Webster man may be first ultra runner with Spina Bifida

9 Aug

Anyone who runs, even short distances, knows that running isn’t always easy. Too often, pounding the pavement means pushing through mental barriers, blisters and sore muscles.  

But that all pales compared to the challenges Mike Fitzsimmons has had to overcome. 

Mike Fitzsimmons was born on January 26, 1986 with myelomeningocele, the most serious type of Spina Bifida. His spine had not fused completely, and there was an open wound in his back where spinal fluid was leaking out. His parents were told that if their son lived, he’d be severely disabled, in a wheelchair and have no quality of life. Within 48 hours he had surgery to close the wound, but Mike’s chances of ever walking were still very slim.

But sometimes miracles happen. Today, 36 years later, Mike Fitzsimmons is not only walking, but is running ultra marathons, and so far is the only known person with Spina Bifida to do so. 

Mike was fortunate; all his life he’s had normal feeling in his feet, knees and ankles, and led an active childhood, playing sports of all kinds. But he didn’t become a runner until much later, when life started to turn very sour.

When he was 19 years old, Mike’s mother developed early-onset Alzheimer’s, and he became her caregiver. She passed away ten years later. 

“When she died, I was so lost and broken. I needed to do something,” he remembered. “I hated running, (but) I didn’t want to take Xanax, or get into drugs or booze. I thought, let’s just try this stupid running stuff everyone’s taking about.” 

For a while the running-as-therapy worked, at least a little bit. Then two years later, his best friend took his own life, and that made matters worse. He started running even longer distances. 

By the time COVID hit in 2020, running had become an important part of Mike’s life.  Setting a personal challenge to run a half marathon seemed like a natural next step, and a great way to get through the pandemic. To make it more interesting, he’d also journal about his experience on Instagram. 

“I didn’t even know what a hashtag was at that point,” he said. “I’m in my mid-30s, no one cares about what some middle-aged dude is doing, trying to figure out how to run a silly half marathon. But it was going to be cool for me. Like, Spina Bifida, half marathon, let’s see what it becomes.” And anyway, he thought, “no one’s going to find it.” 

Boy, was he wrong. 

The Instagram account started to blow up, drawing followers from both the disabled and long distance running communities. His fans cheered him on as he trained for and eventually completed the virtual 2021 Buffalo half-marathon, running the 13.1 miles through his neighborhood. He credits them – and his wife Amelia – for keeping him going.

Having accomplished that goal, he decided to take a break and ignore the Instagram account for a while. But he started to miss all of the friends he’d made there. So, with their encouragement, he signed up for the Mind the Ducks 12-hour ultra marathon, held in May at North Ponds Park, setting an ambitious goal of 50K (31 miles). 

Mike still has chronic problems with his kidneys and bladder, which makes managing hydration a serious concern and requires some extra preparation and precautions.  Despite that however, he finished his 50K – actually, 32.48 miles – in just over 7.5 hours. 

It may very well be the first time anyone with Spina Bifida has completed an ultra marathon. 

As the story of Mike’s running achievements has spread, he’s created a unique and inspirational connection between the running community and the disabled community. It’s a role he didn’t go looking for, but has come to embrace. He’s now determined to spread the word about the amazing things children and adults can accomplish, even with a disability.  

He especially wants to help change the negative perceptions medical professionals continue to have about the prognosis for those born with Spina Bifida.

“It bugs me that it’s still the narrative (for doctors and nurses) nearly 40 years later… I would just love it if a mom heard, ‘Yeah it might be really bad, but what if it’s really good? What if it’s amazing? What if they’re in a wheelchair, but maybe they’ll cure cancer?’” 

What he’s accomplished, he said, is a good example. “It just shows that you can do anything, be anyone.” 

“I don’t want to be ‘Mike the Spina Bifida Guy’ who runs crazy runs forever. It’s cool that it’s a part of it. But I also like music and hanging out with my wife.” 

A diagnosis of Spina Bifida does not have to define a person, he added. “There’s so many awesome aspects to all of us.”

* * * 

Mike Fitzsimmons isn’t slowing down yet. He’s already training hard for his next ultra, the 100-mile Dreadmill 48-hour Endurance Challenge in December. Matter of fact, the day before I talked with him he’d run a half-marathon. That’s 13 miles. With a broken toe. 

He’s using Dreadmill Challenge as a fundraiser for one of his favorite causes, Bella’s Bumbas, a Webster-based nonprofit dedicated to building miniature wheelchairs for children with a wide variety of mobility issues, including Spina Bifida. (Read more about them here.) 

You can follow Mike’s running journey, and read more inspirational stories, on his Instagram page (@mikecanrun). And if you’d like to throw your support behind his efforts, and support the incredible work that Bella’s Bumbas is doing, check out Mike’s GoFundMe page.

* * *

email me  at missyblog@gmail.com“Like” this blog on Facebook and follow me on Twitter and Instagram.

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(posted 8/9/2022)

One Response to “Webster man may be first ultra runner with Spina Bifida”

  1. Mike Fitzsimmons August 11, 2022 at 3:03 pm #

    Really beautiful telling of the story so far. Thank you, Missy.

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