In silence, a stronger voice

When Kevin Rowland ’94 and Jane Stentz Rowland ’94 started dating during junior year, they would talk nonstop, sharing a quirky sense of humor and a passion for music.

“We felt very comfortable with each other and became friends very quickly,” Jane recalled. “The more we talked, the more I realized this was someone who would be in my life forever.”

It seemed that nothing could interfere with the easy flow of conversation that has been a hallmark of the Rowlands’ 30-year marriage — nothing, that is, until Kevin was diagnosed with amyotrophic lateral sclerosis in 2019. As the progressive neurodegenerative disease gradually robbed him of his ability to speak and walk, Kevin learned new ways to remain engaged with life and his family — and to help other ALS patients do the same.

Kevin retired from his job as a software engineer shortly after his diagnosis to spend more time with his family. He learned to communicate by using eye-gaze technology that enabled him to type messages on a computer — and also to control wheelchair movements — through his eye movements.

“It’s really important and really rare to have a researcher with the combination of his expertise in technology and engineering as well as being a user of the technology."

But it wasn’t enough for Kevin to focus on his own well-being. He wanted to contribute his coding and software engineering skills to a Northwestern University research project, known as Project Drive, dedicated to designing the next generation of wheelchair controls. The Project Drive team is building intelligent powered wheelchairs that assist severely motor-impaired drivers. Kevin has made himself such an indispensable member of the team that his participation was written into the second phase of its National Science Foundation grant.

“It’s really important and really rare to have a researcher with the combination of his expertise in technology and engineering as well as being a user of the technology,” said Brenna Argall, a Northwestern professor who leads the project.

In November 2023, the Rowlands traveled to Chicago to meet the Project Drive research team and to have an underlying sensor array and safety system, known as LUCI, installed on his wheelchair. LUCI includes sensors around the base chair that halts its motion when obstacles are detected. Once back home in northern Cincinnati, Kevin has continued to test the device and collect data. 

“Being both a user and helper in shaping this technology has been a pure blessing,” he wrote in a blog post.

A FAITH JOURNEY FORGED IN TRAGEDY

When asked what he would want his children to learn from the family’s response to his ALS diagnosis, Kevin typed his response with lightning speed: “Never give up on faith.”

Only seven years earlier, Jane would have been startled by her husband’s response. Even during their early courtship at UD, they had never been on the same faith journey. Kevin admired Jane for her practice of attending afternoon Mass at the chapel, but he never joined her.

“One of the things I was attracted to was her faith,” Kevin said. “Her genuineness, kindness and wit had me re-examining the source of goodness in the world.”

They married in 1995, while Jane was pursuing a graduate degree in psychology from the University of Notre Dame. Their son Zachary was born in 2000, and they adopted daughter Lia and son Kaleb from Ethiopia in 2009. Jane confessed that her faith fell by the wayside during those hectic years of motherhood.

But their faith journeys diverged more dramatically after losing their infant daughter Anna in 2003 and suffering two subsequent miscarriages.

The couple grieved very differently. Kevin buried himself in his work, reverting to his “scientific-only view of the universe, where life was just random chance.” At first Jane, too, pulled back from her faith, she said, “so God had to very gently bring me closer.”

One day, she had a revelation: “I thought back to watching my baby girl in the hospital … . I would have taken her place to make it better. If I am capable of feeling that way, how much more compassion would an infinitely good parent feel?”

More than a year before his diagnosis, Kevin secretly started going to chapel every day. Ever the scientist, he wanted to find out what might be missing in his life.

“If my wife could go through the same things that I did and still come to church and truly be changed by it, then I wanted to find out why,” he said.

Jane tried to conceal her joy when Kevin finally told her about his chapel visits.

“God knew what he was doing, bringing him back to Him before his diagnosis."

“I didn’t want to scare him off by getting too excited,” she said. “But now we can talk about our faith so comfortably and so naturally.”

The couple feels thankful that Kevin rediscovered his faith at the time he did. “God knew what he was doing, bringing him back to Him before his diagnosis,” Jane said.

FINDING PURPOSE AND JOY

Daniel Vance, an occupational therapist involved with Project Drive, convened a group of ALS patients with software expertise, including Rowland, for monthly brainstorming sessions.

“I think it gives them a sense of purpose when they collaborate and work together, since many are more isolated than when they were working,” Vance said.

But Kevin’s contributions extend far beyond his coding wizardry.

“Kevin brings a lot of fun and joy to our meetings,” Vance said. “He makes it clear that he considers all of us his friends. He is an amazing person who brings a joy and gratitude to the time that he has left.”

In February the Rowlands decided to invite hospice care into their home to help manage Kevin’s symptoms. Jane and Kevin enjoy watching science fiction series — the likes of Star Trek and Resident Alien — and hanging out with their kids. 

“We hope to provide a good picture of what a marriage is — that it’s about sacrificing for one another. We signed up for walking on this journey together, wherever it takes us."

“We hope to provide a good picture of what a marriage is — that it’s about sacrificing for one another,” Jane said. “We signed up for walking on this journey together, wherever it takes us.”

And throughout their journey, the UD connection remains strong: Oldest son Zachary graduated in 2022 with a computer science degree, and daughter Lia plans to enroll this fall as a business major. Kaleb, 16, is a sophomore in high school.

“I don’t feel like I was cheated out of my life,” Kevin said. “I actually feel like I get to live just as much of my life now as I would if I were to grow old with my family. It’s just that now it comes in a concentrated form.”

In a 2023 blog post, Kevin made it clear that there is no longer a separation between the man of science and the man of faith — that his scientific nature can be a vessel for his service to God and his fellow man.

“I just hope that I’ve done right by the talents given to me,” he wrote, “and long for the phrase, ‘Well done, my good and faithful servant,’ when it is finally my time to come home.”