Fifth Annual Scott Carlson Road Race gears up to fight ALS
By JONATHAN GIBBS
03/03/2005

Imagine this: You have barely grazed the skin of your life; you're 35 years old, a competitive triathlete in the best shape of your life, you're head-over-heels in love and you have a great job as a software designer that promises to fund all of the above. You just got back from an exhilarating surfing vacation on an exotic peninsula in Costa Rica with the woman of your dreams; life seems limitless and everything seems possible.

Now, imagine this: You get a death sentence, an early invitation from the Grim Reaper that cannot be turned down; he's sent a cab to come get you and the ride promises to be a slow but inevitable trip, one that will rob you of all of movement and leave you helpless as an infant. The small, persistent twitch that started like five strands of piano wire dancing inside the skin on your shoulder is the sound of the cab's horn blowing, and by the time the cab gets to you, there will be no muscle in your body that will be able to move.

You have amyotrophic lateral sclerosis (ALS), most commonly known as Lou Gehrig's Disease; you are going to die, there is no cure and so there will be no last minute call waving the cab off. The only choice left to you is this: How are you going to die? Feeling sorry for your plight, wondering why this unspeakable cruelty is being forced on you? Are you going to go down into a dark hole of anger and shut everyone else out and refuse offers of help? Or will you decide to take on the disease with the only weapon you have - your Spirit - and shame it with your dignity, winning the war over its dark embrace, even as your failing body loses the battle to the disease's insidious, cold persistence?

That is what happened to Scott Carlson of Cowesett in 1998, and those are the choices he faced. Scott chose the latter. Although he died on December 2, 2003 at age 39, he won the war because his Spirit, manifested by those who continue to love him, continue the fight from beyond the grave, empowering those he loved, and those who loved in return, to persevere in the fight to discover the dark secrets of a still-little-understood disease and find a way to cure it. Scott died about 15 months ago, but he left the rest of us with a race; two races, actually.

The big race, the one to find a cure for ALS, will be given a boost by funds raised by the Scott Carlson Memorial Road Race on Saturday, April 30 in Goddard Park. The race, which is sponsored by the East Greenwich Rotary Club and supported by a host of local businesses, is in its fifth year and has raised $48,000 for the RI chapter of the ALS Association since it was inaugurated in the spring of 2001.

The nature of The Beast
Here is the mechanical definition of ALS: It is a degenerative disease that usually attacks both upper and lower motor neurons and causes degeneration throughout the brain and spinal cord.
Here is another definition: ALS is a prison master that attacks from within your own body, like a trusted friend who one day drives off with your motor home, wife, children and everything you hold valuable and important. And like an approaching army, it steadily captures new territory within your body, rendering it paralyzed.
The only known cause of ALS is a mutation of a specific gene: the SOD1 gene. This mutation is believed to make a defective protein builds up around, and is toxic to, motor nerve cells. The SOD1 mutation accounts for only one to two percent of ALS cases, or 20 percent of the familial (inherited through genetics) cases. Familial ALS represents between five to 10 percent of all cases. The rest arise, seemingly out of nowhere, spontaneously and mysteriously, making seemingly random attacks on previously healthy adults. ALS can strike anyone, anytime.
When it struck Scott, just after returning from a surfing trip with his then-girlfriend, Hillary J. Phipps, his first reaction was to approach it as one of the engineering problems he faced at work. Scott soon discovered the cold, hard fact that there is no cure for ALS, and options for extending the life of one afflicted by ALS are limited. He would not only lose the ability to ski, or play his treasured guitar, he would lose the ability to eat, walk or breathe on his own and then he would die.
At the same time, with both fully aware of the way their love story would end - at least in this corporeal sphere, he and Hillary eloped in February 1999. In hindsight, having lived in a marriage that encompassed sorrow as well as bliss, Hillary says there was never a choice in the matter.

