Loyal Red Sox fan thrown a cruel curve

Victim of ALS wryly rues a ‘Yankee’ illness

The life and times of Paul Szantyr are shown in a photo collage in his nursing home/hospital room. The life and times of Paul Szantyr are shown in a photo collage in his nursing home/hospital room. (Stan Grossfeld/Globe Staff
By Stan Grossfeld
Globe Staff / October 15, 2009

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FORESTVILLE, Conn. - “How Does a Red Sox Fan Get Lou Gehrig’s Disease?’’

That’s the title of an unpublished book written by Paul Szantyr, 50, a former black belt karate champion who has battled amyotrophic lateral sclerosis for nearly a decade. The disease may have ravaged his body but it has not affected his sense of humor.

“Cut me, and I bleed Red Sox,’’ he writes in the prologue. “For over nine years now, I have been living with the ultimate indignity: I have a disease named after a Yankee legend!’’

Szantyr was a Waterbury, Conn., high school shop teacher before ALS, a progressive disease that ravages the central nervous system, left him virtually paralyzed and in a nursing home/hospital, surrounded by Yankee fans.

Room 310 at the Subacute Care Center is unlike any other in the facility. There’s an oversized Red Sox banner, a Curt Schilling portrait, and snapshots of Szantyr, posing with his karate trophies, playing tennis, coaching his high school cross-country team to a state championship, and refereeing basketball games.

Yankee fan nurses enter Room 310 at their own risk, especially during the playoffs.

Last Friday night started hopefully. In Game 2 of the Division Series, the Twins are beating the Yankees in the ninth inning and Szantyr is watching the television with glee. The Red Sox-Angels game is upcoming shortly from the West Coast.

“I make the nurses who are Yankees fans salute my flag before coming in the room,’’ he writes. “Sometimes it’s a one-finger salute, but I can’t have it all my way.’’

Szantyr communicates through an eye gaze response interface computer aid system (ERICA) that allows him to move the cursor with his left eye. The computer then types the letters and reads the sentences aloud in a generic voice, sounding like HAL in the movie “2001: A Space Odyssey.’’ Donated by a Connecticut-based nonprofit group called “Voices For Joanie,’’ the computer makes life worth living for Szantyr.

Chief nurse Julie Prior stops by to make sure Szantyr’s neck stays propped up with pillows so he doesn’t choke.

“You know I’m not saluting that flag,’’ she says.

But then she softens and pats his head.

“He is one of the most intelligent man I have ever met,’’ she says.

But tonight is not a good night.

The much-despised Alex Rodriguez jacks a ninth-inning home run and the Yankees tie the score. Worse, the announcers tell viewers to switch channels if they want to see the beginning of the Red Sox-Angels game. Szantyr is agitated. It is a channel the center doesn’t get.

The Red Sox have helped save his life.

“They occupy eight months of my time,’’ he writes. “More if it’s an active offseason. I LOVE the Sox, no matter how they frustrate the crap out of me, or thrill me to tears.’’

He remembers waving Carlton Fisk’s walk-off home run fair as a teen in 1975. He blasts Don Zimmer for not using Bill Lee down the stretch in 1978. He defends Bill Buckner and his “knobby hickory branches’’ for legs (it was John McNamara’s fault for not substituting Dave Stapleton).

After he was diagnosed with ALS almost 10 years ago, he prayed that God would let him see the Sox win the World Series. He got his wish. Twice.

In 2004, he was home with his wife, sitting in a wheelchair, and after the final out, they both wept. Then they called their Yankee friends at 1 a.m. “to deliver a Bronx cheer.’’

Szantyr feels a kinship with captain Jason Varitek, whose skills are also declining. Asked if he should be re-signed, Szantyr blinks once. That means yes.

Then he stares at the letters on the keyboard. The retina reader does its magic. A minute later, a computer voice speaks.

“Tek should be enshrined for the mitt in A-Rod’s puss,’’ says the monotone voice.

Dreaded diagnosis
Szantyr is not alone in his battle. According to the ALS Foundation, 30,000 Americans have the disease. Most will die within 2-5 years. Up to 10 percent will survive 10 years. Gehrig was dead within three years. Hall of Fame pitcher Catfish Hunter died after he fell down stairs at his hime a year after being diagnosed with ALS. He should have thought ahead and had ramps installed, Szantyr believes.

There is no cure for ALS; paralysis sets in, then vital functions such as speech, swallowing, and breathing become compromised. Szantyr has experienced all of the above. Last year, he suffered respiratory failure and stopped breathing.

