By Stacey Morris
Staff Writer
Published in
The Post-Star newspaper 1/25/99
JOHNSBURG -- Knute Kristensen was parked at his computer terminal Thursday in the living room of his home.
A vaporizer was blowing steam into a column of sun that streamed through monster-sized windows. Through them he could see the valley below, reminiscent of the countryside of his Norwegian homeland.
For the past eight years, being able to look at the hills and valleys outside his home in Wevertown has been the extent of his access to the outside world.
For the last 13 years, Kristensen has lived with amyotrophic lateral sclerosis, known as Lou Gehrig's disease.
For the last decade especially, ALS has diminished his physical capabilities to the point of almost complete paralysis.
His sole means of mobility now are his eyeballs and his left big toe, which he uses to operate the mouse of his computer.
The last two times he ventured out of his home were for medical purposes. Usually, Kristensen does all of his traveling by way of cyberspace.
But not this day.
Today, amid stars of the entertainment industry, he'll be in Manhattan's theater district to be honored for the courage he has displayed in living with ALS.
The request for Kristensen's presence at the fund-raising gala came from the late actor Michael Zaslow, who died from ALS last month.
Zaslow, who starred on the soap operas "Guiding Light" and "One Life to Live," sought advice from Kristensen, in the months before his death, on how to handle the fears and frustrations of living with the disease's encroaching immobility.
"Michael was extremely moved by Knute's letters and considered him his hero," said Zaslow's wife, Susan Hufford, in an interview last week.
Before Zaslow's death, he and his wife had formed ZasAngels, the organization sponsoring tonight's gala. The organization's goal is to find a cure for ALS by 2000.
Tonight, Kristensen will be honored along with Donna Hanover, wife of New York City Mayor Rudolph Giuliani, and Pat Fillikrushel, president of ABC daytime, who allowed Zaslow to go to work on "One Life to Live" as a character suffering from ALS.
The benefit will feature a performance of A.R. Gurney's "Love Letters," starring Alec Baldwin and Kim Zimmer. Other celebrities scheduled to attend include Jane Alexander, Robin Strasser, Brynn Thayer and Blair Brown.
"This event is really about bravery and we felt Mr. Kristensen deserved to be honored for his role in the ongoing battle to find a cure," said Hufford.
At Kristensen's side when he receives the honor will be his daughters -- Kari, Heidi and Kristen -- his companion, the folk art painter Cate Mandigo of North Creek, and a coterie of nurses who have cared for him around the clock for the last eight years.
Kristensen's body was still as he struggled to construct a sentence on the computer screen, his hands splayed beside him on the arms of his chair.
Doggedly, he taps out letters at a pace of about 30 seconds per letter.
Kristensen types by tapping a specially designed mouse hook-up with his left toe. Since he can only push his toe down and cannot pull it back up, it is often a patience-testing process of trial and error to get the correct letter on the screen.
Mandigo is often close by to offer a smile or a squeeze of the hand and to help facilitate conversation.
Questions posed to him must be phrased to elicit a yes or no response, for that is the only way he can answer them. Is he nervous about mingling with celebrities?
Slowly, his radiant blue eyes drifted to the left. No. But yes, he is excited.
His respirator (a machine that pushes air into his lungs so he can breathe) steamed away at an even pace. In the silence of his living room, it sounded like the chug of a slow-moving locomotive.
Nothing, Mandigo said, is done easily with ALS.
But fortunately for Kristensen, he doesn't contend with the disease alone. His team of nurses have become like family over the past eight years, attending to his constant needs.
"There are millions of things to be concerned about with ALS," Mandigo observed. "And the person who has it can only hope someone will ask the right question that addresses their needs at that particular moment."
Since he can no longer swallow, his saliva must be suctioned every 10 minutes. Kristensen can only blink about three times per hour, so eye drops must be administered every 10 minutes to prevent burning dryness.
His daughter Heidi, who lived in North Creek until recently moving to New Jersey, credits the nurses with her father's remarkably glowing health.
