It takes a special mindset to adapt to limb loss later in life.
by Rebecca Levenberg
When I first met Marie Devlin, she was perched on the edge of the very same therapy mat where I had done my own rehabilitation. I strode over, careful to keep my gait smooth and natural, as I always do when I meet new amputees. I didn’t know much about Marie back then, except what I could see on the surface: Her left leg was amputated above the knee like mine, her hospital bracelet said she was 77 years old, her thick brown hair was styled into a bob, and her eyes sparkled with some special energy.
Hope? Resilience? Determination? I wasn’t sure.
I introduced myself as the rehab hospital’s coordinator of amputation support services. “I’m an amputee too,” I said, yanking up my pant leg to reveal my own prosthesis.
“Look how well you walk!” Marie exclaimed, and I answered, “Well, I’ve had ten years of practice.” It was my usual response, meant to reinforce the underlying rules of rehabilitation: Listen to your therapists. Do your exercises. With hard work and time, anything is possible.
I expected her to give an encouraged nod and return to her leg lifts with renewed energy. But Marie, as I would come to learn, doesn’t always stick to expectations.
“I don’t have ten years,” she shot back with a smile.
The remark stopped me in my tracks.
I’d met many amputees of roughly Marie’s age, but none had articulated their future so starkly. According to the Amputee Coalition’s new prevalence study, more than half of all amputations result from complications of vascular disease and diabetes, and roughly half of those amputations occur in patients age 65 or older. Tens of thousands of senior Americans every year have this experience, which is markedly different from my own. I lost my leg to traumatic injury at age 41, when my body was strong and my heart and mind were focused on a long, active life ahead. What would it feel like to lose a limb after years of illness? To endure amputation alongside age-related health or mobility issues?
Marie raised questions I’d never had to consider: Adapting to limb loss takes years. How can we do it if we’re not sure how many years we have left? And why make the effort?
During her weeks in the hospital, I got to know Marie better. I learned that she had worked as a nurse for more than 50 years, that she was always ready to laugh, and that her trendy haircut was actually a wig. I also learned that Marie had one overarching goal for her rehab, the “why” that kept her motivated: She wanted to become independent enough to resume living in her own home in South Philadelphia.
It was a worthy goal, and a perfectly reasonable one. It’s not as if she was asking for a miracle. But up to this point, instead of getting support in pursuit of that objective, Marie had routinely encountered indifference or outright resistance. The health system seemed designed to frustrate her efforts and impede her progress—and that was one of the most discouraging things about losing a limb late in life.
“THEY THOUGHT I WAS NO GOOD”
Like many patients her age, Marie came to amputation at the end of a long odyssey of health challenges, which in her case included kidney and circulatory issues. Beginning in 1998, walking became gradually more painful, causing charley horses in her legs that lasted for hours. She continued to work for another 20 years, until age 75, adapting her lifestyle by reducing time on her feet and eventually giving up driving. She underwent bypasses on both legs, but the one on her left didn’t work out. She didn’t have enough usable arteries in that limb, so her circulation was diverted to smaller tributary vessels that couldn’t sustainably meet the demand. After years of problems, she suffered a blood clot in her left leg, which finally led to amputation in 2020.
It wasn’t a quick fix. Marie spent weeks in the hospital recovering from the operation and was rehospitalized several times for infection. In between, she landed in various nursing and assisted living facilities where she describes the care as subpar. At one stop, she says, “I had a bed with no sides. They didn’t use the Hoyer unit [to lift me]. Some patients there had below-knee amputations, but they had a knee to support them. I didn’t have anything on that side. So [I had] to do a lot of education.”
Marie’s physical medicine and rehabilitation (PM&R) doctor knew she would do better in an acute care rehabilitation setting, but her age and complex health issues were perceived as barriers to a successful outcome, making admission less likely. “I felt like I was going to Harvard,” Marie says. “I had to do certain things to get in.” Unfortunately, she says, the therapists at her assisted living facility didn’t help her get ready, as if she wasn’t worth the trouble. “They were thinking [I’m] no good,” she says.
It wasn’t the first time Marie had butted heads with a healthcare bureaucracy that’s insensitive, even outright hostile, toward patients with multiple needs. During her nursing career she routinely took on difficult cases that required extra attention. Over the decades she had worked as a visiting nurse for people who couldn’t leave their homes due to mobility challenges. She helped Vietnamese refugees access immunizations, using her degrees in nursing and education. She reviewed proposals for Native American education programs. She worked in clinical trials and coordinated care for people with developmental disabilities. She trained staff at group homes and ran educational forums for hundreds of nurses. Marie knew how important it was to receive appropriate treatment and services.
