As
Lou Gehrig's disease ravaged his athletic body, 39-year-old Scott Carlson was
pained that he could not play music.
The dust collecting on her husband's
favorite guitar, a top-of-the-line Paul Reed Smith, bothered Hillary Carlson.The guitar had been under their bed ever
since Scott Carlson's hand and arm muscles wasted away when he was 35, part of
the devastating neurological condition ALS, or Lou Gehrig's disease.
Scott had to give up his engineering job,
competing in triathlons and surfing, four years ago. He lost the ability to
drive a car, feed and wash himself. He rarely complained. But not being able to
strum his guitar -- that he missed most, he told Hillary.
Tuesday, December 2nd 2003,Scott H.
Carlson died at Philip Hulitar Hospice in Providence. He was 39.
Hillary Carlson recalled the story of her
husband's guitar the day after he died, gazing at the amber-colored instrument
hanging in the living room of their Buttonwoods home.
On impulse, Hillary had e-mailed the
guitar maker, asking if the instrument could be displayed in the house somehow,
even if its owner was too ill with amyotrophic lateral sclerosis to play it. It
was a shame, she thought, to waste such a beautiful thing.
Paul Reed Smith called her a few days
later; Hillary almost dropped the phone.
"Absolutely, put this guitar up,
where people can touch it and see it," Hillary recalls Smith saying.
Smith invited them to come visit him at
his Maryland factory, a trip they both enjoyed. Smith said he'd never read such
a heartfelt note before and he wanted to meet this special couple.
Scott's parents, Alan and Helen Carlson,
of Bethlehem, Conn. were at his side Tuesday, as were his three brothers, Brian,
of Dallas; Glenn, also of Bethlehem; and Eric, of New York City.
Hillary had gone home to check on their
two dogs after staying with Scott throughout the night. The family told her
Scott had opened his eyes to look at his parents in his last moment.
"The hospice nurses said it was the
most peaceful passing of an ALS patient they had ever seen," Hillary said.
"After a very intense five years, the
only thing I ever wanted was to make sure Scott had peace in his heart, and he
did. That is such a gift."
Close friends, many of whom regularly
spent the night at the Carlsons' Hawthorne Avenue home, said Scott's
determination to live a full life, even while dying, changed them forever.
"He had so much enthusiasm for
everything he did, that it was hard to see him trapped in his deteriorating
body," said Tom Ratcliffe, who used to run and surf with Scott.
"But he got so much out of his life.
Most people rush through life without even thinking about their health and
happiness. Scott's suffering gave us all time to think about what is truly
important in life."
Scott met Hillary, a muscle and massage
therapist, at a triathlon in North Kingstown, and fell in love right away. They
surfed at Point Judith on their first date in August 1997.
A few months after he was diagnosed with
ALS in 1998, Scott proposed. The two eloped in February 1999.
"I can't imagine the courage it must
have taken her to say yes," Scott said during a speech at Evening of Hope,
an annual Rhode Island ALS benefit. They began raising money for ALS research,
starting the East Greenwich Rotary Adversity Leads to Success 5K.
Though he struggled with feelings of loss,
anger and sadness as his muscles atrophied and even breathing and talking became
difficult, Scott maintained his passion for life.
Like his dusted-off favorite guitar, Scott
knew that he, too, could still be of use. So he began visiting schools, youth
groups and athletic organizations, sharing his message with young people
throughout New England.
Scott encouraged them to embrace
challenges, set high goals and forge lasting relationships.
He talked about how humbling it was for
someone so active to depend on others for the smallest things, like cutting his
food.
At the same time, Scott also said his
illness opened him up to giving and receiving unconditional love.
"Caring for someone who is terminally
ill profoundly changed my life," said his brother Glenn, who helped care
for Scott one week each month at his parents' house. "Seeing him fight the
battle and choose life, and being able to help him and his faith in us to take
care of him -- it was really like therapy for us."
Scott described his journey to a group of
New Hampshire eighth graders two years ago.
His voice had started to quaver -- a sign
his vocal muscles were deteriorating, and he could no longer walk. But Scott
smiled as he told them "life doesn't end when you're facing huge
challenges."
He said his illness felt like
"walking into a dark room, reaching for the light switch and it's not
there."
"You're in the dark. You ask if your
life will ever be better again," Scott said. "Then it dawns on you,
the light to get through these hard times comes from within. And that flame is
fueled by the love and support of everyone around us."
Now, family and friends are gathering to
support each other and Hillary, whom friends credit with lifting Scott's spirits
as well as tending to his physical needs. This has been a year of loss for
Hillary.
In April, she and Scott had to put down
their beloved dog, Chelsea, who was sick with cancer. Even though tears made it
almost impossible for Scott to breathe, he wept.
One month ago, Hillary's father, East
Greenwich Realtor Richard L. Phipps died at age 70, just weeks after being
diagnosed with pancreatic cancer.
She is planning Scott's memorial, which
will be held at 2 p.m. tomorrow in Buttonwoods Chapel near their home and the
Narragansett Bay shoreline Scott loved to walk.
In lieu of flowers, the family asks
donations be made to VH1's Save the Music, a fund to restore music programs in
public schools throughout the country.
