‘The luckiest guy in the world’: Shawn Way faces ALS with focus on living, not grieving
By Paul Anthony Arco
Special to the Rock River Current
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ROCKFORD — It’s dinner time and Shawn Way’s east side Rockford home is bustling with activity.
Way’s daughter Sarah Gorman and her husband, Danny, are busy preparing dinner in the kitchen. The mouth-watering aroma of champagne shrimp pasta fills the air. Another daughter, Hannah Way, is home and so is Way’s wife, Kathy, who has just walked in from a hectic day at work.
Sporting a black Mauh-Nah-Tee-See Club golf polo, dark shorts and weathered sandals, Way is resting in his favorite chair in the busy living room.
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He’s surrounded by keepsakes that matter most to the former Rockford banker and nonprofit CEO, including family photos, a basket of get-well cards, bobbleheads representing his favorite teams including the Green Bay Packers, Milwaukee Bucks and Chicago Cubs. There’s an autographed photo of his all-time favorite pitcher, hall of famer Jim “Catfish” Hunter, who, in 1999, died from amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.
But there’s more than just mementos housed in this room.
There’s an oversized humidifier sitting not far from Way. There’s an IV pole standing next to the chair that connects Way to a feeding tube that provides precious nutrients four times a day.
There’s also a suction machine and a cough-assist device close by that clears secretion from Way’s lungs by creating a natural cough.
The fast-paced days of operating a bank, running board meetings and attending chicken dinners are a thing of the past for the 60-year-old Way. He’s no longer worried about staffing issues, client retention or profit margins. Instead, he’s in the fight of his life.
Devastating diagnosis
Way’s health problems started in the fall of 2021, when he noticed weakness in his right hand.
“I couldn’t even push a golf ball onto a tee,” the avid golfer said.
Things got worse in 2022. Way had trouble sleeping, his breathing labored, and his right hand was still giving him fits. By his own estimation, he lost 10% of his distance off the tee.
Not good for a six-handicap golfer. Is this what turning 60 is all about, he wondered. Clearly, something was wrong.
Way underwent a battery of tests. He wasn’t allergic to the family cat like he had thought. He was diagnosed with sleep apnea but knew that was the least of his problems. People noticed his labored breathing – he huffed and puffed just walking up a flight of steps. He was losing weight and muscle mass.
After months of waiting, Way finally got in to see a neurologist in Madison for a neuromuscular evaluation. No diagnosis was determined at that appointment.
After returning home, Way got worse. On Jan. 19 of this year, he experienced respiratory failure and was rushed by ambulance to the hospital where he spent nearly six weeks connected to a ventilator.
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More tests were ordered. On Feb. 1, Kathy and their six children huddled in Way’s hospital room – some of the children in person and others by video – as doctors revealed the sobering diagnosis of ALS.
“It didn’t fully sink in at first,” his daughter Sarah said. “We had all these questions. Will he ever walk again, drive again, talk again? The answers were no, no, no. That was the worst part.
Even though we were holding on to hope, life was going to look totally different.”
According to several studies, 75% of ALS cases are limb-onset, beginning in the arms or legs. But Way has a rare form called Bulbar-onset ALS, which typically starts with symptoms like slurred speech, trouble chewing and swallowing, and changes in speech patterns, including a hoarse or strained voice.
Despite having a diagnosis, doctors weren’t sure how ALS would impact Way – at least initially.
“They told us he had six to 12 months to live on a vent and would never speak or eat again,” Kathy said.
Way didn’t get the news until he came out of sedation at the end of February. “It wasn’t shocking – clearly I had serious issues,” he said. “I was such a mess. I spent so much time in the hospital that I really didn’t care what happened at that point.”
But Way surprised doctors and even his family by the time he came home. He gradually began talking and then walking again and came off the ventilator during the daytime. Way now sleeps in a hospital bed at home, in the den off the kitchen. This is also where he watches golf, Cubs baseball, anything but “The Bachelor,” a must-watch program for the women in his household.
Way has a permanent tracheotomy that allows air to fill his lungs. Still, he struggles to breathe, has a raspy voice and a persistent cough. Attached to his tracheotomy is a Passy Muir, a valve that helps Way talk.
“There were days after I came home from the hospital when I was feeling great about things,” Way said. “I thought I was going to lose this feeding tube and get back to some normalcy. I’m not sure I see that happening now.”
Love at first sight
It was a high school baseball game in 1980 that brought Shawn and Kathy Way together. Kathy was a cheerleader at Boylan, a year behind Way in school. He was a four-year pitcher for Boylan’s baseball team. They met on the last day of Way’s senior year, when he took the mound for the Titans against West High School on the well-worn baseball field behind Welsh Elementary School.
Kathy was there with a friend who was dating one of Way’s teammates. After the game, the friend brought Way to the fence where he made his best pitch to his future wife. “I fell in love right away,” said Way, who married his only girlfriend in 1987.
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Life ever since has centered on family, career and service to the community. The latter is in his DNA. Way grew up in Rockford with his parents and three older siblings. Way’s late father, Bud, owned Quality Metal Finishing in Byron and died at age 51, when Way was 19. His mother, Joyce, enjoyed fundraising for several community organizations and received a Spirit of Caring Award. Way’s grandfather, Burt, won the prestigious Excalibur award for his community work.
ALS wasn’t the only time the Ways exceeded medical expectations of doctors.
