‘Adversity advantage’ Paralyzed woman Boxtel knows attitude is everything

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Amanda Boxtel is pictured in her Basalt apartment beside parallel bars she uses for physical therapy. Boxtel long has been involved in working on behalf of the disabled, including pursuing treatment and technology to help herself and others confined to wheelchairs.



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Amanda Boxtel is pictured in her Basalt apartment beside parallel bars she uses for physical therapy. Boxtel long has been involved in working on behalf of the disabled, including pursuing treatment and technology to help herself and others confined to wheelchairs.

Amanda Boxtel of Basalt demonstrates how she maneuvers herself into an exoskeleton device that allows her to walk despite being paralyzed. Boxtel long has been involved in working on behalf of the disabled, including pursuing treatment and technology to help herself and others confined to wheelchairs.



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Amanda Boxtel of Basalt demonstrates how she maneuvers herself into an exoskeleton device that allows her to walk despite being paralyzed. Boxtel long has been involved in working on behalf of the disabled, including pursuing treatment and technology to help herself and others confined to wheelchairs.

Amanda Boxtel is pictured in her Basalt apartment next to parallel bars she uses for physical therapy and an exoskeleton device that allows her to walk despite being paralyzed. Boxtel long has been involved in working on behalf of the disabled, including pursuing treatment and technology to help herself and others confined to wheelchairs.



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Amanda Boxtel is pictured in her Basalt apartment next to parallel bars she uses for physical therapy and an exoskeleton device that allows her to walk despite being paralyzed. Boxtel long has been involved in working on behalf of the disabled, including pursuing treatment and technology to help herself and others confined to wheelchairs.

QUICKREAD

Amanda Boxtel

Age: 46

Years in western Colorado: 25

Family: Single

One thing most people don’t know about me: My passion (aside from recreating in the outdoors and traveling to far-off places) is watercolor painting. (I won all the art awards at school and everyone thought I’d go on to become a fine artist. I guess it’s never too late to pursue that dream).



Amanda Boxtel recently participated in a yoga workshop.

That might not be so remarkable, except that the Basalt resident’s legs are paralyzed. And her yoga outing experiences serve almost as an allegory for her life since losing her ability to walk.

First came her courage and determination in deciding not to let her disability stand in her way.

Then came frustration so bad it brought tears to her eyes as she lamented to herself, “Everybody can move their legs. I want to move my legs. I want to be the same.”

Then the tears gave way to giggles between Boxtel and a friend as she eventually found humor in her situation. She also learned to her surprise that she was able to get her body into many yoga positions, and she also appreciated being able to be a part of a welcoming, accepting group.

“I had this complete turnaround and that’s where my attitude kicked in and it was OK and I felt we were all connected, as we are,” she recalled.

Ever since a freak, life-altering ski accident at the Snowmass resort 22 years ago, Boxtel has been alternately defying and challenging her disability, being left frustrated and forlorn by it, and embracing the experiences her paralysis has presented to her and the many people she has come to know as a result. This isn’t the life she would have chosen for herself. But she has sought to make the best of the circumstances she’s been dealt, working on behalf of people with disabilities even as she pursues treatments and technology that can help her and others in her situation. Most recently, those efforts have involved a robotic exoskeleton that has allowed her to walk upright, and that she’s working to get in the hands of more paralyzed people.

“I think an accident like this will either make or break a person,” Boxtel said. “I think for me, I guess I embraced the adversity advantage and went for it with gusto.

“… I try to always turn it into a positive. It’s rising above. Attitude is everything and sometimes it’s all we got,” she said.

The long road from Australia

Boxtel lives a life far removed in distance and circumstance from the one of her youth. She was born in Australia and enjoyed a childhood spending much time in the outdoors in Papua New Guinea, when her parents taught there.

They then moved back to Australia, where she was active as a ballet dancer and was involved in sports, serving as captain of her school’s track team, for which she competed as a sprinter and long jumper.

She became a school teacher, met an Aspen teacher who visited her class, and ended up coming to Aspen, following her heart as their relationship developed. Though that relationship didn’t pan out, her relationship with Aspen deepened as she came to love the four seasons and found camaraderie with people who enjoyed the outdoors and active lifestyles.

She substitute-taught for the Aspen School District, but everything changed on that day when she got on a chairlift and had a premonition that something bad was going to happen.

“I felt that I needed to get off the mountain, that it wasn’t a good day to ski. I looked at the view as if I was looking at it for the last time. I was trembling,” she said.

She decided to ski under the chairlift to remain visible, but then it happened. She crossed her ski tips, did a somersault and broke her back. Boxtel said she immediately felt something like an intense electrical current, followed by the feeling of lights going out.

“It was all very real and I know my life was seriously messed up and I was going to change radically. I knew I was paralyzed in that moment,” she said.

Hope and acceptance

For the first several years, the athletic, vibrant young woman refused to believe her doctor’s diagnosis.

“He said, ‘Amanda, you’ll never walk again,’ and I was determined to prove him wrong.”

