Their parents never treated deafness as a disability, she remembers, but just as a simple fact of life that didn’t excuse one from responsibilities like making their bed or doing chores or trying out for things—or achieving whatever goal they could dream of.
“I was exposed to a lot of kids with multiple disabilities,” she recalls, “Some were in wheelchairs—who were placed into the deaf class because it’s where they could put them.
As an adult, Stephanie initially worked with Children’s Village at Doylestown Hospital, where kids with special needs and even babies on heart monitors were included. “Everybody has a special need,” she taught them. “Some you just can’t see.”
Then, as now, she believes, “We’re all just trying to figure things out—so be kind to everybody. It’s a good kind of philosophy, and one the world needs right now!”
Her resume also includes ten years of service as both director and teacher at Trinity Buckingham Academy, a preschool near Doylestown, where the inclusive age-appropriate program helped to sharpen her skill for observing the learning process and identifying (and addressing) individual struggles the kids might be experiencing with problem-solving.
Possibly Stephanie learned her irrepressible upbeat attitude toward her amputation from those pre-schoolers she used to teach.
Months later, in October 2021, she received her first prosthesis and returned to Moss for training. Due to an unusually large number of volume changes in the residual limb, a succession of sockets rapidly became too large, however.
“Frank and I got to be really good friends during that period!” Stephanie laughed. “I’d keep going down to see him or he’d come to the house, and he added padding on the inside and did all kinds of helpful stuff until we got fitted for the second socket.”
The most recent socket lasted only a month and a half before it, too, no longer fit; so in April 2022, Colucciello chose a fresh solution, and in mid-May Stephanie received an adjustable BOA socket.
“This is a design that has really revolutionized prosthetics,” said Colucciello. We thought that one day prosthetic science might be able to develop such a design, but now that we actually have, it really is amazing! It’s been available for a couple of years, and with exposure and the opportunity to utilize it on appropriate patients, it’s gained a good reputation.”
How long Stephanie will continue to wear the new BOA socket depends on her situation.
“Each amputee is different,” Colucciello points out. “I’m hoping she can last comfortably with it for a couple of years, having the ability to adjust the socket to fit future volume changes until the leg is stable, and we can then fit a definitive socket. Time will tell.”
Not everyone is a candidate for the BOA socket, he points out. “The wearer needs to be able to identify exactly what’s going on with their leg, determine if it’s shrinking or swelling, and then make the adjustment accordingly. Some people may need their caretakers to keep an eye on them. But Stephanie should have no problem with it. She’s just amazing!”
Stephanie’s unique approach to living with a prosthesis is rooted in a spirit of playful optimism that touches friends, family, and caregivers.
Her cardinal rule, which she enforces firmly, is that what most people call a residual limb is, in her case, an entity that deserves respect and a name: Stephanie calls hers ‘Freida’.
“The word ‘residual’ is offensive,” she states. “That’s the stuff you have to scrape off your dishes when the dishwasher is done! This is not residue, this is my healthy remaining limb!”
The name Freida is an acronym for some ‘salty sailor language’, she explains—but the name also means “Freedom”—a happy coincidence that gives it a positive spin.
The nurses who changed her bandages daily were quickly trained to recognize and address Freida correctly—as was her vascular surgeon and his staff; and Stephanie is determined to establish this name game as a cheerful trend for other new amputees.
Carrying the game forward, she has also named each of her sockets: Genevieve was first to be a good and supportive best friend to Freida, and she was followed by Goldilocks of “Three Bears” fame, because they couldn’t seem to get the fit “just right!”
With each incarnation, however, she continues to gain experience and to progress without significant backsliding. She’s walking now without a cane, driving herself to outpatient therapy, and she’s learning patience, which she admits has been a real challenge!
(The new BOA socket with its adjustable fit dial was promptly pre-named “Monty”, as in “Python”.)
“Frank has been doing a great job of keeping me on my feet and walking while we wait for this next step, due to delays in documentation and the insurance process.
“Now that I understand this and know I’m going to be going through sockets, I’m going to have a trophy shelf, and I’m going to put all my sockets on the shelf, and explain how I started with Genevieve, and this is how I’ve progressed,” she plans happily.
“Well, you know it’s not been all sunshine and roses,” she admits in a sober reflective moment, “—and it isn’t going to be. You’ve got to embrace whatever emotion you’re having, but not dwell on it, for lack of a better word—because it doesn’t do you any good,” she advises others.
“A lot depends on how people come into this experience. If they’re not by nature a happy person, this is NOT going to turn them into a happy person. But I also was not going to let this amputation be my defining feature. It’s just a part of who I am.
“Frank said what impressed him about me was that I don’t try to hide it,” she adds thoughtfully. “Why would I want to hide the fact that I have now worked my butt off for a year to be able to walk?!? I’m going to put little battery lights around it, decorate it for Christmas, and I’m perfectly comfortable being a walking show-and-share project!”