Stephanee Byars lived carefree before sustaining a kitchen injury to her right arm at work 22 years ago. She was an avid skier, kayaker and biker, and living on the edge was her motto. But her injury posed many problems over the years, and eventually, she was referred to Massachusetts General Hospital in 2020 to have her arm amputated.
“My quality of life has just been impeccable. I’m hiking again, I’m skiing again, I’m kayaking. I can’t wait to jump out of a perfectly good airplane,” Byars, 51, said. “In the last two years, I’ve really started to live again.”
Stephanee has been living without her right arm for four years, and while it certainly has been a difficult adjustment, life without her injured arm was a much better choice. Initially after the injury, she developed gangrene that was painful and made it difficult for her to use her arm. As time went on, doctors tried to save the arm through various methods that put Stephanee in extreme pain.
“I had an appendage that was literally in a brace that had a shoulder cap on it, that had my arms strapped to my body, that had a rod sticking two inches out my humerus bone that was fracturing my arm every day. And it was the most painful thing I’ve ever been through in my life,” Stephanee said. “It was like that for two years, and I wanted it off and I was in agonizing pain, and I just couldn’t wait. So, when they did it, I was just thrilled.”
After the surgery, Stephanee she was in the hospital for about a week before returning home. At home, she had help from family doing chores around the house. Her parents lived a couple miles down the road and would visit frequently. Even after losing her arm, Stephanee was not able to sit still.
“After I think a week in the hospital after having the arm amputated, she was out here walking around the yard and she was picking stuff up,” Sundee Dumais, Stephanee’s mother, said. “She just didn’t let it stop her.”
Stephanee lives with her husband Robert Byars, 51, in Gilford. Robert has provided emotional and physical support throughout their nine years together. While there were difficult times in their relationship because of the problems Stephanee faced with her arm, Robert sees his marriage as the same as any other.
“It’s like an emotional roller coaster. It has good days and bad days. And it’s not just because of her arm. It’s just normal husband and wife relations,” he said. “During the amputation it was difficult, of course it was.
“Any marriage is going to be the same as ours. It’s just give or take.”
Stephanee has two prosthetic arms she can use. One traditional, simpler prosthetic, and another more expensive, high tech battery-powered arm enhanced with artificial intelligence. The battery-powered arm can learn from electrical signals in the nerves in Stephanee’s arm how she wants to manipulate the prosthetic, and as time goes on, the AI will make moving the arm easier with practice. Stephanee’s situation is unique; during the amputation doctors placed nerves from her hand into her upper arm, which allow her to control the more complicated prosthetics. She can teach it to bend and straighten the elbow, twist the wrist and open and close the hand. It can also learn to grip at various strengths.
Stephanee received both prosthetic arms from FDR Center for Prosthetics and Orthotics where she worked with Paul Harney, president, co-owner and orthotist in Burlington, Massachusetts, at their location in Nashua. Harney has known Stephanee for 18 years, and has worked with her more thoroughly with her prosthetics after the amputation. Due to the impressive surgical procedure, Harney believes Stephanee’s condition to be unique. Her drive and motivation to adapt also captured his attention.
“I put together a team here at our company to be able to work on Stephanee’s case, because it was so unique,” Harney said. “We brought in people from outside the company.”
Harney also said that in a few years, Stephanee may be able to take advantage of new technology that might allow her to move fingers individually. Harney is excited about this prospect.
“I’m 63 years old, and I want to be around when all this great stuff happens for her,” he said. “I want to be around, I gotta see it. I gotta see this through.”
Because of Stephanees unique condition, she participates in research, and goes to various conferences to speak about her experience with her disability, and Harney’s AI arm.
Despite all this attention, Stephanee said she doesn’t like to receive specialized treatment because of her arm. She believes trying to adapt her life to better fit into society is easier than the other way around.
“If you don’t figure things out in a world where everyone is not at a disadvantage, and don’t get used to it, then you’re at the disadvantage,” she said. “Not everyone has only one arm and not everyone is going to change. No one’s going to change for you.”
She also gave an analogy about how making the world fit her doesn’t necessarily make things easier.
“You can have your car augmented for you, but if you get it in another car, you’re screwed,” she said.
While both of her prosthetic arms are useful, she often goes about her life without them, as she finds her own adaptive methods easier. One of the activities Stephanee enjoys is gardening. She grows flowers like daisies and coneflowers. To use garden tools, she puts the handle in what she calls her “nubby” and grips the tool with her left hand, allowing her to use the tool as if she had the use of two arms.
This past winter, Stephanee went skiing for the first time in 15 years. Stephanee skied almost her entire life before her arm injury, and was even an instructor at Gunstock Mountain Resort; skiing was basically second nature to her. After three days of practice and readjustment, her muscle memory took over and she was able to ski as if she had never taken a break. She recently went on a double black diamond run.
“It never left,” Stephanee said. “It took me two, three days to really get my feet back under me and that was it.”
Stephanee is also part of New England Disabled Sports, a program which provides year-round adaptive sports instruction to adults and children living with a physical or cognitive disability. She says this program helped her in her journey to ski again.
A documentary called “Crip Camp” about a summer camp for teens with disabilities helped her grapple with being being “crippled,” as she called it. She used to find that term offensive, but now doesn’t pay it much mind. It especially helped her deal with the stares and whispers her “nubby” would bring.
“I’m just like, ‘Dude, I don’t have an arm, deal. You don’t have to whisper about it,’” she said. “‘I don’t have an arm. I probably ski better than you, I bet I can change a tire better than you.’ Don’t think I’m limited because I don’t have an arm.”
In some ways, Stephanee finds losing her arm to be a positive thing. While she may have lost an appendage, she feels like she gained a new insight in how to approach life.
“I was a Negative Nelly, and now I’m just Positive Peach. I am such a positive person now, and a lot of my life I was really a pessimist, and I just don’t look at life like that anymore,” Stephanee said. “Because life’s too short. There’s too much to lose. I don’t want to be that little old lady saying, ‘I wish I had done that.’ I want no regrets.”