She tried therapeutic remedies without success.

“I was forced to arrive at a place of acceptance of my reality,” she said.

“It was just a long road to awakening and understanding that I wasn’t just a half woman but a whole woman and to respect my legs as a temple of God and a beautiful part of my body, and that I could be beautiful whether I was sitting or walking,” she said, rubbing those legs for emphasis.

On her 30th birthday she made a list of things she wanted in life, and walking again didn’t make the list. When she realized that, it was a liberating feeling. Boxtel said she has come to engage in what she calls a dance between hope and acceptance, not giving up on the idea of a cure but not putting her life on hold to wait for it.

Not that she had stopped embracing life altogether in the meantime even in those early years after the accident. It was only a winter later that Boxtel tried adaptive skiing. She admits to shaking and being white-knuckled at first as she returned to the ski slopes that had so changed her life. But once she learned to make turns and control her speed she fell in love with it, and she continues to ski today.

“My greatest joy today is to ride a chairlift to the top of the mountain, whisper a prayer in the wind, feel the breeze and make a graceful arc in the snow,” she said.

Early after her injury she realized she probably wouldn’t be going back into teaching school.

“I wanted to see what else was out there and I felt drawn to helping others with disabilities,” she said.

She was hired by the Aspen Skiing Co. to teach monoskiing, and then co-founded Challenge Aspen, a nonprofit that provides a wide range of recreational activities for people with disabilities.

“She’s definitely an incredible lady,” said Grand Junction resident Tyler Jones, who got to know Boxtel on an adaptive rafting trip he led down the Grand Canyon. Jones was running Colorado Discover Ability at the time, and Boxtel was one of five people in wheelchairs on the trip, along with others with varying disabilities.

“She’s just an incredible advocate for people with disabilities, no matter what the disabilities. She has one of the biggest hearts I’ve ever seen and just endless drive to help people get what they need and to do whatever,” he said.

Boxtel’s undertakings have included visiting Antarctica, where she floated with penguins and afterward wrote an accessibility report for Antarctic tourism. She started adaptive programs in Iceland and Argentina. After seeing children in school in Argentina lying on mats, having to share wheelchairs and get to use one for perhaps an hour a day, she vowed to change that and was involved in delivering 200 wheelchairs there.

 

New reasons to hope

Amid such efforts, Boxtel never gave up altogether on the idea of being able to someday get up out of her chair. She went to India to participate in a controversial stem cell program, and says she has regained some trace muscle power and some sensation in her pelvic area, reviving the dynamic of hope for her.

Then came what she describes as “the call that changed my life.” She was invited to be the first paraplegic woman to try out a bionic exoskeleton. It’s a battery-powered, computerized frame that is strapped on the body and has motors and sensors that help a person walk with a natural gait. It is used in physical therapy, to facilitate movement and blood flow in paralyzed limbs, which Boxtel considers crucial to countering atrophy and other problems.

Despite the limited purposes of the device, using it has been transformative for Boxtel. The first time she tried it was for a National Geographic television program.

“It was scary, exciting; all my dreams that I had dreamed about of walking in a very natural gait were burgeoning to life. In one single moment I could look across the room. … Everything happened in one magnificent and very emotional moment and I went back to the hotel room that night and I cried very hard because it was emotional for me.”

She hadn’t just walked for herself, but for friends and family who also hoped to see that day.

“When someone sustains an accident, a tragedy, the ripple effect — everybody grieves, everybody shares that same dream,” Boxtel said.

Subsequently, with help that included a lemonade-sales fundraising campaign by the children of Camp Run-a-muk in Carbondale, Boxtel has her own exoskeleton. She considers herself fortunate to have benefited from so much community support over the years, and now she has founded the Bridging Bionics Foundation, a nonprofit aimed at providing funding, education and advancement of research and development for exoskeletons and bionic technology, with a vision of that technology becoming a standard, worldwide mobility option. Last year the organization awarded an exoskeleton to the Walter Reed National Military Medical Center as its first grant.

 

More than a public figure

Boxtel does a lot of public speaking both domestically and abroad.

Said Jones, “She’s done a tremendous amount of good for the disability population and continues to do so. She’s just a unique character with a tremendous amount of drive. It’s infectious when you’re around her.”

Boxtel said she has a strong will and resilience and tries to share her example with others. But while her paralysis has helped make her the person she is today, she’d happily reclaim her mobility if she could turn back the clock 22 years and avoid all the difficulties her injury has brought her. Despite the strength she exudes in public, she revealed in her recent interview a more vulnerable side of a person who struggles to this day with her paralysis and how it affects the physical, social and other aspects of her life.

“I want to be seen as completely authentic, as real, to be not just this public figure who’s an inspiration. I want to be a real friend, I want to be a lover, a girlfriend, a sister. … I think people see me as an inspiration and it stops there, but I’m very much a real, tangible person with a big heart.”

Boxtel said she lives a “weird life,” of which her very public side is only a part.

“But there’s people who love me for who I am. They see that I struggle and am real,” she said.

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