"So when the day comes to settle down, who's to blame if you're not around? You took the long way home..." -Supertramp, 1979
Fred Siwak not only stops and smells the roses along the way: He looks for ways to capture their beauty in his artwork.
From coast-to-coast... and back again
Siwak, 49, graduated from the University of Connecticut in 1974, then worked as an employment specialist until he moved to San Francisco. After working in a variety of jobs, Siwak became a paralegal for 10 years.
Then, the story took a twist that most folks with ALS will find familiar.
"It's a bit like nightfall," he explains. "The sun is getting gradually dimmer, but you don't really notice it until it's dark."
In 1997, Siwak began to experience difficulty using his right hand. He also noticed that he didn't have as much energy as he did before. Then, he started to limp when he walked, and found himself falling frequently.
"One time I fell in the middle of the street," he recalls. "Everyone thought I was drunk, and no one helped me."
In the spring of 1998, he received a diagnosis of ALS. "Once you're diagnosed, then you start looking back and you can see the signs," he says.
Siwak was fitted with ankle-foot orthoses to help him walk, and he began to attend ALS support group meetings. He soon concluded that his days of independent living were numbered and decided to move back to his native New England, where his family lived.
Taking the long way home
"This disease is pretty overwhelming," Siwak says. "You don't think you're ever going to get something like this. I was always physically active. I exercised, I walked all over San Francisco, I hiked, I was always outdoors."
Siwak packed his sleeping bag, some clothes and a cooler in a van and set out. "It took me all morning just to load those few things into the van — something that would've taken most people a few minutes."
The drive itself took longer, as well — but this had less to do with Siwak's ALS than with the route he chose.
"I drove over 6,000 miles," he says. "It was my last chance to see the West."
"Each day, I rested and reserved enough strength to do things like pump gas and turn the key in the ignition."
First, he drove to Nevada, then to the Grand Teton Mountains and Yellowstone National Park in Wyoming. From there, he traveled through Montana to Alberta, Canada, and back down through Oregon to California, before finally pointing his van toward the East Coast.
From explorer to artist
"That's Fred's style — what makes him unique," says recently retired MDA Health Care Services Coordinator Marcia Randall. "He sees life as a journey, and he's determined to capture everything he can along the way."
And while ALS has slowed down the activities of Fred Siwak the explorer, it's given him more time to develop Fred Siwak the artist. "Before ALS, I just dabbled," he says.
Siwak carves images into linoleum tiles, which he then uses to create prints. After the prints dry, he colors them in with pastels, making each print unique.
"It takes months to carve each block," he says. "Because I'm adamant about doing everything myself."
Siwak's art has won rave reviews, earning first prize at the Topsfield, Mass., Fair in both 1999 and 2000. In December, he joined prominent Massachusetts artists Tina Carrick and Linda Siwak (Fred's sister-in-law) to present the Light and Vision exhibit at the Topsfield Library.
Attitude and daily life
These days Siwak uses a power wheelchair to do his exploring by day, and regulates his breathing with a BiPap machine at night. He can no longer grip with his hands, so he's adapted a universal cuff eating strap with a special pocket that holds his carving chisel in place.
He's learned that the keys to daily life with ALS are controlling stress and conserving energy.
"I just found that I get peace of mind breaking things down to day-to-day problems," he explains. "I get irritated when I don't have things set up the way they need to be, and that's when I have to remind myself to take things easier."
Perhaps the most difficult challenge for the fiercely independent Siwak has been relying on others for help.
"A lot of people give support in small ways, and MDA — in particular — has been great," he says. "I just like the tone of how they don't forget about me, and I get swift treatment without a lot of forms."
ALS may ultimately win its battle with Fred Siwak, but don't be surprised if it takes extra innings to do so ... he's always likely to take the long way home.