Kayla Stearns founds Grand Valley’s first amputee support group.
A stroll through the Target store this past autumn was the first time in nearly five years that Kayla Stearns was able to walk without searing pain in her right foot.
With a new prosthetic leg and a walker aiding her balance, she paid little mind to the admittedly elderly nature by which she was moving around. She was too preoccupied with holding back tears of happiness that simple tasks like grocery shopping no longer elicited tears of agony with each step.
But then she noticed a fellow shopper, an older woman, staring at her prosthetic leg. This was the first time Stearns experienced the social anxiety faced by many amputees.
Since then, it has been common for her right leg to draw wandering, relentless eyes, usually from older strangers.
“It’s mostly an older generation thing, like they stare at you like, ‘Oh man, she’s not normal,’ ” Stearns said. “After (the amputation), again, it was a lot of these older people who stare at you like they’re glaring at you, like they’re upset with you for being different. It’s very uncomfortable to have that stigma.”
Stearns never anticipated when she slid on ice while leaving her workplace in 2017 as a 24-year-old that the incident would lead to nearly a half-decade of pain culminating in her right leg below her shin being amputated.
That slide caused her to feel constant pain in her foot, a pain that doctors failed to diagnose until December 2020, when she discovered she was developing complex regional pain syndrome (CRPS).
The next few months after the diagnosis were a heavily medicated blur for Stearns. With the pain in her foot frequently reaching the highest level on the pain index (10), on her worst days, thoughts of cutting her foot off or taking her own life would float through her head.
Finally, after meeting with different medical professionals and discussions with family members and her husband, Stearns accepted last year that the only remedy that would remove the pain from her life was the option she had long been the most daunted by.
On Sept. 30, 2021, orthopedic surgeon David Hahn successfully amputated Stearns’ leg below the knee. When Stearns awoke from her anesthesia- induced nap, she quickly shot upright in her hospital bed to look at where her right leg once was.
She would need to learn how to walk again with the prosthetic, but she was overcome with joy that, finally, the pain was gone.
“When you’ve walked for nearly 30 years, you don’t think that throwing on a little bit of a pretend leg would change how you walk, how you run, how you move, but it’s so much more difficult than that,” Stearns said. “You have to relearn how to walk. It’s like when you’re a toddler and you’re learning how to walk. You have to learn in your style, in your way, at your pace, at your time.”
Once Stearns realized what it was like to go out in public as an amputee, however, she came to a better understanding of how much the stigma of missing a limb or having any physical abnormality can impact one’s mental health and willingness to leave home.
Оvercoming the anxiety
Stearns has adjusted with a humorous approach, often covering her prosthetic leg in stickers or a baby shark costume that would normally be worn by a toddler. Her next prosthetic leg will sport a tie-dye color scheme.
She’s overcome any anxiety about staring strangers, opting instead to use her right leg to express her humor and personality, even if — or especially because — it catches people’s attention.
She knows this isn’t the case for many amputees living on the Western Slope of Colorado, though. Stearns decided to reach out to a local support group for amputees to see what options are out there, only to discover that, locally, there are none.
“I called every hospital within an hour of Grand Junction, I called physical therapists’ offices, I called mental therapy offices, and I was like, ‘What support groups do you have?’ and they’re like, ‘Well, we have them for all different types of cancers, spinal cord injuries,’ like they had everything out there except for amputees,” Stearns said, noting that even the Veterans Affairs Medical Center’s amputee support group has been inactive with no meetings.
“There’s a lot of veterans that have amputations. There’s other people out there that are going to need this support system, and they may not have a husband or sister or any family that can walk them through any of these situations. They’re going to need other people that they can relate to.”
Amputee support group
That’s why Stearns has founded the Grand Valley Amputee Support Group, the first of its kind in the area. It began as a private Facebook group, which has close to two dozen members so far.
On Sunday, Jan. 8, the group held its first in-person meeting at Kiln Coffee Bar in downtown Grand Junction. The group is in its earliest stages, so there were three other women at the meeting with Stearns, where they spoke in a relaxed environment about the struggles and stigmas they face.
Stearns anticipates that more people will begin coming to meetings each month.
“I wanted to meet other people in person,” she said. “A lot of the Facebook groups I’ve been in, either with CRPS or an amputee support group, it was, ‘Hey, we’ve been through the same thing,’ but I’d like to sit down and have coffee with you and talk through our stories and really create a support system with other people.
“It’s difficult when there’s other people who have been in my exact same boat, with the exact same situation, and I’ve only been able to connect with them over the internet. It’s not the same,” she said. ”Even if it’s like, ‘Hey, we can take a half-a-block walk up Main Street with a coffee in our hand, even if we don’t talk, I’d rather do that with you, knowing that we can do it together.’ ”
The first group meeting included books about how to overcome the struggles that can come with amputations, as well as pamphlets with information about where Grand Valley amputees can access helpful resources, such as Western Colorado 2-1-1, Aging and Disability Resources for Colorado, and Hilltop’s Health Access.
Stearns is hopeful that what started as a Facebook group will grow from monthly meetings where information and other perspectives are available to activities such as bicycle rides or intramural sports activities organized by Colorado Mesa University.
She also knows that people might be slow to publicly join the group because of the stigma of limb loss or limb difference drawing people’s attention in public spaces. That’s why she’s doubling down on making sure others see how proud she is to display her prosthetic leg.
“A lot of people are uncomfortable with being a unicorn in the crowd … I started this because that’s where I was,” Stearns said. “I was kind of alone in this journey, and I don’t want anybody to feel that way. I want them to feel that, even though they’re a unicorn, I’m also a unicorn, and I’m going to be the very bright, glittery one in the crowd. I’m going to stand out. I’m going to shout. I’m going to say, ‘Hey, look at me.’ ”
“They may not be comfortable doing that, but I’m here to say, ‘You know what? If you come out with me, nobody’s going to notice you when you’re around me. We’re going to do this together.’ ”
Stearns said that any amputee who is interested in the group but is not on Facebook can reach out to her via her email ([email protected]) or her phone number (605-222-0122).
The Grand Valley Amputee Support Group’s next meeting will take place at 2 p.m. Feb. 12 at Kiln Coffee Bar, 326 Main St.