Doctors told him his options were limited: be put on a respiratory ventilator in an institution or be put on a morphine drip and “be comfortable.’’

Szantyr, who says he’s living on borrowed time since the Sox won again in ’07, chose the ventilator. But in one of the few comebacks this disease allows, he weaned himself off the respirator and learned to breathe again on his own for 12-16 hours a day.

Nobody thought he could do that.

Szantry was always a good athlete. He was awarded a combined nine degrees of black belt in three styles of martial arts.

“I even beat Andre Tippett at Brandeis University, even though he tossed me out of the ring and under a scorer’s table,’’ writes Szantyr.

It was during a basketball game that he was refereeing in February 2000 that his troubles began. He noticed he had trouble moving his fingers at the scorer’s table to denote which player committed a foul.

In his book, he writes about getting the bad news:

“I managed to go down the carpeted corridor without incident and arrived at the doctor’s office on time. I noticed that same pamphlet on the table adjacent to my chair; the one with that ballplayer on the front. I was suddenly struck by the irony of me, a lifetime Red Sox fan, being saddled with a disease named after perhaps the greatest Yankee ever.

“ ‘That’s just my luck!’ I murmured under my breath. ‘Why couldn’t I have Yaz disease and win the Triple Crown, or Ted Williams syndrome and bat .400?’ ’’

Maddening moments
Despite a body that was shutting down, Szantyr refused to shut up.

When the local school district ignored his increasing disability, Szantyr sued the Department of Education, citing the Americans With Disabilities Act. He won a six-figure settlement.

“All employees who become disabled don’t have to fold up their tents and go home because their bosses say so,’’ he writes. “I hope I presented some effective strategies with which to battle ‘Big Brother.’ ’’

And for those people who see only a paralyzed figure that can’t talk, Szantyr urges a little tenderness.

“There are real people behind these speechless faces with real lives they lived,’’ he writes.

What is it like to have that bright and witty mind trapped in that body?

“Maddening beyond description,’’ he writes. “My closest friends know me and kind of know what to expect, but so many humorous things go by without comment, because by the time I type it out, the moment’s gone.’’

The Yankee game is dragging on into extra innings, and Szantyr is tiring, until his wife Angela shows up for a visit. She kisses him and proceeds to berate Johnny Damon as a turncoat.

Damon hits into a double play, to the delight of the Szantyrs, who have been married 27 years.

Finally, Mark Teixeira belts an 11th-inning home run to win the game for the Yankees, allowing the network to cut to the Red Sox-Angels game, which already is in the fourth inning.

“Good,’’ types in Szantyr, cheering a Yankee win for probably the first time ever.

Jason Bay is up.

Szantyr writes that he can’t stand watching the Dodgers anymore because of “Manny’s goofy smile.’’

“I love Bay’s demure, behind-the-scenes persona,’’ he writes. “Big Schill was my favorite, his guts inspire.’’

Curt Schilling is a staunch advocate for those with the disease. The former Sox pitcher wrote the message “K ALS’’ on his shoe in the famous bloody sock game in 2004. He loved Szantyr’s book.

“Paul’s writing is compelling and poignant, his wit and intellect entertain to the point that you sometimes forget you’re reading about the tragedy that is ALS,’’ writes Schilling in a book blurb.

Never give up
Szantyr loves the fuss being made about him. His next-door neighbor here is a Westchester guy in a wheelchair. He stops by to gloat, maybe get his picture taken.

Szantyr blows him off. He works hard at being “soooo obnoxious to Yankee fans . . . If I knew that being ill would get me this much attention, I’d have gotten ALS a lot sooner!’’

But Szantyr confides that he has a bad feeling about this year’s Sox team. His fears are soon realized. In another late-inning collapse, the Sox lose their second straight game in the Division Series. Their backs are against the wall.

“The ’04 Sox could do it,’’ writes Szantyr. “[But] this a different band of idiots. If you listen carefully, a fat lady is doing her do-re-mis.’’

But he never gives up hope.

“Alas, I will watch to the last out,’’ he writes. “I just don’t know if these guys are as resilient.’’

The next day, he sends an e-mail, which is received while the Angels are leaping around on the Fenway infield.

The last thing he wanted to see was Angels celebrating.

He curses closer Jonathan Papelbon, and writes, “Can’t we do better than him? A nightmare!’’

Stan Grossfeld can be reached at

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