When she realized she would have to fight for the higher level of care her doctor recommended, Marie started making calls. She secured a new primary doctor and new nurses. When one medication made her dizzy, she secured a prescription change. She asked her PM&R physician to connect her with a doctor at an acute care rehab hospital, where she could receive more therapy focused on her goals. It took nearly eight months for her to get there.
Marie’s experience isn’t uncommon for people her age. A 2023 article by Cedars-Sinai cites ageism as an under-recognized bias in healthcare that can contribute to poorer health and quality of life, increased hospital stays, disability, cognitive decline, and depression in older adults.
It’s true that older amputees face a unique set of challenges, just as older patients with non-limb-related conditions do. Their skin tends to be more fragile. They may struggle with muscle tone, strength, coordination, or balance. They may have longer recovery times and require repeat hospitalizations due to disease or circulatory issues. They might also have accessibility or transportation needs that make it difficult to attend follow-up appointments.
It’s also true that professionals may underestimate their potential for mobility and independence.
We should look beyond stereotypes related to aging, suggests Kevin Carroll, a vice president for Hanger Clinics. Age “doesn’t measure a person’s heart, mind, or motivation,” he wrote in a 2015 article for the Amputee Coalition. “Whether expectations are positive or negative, people tend to live up to them.” He adds that research points toward specific steps that can maximize success for older adults. Those who understand functional K-levels, engage in appropriate physical and occupational therapy, focus on individual goals, and find purpose in daily life tend to do better in their recovery. Prosthetists can help by fitting older adults with prostheses that balance safety and functionality with lightweight componentry.
When I met Marie in the therapy gym, her heart, mind, and motivation were in excellent shape, and she had high expectations for herself despite the struggles she had already faced. She was realistic about her challenges, but she refused to accept amputation as a dead end. “Life is what you make it,” she told me. “This wasn’t my first tragedy. If I sat around, I’d be doing nothing. One thing teaches you the next. It’s kind of funny. You think, this isn’t as bad as that.”
“Marie has an amazing outlook on life and a determination that was unmatched,” says Aliah Keirsey, her physical therapist. “When she had all the odds against her, she continued to push toward her goal of returning home independently.”
Her persistence paid off in the end, when Marie left the rehab hospital and returned to her home. Her brother was instrumental in getting things ready: He arranged the furniture on the first floor to accommodate Marie’s bed and commode, reorganized the kitchen so supplies were within reach, and helped identify a home health aide, Ruth, to assist Marie a few hours each day. Even with all that help, it wasn’t a completely smooth transition. Marie encountered major accessibility barriers both inside and outside her home. Her first wheelchair was too heavy for her to propel across the carpeting on her floors. The five concrete stairs from the front door to the sidewalk formed an Everest-like obstacle that blocked the way to follow-up appointments and outpatient therapy sessions. Marie was assigned an in-home physical therapist who lacked experience with above-knee amputations.
Like many new amputees, Marie also had trouble getting a good fit for her first prosthesis. But when she asked to have her prosthesis adjusted so she could begin mastering the outside stairs with assistance, her prosthetist openly discouraged her from even trying to improve her mobility. “He said to me, ‘What do you want to do that for?’” Marie recalls. “‘You’re 80. You shouldn’t [even] be doing what you’re doing.’” Her response was: “You don’t know me. I’m not going to stop ’til I die!”
Marie describes amputation in older adults as a dual diagnosis. “Keep away from prejudiced attitudes,” she advises. “They waste your energy and your money. When you’re aged, it just takes longer, and we need to educate everyone about this simple fact. Parts are worn down, but they mostly just work slower.”
She sees a tremendous need for education—both for healthcare professionals and amputees—so that patients can receive the best care at any age. She suggests an enhanced curriculum on limb loss at medical and nursing schools, special training for rehab and caregiving staff, and even a simplified video for amputees to help them understand the systems and processes they’ll need to navigate their everyday lives.
When Marie’s progress stalled, she reached out to therapists at the rehab hospital for suggestions and referrals. They helped her find a physical therapist who had the knowledge and training to help her learn to use her prosthesis, and she found a prosthetist who didn’t constrain her with low expectations. Marie connected those new practitioners with her PM&R physician so they could work together to coordinate her care.
Those changes helped Marie keep moving forward. But that’s not to say she no longer faces challenges or setbacks. She struggles with balance and lifting the weight of her prosthesis, so she wears it only at strategic times of day when Ruth is there to assist. Ruth helps Marie do her exercises and descend the outside stairs when they need to go to PT sessions or other appointments. Last year, Marie fractured her right leg, her sound side, just before her brother passed away. Ruth’s husband helped carry her down the stairs so she could attend her brother’s funeral.
There are ups and downs every day. But along with the daily hardships, Marie can see benefits to all the hard work she invested in her rehab. After many years of vascular issues, she now experiences less pain. As an added benefit, her physical therapy exercises have strengthened and improved the circulation in her sound leg too.
