Someone in the U.S. loses a limb every three minutes. The recovery process is as much about regaining mental strength as physical strength, and a Harborview Medical Center support group has been helping with that for nearly 40 years.
Alex Helms was riding his beloved Ducati 1299 Panigale motorcycle home from brunch with his family on Mother’s Day this year, when he crashed into an oncoming car on a winding Renton road.
Bleeding and in shock on the asphalt, he stared at his nearly severed leg. The expression “life or limb” suddenly took on a new — and literal — meaning for him.
The 29-year-old removed his belt and wrapped it tightly around his thigh to stop the bleeding. Doctors told him later that he likely saved his own life.
“First things first: Stop the bleeding and get out of the road,” recalled the personal banker, skate dancer and lifelong motorcycle fan, who grew up in South King County.
Surgeons tried repeatedly, but unsuccessfully, to rebuild his foot. By the end of the month, he was asking them to amputate. He didn’t want to sacrifice any more muscle, skin or time to a foot that might not ever work again.
“In my mind, I had already said goodbye to my foot,” he said. “I knew it was gone when I was laying in the road.”
That mindset helped him move forward and begin his recovery, a process that he said was as much about his mental and emotional state as his physical one.
Once a week, Helms joins dozens of others from the Puget Sound area at an amputee-support group at Harborview Medical Center in Seattle. Next year marks the 40th anniversary of the group’s establishment, making it the longest-running weekly meeting of its kind in the country, according to the Amputee Coalition, a national nonprofit advocacy group.
Helms’ story isn’t uncommon in the U.S., where an average of 507 people lose a limb each day, according to the same group. That’s one every three minutes.
At Harborview, 175 limb amputations are performed yearly. About 60 percent are due to diabetes, peripheral vascular disease and flesh-eating bacterial infections, according to Susan Gregg, the director of media relations for UW Medicine, which oversees Harborview. Of the remainder, the majority are due to trauma incidents, most often motorcycle and car crashes. Other causes include burns, work-related injuries, and boating and recreational-vehicle crashes. Only one in 10 involves an upper extremity.
Going to the group regularly was “one of the smartest things I’ve ever done,” said Helms. “There are always struggles and obstacles, but you’ve got to break your way through them so you can reclaim your life. Seeing all the other people at the group and listening to their stories gives me a lot of hope and makes me wonder what I’ll be able to do next.”
While losing a limb is devastating to most people, amputees can and do live complete and full lives with assistance and education, said Karen Lundquist, a spokeswoman for the Amputee Coalition.
However, she said, the vast majority of amputees do not receive the kind of emotional, physical and rehabilitative support they need to successfully transition to a new normal.
“It’s incredibly important for people to know they are not alone,” Lundquist said. For people adapting to limb loss, she said, the idea of getting into a relationship or taking on a new job can be daunting and very scary.
“But when they talk to another amputee who is dating or parenting successfully,” she said, “they see it can be done and it’s a huge encouragement.”
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Laughter and loss
Dee Malchow, 73, is a retired Harborview nurse who started the group. She was 19 when she lost her right leg below the knee to a boating accident in Three Lakes, just south of Wenatchee. When she began doing room visits with patients who had also lost a limb, she saw the need for peer support.
“One of the problems is you can feel like you’re abnormal or a freak,” she said. “But when you start hearing other people going through the same thing, you realize it’s OK – I’m not going crazy.”
Physicians became early supporters of the group, she said, when they saw that people who attended began taking a more vigorous interest in their own therapy.
“If we don’t get our heads straight, we can get stuck,” Malchow, who authored “Alive and Whole,” a book about emotional recovery after amputation, says during one of the group’s meetings this summer. “This experience is a journey that impacts every part of our lives.”
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Help and humor
Newcomers to the group — which meets on Tuesdays and is led by a wound-care specialist — might be surprised to hear laughter, and lots of it, coming from the fourth-floor Skybridge room.
It's not the end of the road — it's just a speed bump. I'm just walking a little bit farther to get the flat tire fixed.”
Hugh Boyd, 57, had a planned amputation 17 years ago after years of struggling with nerve damage and Charcot foot, which causes bones to weaken and joints to collapse. He talks about describing the next phase of his recovery to a friend, who was tending bar in a loud club.
