Lessons from the Past… Stephanie Elliott

You might say that Stephanie Elliott’s journey as an amputee has been illuminated and brightened by her past experiences—and by lessons she hadn’t been aware she was learning, until she needed them.

That journey began on Dec. 28, 2020, at the height of the pandemic. She arrived at the emergency room with her left leg dramatically swollen, due in part to diabetic complications.  After a three-day battle, she lost the leg due to sepsis.

“It was sad, it was sudden; and because of the Covid lockdown, nobody could be with me at the hospital,” she remembers. “My daughter had to drop me off at the ER. My husband had to dial in to participate in the amputation discussion with the vascular surgeon.”

Although she praises her local hospital and the fantastic doctors who worked with her, nothing can truly replace the vital family support system she lacked during that stressful period.

A highly social extrovert, however, she bonded rapidly with her roommate, who was also experiencing difficult life challenges. “We provided moral support for each other—because we had nobody else,” she recalls.

Recognizing the incongruity of returning from surgery without a leg, coupled with the prosaic need to order supper, they even joked a lot, Stephanie remembers.

IMG 4555 Steph Landscapes rotated

The surreal situation appealed to her ready sense of humor, especially when her first realization that “I literally do not have a leg to stand on!” resulted in a fall, despite advance warnings—and earned her a bracelet that identified her as a “fall risk”.

“Shouldn’t I have had one of these, first thing? –like when my leg came off?” she teased her nurses.

During her hospital stay, she spent much of her time going downstairs to Moss Rehab. “I can’t say enough about them!” she praises. “My therapists helped me with both the mental aspect and the physical therapy.”

From them, and the memorial service they conducted for her leg, she was enabled to learn and accept that while her leg had carried her to this point in her life, it was now gone. While grieving for it was normal, it was important that she move on and take on new challenges.

During the ten months that preceded her October prosthetic fitting, Stephanie had ample time to practice navigating around her house with a wheelchair and walker, relearning how to perform her normal chores and activities. So she was ‘geared and ready’ to get something to help her ambulate with two legs again.

At no point did she attempt any Googling or research concerning her prosthetic future: “I wasn’t going to listen to all the noise. I trusted the people that had come into my life to help me through this, and I was going to focus on what they said,” she decided.

Her prosthetist, Lawall’s Frank Colucciello, CPO, was one of those she trusted: “Frank has such a big personality, so encouraging! He always says ‘Sure! What do you want to do? You can do anything you want to do!”

“I’m not sure you want to tell me things like that…!” warned Stephanie, whose ambitions are not small.  “At our first meeting I told him that I paint rooms, refinish furniture, and I garden heavily. I don’t just plant flowers, I move boulders, make little ponds, that kind of thing. My parents still live in the area, so I’m over there a lot, helping to take care of things in their house, as well.”

A serious cook to the tips of her Polish roots, she recognizes the true power of home-crafted food, and shares the secret that Frank can be bribed with cookies.

One of her goals is to tackle creative concrete work, she advised him. “I’m not the kind of person to just sit on the beach and do nothing, so I’m not worried about getting sand in my leg; but we’ve got to make sure that I don’t ruin it with paint or furniture stripper—maybe I need more of a hazmat suit!” she suggested.

Safe at home again, she’s grateful for her outstanding support system: her husband of 35 years (Bruce, a gifted IT specialist), two wonderful daughters and a stellar son-in-law, plus lifelong friends and former co-workers who have proven themselves as ‘good ralliers’ who drop by, bring lunch, provide hair trims, and more.

“When I had my leg for the first time, it was very emotional. Everybody was crying, so I told them it was nothing to cry about! I rolled up my pant leg and showed them how to pop the leg off—demonstrating the mechanism of how it goes on, and helps me get where I need to go.”

The eldest of four children, Stephanie explains that all three of her siblings were deaf, and growing up and learning with them gave her a naturally adaptive advantage that has helped her to address her current challenges, as well. Captioned TV shows—with the volume turned low or off—and the presence of labels on everything in the house helped her develop reading skills early, and, coupled with the absence of baby talk in the household, enabled her to pass kindergarten testing at a younger age than her classmates.

Steph bakes cookies

“When really young children are learning, everything is a new skill set to them. We bring them in and they’re like a bunch of free-range chickens! You address the simplest thing, like ‘get in a line’ that you don’t think about—and they don’t know what any of that means!” she laughs.

“If you watch how kids adapt to their environment, and how they approach things, you’ll see that if it doesn’t work the first time, they persevere, but they don’t keep doing the same thing over and over again—they try different ways! Because they have no expectations, and no understanding that there’s ways they’re supposed to follow: they just want to do it their way!”

In teaching workshops on how to set up a classroom by avoiding running patterns while still creating quiet spots, she also learned how to deconstruct the process, and address it in small, ‘bite-sized’ steps.

“I’ve taken that approach with myself,” she realizes. “I’m now my own student, attacking the one-step challenges in my house: one step up to a landing, a bigger step up into the house, then a bigger step down into the laundry room, before the full set of steps upstairs!

“So I approach each step as ‘Okay, how are you going to do this?’ If it’s in my head and I imagined it, it can be done. I just have to think outside of the box on how to do things.”

Adjusting to a Prosthesis

“One of the things I did at Moss in January 2021 was to request a family meeting with the psychologist that worked with me. I was going home after 15-16 days between hospital and Moss, during which time nobody had been able to come in and see me. I realized I was going home completely different, and we should probably talk it all out before we hit that point,” she remembers. “He was very much on board and that session was immensely helpful to all of us, I think.”

Steph mixes batter kitchen

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!”

Woman with prosthetic leg with her family

A Relationship Built on Trust

“When I was at Moss, and didn’t know what I needed, all the therapists there told me I needed Frank from Lawall, because the company does a very good job, and he’s got a very good personality and he’s seen everything because he’s been doing it for so long,” Stephanie notes.

“If you’ve got a place that you trust, like Moss Rehab, that has a good name for themselves for what they do—then when they recommend somebody, you’re inclined to listen!” she concludes.

“When you meet some people, you know it’s their passion—they’re doing the job they’re meant to be doing,” she explains. “That’s how I felt when I met Frank—and it’s how I felt when I met the therapists at Moss. They’re doing something that they’re very passionate about.

“As Frank says, everybody’s journey is so different—which is what makes this job so interesting for him,” Stephanie reflects. “I had never met anybody in the prosthetic business before my experience with Lawall, but if you ever need orthotics or prosthetics, or if you know someone who’s in this situation, talk to me—because I’ve got a good team that I think would really do right by a person.”