Rolling with spina bifida

From day one, Jody Larson has surpassed expectations. "I was born with spina bifida," Larson said. "My spine was open, a sac of fluid and nerves were born outside of my body. I was baptized the day I was born. They took me to Minneapolis and I ha...

Jody Larson 2.jpg

From day one, Jody Larson has surpassed expectations.

"I was born with spina bifida," Larson said. "My spine was open, a sac of fluid and nerves were born outside of my body. I was baptized the day I was born. They took me to Minneapolis and I had surgery on day three.

"They didn't think I would live to 20, and now I'm going to be 60."

After earning degrees in occupational therapy, Larson moved to Jamestown in 1983 and worked at the North Dakota State Hospital for more than 30 years before retiring though she continues to teach occupational therapy classes.

Last month, she amazed experienced hikers when she rolled herself in her wheelchair for 10 miles along an unpaved hiking path around the rim of the Grand Canyon in Arizona. Her trek raised awareness about spina bifida and more than $5,000 for the Spina Bifida Association.


'Physically brutal'

When first presented with the opportunity to participate in the Spina Bifida Association's 2019 Walk, Hike and Roll Adventure at the Grand Canyon, Larson did not question her own ability or hesitate at all.

"I thought, 'I'm doing this. It doesn't matter, I'm doing this,'" Larson said. "I like adventure."

A few weeks before Larson arrived at the Grand Canyon, her hiking guide set out to walk the 10-mile trail Larson would take in order to become familiar with it.

"I was just going to walk the trail to learn it and I realized that wasn't enough," said Alex Tufail, program director and guide manager for The Walking Connection in Arizona, who served as Larson's hiking guide for the event. "Minor little inclines don't seem like anything when you're walking, but being in a wheelchair makes it so much harder."

In an effort to better understand what Larson would encounter on the trail, Tufail rented a hospital wheelchair from a visitor center at the Grand Canyon and started rolling down the 10-mile trail. He only made it halfway.

"Hospital chairs have armrests, and I had welts and bruises on the inside of my bicep from my arm hitting the armrests after repeatedly wheeling up and back down inclines," he said. "My hands were so blistered, I'm still dealing with the healing process from it.

"It was so hard, it ended up being one of the most physically brutal experiences that I've ever had."


After five hours of intense physical exertion and assistance from numerous strangers who offered to push him, Tufail called it quits at the five-mile mark.

When Larson arrived a few weeks later, she completed the entire 10-mile hike in just six hours, which included the time she stopped for pictures and lunch.

"What she did was so amazing," Tufail said. "It was such an inspiration to me and my team. Getting the chance to work with Jody was an absolute pleasure. It gave me a newfound sense of wanting to pursue my personal goals."

Larson, who was equally impressed by Tufail's willingness to give the wheelchair a try, pointed out that she has had more conditioning than most.

"I use my arms as someone else would use their legs, so my arms are probably twice as strong as the average person," she said. "It was just really fun."

Supporting others

In conjunction with the event, Larson raised more than $5,000 for the Spina Bifida Association through local donations.

"I'm just in awe," Larson said. "Jamestown has been amazing as far as contributing and supporting me."


The money will support SBA's prevention, research and advocacy efforts, she said. Among other things, the SBA educates women and families about the importance of folic acid for early fetal development and spina bifida prevention.

"A lack of folic acid has proven to be one of the major reasons people are born with spina bifida," Larson said. "The brain and the spinal cord are some of the first things that develop, and they develop before a person even knows they're pregnant, so that's why the folic acid beforehand is really important."

The SBA also advocates for more services for adults living with spina bifida, Larson said, explaining that there are very few medical facilities in the United States offering specialized treatment for adults with spina bifida.

"When I was born, the life expectancy was about 20, and with medical advancement, I'm now approaching 60," she said. "The issue has been that medical services (for adults) haven't kept up. They're used to treating kids."

Despite advanced prevention and treatment, new cases of spina bifida continue to occur.

"One in 2,858 will be born with spina bifida or another neural tube defect, making spina bifida the most commonly occurring birth defect in this country," she said.

While spina bifida has at times made her life more difficult, Larson "wouldn't change it."

"I would not have had a lot of the experiences I've had if I didn't have spina bifida, and I wouldn't have met the people that I know," she said.

Larson refuses to let spina bifida prevent her from living her life, and she encourages young people with spina bifida to do the same.

"Find out what it is that you want to do, like to do, and do it," she said. "Don't let anybody tell you that you can't."

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