When Ken Brown found out three years ago that he had ALS, he was forced to think about what he wanted most from life.
At the top of that list? To see both of his children graduate from the University of Minnesota.
He was there when his daughter, Keegan, graduated in 2015. And he had planned to be at Mariucci Arena this spring when his son, Collin, graduates. But just last month, Ken’s doctor told him he likely wouldn’t live long enough to attend the May 13 ceremony.
Ken’s wife, Patti, posted that heartbreaking news on Ken’s Caring Bridge journal, where a family friend saw it and wrote to U President Eric Kaler, asking him to “grant a man his final wish.”
So, for possibly the first time ever, the University of Minnesota will host a one-student graduation ceremony for Collin Monday. His dad will be there to see it.
“I don’t want the grief of my passing to impact his studies,” said Ken. “This [the graduation] will give me the opportunity to close the book on that chapter in his and his sister’s lives.”
Ken is now paralyzed in his legs and left arm. He’s able to use his right hand some — to maneuver his power wheelchair, shake hands or scratch an itch with a silver back scratcher.
He speaks slowly, one deliberate word at a time. Because his speech-recognition software can no longer pick up his voice, Colin translates for him.
“I have not had a request like this in the six years I’ve been president,” Kaler said. “I was touched by the letter and very pleased to accommodate this family’s wish.”
A diagnosis, an opportunity
Until 2014, Brown, of Champlin, was at the top of his game. He was director of quality engineering at Boston Scientific, and an avid runner who had recently started riding motorcycles.
But after struggling to run a 6K race that fall, something he’d been doing for 15 years, Brown knew something wasn’t right. After multiple visits to multiple doctors, he was diagnosed with ALS, a progressive neurodegenerative disease that attacks and kills the motor neurons in the brain and spinal cord. There is no cure.
Over the next few years, Ken participated in ALS research studies, followed strict dietary recommendations of a biochemist and prayed for divine healing. Knowing his time was limited, he continued to live his life with purpose.
“It’s a double-edged sword,” Ken said. “You’re losing something but you still get the opportunity to live your life on your own terms.”
His terms meant traveling to Guatemala with his church to help with a construction project at a girls’ orphanage. It meant taking his family to Honolulu and hiking the Diamond Head Trail, and attending U football games where his daughter was a cheerleader. Swimming, biking and motorcycling, too.
“He rode that thing until it wasn’t safe for him to ride it anymore,” Collin said.
(On this, Ken begs to differ: It was the winter weather that stopped him from riding motorcycles, he said, not ALS.)
Like father, like son
Collin was nearing the end of his freshman year of college when Ken got his diagnosis.
Both of them immediately thought about graduation.
The median life expectancy for people with the fatal disease is three years. Ken knew that living to see Collin graduate would be a stretch.
Collin admits his college years have been difficult as he balances campus life with the constant tug of wanting to help at home. Every week, or whenever Patti calls, Collin returns home to watch episodes of “Blue Bloods” with his dad and help with simple tasks, such as spraying a minty-flavored solution into Ken’s cheek when his mouth gets dry.
During that time, he’s also come to know his dad on a deeper level. If there’s a silver lining to ALS, Collin said, that is it.
“As it stands today, [ALS] is a death sentence over a period of time. But it still gives you that opportunity to know and be more intentional about the time you’re spending with your loved ones,” Collin said. “Maybe I wouldn’t have pursued as much advice and wisdom from him in college if I didn’t have that kind of prompting to say that my time with him is limited.”
The two have bonded over their love for ’80s music, “dad jokes” and conversations about engineering. As old friends come to the house to tell stories and say goodbye, they tell Collin he sounds just like his dad did in college.
Like father, like son, Collin will be graduating with an engineering degree.
Already, his education has come in handy. He’s made adjustments to his dad’s wheelchair, which Ken uses full time now. Earlier, he built a towing implement his dad designed to haul a walker behind his electric scooter. The two also collaborated on a ladder device that Ken used to hoist himself up when he fell.
“Sometimes he would propose ideas that I thought were pretty ridiculous,” Collin said. “For a while after he was unable to use the stairs, he wanted to hook a sled up to a winch and build a frame to slowly lower himself to the basement.”
“I’m always thinking,” Ken said, flashing the same warm smile he’s always had. “It would’ve worked, but it wouldn’t have been safe.”
On Monday, instead of the pomp and circumstance in a sports arena filled with hundreds of his classmates, Collin will graduate with 20 family and close friends, and with his father by his side.
The hourlong, one-student ceremony will be quiet and simple, a time for reflection on the past and dreams of the future. A member of the U’s board of regents will deliver the diploma and Kaler himself will give the commencement speech. And Ken’s final wish will have been granted.
“I had hoped I would be healed, but I knew I’d be healed either in this life or the next,” he said. “God is good and everything that is, is his plan.”