In 1989, the Ways were blessed with a baby boy, Alex, who’s now 34. Due to medical complications, doctors said Kathy wouldn’t have more children. But then came their miracle baby Hannah, now 30, followed by four more miracles: Emily, 29, Sarah, 26, Kate, 25, and Michael, 20.
All of their children are currently in the area. Kate moved home from San Francisco and Sarah returned from Arizona before their dad fell ill. Hannah is a teacher in Minneapolis who came home for summer along with her husband.
“God works in amazing ways,” Way said. “This would have been harder for all of us with them so far away.”
Magnetic personality
Way earned a marketing degree from Northern Illinois University. His first job was with AMCORE Bank, where he spent 20 years, the first five in marketing, before becoming a personal banker.
In 1998, Way joined the board of Milestone, Inc., a nonprofit organization that provides services for children and adults with developmental disabilities.
Eventually, Jim Hamilton, the founder of Milestone, asked Way to succeed him as CEO. Instead, Way decided to help Tom Budd, a high school classmate and good friend, launch Rockford Bank & Trust.
“It was scary and there was a lot of risk to starting a bank, but we had fun doing it,” Budd said. “It all worked out and it’s a memory that will bond us forever.”
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Way spent five years getting the bank up and running before Hamilton came calling again. This time Way couldn’t refuse; he assumed leadership of Milestone for the next 13 years. “Telling Tom that I was leaving was one of the hardest things I’ve ever had to do,” Way recalls. But Budd could see that Way was the right person for the job.
“People are drawn to Shawn,” said Budd, who also serves on the Milestone board. “He has a good business sense, he knows a lot of people in the market, and he’s good at fundraising and furthering the mission.”
Today, Way is helping the nonprofit raise funds to support its 50th anniversary celebration this summer. He recently was named an emeritus member of Milestone’s foundation board of directors.
“I’ve always wanted to help people,” Way said. “I envisioned another six or seven years before walking away, but that went south. It’s crushing.”
Instead, he wakes up early, gets off the ventilator and gets his first medications and feeding of the day, assisted by Kathy, who is a trained nurse. On the days Kathy goes to her job in a physician’s office, daughter Sarah assists him. She put her hair-styling job on the back burner.
“I don’t know how people who struggle with serious illness do it without someone like Kathy,” Way said. “The stuff she does every day is mind blowing. She’s an angel, and Sarah is just like her mom.”
Wedding bells
When Way returned home from the hospital in March, he and Kathy set short-term goals. His first was to walk to the street corner and back. The next goal was to walk Sarah down the aisle on her wedding day, which he did on June 24 at Holy Family Church.
Afterward, at the wedding reception, Way delivered an emotional speech filled with admiration for his daughter and Danny, his new son-in-law. He talked briefly about his battle with ALS.
Sarah offered her own poignant message about planning what was supposed to be the happiest day of her life during the hardest chapter of her 26 years. “It was bittersweet planning a wedding for weeks when I didn’t know if my dad would be there,” she said. “The fact that he was there, enjoyed it and was truly present, nothing else mattered.”
Way is now looking forward to the wedding of his youngest daughter, Kate, planned for Oct. 14.
“These weddings are the best medicine for our dad,” Sarah said. “It’s another thing to keep him motivated and looking forward.”
Community support
The Way family is astonished by the love and concern shown by friends and strangers alike, expressed in a steady stream of visits, cards, text messages and homemade meals.
“A lot of people are rooting for him,” Budd said. “I don’t know too many people who are as well-loved as Shawn.”
A family friend started a GoFundMe page on Way’s behalf that has raised three times the intended goal.
“Everything has been God driven,” Kathy said. “I pray so hard; that’s what sustains me. The support we’ve received has been overwhelming. It’s what has got us through every step of the way so far.”
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Way remains upbeat despite the daily challenges and future uncertainties. Still, he longs for some of the pleasures he enjoyed in his former life. He misses raking leaves in the backyard on a crisp fall afternoon, smoking fat cigars and playing a round of golf with his buddies at Mauh-Nah-Tee-See, where he’s been a member for years. A golfer since age 10, Way was Club Champion in 2016.
When Way is feeling down, he turns to music. “It gets me right here,” he says, tapping his chest.
One night Kathy stepped into the living room to find her husband sobbing, as he was listening to Elton John’s “I Guess That’s Why They Call It the Blues.”
Kathy pulled her life partner from the couch and the pair swayed back and forth, dancing like they did as carefree college kids so many years ago.
Live for each second
Without hesitation
And never forget I’m your man
Wait on me girl
Cry in the night if it helps
But more than ever
I simply love you
More than I love life itself
I guess that’s why they call it the blues
“We’ve been given a gift,” Kathy said. “Here we have an opportunity to say what we want, show the love that we want, work on any unfinished goals. Shawn can make the best of the end days of life.”
The Way children have learned the hard way to lean on each other during tough times.
“I often describe it as I’m coping with a loss that hasn’t happened yet, while trying to be present in the time we do still have,” Sarah said. “There are hard days, hard weeks, but it all comes back to family and having grace. It’s okay to be sad, angry or snippy. Every feeling has a flame, and eventually that feeling will flame out.”
The uncertainty of tomorrow stalks Way and his family. But he says today is for living, not grieving.
“I don’t know where the goal line is,” Way said. “I’m just living day to day. Yes, I have ALS but I’m the luckiest guy in the world. I have an amazing wife and children, my community and a great career. What more could I ask for?”
This article is by freelance journalist Paul Anthony Arco. Email feedback to news@rockrivercurrent.com.
