News

Wear your leg proudly

By ERICA HALL

The Mirror

Jay Weil didn’t spend a lot of time feeling sorry for himself after his below-the-knee amputation a couple years ago.

A joyful, effusive person with white hair and a wonder-filled smile, Weil had been meeting with a group of amputees at Harborview Medical Center and knew he’d have the support he needed to make the transition from someone with a constantly painful foot to someone with a prosthetic leg.

Weil was in a car crash 22 years ago that crushed his left side. Doctors put him back together, but his left foot was so badly damaged, it ached for two decades, even after he was fitted with a titanium ankle. It wasn’t an easy decision, but, at 63, Weil elected for amputation to remove his left foot, ankle and part of his shin.

The help he found at Harborview was invaluable, but Harborview was a far drive from his Federal Way home. At the same time, he knew that, statistically, there had to be amputees living in Federal Way who might benefit from an advocacy group.

So he decided to start one. His Amputee Advocates met for the first time Feb. 12, 2003, in a room in the Federal Way Regional Library.

When Weil arrived with his wife, there were already two people waiting. He put out a sign-up sheet, brewed coffee and set out cookies. At that very first meeting, there were eight amputees, three from Federal Way, and a dozen spouses, family members and friends.

Weil was surprised at the turnout. “It’s one of those things. You prepare, but sometimes you have a party and no one shows up,” he said. “I was thrilled.”

Ron Bailey, of Federal Way, was one of the first to stop by the library to check out Weil’s group. Bailey lost his leg after a car crash in July 2003. Surgeons amputated his right foot, but didn’t take his shattered left foot. He was fitted for a prosthetic leg 45 days later. Seated at a coffee shop, he described the difference the prosthetic foot has made. “This feels very comfortable,” he said, bending his prosthesis back and forth to show the range of motion. “My left foot always feels a little funny.”

Jan Erford, of SeaTac, a trim woman with a wry sense of humor, also attends the group regularly. She went in for her first below-the-knee amputation in 2000 after a terrible infection. Last March she had to return to surgery to have another inch or so trimmed because of another infection.

Their experiences show that every amputee’s story is different. “We come into it all different ways,” Erford said. “In some cases, you get a choice. I didn’t.”

Prosthetic advances

Advances continue to be made in the field of prosthetics, but all amputees have an adjustment period. “It’s not like you put it on and it fits like a nice shoe,” Erford said.

When someone first becomes an amputee, their surgeon normally recommends a prosthetist who reviews the patient’s dexterity and stamina and how he or she wants to use the limb. The prosthetist makes a recommendation to the doctor and the doctor writes a prescription — which is required by most insurance companies to cover the limb. The prosthetist then orders the components and makes the limb especially for the patient.

“It’s not a matter of going to a store and picking out one that you like,” said David Starrett, a prosthetist at American Artificial Limb Company in Seattle. Starrett has been making prostheses for 30 years.

Most leg prosthetics are built with feet and the proper angulation and alignment for walking and other normal daily activities. For more strenuous or specialized activities — like skiing, swimming or bicycling — the prosthetist has to make adjustments to the limb or create a second limb altogether.

There are several adaptive devices prosthetists can use on artificial limbs to allow a greater scope of activities, and some patients have several limbs for doing different activities. Still, Starrett said about 95 percent of his patients have just one limb to accommodate all the things they do. “We work hard to understand how our clients want to use their prosthetic,” he said.

The technological advances are nice for active amputees, but Starrett pointed out that many amputees don’t let their disability prevent them from doing what they want to do anyway. “When I first started, most prostheses were made

of wood,” he said. “People still ran on them.”

During Weil’s Amputee Advocates meetings, participants have brought specialized prosthetics to show the group. Bailey, an avid skier before his surgery, was particularly interested in a prosthetic fitted with a ski, as well as one with a roller blade fitting.

Erford has a foot with a heel she can adjust to fit sandals or pumps.

And cosmetic prosthetics are getting better. Erford said she saw a woman at an Amputee Coalition of America convention with a leg and foot modeled after her other leg “that was almost eerie.”