"Most people with ALS look ill," she said. "But my dad looks really healthy and robust. He's so well taken care of by them."
Terry Wyant, a registered nurse in her sixth year of caring for him, affectionately refers to Kristensen as "Boss."
Thursday, Wyant brought him a drink of cranberry juice.
Kristensen continued tapping out a sentence as the juice trickled from the suspended I.V. bag, down through tubes that led to his stomach.
Kristensen and Zaslow were introduced through Kristensen's daughter Kari, a New Jersey resident and close friend of a producer on "Guiding Light."
"The producer asked Kari if Knute would write to Michael to help him better understand ALS," explained Mandigo.
So began their six-month friendship of weekly e-mails. Mandigo said Kristensen would faithfully reply with lengthy, encouraging passages, even though it would take him half a day to complete a letter.
It's unusual for an ALS patient to live with the disease as long as Kristensen has. Doctors typically give those diagnosed with ALS between three and five years to live.
"When the doctors told him three to five years he didn't listen to them," said his daughter Heidi.
"My father's a Viking -- he doesn't give up."
And as his daughter recalled, there could have been plenty of reasons for her father to give in to despair.
"He lived an incredibly physical existence," she recalled. "He made his living as a builder and loved to hunt and go skiing."
He coped with the disease in the early years by marathon sessions of soap opera viewing, although he strenuously objected at first.
"He thought of it as a woman's thing, but I convinced him that soaps are effective in removing you from reality for a little bit to focus on someone else's problems," said Heidi.
"My father inspires me ... he doesn't sit in a chair and feel sorry for himself, he's made the best of it."
His ability to live with grace and enthusiasm is what made him such an inspiration to Zaslow.
Mandigo produced a letter from Kristensen to Zaslow. It is five pages long and headed with Kristensen's e-mail address next to his personal logo of a Norwegian Viking ship.
The letter contains the voice that can no longer be heard.
"...I know it's frightening because you don't know what's going to happen next. Michael, don't worry about your hands and fingers, they were bound to go sooner or later anyhow. Unlike you, Michael, I didn't have anyone to give me advice ... I sometimes think this is good, it made me more aware of my illness and how to deal with it. When you get as far as me with trach, feeding tube and EZ-keys for Windows, you are home free. Who said ALS is terminal ... it's what you make of it."
What Kristensen has decided to make of it can be summarized in one premise: Life is worth living.
Such an outlook prompted him to become a U.S. citizen in 1995 -- 40 years after emigrating to this country.
Citizenship meant drawn-out U.S. history lessons with a tutor, but Kristensen was undaunted.
Wanda Armstrong, his tutor from Literacy Volunteers of America, helped him pass his citizenship exam and continues to work with him, now on computer proficiency.
"Knute (pronounced ka-noot) has taught me far more than I've taught him," she said. "He often knows more about computer programs than I because he works so hard on them when we're apart."
Life, Kristensen said, has become particularly wonderful for him since his relationship with Mandigo took root last year.
The two were introduced through a mutual friend. Mandigo recalls being plagued by nervousness during their first visit.
"I brought along a script of different topics so I wouldn't run out of things to say," she recalled.
The script turned out to be a useless prop as the two developed an immediate rapport.
"Eventually, I found myself racing down to visit him, we had so much to talk about," she said.
"One day I brought over a painting in progress and Knute started giving me ideas on how to develop it," she said. "I discovered he has a better eye than I do."
The conversation veered back to tonight's gala and what Kristensen will be wearing.
"He'll be in a navy blue suit and he's gonna look like a million bucks!" Wyant exclaimed.
Kristensen's delight at the scenario tugs his lips slowly into a smile. The smile remains as his already-ruddy complexion deepens in color, his cheeks throbbing with blush.
When it is pointed out that his letters provided comfort and inspiration to Zaslow in his final days, Kristensen, immobilized and silent, becomes effusive.
His eyeballs are universes unto themselves, rolling slowly, gazing intently and welling with moisture.
His smile remained
fixed beneath his deep blue eyes as they shone through a gloss of tears.