STILL SO MUCH TO SAY IN HIS ART
As ALS narrows his future, Huntington Bay artist Mark Kuhn focuses on his legacy
BY JIM MERRITT
Newsday.com lilife@newsday.com
7:45 AM EST, February 28, 2009
Mark Kuhn's latest works of art seem to vibrate with incandescent color.
Decorating the walls of Kuhn's Huntington Bay house, the paintings are
filled with interlocking green, blue, pink and orange figures, which dive,
somersault and leap on the canvas.
Friends and family see them as a final burst of creativity for Kuhn, an
artist who is in the final stages of amyotrophic lateral sclerosis, a
degenerative disease affecting nerve cells in the brain and spinal cord, and
also known as Lou Gehrig's disease.
Around Thanksgiving, Kuhn, who has bulbar-onset ALS, a particularly acute
form that at first affects the throat area, lost the ability to speak. In
January, doctors told Kuhn he had no more than six months to live, according
to Bennett Kuhn, 20, his son. Bennett is taking an open-ended leave of
absence from his philosophy and Arabic studies at Tufts University in
Medford, Mass., to help care for his father. He also speaks for him.
"It's a dehumanizing disease, or has the potential to be that," Bennett says
of ALS. His father's days are filled with a withering medical regimen. On
weekdays he receives nursing care visits. He moves about his home in a
wheelchair or with a walker. He has to consume 4,000 to 5,000 calories a day
through a feeding tube to maintain weight, and yet has lost 45 pounds in the
past two years. Twice a day he takes Rilutek, the first FDA-approved ALS
drug, but it has been shown to increase life expectancy by only 10 percent,
Bennett said. Painkillers and muscle relaxants are taken for comfort. There
are no other treatments, and no cure.
'Something he has to do'
However, Kuhn's mind isn't affected, and he knows about his prognosis. "He's
well aware of what's going on," said his wife, Donna Simonetti, 58, a
compliance officer for a New York City investment bank, who uses her maiden
name for professional reasons.
Bennett elaborates on his father's painting: "It's something he feels he has
to do. He's always turned to painting in difficult times. He's reaching
toward immortality with his art."
Kuhn, now 57, has been filling his remaining days working in his artist's
studio, which has been relocated from the basement to the den. As his wife,
son and daughter, Paige, 23, a Manhattan fashion designer, stood nearby on a
recent Saturday, Kuhn dabbed acrylic paint on a canvas attached to the den
wall. His head was held up by a red silk chin rest sewed for him by his
wife. His walker was at his side.
He has strength to paint an hour or two each day, occasionally asking for
art supplies by writing on an erasable board. Ten canvasses have been
completed in the past year, and he hopes to complete five more for a July
exhibit at the Art League of Long Island gallery in Dix Hills that was
booked about a month ago. He titled it "The Lifeline Series."
The quality of the paintings, as well as the conditions under which they are
being created, impresses fellow artists from Long Island.
"His latest works are the most daring that I have ever seen in his work,"
said Stan Brodsky of Huntington, professor emeritus of art at the C.W. Post
Campus of Long Island University in Brookville.
Brodsky, a friend who has exchanged studio visits -- and critiques -- with
Kuhn, noted the "brilliance purity of color and the inventiveness of the
shapes and forms" in the new paintings.
"The paintings are terrific," agreed Sue Contessa of St. James, an abstract
artist and family friend who has visited during Kuhn's illness. "I don't
know how he's been able to do it. He's got quite a will to prevail."
Before ALS began to take its toll in late 2006, Kuhn was a physically
active, talkative man. "He had this really big laugh," Contessa recalled.
Simonetti called him "intelligent and articulate," adding, "he had so much
to say."
Lon S. Cohen, director of communications for the ALS Association Greater New
York chapter, said that although the disease leads to the patient being
"fully paralyzed . . . for the most part, the mind is fully functioning."
Cohen continued, "We have plenty of people who are patients who continue to
try to work as much as they can." About Kuhn's paintings, he added, "It's
got to be very uncomfortable and very hard, so there's a lot of will there
to do it."
Unconventional teacher
Kuhn grew up in Minneapolis and received a fine arts degree in the early
1970s at the University of Minnesota in Minneapolis. He and Donna met while
he was living in San Francisco in the late 1970s. They married and lived in
a loft on Staten Island but moved to Huntington Bay 19 years ago, after
their children were born. Kuhn taught drawing and painting from the 1990s
until about two years ago at the Art League, where he was known for his
unconventional teaching methods, his wife said.
For instance, while other instructors brought in fruit or flowers to draw,
Kuhn would take his collection of Mexican masks to class and ask students to
draw inspiration from them. "We did a number of trips to the Yucatán, which
had a big influence on his work," his wife said.
On another occasion, he brought in his collection of 100 women's shoes,
including shoes borrowed from his wife and daughter, and told the students
to draw them.
Surrounded by sculptures
His main medium was sculpture. He carved large wooden statues from trees,
with a chain saw in his backyard. A wooden mermaid with flowing hair and a
flaring fish tail is among the 10 sculptures displayed around the property,
which slopes toward nearby Huntington Bay.
His work has been exhibited at the Bryant Library in Roslyn and several
other Long Island galleries. In addition, he has permanent sculptures in
public spaces, such as the grounds of Our Lady Queen of Martyrs Church in
Centerport and at Huntington Town Hall.
Msgr. T. Peter Ryan, Our Lady Queen of Martyrs' pastor, is the family's
spiritual counselor. In 1996, he recalled, Kuhn approached him about doing a
statue for the parish grounds. Kuhn received a commission but volunteered
most of the time it took to complete the work. Kuhn spent three months on
the project, first digging a foundation and then carving the statue from a
Tulip tree from Cold Spring Harbor.
A traditional image of Mary with hands outstretched, the statue stands near
the church building on Centerport Harbor. "People go there to pray and
reflect," Ryan said. Each May, parish children say the rosary and lay
flowers around the statue, he added.
Kuhn also made a mobile sculpture 10 years ago for the lobby of Huntington
Town Hall on Main Street in Huntington Village. Comprised of 48 images
attached to eight stainless steel lines -- and including icons such as an
American flag and a fish -- Kuhn's "Town Hall Mobile" was the "inaugural
project of the Huntington Public Art Initiative" when it was created in
1999, according to the town's Web site.
Beyond sculpture, Kuhn had painted before; because of the ALS, he has become
unable to handle the heavy equipment and physical work needed to sculpt.
Kuhn began to experience symptoms in late 2006 and had suffered a gradual
loss of muscle control and his voice over the past year.
Even as they deal with medical issues, the artist and his family are looking
forward to the Art League exhibit. They say that continuing to paint has
given special meaning to the remaining time.
Bennett said that his father's output demonstrates that "the human spirit is
fundamentally expressive."
Despite their courage, they expressed no false hopes. Said Simonetti: "This
disease has no happy outcome."
~Best viewed with a positive attitude~