessed, even now. He's always been surrounded by so many friends, so much love.

That's why this night will mean so much.

"Some people don't want to come by," he says. "It's too devastating, they don't know how to handle it. They don't know what to say."

It's been tough on everyone. At first John didn't want to tell anyone about his ALS because he didn't want people to feel sorry for him. But for Bernice, telling people helped. And through his work at McCoy Pavilion, John knew the Muscular Dystrophy Association had support groups. Those have helped too, hearing how others, and their families, have coped. Bernice needed something like that.

John, well, he's had his bad days. But he's always been upbeat. No one could handle this as well as he has.

"I'm not any more braver than anyone else who is afflicted with a terminal illness," he says.

TONIGHT WILL BE special. So much aloha. So many friends.

Everyone knows what will come. Everyone knows what this is.

"It's good," Mau says. "Do it while I can."

There will be smiles and laughter and tears. Old friends. Good friends. It's going to be so much fun. So much life.

A celebration of how blessed he is for who he is and all he has. These are great days, too.

They're just harder now.

It's the second marriage for both of them, and John and Bernice were still newlyweds when the news hit. There was so much ahead of them, so much to look forward to, so many plans. John says Bernice feels cheated sometimes. How could she not?

Everyone is cheated with something like this.

Bernice has to leave for work, and she grabs her husband by his cheeks, tilts his head back, kisses him full on the lips. Tells him she loves him and goes out the door.

"Some people fight or flee," Mau says. His wife walks to her car.

"She chooses to fight," he says.

He is the luckiest man on the face of the earth.



Kalani Simpson can be reached at ksimpson@starbulletin.com