Orland Park Woman Not Alone in Battle with ALS

What is a journey?

In some cases, it’s about overcoming heartache, forging relationships, relying on love and taking steps toward the unknown.

For Orland Park resident Susan Swanson-Cook, a teacher at Willow Springs Grade School, her journey has brought her to the fight of her life.

Since doctors diagnosed her last May with Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gehrig's disease, Swanson-Cook and those she knows best have fought hard, raising money to help offset her healthcare obligations and to help fund research for ALS.

“It is the most horrific disease anyone can ever be diagnosed with,” said Elizabeth Cook, Swanson-Cook's sister-in-law. “Our goal is to provide comfort for Sue and (her husband) Jeff.”

A kindergarten teacher for 26 years, Swanson-Cook loves her job and won't give it up for any disease in the world. But because of ALS, she's limited to doing clerical work at her grade school two to three days per week.

“She found a fun way of teaching her kindergarteners how to read, write and work,” said Desiree Overzet, a co-worker of Swanson-Cook at Willow Springs Grade School. “She not only touched students’ minds, but also their spirits.”

Once awarded teacher of the year by Sam's Club, Swanson-Cook is described as “compassionate” by her sister-in-law, not only as a teacher but as a daughter and mother of two.

“She's a mama tiger over her baby pups,” Elizabeth Cook said. “She's very protective of her students and her children.”

A Left Field Disease

What causes ALS is still a mystery to neurologists. They know it begins in the brain, however, as nerve cells or neurons begin to die.

“In September,” Cook said, “Susan’s symptoms started to come on rather quickly.”

Eventually, the disease weakens the muscles, causing twitching and an inability to move the arms, legs and body. As patients near complete paralysis, the mind remains sharp.

“It's just unbelievable,” Cook said. “Your mind stays alert but you're in a shell, and you can't move anything in your body.”

Once diagnosed, ALS patients are given three to five years to live. Along the way, they lose the ability to care for themselves.

The average cost of care for an ALS patient is $200,000 per year, Cook said.

In Swanson-Cook's case, family and friends do all they can to lend a hand. Neighbors visit and send her food, co-workers drive her home and throw benefits, and people call and pray, including Swanson-Cook's brother, who has his sister on a 24-hour prayer list, Cook said.

“My entire family is reaching out,” Cook said, “filling in any blanks that need to be filled.”

The Funny Girl

“What a great gal,” Cook said of her sister-in-law. “Just full of love and really, really fun.”

Cook recalled a family vacation to Hawaii—just the girls taking a limo and flying first-class from Chicago. They stayed in a condo overlooking the ocean, that sat baking in the sun. It was an experience only the South Pacific can offer.

“Sue was washed away by a wave,” Cook remembered, “a rogue wave. It came up and smashed her and just kind of swept her and her daughter up. She got up and had seaweed hanging out of her bathing suit. It was so funny.”

A Vegas gal, a voracious reader and an outdoors enthusiast, Swanson-Cook loves life, her mother and her husband Jeff, who has cared for her during the illness, Cook said.

“If you're going to write about anything,” Cook advised, “write about the love between them. What everyone wants in life is (Sue and Jeff's) relationship.”

It's that kind of relationship that makes the difference in life, Cook hinted, especially when those we love are suffering.

But the relationship that offers the greatest comfort, she said, is the one Swanson-Cook has with God.

“You have to grab God on this one,” she said. “There is no other way to get through this, and I think that He has a path for us. He has a path for Susan, and it's part of her journey in life.”

The Susan Swanson-Cook Benefit Fund will host a benefit Saturday, April 9, from 6:30 p.m. to 11 p.m. at VFW Post 6863, in Summit, IL. Tickets for adults are $30; tickets for children are $20.

For more information on the Susan Swanson-Cook Benefit or the Susan Swanson-Cook Benefit Fund, please contact Elizabeth Cook at lzycook@gmail.com, Dr. Frank Patrick at 708-839-6828 or Bob Swanson at bbswan@att.net. Donations to the Susan Swanson-Cook Benefit Fund also can be sent to Willow Springs School, c/o Superintendent Frank Patrick, 8345 Archer Ave., Willow Springs, IL 60480.