Starrett said some of his clients have opted for cosmetics over function, but he said that’s a departure from the norm.

“There are a few, usually ladies, I have to say, for whom vanity is more of an issue,” he said. “The rest of the people, they just want to get up out of the chair and walk like everyone else. (Their prosthetics) don’t look that great, but they don’t care.”

Support is there

Becoming an amputee is, without question, difficult. The frustration can be overwhelming and depression is not uncommon.

“At first, it’s a humbling experience. You’re dragging yourself on the floor and you’ve got a big heavy cast on,” Eford said.

Spouses and family members can feel almost as helpless as the patient. Some marriages have split over it, though Weil and Bailey felt that had more to do with the state of the marriage than the surgery. “My amputation brought us closer together. In fact, my wife was too helpful. I wanted her to get the hell back to work,” Bailey said, laughing.

“People start treating you like a baby,” he said, adding he didn’t need a nurse hovering over him. “If you fall, you get back up and keep going,” he said.

Weil pointed out the value of spouses attending the Amputee Advocates group. “Spouses also have something in common,” he said. The spouse or partner of a recent amputee isn’t going to know how to help or when to back off. The spouses of veteran amputees can help.

Bailey wears shorts most of the time — they’re easier to put on and take off, and they allow easier access to the plastic cup that fits over his amputated limb — but it wasn’t until he met other amputees that he discovered that’s what almost everyone else does, too.

Experience, and the difficulties inherent in trial and error, have infused Weil, Bailey and Erford with the desire to help new amputees with the simple daily tasks, like putting on pants or taking a shower.

“This is a whole new world, with a language, devices, rules,” Weil said. “It’s overwhelming. There’s not a manual that says, ‘This is how you be an amputee. How to take a shower. What pants to wear.”

Weil’s advocates have grown stronger since he formed the group a year ago. Today, an amputee couple from Puyallup regularly attends. So does an arm amputee from North Bend and a couple from Bellevue. There generally are between six and 10 amputees at each meeting, plus their spouses and friends.

Recently, members of the group participated in a golf tournament with 65 other amputee golfers. “One guy played an entire game with only one leg,” Bailey said. “He shot 84 or 85, which is a good score for an able-bodied person.”

Erford didn’t play this year, but she was one of two women who participated last year. “We did very well,” she said, a smile flickering across her face. “We took first and second in the women’s division.”

Weil said the group has introduced him to other amputees, which has been a source of comfort and inspiration since he had his left amputated. “For 66 years I lived and never knew another amputee,” he said.

Bailey agrees.

“Before I was an amputee, I hardly saw someone with an amputation,” he said.

“We offer encouragement,” Weil said. “It’s good for me to know Ron knows I exist.”

Having a positive role model can help with the transition for new amputees. A Tacoma man, a ski instructor and avid rollerblader who attends Amputee Advocates meetings occasionally, inspired Weil.

“He’s my example of what it’s like to be an amputee. He’s quite the guy,” Weil said. “He kind of wears his leg proudly, and, by golly, I’m gonna, too. The old idea of being an amputee is being broken. This is an in-your-face.”

“It’s more of an adjustment here,” Erford said, tapping her temple, “than here,” motioning toward her artificial leg. “It’s a change of lifestyle and being able to accept yourself in the change. People all the time give up. We’ve chosen not to live that way.”

“It’s an acceptance of a challenge,” Weil added. “The one thing certain about life is change. I’ll change to adapt to what you give me.” Still, he noted, “The new amputee isn’t ready to hear that ... “

“It’s not like you wake up from surgery saying, ‘OK, bring it on,’” Erford said.

But Amputee Advocates isn’t about drinking stale coffee and feeling blue. The members have kept their senses of humor and their love of life and activity.

“We don’t get a lot of ‘Why mes?’” Erford said. “We’ve probably all cried buckets of tears — it’s a loss and you have to grieve — but we don’t just sit around and feel sorry for ourselves.

“We try to do fun things. Depression can be a problem,” she said, then paused, and smiled mischievously. “We try not to go to Mariners games.”

Staff writer Erica Hall: 925-5565, ehall@fedwaymirror.com

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