Hillary's story
Scott and Hillary met at a triathlon in North Kingstown, and for their first date together in August 1997, went surfing at Point Judith. They established a relationship and subsequently talked about marriage planning a big celebration of their union. But ALS arrived and she decided they should elope in order to not waste any of the time left to them. That's how strong her love was for Scott.
"Love knows nothing but a deep, peaceful joy," Hillary said in a recent interview. "That's the one thing I truly wanted for Scott and that is the one thing he wanted for me with all his heart. This was a contract we made with each other and ourselves; nothing could break it, not even a devastatingly destructive and ruthless disease like ALS."
Hillary became Scott's lifeline as his body broke down, bathing, feeding and moving him. He had a noninvasive breathing device that required careful and specific placement as she moved his 120-lb. body from bed to his office chair to the couch and back to bed. It was their daily dance.
"We danced this dance every day and every night," said Hillary. "They were complicated, yet very primitive steps that were so heavily-laden with sorrow for a couple to have to learn. They were especially sad steps to have to practice, having not practiced the more traditional steps of falling in love at a young age, then marrying and creating and raising a family."
And while parents, friends and professional caregivers all lent physical and emotional support, Scott and Hillary alone faced this day-to-day struggle with a disease that never sleeps.
"Scott is the one who had the disease, but I had it, too." Hillary said. "There were always three of us in the room: Scott, me and the Beast.
"A person living with ALS can never take a break or a vacation from coping with a beast that has infiltrated every second of every minute of every hour of every day in his life. I was one step removed from Scott's life of increasing alienation from the world. I could never take on his disease but I could get as close as any one person could, my love for him was that strong.
"I married him and committed my life to being with him and to being by his side through health and sickness, not knowing what that really meant. Yet, Scott having ALS did not have an affect on my feelings for this man. Nothing could. And this is also why continuing the race in his name in order to fight the thing that took his life is so important to me."

Making himself vulnerable
The genesis of the race came when Hillary and her family decided something had to be done to raise money as well as awareness to combat the disease that was taking one of their own. Together with Hillary's mother, local realtor and East Greenwich Rotary Club member Joyce Phipps, the first road race dedicated to fighting ALS was organized for April, 2001 (originally called the Adversity Leads to Success race, the name was changed this year to reflect Scott's death and honor his life). The Rotary Club has been instrumental in putting the race together every year since.
"Scott relished the thought of friends and family having a fun day at Goddard Park, a special place for us, and in knowing everyone would come to support a worthy cause," said Hillary, who is the event's chairperson this year. "It wasn't just his cause but it was also that of those less fortunate than we who were battling the same disease."
The body that was wheeled out to the finish line in Goddard Park that first year to cheer on those who ran in his honor was not the same body that had so loved to go for long runs. But Scott made the vision of his altered physical appearance speak as testament to the awful toll ALS exacts on a body. This, and the visits he made to talk to students at schools around the area, may have been ultimately the greatest, and bravest physical act this proud athlete performed. He made himself beautifully vulnerable by allowing people to see why they were running and why money was needed.
And people have responded in the past. With a full year having passed since his death, the atmosphere around the race, its planning and its organization is fraught with memories.
"The race is symbolic of a community's effort to help one of their own," Hillary said. "It has special meaning to me because it was inspired by my late husband, Scott, who was a beacon of hope, strength and clarity for everyone he met.
"So, how lucky I am, and Scott was, to live where people are so kind and generous as to reach out their hand to help us. In light of his story, many a heart can be filled with peace, knowing that a man lived a genuine life with adversity and that he died in the same manner. Scott's life was authentic. I'd like to think Scott has entered into the invisible world to complete his transformation into the fine and wise spirit he is, surfing on the ocean of the Universe, creating a music that we who so painfully miss him long to hear. How could his spirit be any different?"
Know this: We all hold a strangled and tenuous lease on Time. It holds all the cards and can reach out and slap us across the face at any time, just as surely as a blind man can be led down the wrong road. But it also offers us some magic to go along with the loss.

Modified: 03/04/05 09:16 PM             contact: turtle@teamals.org