Climb, Nicole, climb: Local amputee advocates for the disabled

Edmonds resident Nicole Ver Kuilen, right, with her partner Natalie Harold at the summit of Cotopaxi. (Photo courtesy Silverline Films)

Climbing to the summit of a 19,347-foot, active volcano in Ecuador would be an accomplishment for anyone. Doing it on one leg and a prosthesis is nothing short of life-changing.

“I was so inspired,” said Edmonds resident Nicole Ver Kuilen of her fellow amputees, part of a team of elite climbers who made it to the top on Sept. 28, in honor of the 28th anniversary this year of the Americans with Disabilities Act (ADA). “It made me realize so many of the limits we put on ourselves are self-imposed.”

Losing a leg to cancer when she was just 10, Ver Kuilen has long challenged herself athletically. Then, in 2017, she took the next step, becoming an activist to improve the standard of care for all amputees, focusing on access to functional prostheses. “Most people don’t realize that the prosthetic technology seen in events like the Paralympics or for veterans is not available to most amputees,” she said.

“The only change I’ve had in 16 years to my prosthetic device is a pin-lock to keep my leg from falling off and a slightly more springy carbon fiber foot,” said Ver Kuilen, now 27. “My prosthesis is only designed for walking, and this is the only prosthesis that insurance affords me.”

In addition, her leg isn’t waterproof, not designed for active sports, and has no bend at the ankle. “When I sweat, it slides off my body, often creating blisters, sores and infections on my leg.”

Ver Kuilen said that such poor care is due to outdated policies, inequities in insurance coverage, and an inefficient health care system. “We live in an age where we have the technology to eliminate a disability. However, the power to grant access to that technology is in the hands of our politicians and insurance executives, not our care providers,” she said. “But policy can be changed to shift the power levers back to the medical community.”

Advocates, like her, support Insurance Fairness for Amputees legislation that would require private insurance companies to provide coverage of prosthetics at or above the level allowed by Medicare and Medicaid. It also removes coverage caps, ensuring that private insurance does not put a lifetime dollar-maximum in place. Twenty-one states have passed Insurance Fairness for Amputees laws. Washington state has not.

Nicole Ver Kuilen holding the original poster for Forrest Gump, signed by Tom Hanks.

In response, Ver Kuilen founded the nonprofit advocacy organization, Forrest Stump, a “cheeky” nod to the movie Forrest Gump in which a disabled boy refuses to give in to his apparent limitations, eventually growing up to run hundreds of miles across the nation.

Ver Kuilen’s first big awareness campaign came in 2017. She ran, biked and swam 1,500 miles down the West Coast, from Seattle to San Diego, joined by her partner and prosthetist, Natalie Harold, as well as her mom, running buddy, and a film crew. Their documentary, 1500 Miles, is due out in January. Ver Kuilen plans to take the film on the road to raise awareness, as well as enter it into film festivals. She hopes to get a little help from the original Gump. Actor Tom Hanks heard about her efforts and signed a poster for her, which read, “Run, Nicole! Run,” a play on the movie line, Run, Forrest, run.”

The next big venture was a partnership with the Range of Motion Project (ROMP) to invite 15 amputee climbers for an ascent of Ecuador’s Cotopaxi, one of the highest active volcanoes in the world.

“My family and friends asked me, just how active is this mountain?” she laughed. “When I got to Quito, the capital, I was at 9,000 feet and I felt it. But ROMP and Cumbre Tours (the guides) had an effective acclimatization plan — train high, sleep low.” That meant training hikes at more than 15,000 feet, and sleeping at 12,000.

Nicole and Natalie with a group of amputee-athletes celebrating their achievement after climbing Cotopaxi. (Photo courtesy Silverline Films)

Once acclimated, the team hiked in to base camp. “I started feeling really sick and got worried,” Ver Kuilen said, fearing altitude sickness. She bounced back and by the time they were off — her team started out at 10:30 at night — she felt better.

Their common goal was to bring international attention to the issue of mobility and fair access to prosthetic technology. But first they had to overcome their own self-doubt, fear, and the rigors of climbing as amputees.

“At first, it was scary, going into the unknown and darkness,” Ver Kuilen recalled.  “I looked up at the stars and that calmed me.”

Some of the climb was technical. They wore crampons and harnesses and learned to use ice axes for the glacier. They had to climb over steep crevasses and navigate perilous snow bridges. As the night wore on, she worried her prosthesis might fail her. “I was afraid the sweat might loosen it, which would make controlling my prosthesis nearly impossible.”

It held.

Going over a crevasse, she wouldn’t look down. Later, they slogged up a very steep stretch called “Rompe Corazones,” or the “Heart Breaker.” “My leg did pretty well. There was another amputee though, he didn’t have access to an advanced prosthetic knee, so one of our teammates would put an ice axe under his prosthesis at every step to give him more leverage.”

At last, under brilliant blue skies, 11 amputees and eight other climbers made the summit. “It was perfect weather,” Ver Kuilen remembered. “You could see other peaks.  We all just started crying.”

With this summit under her belt, Ver Kuilen’s mission is clear: to work with legislators in the state of Washington, and across the country, to change policy so that all amputees have access to the tools they need to live productive, independent lives. “As an amputee, I am not disabled by my condition, but by my lack of access to the appropriate prosthetic technology and medical care. The technology exists to help us live our best lives. Together, we can change policy to ensure all amputees have access to a limitless future.”

— By Connie McDougall

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