Diagnosed with ALS, Fleissner’s message is of faith, hope and love
Just off Chambersburg Avenue in Duluth’s Piedmont neighborhood is a sprawling property fit for a forester such as Kelly Fleissner.
There are low-lying wetlands in the yard, one of which used to be plowed clear to the ice to create a makeshift skating rink. The family would adorn the surrounding aspen and willow trees with Christmas lights, and when Kelly and Betty Fleissner’s three girls took to the ice, it created scenes worthy of a Norman Rockwell painting.
Not far away are a sauna and the family’s four-bedroom house, flanked by raspberry and blueberry plots. The main portion of the house was built around 1889 and was part of an old vegetable farm, and while the exterior has a modern look, the inside is rustic. Kelly jokes the house went from looking “townhouse-ish” to more “cabin-ish,” remodeled after frozen pipes burst a few years ago and flooded the place.
Fleissner, a former standout Minnesota Duluth football player, sat down at his dining room table on Wednesday to talk about his ALS diagnosis. Amyotrophic lateral sclerosis or Lou Gehrig’s Disease is a rapidly progressive and fatal neurological disease.
What does one say to a person who is dying and appears to have no hope?
Just a few feet away, tucked in a shelf below an old wooden cabinet, were stacks of picture frames, books and board games, including the classic “Sorry!”
It’d be easy for Fleissner to play that game, but that’s not his style. The box appeared dusty.
Fleissner isn’t looking for sympathy, but he appreciates support, and he has a message to share during this Christmas season.
“Every day is a gift, because you never know when your time is up,” Fleissner said. “So make the most of it.”
Living a full life
Nobody is going to accuse Fleissner of not living a full life, but since his ALS diagnosis on Sept. 20, he has had more time to think and reflect. There is less time for sweating details, more time for hugs and handshakes. He sees his children — Anna, 26; Sarah, 23; and 20-year-old Emily, a UMD soccer player — more often now. Their Christmas stockings hang from the dining room china cabinet.
Time seems more fleeting, moments more precious, and Fleissner is trying to make the most of them.
“I’m trying to grow in my faith, No. 1,” said Fleissner, a member of St. Lawrence Church in Piedmont. “And I’m trying to be the best husband I can, be the best father I can and be the best person I can.”
Fleissner, 59, quit working in September after more than 30 years with the city, most recently as Duluth’s maintenance operations manager, but he won’t officially retire until February. He is currently on sick leave, and his colleagues with the City of Duluth Supervisory Association donated vacation time so he could extend his sick leave.
“That was so generous,” he said.
Fleissner is from Anoka, Minn. He grew up living by lakes and rivers, helping foster his love of the outdoors. He graduated from Anoka High School in 1975. A defensive back, he played at UMD from 1975-78 and was a captain his senior year. He set a then-UMD record with eight interceptions in 1977.
Fleissner played with the likes of Terry Egerdahl, Ted McKnight, Pat Kubat and Cal Barr. Fleissner’s group of buddies called themselves the “Quags,” short for quagmires.
“I liked Malosky,” Fleissner said of legendary UMD football coach Jim Malosky. “We came from tough coaches at Anoka, so I was used to that, and he was charismatic. I felt I would have a good chance to play.”
Malosky didn’t really need to cut anybody. They cut themselves, quitting because they couldn’t handle it. Fleissner said Malosky could be mean, but after practice, he would come in with a smile on his face.
Fleisner smiled when asked if players either loved or hated Malosky, and then said, “Same day.”
After Fleissner earned his forestry degree from the University of Minnesota, he returned to Duluth, where he juggled odd jobs, including work on tugboats. He had a three-year coaching stint in the early 1980s under Malosky.
Betty Fleissner, 58, is a 1976 Duluth Denfeld graduate who played volleyball, basketball and softball at UMD. She knew she wasn’t going to play a lot, so she entered into athletic training. That’s where she met Kelly, then an assistant football coach. They were married in 1985.
“I just asked her out one day, she said ‘yes,’ and the rest is utopia,” Kelly Fleissner said. “Half our dates were playing badminton.”
Fleissner worked off and on for the city as a temp from 1978-83 before coming on full-time in 1985, working in park maintenance. He could be at Park Point one day, Indian Point the next, and just about everywhere in between.
“I knew when I was 15 that I wanted to be a forester,” Fleissner said. “It was something different every day. I ran the sawmill, I ran the tree nursery, all kinds of stuff. It was very diverse. It was a great job. I met a lot of good people, and the city is beautiful.”
Bad news comes
Fleissner was officially diagnosed with ALS on Sept. 20 at Mayo Clinic in Rochester, Minn. He said he had a pretty good idea what he had before the diagnosis, having done preliminary tests and research.
