A Red Sox Fan Battles Lou Gehrig's Disease
Rick Green
April 22, 2008

Read my book, Paul Szantyr urges in an e-mail, "the story of a regular guy, who encounters a very irregular problem."

It starts with "seven little words," Szantyr explains in this unpublished manuscript, that "still ring in my ears to this very day."

I believe you have Lou Gehrig's disease.

Szantyr first heard this back in 2000. He was a high school teacher in his prime — head of his department, cross country coach, karate black belt, an aspiring college basketball referee, a hard-charging son of a gun who never thought much about giving in.




He was — and still is — a defiant Red Sox fan, a Waterbury boy who endured the heartbreak of 1967, 1978, 1986 and 2003 because there never was another team. Only when amyotrophic lateral sclerosis derailed his life does his team win the World Series.

The Sox keep winning. ALS keeps snatching more pieces of his life. Szantyr becomes something he never imagined.

"How Does a Red Sox Fan Get Lou Gehrig's Disease?" he asks in the title of his book, only recently completed, letter by letter.

Because for this former teacher at Kaynor Tech in Waterbury to write, he must move the iris of his left eye while looking at a keyboard on a special computer screen, tapping out letters, words and sentences.

"I finally have come to embrace the fact that who I am should not be confused with how I look," he writes in the book, which he labored over for the past two years. "This was a piece of wisdom, however, that I haven't latched on to with ease and grace; rather, it has been forced upon me in a desperate attempt to survive."

When I got to his room at the Hospital for Special Care in New Britain, he was lying, largely immobile, on his bed. Szantyr can push a button with his toe to signal for the nurse. He has a tracheotomy tube, a ruddy complexion and eyes that smolder. He is 49.

There is a Red Sox banner on the wall, a picture of Josh Beckett on a bulletin board. We talk about last night's loss to the Yankees.

"Little by little, it takes away," Szantyr told me about ALS, methodically clicking — blinking — out the words before an electronic voice reads them.

We continue talking, digitally, and with help from his wife, Angela, and his burly 85-year-old father, Tony. Down the hallway, I hear the wheeze of ventilators and televisions blaring.

The chapters of Szantyr's meticulously constructed text are poignant and brutal, from the shameful behavior of his former employer, the state Department of Education, after his diagnosis, to the metamorphosis of a 60-miles-a-week runner into "ALS guy" shuffling down the hall.

"As I turned to resume climbing the stairs, the toe of my shoe caught the lip of the stair tread and I fell face-first to the rubber-coated steps — barely getting my hands out in front to break the fall. I sat up to gather myself together when the thought came to me that I was powerless to keep this disease from marching forward," he writes in the book. "With a muffled sob, my head drooped forward and my shoulders sunk under the full weight of the realization that I may have just worked my last basketball game."

In the hospital room, Szantyr's father gently strokes his boy's arm as we move from the Yankees to deadly serious topics.

As a guest at this very intimate scene, I feel embarrassed by the mundane garbage that fills my mind — paint the kitchen, rake the lawn, call the cable guy.

"I am trying to reclaim some control over my future," Szantyr blinks, the words appearing on his small computer screen. "However long that may be."

So, of course, I read his book. Who knows how long any of us will be around?

The Sox are home against the Angels tonight. Paul Szantyr will be watching. So will I.


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