I THINK I CAN….
When I ask Marie what keeps her going, she quotes one of her favorite childhood books, The Little Engine That Could. Many times a day, she channels the strength and optimism of that little blue engine pulling its cargo up the mountain. “This became my life mantra,” she says. “I giggle and start my next battle with prayer and, ‘I think I can, I think I can.’”
Spirituality has always been important to Marie’s life, and it has helped her get through the hardest parts of her journey with limb loss. Her mobility challenges make it hard for her to attend church easily, but she attends a church group that meets on Zoom twice a week. Sometimes she goes with Ruth to a healing service at nearby St. Rita’s Shrine. “I don’t lament what I can’t do,” Marie says. “I never had my life depend on something tangible. I depended on God. Faith is my strength.”
If prayer starts her engine, the fuel that keeps it running consists of three ingredients. The first is what Marie calls ingenuity-creativity. This is the backbone of her independence. If Marie comes up against an obstacle, she educates herself, researches her options, and settles on a solution that works. When she couldn’t propel her wheelchair on the carpet at home, she found a lighter wheelchair. When she learned that a higher K-level would qualify her for insurance coverage to get a more advanced prosthesis, she set a goal with her physical therapist to work toward a higher level. She’s got her eye on a new commode that’s better than the one she has. “It only seems to be available in the United Kingdom,” she says, and to acquire one she’ll have to conquer the currency exchange, weight, and logistics of getting it through customs. But she’s determined to find a way. “I will keep trying to get one,” she says.
The second ingredient, baby steps, describes Marie’s approach to managing everyday tasks. She gets herself up, washed, and dressed before Ruth arrives in the morning. She cooks meals from her wheelchair—bacon and eggs are her specialty—and she loves baking cakes. She organizes her closets and does her own laundry. She gets it all done by working slowly and methodically, always with safety in mind, using whatever assistive devices make sense. “The grabbers are my life,” she says of her reacher tool. “I have one in every room.” By breaking down each project into a series of smaller tasks, Marie maintains her daily routine and stays focused on what she can do, rather than what she can’t.
The third ingredient that fuels her engine is humor. When Marie struggles, she reminds herself of funny situations, like the time she almost kicked her PT in the head with her prosthesis during her exercises. One day in the hospital, she switched to a blond wig instead of her usual brown, so when the doctors came on rounds, they didn’t even know it was her. “It changed the whole atmosphere,” she says. “You know how serious they are. I said, ‘Fooled ya! Fooled ya!’ and we all started laughing. You should have seen their expressions.”
Marie’s little engine chugs up the mountain over and over again. But what’s at the top that makes the trip worthwhile? Why put forth all the exertion?
In the four years since I met Marie in the therapy gym, she has become a regular face at our amputation support group on Zoom. She listens to others when they’re struggling and offers to talk privately if somebody needs more support. She brings strategies, wisdom, and perspective to every discussion. She can’t come to our in-person events, but she uses a Zoom link to attend them virtually. We pass around the laptop so everyone can say hello. It’s like Marie 2.0.
To ease her sense of isolation, Marie has built her own network of relationships outside our support group. She belongs to her church group on Zoom and plays games online. Ruth has become as close as family. Her neighbors visit regularly to play Yahtzee, Po-Ke-No, or pinochle. Marie keeps kid-friendly snacks for when friends bring their children. She can’t get out like she used to, so she’s become the host. “I like to have fun,” Marie says. “Anyone who wants to have fun will find me.”
When I found her at home on a recent day, I asked Marie if she remembers that very first interaction we had— the one in the rehab gym, where she told me she doesn’t have ten years. “That sounds like me!” she laughs. Reflecting a bit more, she adds, “I know my time is finite, but there are advantages to everything. I don’t need a new roof that’s going to last ten years.”
At the rate she is going, I’m not so sure about that. And, in a sense, it doesn’t really matter. Everyone’s time is finite. “You can be 30,” Marie observes, “and you still have to make the most of the time you have left. You have to have that frame of mind.” Living a full life as an amputee depends on it—at any age.
I think I can. I think I can.
I picture the summit of Marie’s mountain, in the home she loves. When her engine pulls in, she’s greeted by friends and neighbors, family and chosen family, colleagues from her professional life, amputees on their own journeys, a medical team she trusts, a PT who keeps her strong, and a prosthetist who believes in her. Connections she has nurtured, people she has brought together. Her community.
That’s what’s at the top. That’s what makes the whole journey worthwhile.
Rebecca Levenberg is an educator and writer. She coordinates the amputation support program at Jefferson Moss-Magee Rehabilitation in Philadelphia. Learn more at Levenberg’s blog, my-1000-miles.blogspot.com.
