Nicole Ver Kuilen is an avid runner, Brandi Carlile lover, butter pecan ice cream fanatic, and disabilities activist living in Vancouver, WA. She grew up in the midwest and was incredibly active as a kid—she bounced from softball to soccer to swimming on the regular. She later carried that passion for physical activity into her adult life, where she fell in love with running. “It's something that just brings me so much joy on so many levels. It's something that can make me feel like I’m in this zone of meditation and I can be transported to another world,” she shares. In her second ever 5K she took first place, in her first triathlon she took third, and in 2017 she quit her job and took on a 1,500 mile triathlon down the Pacific Coast—all as an amputee.
At just ten years old, Nicole lost her leg to bone cancer. “They actually found the tumor in my tibia bone when I was eight. I was on my way to a softball game and I ended up tripping and falling and spraining my ankle and went to the doctor and had an x-ray done. And that's when they found this egg-size tumor in my tibia. It was a complete surprise and miracle that they even found it,” Nicole explains. Two years later during a visit to the Mayo Clinic, a biopsy revealed that the tumor was indeed malignant and a rare form of bone cancer called osteosarcoma. After multiple rounds of unsuccessful chemotherapy, Nicole was given two numbers. “One was 0 and one was 20. I had close to 0% chance of my cancer coming back if I chose amputation. If I did limb salvage, it was 20%. To me, it was an easy decision. I would rather lose my leg than die.” Nicole recalls.
After losing her leg, she was left with a lot of physical and mental growth to work through. “There were a lot of big emotions for me as a 10 year old to try and grapple with. Sadness, despair, anger, rage. I ended up hating my leg for what it had done to me,” Nicole shares. Luckily though, Nicole had a strong and loving support system. “My mom is definitely a really strong person in my life who helped me deal with a lot of those emotions and feeling positive, my dad, step-mom, and step-dad, as well. They really wanted me to feel like I wasn't different than anyone else, that I could accomplish whatever I set my mind to,” says Nicole.
The Fundamental Shift
Coming to accept herself as an amputee wasn’t a quick process, though. After putting in years of intensive work both physically and mentally, Nicole’s perception of herself and her place in the disability community shifted. “I now feel like I can use the word disabled and I'm proud to say I'm a member of the disability community. I have a physical condition. I'm missing part of my leg…[But] having a disability doesn't mean you're without ability. It just means that you might do things differently than others, or that you might need to navigate the world in a different way and have access through different means.”
Another monumental shift came when she started running in college. After looking into getting a running blade—a prosthesis designed to provide the energy return and alignment necessary for running—she was denied coverage and discovered that it would cost up to $20,000 out of pocket. As a result, Nicole was forced to run on a walking prosthesis, which led to sacral torsion, intense back and hip pain, sores on her stump, and weekly physical therapy sessions. As her frustrations grew, Nicole started asking, “What is it really that makes me disabled? Is it the fact that I am missing my foot, or is it the fact that these discriminatory policies keep me from living an active life?” She ultimately found that digging into the systemic injustices and understanding exterior constraints helped her reframe her mindset: “[I] realized that this whole time it was never me. It was something much bigger than that.”
As she continued to run and live an active life, her confidence and passion for advocacy continued to grow. “Four years ago when we did our 1,500 mile trek down the coast, that was something to me that was incredibly confidence building, and allowed me to finally come out of my shell as a person with a disability because ultimately, and for a long time, up until that point, I really was ashamed of my disability and tried to keep it hidden from others. So yeah, it took a decade and a half really to finally process all the emotions that came with the amputation,” Nicole shares.
The 1,500 mile trek Nicole is referring to is an ultra-triathlon called Forrest Stump. She started it as an awareness campaign to shed light on the low standard of care for amputees nationwide. After nearly two decades of Nicole being denied coverage for a running prosthesis, she put her standard prosthesis on the line to see if it could survive the 1,500 mile journey. Insurance expects a standard prosthesis to last five years, manufacturers expect them to last three, and in under one year, Nicole had worn her prosthesis down to an almost unusable level.
When she received a running blade only after doing a 1,500 mile triathlon, she made it her mission to build a network of support and fight for the rights of amputees. “No one should ever have to go to this length to get access to something so basic and fundamental to our way of life.”
Working With ROMP
The Range of Motion Project (ROMP) is a nonprofit, for-impact healthcare organization dedicated to providing prosthetic care to those without access in the US, Ecuador, and Guatemala. In 2018, Nicole first joined ROMP with a team of 14 amputees to climb the 19,347ft volcano, Cotopaxi, to campaign for disability rights. For Nicole, reaching the summit was life changing. When she had the chance to go to a ROMP clinic and witness their work first-hand, she knew she needed to help power their mission. Nicole now serves as a ROMP ambassador where she volunteers, fundraises, and helps to share ROMP’s message globally in an effort to get amputees the access and care that they deserve.
When asked why this was such an important fight for her to be a part of, Nicole explains,“I one hundred percent believe that physical activity is a basic human right…I mean, it’s fundamental to everything that we do to be healthy, to be able to move around, to be able to be independent, to have the freedom to do what we want to in life.” That basic right to independence is ultimately what propelled Nicole to start raising others up along with her.
Although progress has been made in recent years, Nicole expresses that, “There's still so much that the disability community doesn't have access to… And that's something to me that is worth fighting for, and is a future that can happen and will happen if we put our efforts behind it.” In spite of the work done so far, nine in ten people with disabilities still lack access to assistive technology globally, including prosthetics, so she hopes that her work with ROMP can help further the progress and strengthen the fight for more comprehensive rights for amputees.
Beyond working to make an impact on a global scale, she’s also found the work to be incredibly fulfilling on an interpersonal level. “Helping others like me live their lives without limitations is incredibly rewarding. There is no greater satisfaction in the work I do.” Nicole shares. More specifically, one of her proudest moments came from working with two young athletes in Guatemala, Candelaria and Sheidy. They both had a passion for running and ultimately lost their legs to the same rare form of cancer as Nicole. After meeting Candelaria and Sheidy, it was immediately clear to Nicole how much running meant to them both, so she advocated to get them set up with running blades and ultimately helped to get the girls comfortable with running again. Having gone through a similar experience herself, sharing the process with Candelaria and Sheidy was a full-circle moment for Nicole, and an incredibly gratifying one, too.
Moving Forward
With the proper prosthesis, there are even moments now where Nicole forgets she’s an amputee. “That has allowed me to transcend to a world in which I'm experiencing reality, just like everyone else. Being able to hear the birds or to be able to see the sun shining, or the river flowing, all of those aspects. I'm finally able to take in the experience,” Nicole shares. “Mentally to not have to focus on a painful leg…I pride myself on [those moments]... because that means everything's going right,” she continues. “I hope that every amputee can get to that feeling.”
When asked what she hopes for the future of the amputee community, Nicole shares, “The ideal future is a world where every person with limb loss has full mobility, from walking to running. That every amputee—no matter their gender, race, or country of origin—has access to the prosthetic care they need to live their best life.”
There’s still a lot of work to be done for the amputee community, but the progress made by organizations like ROMP have been groundbreaking, and Nicole is taking it all in stride.
In March of 2021, Cotopaxi partnered with ROMP to help support the organization's efforts in Ecuador. ROMP Ecuador works with local community leaders, prosthetists, and clinics in the private, nonprofit, and public sectors to meet the needs of Ecuadorians with amputations. They’re now expanding their efforts to the Ecuadorian Amazon, bringing prosthetic care to the most marginalized amputees in the world.
Learn more here.