Boyd was telling his friend that he would soon be visiting a prosthetist, but with all the background noise, his friend thought he said “prostitute.”
“He kept asking me if insurance really covered that,” says Boyd.
Troy West, of Orting, gets chuckles when he claims he gets “half off on pedicures,” and that he’s a natural for a job at Hop Jack’s or IHOP.
The 48-year-old, who used all his strength to wrench his lower right leg from his body after it was pinned beneath a fully loaded logging truck, says he nicknamed his residual limb “Stumpy” and asked his doctor to explain to his wife that it’s not an offensive designation.
“I have no use for negative or sensitive people in my life,” says West. “If all you’re going to do is coming over, look at me and cry, you got to go.”
The jokes are interspersed with discussions about issues experienced by amputees: phantom pain and how to address it without becoming an addict, finding a prosthetist best suited to various lifestyles, and searching out liners that don’t irritate tender skin.
Some talk about how they feared looking at their residual limbs, which many describe as looking “like a big ham,” and they pull off their prosthetics and liners without self-consciousness to demonstrate exercises and tips.
They talk, too, about losing friends and family members who can’t deal with their handicap.
“You find out who your real friends are real quick,” says Dawna Reinholdt, 30, of Centralia. She has diabetes and was also diagnosed with Charcot foot. “People started dropping out of my life when things started happening with my feet. I get it. It’s a lot of work to take me somewhere.”
Katheryn Martin, 55, of Seattle, refused to give up cooking, dancing and entertaining after her below-knee amputation, but she still bemoans the loss of the many cute shoes she can no longer wear. She is starting to be ready to date and wondered aloud how, and when, to tell prospective romantic partners about her missing limb.
“How long do I wait? Am I supposed to take it off on the first date?” she asked, laughing.
Helms, the man who lost his foot to the motorcycle accident in Renton, said he learned a good measure of acceptance and grace from his mother. What sticks with him most is how she’s dealt with chronic illness without self-pity.
“I never really had even one minute of feeling sorry for myself,” he said. “I’m alive. When you think about it that way, it’s easier.”
His only concern now is for his son, Anthony, who turned 6 last month. The first time the child came in to see him, Helms said, he pulled a bed sheet over his leg so it didn’t frighten his son.
“He was scared and worried about me,” Helms said. But the boy was reassured when his father told him he’d be soon getting a new foot, and that it might even be robotic.
Helms says he hopes, though, that his disability doesn’t spur other kids to make unkind remarks toward Anthony.
“You know how kids are,” he said. “I hope they don’t tease him and say, ‘Ha-ha! You’ve got a one-legged dad.'”
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Insurance is another topic that seems to come up every week at the Harborview support group. According to Lundquist, of the Amputee Coalition, it’s a challenge for amputees around the country.
“There are issues with insurance across the board, and one of the things the coalition does is encourage people to keep fighting for the things that will make a difference to their lives, such as quality prosthetics,” she said.
Boyd said it bothers everyone in the group to see how insurance coverage affects life decisions.
Though he has good coverage now, Boyd said the decision to have his lower leg and foot amputated was based in part on his insurance at the time. Because he’d had to leave his jobs as a server and bouncer when he could no longer walk, he was on COBRA, a program that allows people who have left their jobs to maintain their health insurance coverage for a limited time by paying for it out-of-pocket. Because those benefits last for only 18 months, he decided to have his foot amputated rather than rebuilt.
“If I’d had surgery, I would have to wait for at least a year to see if it worked and then, if I had to have the amputation, I might not have had insurance,” he said.
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He thought he was just getting measured for his first prosthetic leg, but by the end of the day, he was walking out the door.
“This is so wild,” he said, pacing slowly back and forth and pointing out places where the fit felt a little tight. “I did not think I would be walking today. My mom is going to trip. She would have wanted to be here.”
The following week he walked into the support group on his own two feet, with his little boy by his side. It was the thought of his son that had kept him motivated to do what was necessary to survive that Mother’s Day.
I never really had even one minute of feeling sorry for myself. I'm alive. When you think about it that way, it's easier.”
At the end of August, Helms went back to his job at the bank. All day long, colleagues and clients greeted him, hugged him or just sat down for a visit.
“I know a lot of people would be depressed, but I’ve got my life in front of me and I’m actually kind of excited to see what will happen next and what I can do.”