“There’s Still A Lot of Life to Be Lived”: Steve Kowalski’s Story


Steve Kowalski was active and healthy in 2017 when he says he noticed his toes weren’t working quite right. That, coupled with a few inexplicable falls, led him to get it checked out. After a two-and-a-half-hour doctor’s visit, he was diagnosed with ALS.

“I equate it to being hit by lightning on a sunny day, because it was kind of out of the blue,” he said. 

Steve was alone in his doctor’s office when he was diagnosed. 

“I just thought it was another doctor's visit and didn't want to involve anyone in my family to come with me. Just thought I'd go, get checked up,” he said. The doctor’s office was close to home, and Steve walked home reflecting on the diagnosis.

He didn’t tell his family about his diagnosis right away. “I kept it a secret for 90 days. I decided that I needed to deal with it personally, get through it myself, so that when I told others that I would not be in a situation where it was just a big sad experience, but an experience of me letting them know that I have this disease, I'm going to be okay and here's what we're going to do to fight the disease,” he said.

He says when it came time to let people know that he was living with ALS, he wanted to make sure they translated sympathy into support and understanding. 

“I kind of told everybody who expressed sympathy that I don't necessarily need sympathy, but I need understanding. And those are two very different things,” he said. “So many people had no idea what ALS was, so they weren't even sure what they were sad about until I explained to them what was actually taking place.” 

Steve says his 33-year career in sales equipped him to help people in his life understand what he is experiencing as his disease progresses. 

“I just explain to them in interesting computer terminology, that my operating system just isn't working. I equate it to your keyboard on your computer, the letter K just one day doesn't work. And so that's what ALS is like. One day my toe on my right foot just didn't work. So my internal operating system has got a virus, which everyone has probably gotten on their computer before, and there's no way to kind of reverse that. It's progressive,” he said.

Steve’s ALS progression has been most pronounced in his legs, making standing and walking more difficult. He says that can present unique challenges in a hectic city like Boston. 

“Some of the other challenges I face is just out in public, people getting frustrated with me because I walk slow, I take up space. And living in Boston, Massachusetts people have, like, no patience for that and they kind of want to get you out of their way so they can get to where they need to go. And so I'm realizing that sometimes that can be challenging with the way people perceive me with my disability,” he said.

Steve says that along with the challenges, his diagnosis also came with what he called a new set of eyes. “Although every ALS patient's story ends the same, there's still a lot of life to be lived,” he said.

He also says it is important to recognize the difference between giving in and giving up. 

“Some days I give in to ALS because I'm tired, but I never really give up. And I think that's really important, understanding the difference between the two. Because some days it's hard, but you never give up,” he said.