When Paul Kent told his doctors he wanted to have his legs amputated below the knees, they sent him to a psychiatrist.
Kent, 58, has always considered himself an athlete. He was on the swim team at the University of Michigan and later did an Ironman triathlon and CrossFit workouts to keep in shape. He became a financial investor on the West Coast while raising two boys as a single parent.
But in his 30s, he developed a genetic peripheral neuropathy that plagued his family. It caused foot wounds that were increasingly resistant to antibiotics. When he turned 50, a blister on his toes developed into a massive wound and a battle with sepsis. Over the next 7½ years, Kent thought about dying every day.
“My ankles and below were dead,” he says. “You could drive an ice pick through my feet.”
Kent had nine surgeries and lost all his toes. He had to do constant wound care and was advised to keep his feet elevated at home. But the sedentary life was not for him.
“That’s not an option, because that creates a whole lot of other health issues, not to mention mental health issues for me,” Kent says. “Getting a sweat every day and experiencing the outside and all those things are mandatory.”
Kent’s life plunged into darkness. He became depressed, lonely, exhausted, and broke. His quality of life declined faster than his bank account.
“I had a nagging dark cloud in the back of my head about dying from infection,’' he says. “It was only a matter of time before an infection would do that to me. I lived in fear of death and I said, ‘Let’s get rid of them.’
“My doctors and my team thought I was crazy. And one of the doctors said, ‘We need a psychiatrist.’ And I said, ‘Great, I’ll talk to a psychiatrist.’ ”
The psychiatrist agreed with him.
At the time, Kent was working on investments for innovative projects when he spoke with Hugh Herr of the MIT Media Lab’s Center for Extreme Bionics.
Herr, a double amputee globally famous for his robotic prosthetic program, connected Kent with Dr. Matthew Carty, the Lower Extremity Reconstruction Program director at Brigham and Women’s Faulkner Hospital.
Carty performed the first Ewing Amputation in 2016. It was named after his patient, Jim Ewing, who shattered his leg falling 50 feet in a climbing accident. The surgery helped restore the limb’s natural dynamic of muscles working in relation to one another, so that the bionic limb could function more like a natural limb.
Carty gave Kent hope.
Kent, who goes by “PK” and whose family was originally from Massachusetts, drove a pickup truck and U-Haul cross-country from Marin, Calif., to Hingham, then waited through long COVID delays for the surgery.
Losing his legs below the knees, he said, would give him back his life.
“A lot of people are shocked when they hear the story and then try to grasp it,” he says. “You know, this will do two things, by taking these God-given feet that are tired and burnt and replacing them with the latest and greatest.”
Kent did not fear surgery.
“I’m not scared. I’m really, really comfortable,” he said shortly before his operation. “I’ve been 5-11 my whole life and I’ve been told I can be 6 foot 2 if I want to.”
Taking the leap
On Dec. 1, 2020, in an 11-hour surgery, Kent became the first person to have a bilateral Ewing below-knee amputation.
Carty says it takes someone very special because the surgery is experimental.
“We’re among a group of people right now who are thinking about amputation as a reconstructive procedure, not as a failure,” Carty says. “Up until now, for the most part, it’s been regarded as, like, giving up, throwing in the towel medically and surgically. To take this leap with us, it’s a big deal.”
Carty is working with Herr’s team to improve on a bionic limb that is able to interface with these new types of amputations. The concept sounds a bit like the part in “The Empire Strikes Back” where Luke Skywalker loses a hand and gets a replacement.
“We’re not as dramatic as what you see in ‘Star Wars,’ but yeah, we’re getting closer, actually,” says Carty. “It’s pretty amazing to witness what happens when you take these experimental prosthetics and link them with limbs of patients who’ve undergone Ewing’s. They can do things with this technology that patients with standard amputations cannot do.”
Kent overachieved in his recovery at Spaulding Rehabilitation Hospital and adapted quickly to his first prosthetics made at Next Step Bionics and Prosthetics.
His posts on Instagram (@paulwalkrunagain) are always upbeat as he meets his goals. He has already completed a 5K run and plans to run the Boston Marathon in April to raise money for Brigham and Woman’s Stepping Strong Center and Spaulding Rehabilitation.
For fun, he has danced at his son Robert’s wedding in Michigan, played 18 holes of golf, and attended a surfing camp in Maine. He even started swimming again in the ocean for the first time in eight years.
His hero is Morgan Stickney, who had two separate Ewing amputations performed by Carty and then won two gold medals in swimming at the 2021 Tokyo Paralympics. He also dreams of competing.
Kent remembers returning to Michigan for homecoming and meeting with his former swim coach, who was trying to make him look good in front of his son. The coach raved about how powerful PK’s stroke was.
“He was talking about how great a swimmer I was, but he says, ‘Your father never had a kick.’ And my older son remembers that a few months back and says, ‘Daddy, you get your legs chopped off. We start swimming again. You’re probably going to be pretty competitive.’ ”
PK asked him, “So how do you figure?” and his son replied, “Because you never had a kick. And now you’ll have less drag.”
Barriers to unblock
Just after sunrise on a chilly November morning, Kent swims with an able-bodied group called the Crusty Barnacles. They wear wet suits; PK does not.
He pushes the envelope and swims farther out and alone in the 54-degree water. When he returns to shore, his new aqua feet have a minor malfunction. It requires some in-surf adjustments by the other swimmers to get him back on his feet. PK shrugs it off and talks about how exhilarating a sunrise swim is in the Atlantic.
“He’s amazing, he’s inspirational, and makes you think of your life differently after you meet him,” says Doug Sichol of the Crusty Barnacles. “He’s definitely out of his mind, but he’s a good crazy.”
On Dec. 1, his “ampuversary,” Kent announced that he is forming a new company to “unblock barriers and unlock resources vital to normalizing life for those of us with differences.”
It bothers him that so many people who need prosthetics can’t afford them. His new goal is simple: To remove the “dis” from “disability.”
Stan Grossfeld can be reached at firstname.lastname@example.org.