Ailing Butler grad's words inspired basketball team

CAPE HAZE — Matt White's bright blue eyes stared at the television screen Monday night. The referee stood in the center of the court in the stadium in Houston and tossed the ball in the air to start this year's men's college basketball national championship game between the University of Connecticut and the underdogs from Butler in Indianapolis. Matt, Butler Class of 1989, sat and watched and didn't move.

Around him in his home were Butler banners and posters and his parents and his sister from Tampa and 30 or so friends and family members and fraternity brothers. He was wearing Butler sweatpants and a Butler jersey, and a small, damp Butler rag rested on his upper left chest. His atrophied hands were crossed in his lap.

Matt has amyotrophic lateral sclerosis, or Lou Gehrig's disease, which has stolen from him his ability to move, talk, swallow or breathe on his own. A ventilator pumps air through a tube into his throat. The only things he can still move are his eyes. He communicates by blinking — different letters for different numbers of blinks — and he operates a special computer system with tiny movements of his eyes.

But he can still think, and feel, and last week he took more than 10 hours to write a 976-word e-mail he sent to the Butler coach. The coach read it to the players before Saturday's semifinal game.

"Katmandu, Nepal," the e-mail began. "Look north and looming in the distance, among the peaks of the Himalayan range stretching more than five miles high, is the world's tallest peak.

"You," Matt wrote to the team, "are at the slopes of Mount Everest.

"Very near the top now."

On the screen, the ball came down in the center of the court, and Connecticut got it first. The game began.

• • •

He was diagnosed in 2000. He was 33, selling ads for radio stations in Chicago.

He was a natural athlete who'd gotten a track scholarship to go to Butler and was an 8-handicap golfer. He decided to play as many of the world's top courses when he still could. With friends, he played in Ireland and Scotland, he played Oakmont outside Pittsburgh, he played Winged Foot on Long Island. He played Augusta National. He played Cypress Point in California and then drank champagne on the rocks by the Pacific.

Matt stopped breathing in 2004 in a hospital mishap and almost died. Any day could be his last. Those with ALS typically are expected to live no more than five years. Matt is at 11 and counting.

The Matt White CureALS Foundation has raised roughly half a million dollars for research.

"Maybe," Matt once wrote on his foundation's website, cureals.org, "you'll find a way to try or do something you've never thought possible."

Butler's enrollment is 4,500 students. Connecticut's is more than 30,000. Butler's basketball budget is a third of Connecticut's basketball budget.

But now the Butler team took the lead at 3-2.

And then 6-4.

And then 16-15.

The dozens of people around Matt stood up and cheered. On his face was what looked like a slight smile.

• • •

"At over three miles high," Matt wrote to the team, "lower base camp also serves as the first of several necessary levels of acclimatization stages. Acclimatization, the process of allowing the body to create and retain oxygen-carrying red blood cells as needed, is critical to anyone attempting to climb Everest."

The Butler team was bad when Matt was in school. Asked how bad, he blinked back, A-W-F-U-L. The team made the Sweet 16 in 2007, though, and then the national championship game last year, a stunning achievement for a school of its size. Butler had a shot in the air as the final buzzer sounded that would have won the title. It hit the rim and bounced away.

Now the team had made it back for a second chance.

Matt used to be able to still move a foot. Then he couldn't. He used to be able to still move his little fingers. Then he couldn't.

He got married in the spring of 2006 to a woman he had dated when they were both teenagers in Indiana. Shartrina is a brunet who runs marathons and teaches kids to read. She and Matt celebrate their wedding anniversary every month instead of every year.

Matt goes for walks in his chair with the sun on his face. He sends e-mails to friends all over the country. He trades stocks online. He's a voracious reader of audiobooks, including Into Thin Air, an account of a fatal Everest expedition. He catches fish thanks to a modified boat and a rod and reel that spins when he blinks.

He says he's not dying of ALS. He's living with it.

He has Shartrina.

He has Butler basketball.

Now, just before halftime, a Butler guard arced a three-point shot over a Connecticut defender's outstretched hands and down into the net to give Butler the lead. The people by Matt jumped up and roared. The biggest noise of the night. This time the smile was more than slight. Shartrina kissed him on the face.

• • •

Connecticut's players were bigger. Taller. Stronger. The Butler players have won so many games in the tournament these last two years by doing things they weren't expected to do. By beating teams they weren't expected to beat. They've done it by playing as a team, especially on defense, where one Butler player doesn't stop one opposing player but five stop five.

Survive and advance — that's one of this event's perennial credos — and the Butler players know it better than most.

Every day, Shartrina or Matt's parents, his caretakers, lift him out of bed. They bathe him. They brush his teeth. They feed him meals. They put him in a vest that shakes loose the mucus that collects in his lungs. They use a thin tube every couple of minutes to suction out of his mouth the saliva he can't swallow.

Now, in the first minute of the second half, it was 25-19, Butler.

But then Connecticut scored, and again, and again, and took the lead. It was 29-26. It was 31-26.

Butler finally hit a shot. There were 12 minutes to go. Butler was down only five.

Matt sat in his chair, with his white Maltese, Abby, on his lap. Shartrina sat next to him in a chair and held their chestnut puppy, Winston, and Winston rested his head on Matt's arm.

"Nobody," Matt wrote in his e-mail to the team, "climbs Mount Everest alone."

• • •

"ALS is a fatal degenerative neuromuscular disease that affects the synapse between the voluntary muscles and the nerves that control them," Matt wrote. "Eventually, all of the body's voluntary muscles atrophy and fail. Ultimately, each person with ALS dies when their diaphragm stops working and they stop breathing.

"When diagnosed, ALS patients are told the same thing Lou Gehrig was told more than 60 years ago — ALS has no known cause, no treatment, and no cure. Over the next four years you will lose the ability to use your arms and hands, you will not be able to walk, you will not be able to speak or swallow, and finally, you will not be able to breathe. ALS is 100 percent fatal."

The machines can do only so much for only so long.

On the screen Butler kept missing shots. Connecticut's lead kept getting bigger. It was 35-28. It was 37-28. It was 39-28. Matt's fraternity brothers sat on couches with glum faces. The room got quiet.

Shartrina took Matt's arm at the wrist and moved it up and down Abby's fur. Abby licked Matt's fingers. It was 44-30. Shartrina put her hand over her face. And then it was over. Connecticut won by 12. Her right hand held Matt's right hand. She looked at his face.

He blinked his blue eyes.

S-A-D.

His friend Dave Dziabis got up to leave. He stood in front of Matt's chair and leaned down and talked softly.

"All right, buddy," Dave said to Matt. "I'll miss you, and I'll pray for you every day, and I'll come back and see you. You inspire me, every day, in every way."

He leaned down and kissed the top of Matt's head.

Shartrina wiped the tears from her eyes and suctioned the saliva from Matt's mouth.

Michael Kruse can be reached at mkruse@sptimes.com or (727) 893-8751.

Ailing Butler grad's words inspired basketball team 04/05/11 [Last modified: Wednesday, April 6, 2011 12:05am]

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