“I went online and checked all kinds of things,” Fleissner said. “Then when I checked ALS, I said, ‘Oh, no.’ I had all the symptoms.’ ”
Emily Fleissner said she knew after talking with her mother following UMD’s soccer opener Sept. 1. She remembered the words of her father, who always used to tell her, “Fleissners don’t complain,” but it was hard.
“No one plans for this,” Emily Fleissner said. “I cried a lot on the way home, and still do.”
Fleissner might have had ALS for up to a year before he was diagnosed.
Family, friends and co-workers noticed a change in him starting then. His voice was raspy or slurred. He was fatigued, and his muscles twitched. He’s lost 30 pounds.
“It sounds like I’m drunk, all the time,” Fleissner said. “I’m losing control of it.”
Then Fleissner said, “It’s not about trying,” drawing a laugh from his wife.
The Fleissners checked into Lyme disease, because a year before, they found a tick. He had Lyme disease in the fall of 2015, but it was treated. To further complicate matters, his prostate cancer returned after he had surgery in 2010 to remove it.
“Can you get (snake)bit anymore?” Betty Fleissner said.
Kelly Fleissner was about to begin cancer treatments when ALS was discovered, putting a hold to the cancer treatments.
“I’m not symptomatic,” Kelly Fleissner said of the cancer. “So no, I’m not going to spend seven weeks in radiation and take hormone treatment. Since it’s not impacting me yet, we’re on hold for that.”
Fleissner said he had his share of concussions playing football, but according to the ALS Association, there is no clear link between ALS and chronic traumatic encephalopathy (CTE). Most people develop ALS between the ages of 40 and 70. While ALS is 20 percent more common in men, it can affect anyone, regardless of race or ethnicity.
“That’s the scary thing about ALS,” Betty Fleissner said. “Is it genetic? They don’t know. There’s so many more questions than answers.”
About 6,000 new cases of ALS are diagnosed each year, with as many as 20,000 Americans having the disease at any one time. Part of the reason those numbers are relatively low is the grim reality of ALS: the life expectancy is 2-5 years from the time of diagnosis as the disease takes control of the nervous system and causes it to misfire, making it increasingly difficult to speak, swallow and eventually breathe.
Part of the Fleissners’ frustration is there is so little out there to help. He is taking the drug “Riluzole,” but that may only increase survival by two to three months. Fleissner returns to Mayo in January and is hoping to be included in a stem cell trial.
Scott Lyons, a former UMD football player and coach, not to mention an ex-Duluth police chief, is good friends with the Fleissners. Lyons said he isn’t a “fatalist,” and knows Kelly Fleissner isn’t, either. The two used to go on cross-country ski trips together. He remembers Fleissner as “one intense football player,” but off the field, about as laidback and nice as they come.
“We crossed paths at UMD, and we’ve been friends ever since,” Lyons said by phone. “He has a wonderful family and is a great family man. He has always been a class guy. Everything he does is top notch.”
The Fleissners recalled how for years Kelly helped take care of his brother, David, who suffered a serious mental illness about 20 years ago. Now some roles in the Fleissner household are being reversed, with Betty handling the snowblowing and Kelly doing more of the indoor chores.
“Kelly has always been the type to try to leave the world a better place,” said Betty, who works as an instructor in UMD's Applied Human Services Department. “He’d tell you to speak up for what’s right and do the right thing, whether it was at work or here, speaking up for those couldn’t speak up.”
The disease is already robbing her husband of the independence he loves so much. He is no longer able to walk the dogs, one of his favorite activities, but instead of dwelling on the things he can’t do, he is focused on the things he can do.
An avid outdoorsman, Fleissner went on a hunting trip to the Platte River in Nebraska in November.
And two weeks after Kelly’s ALS diagnosis, Betty planned a daddy-daughter dance for her husband and children. She invited their closest friends over, lit candles and strung lights in the living room to create a makeshift ballroom. It was perfect. She and the girls each picked a song, and the dance was recorded. Sarah, their second child, went first rather than always being stuck in the middle.
It was an emotional night.
“Making memories,” Betty said. “That was a special moment, because we just don’t know.”
Kelly Fleissner attended UMD’s homecoming football game this fall where he reacquainted with old buddies, some he hadn’t seen in 30 years. It has meant a lot for him to watch his daughter, Emily, play soccer in the same stadium where he roamed the defensive secondary 40 years ago.
Emily Fleissner said her dad doesn’t like being the center of attention but knows ALS is a devastating disease, and with its rapid progression, these stories need to be told. She described her dad as her hero, never complaining how a game might end, but appreciating the fact he was able to play.
“I’ve wanted to be like him ever since I was young, and I still feel that way,” she said. “Even though my dad has no control over his body failing him, he has stayed unbelievably strong. He has never failed to show his love for us, and I have never once seen him sit and feel sorry for himself. He is the best father and role model I could ever ask for. Now going forward, we can only do the best with what we have, and that’s appreciating every minute we have left together.”