Crutches make people more polite. When I use them, people hold doors for me. "Hurt your leg?" they ask, giving me a sympathetic look. "I know how you feel." I never know what to say. They don't know how I feel. They have two feet. Since I turned 32, two years ago, I've had only one.
There are 2 million amputees in the United States, according to the American Amputee Association, and 3,000 more amputations each week. In Washington, there are several thousand people missing a leg, a hand or a foot.
The loss is sudden, and it lasts forever. I muddled through my healing the way many new amputees do: on my own. I kept my feelings of grief, anger and bewilderment to myself and privately resolved them. It took me over a year to adjust to my new, slightly smaller shape and to learn to walk on a below-the-knee prosthesis. It's frustrating and confusing, and it's unnecessary. There are a surprising number of resources available to amputees in the Washington area -- specialized clinics for children and adults, prosthetic labs, sports organizations and support groups.
Every amputee's story is different, but most of us have many things in common. I lost my foot after a long battle with a bone infection that began with a small blister from a too-tight shoe. The condition was complicated by the absence of feeling in the foot and poor circulation, the result of spina bifida -- a congenital defect of the spine.
Accidents, disease such as cancer, and congenital defects account for most amputations among the young. But young amputees are not the majority. "The average amputee is over 55 and has either diabetes or peripheral vascular disease -- plaque buildup in large blood vessels," said osteopath Larry Prokop, who heads the newly organized amputee clinic at Washington's National Rehabilitation Center. "These people are prone to injury because they have reduced sensation and poor circulation. A little cut can become gangrenous in a matter of weeks."
For all amputees, rehabilitation means learning new skills. Balance is the first skill: getting used to the weird lightness of an amputated limb. Carl Cross, a Washingtonian who lost his left foot in a motorcycle accident, found himself relearning daily routines at age 46. "I learned to get in the bathtub, to put a shoe on my prosthesis and to take a cup of hot water from a counter to a table. They wouldn't let me out of the hospital until they saw what I could do."
Pain management is a continuing concern. The pain of surgery disappears, but the mysterious "phantom pains" in absent toes or fingers can persist for years. These pains, believed to be caused by scarring at severed nerve endings, usually feel like an aching tingle, but they can be severe enough to require relaxation techniques.
It takes four to six weeks before a new amputee can begin walking in a temporary prosthesis. The sutures take time to heal, and the amputated stump shrinks, sometimes dramatically, for weeks and months. When the stump stabilizes, fittings for the permanent prosthesis begin.
Only patients without heart problems can use an artificial leg. Wearing a prosthesis forces the user to readjust his balance, and moving the dead weight of the artificial limb taxes remaining muscles. Even the light ones require extra energy, 9 percent more for one below-knee prosthesis, according to an Orthopedics Surgeons Conference in Chicago last year. Walking on two above-knee legs takes 280 percent more energy than walking with normal legs.
Prosthesis technology has exploded in the past 10 years. Legs once made of wood and leather now are lighter and more efficient. Myoelectric arms with bending elbows are available. But prosthetics are expensive. An average below-knee leg costs $3,500; the myoelectric arm, which uses electrical sensors to detect nerve impulses in residual muscles, costs $7,000; an above-knee leg starts at $8,000. New, lighter high-tech materials and cosmetic extras, such as lifelike "skin," can more than double these costs.
Many amputees complain that insurance companies, which pay for basic devices, often refuse to pay for these "luxuries," even though they have been available for years. "Patients get very frustrated. But some of this new technology is not appropriate for the average amputee. It was developed specifically for athletes," said prosthetist Ray Kaplin of Bethesda's Capitol Orthopedics. "But if you need new technology, if you want to ski or run marathons, for example, then often a doctor can prescribe them for you. For people with a normal activity level, though, a perfect fit is what makes the difference."
Even with a perfectly fitting prosthesis, amputated limbs are unnatural walking surfaces, and skin care is crucial. "Even a slight injury can lead to further amputation," warned Prokop. "Amputees need to keep their limbs extra clean and dry and take care of pressure sores and cuts right away."
Amputation is a major trauma psychologically as well as physically. Anger, self-pity, depression and fear are common. Amputees, especially adolescents and women, may feel mutilated and unattractive. These are all aspects of grief, founded in a real crisis of loss.
"It's not as bad when a child is born without limbs," said orthopedist Charles Epps of the children's amputee clinic at D.C. General. "But if someone is old enough to have enjoyed a normal life, it's very hard to take."
Families suffer, too, often worse than the amputees themselves. "Sometimes, the kids bounce back but the parents just grieve and grieve and grieve," said Epps. "The guilt is overwhelming, especially if the parent feels responsible -- after a car accident, for example. We try to get them to realize that if they heal, their kids will heal, too."
Traditionally, amputees are treated by a doctor and a prosthetist, who makes and custom-fits the artificial limb. Some institutions, such as Fairfax Hospital, D.C. General and the National Rehabilitation Hospital, now employ a "team approach" in which a doctor, nurse, physical or occupational therapist and prosthetist work with patients.
Hospitals also frequently offer patients the services of social workers or psychologists. "Sometimes, a patient will tell a social worker things he won't say to a doctor," Epps noted.
Prosthetists, doctors and patients agree that amputees need time to adjust to a drastically changed body, to a different role in the family and an uncertain reception from society. "It hurts me to have my wife waiting on me," said Carl Cross. "I used to do things for her. And the worst thing was that I couldn't play with the kids. I used to be the one that would play with them, teach them how to swim."
There are many little adjustments, as well. "I use a stool in the shower," said Cross. "I had to switch to an automatic transmission in my car. I used to do my own yard work, but now I pay someone to do it for me. I have to take my groceries in one bag at a time."
Some advise new amputees to get involved in a support group for the disabled. There are three such groups in the Washington area. I went to a meeting. There is a peculiar comfort in talking to a group of people who share the same experience. I recounted how, in the beginning, I often tried to kick things out of my way, forgetting that my foot was gone. Heads nodded all around the room. "I jumped out of bed and fell on the floor," said an elderly double amputee. "I forgot I didn't have any legs."
"You've got to have support, or you just won't make it," Cross said. "I had people around all day when I was in the hospital. They kept my mind off my troubles. At night, when they left, that's when I did my crying."
Time teaches amputees courage. When you have courage, you can face the specter of future losses -- will it happen again? And you can laugh at the ghosts of lost toes, fingers and ankles.
Stephanie Joyce is an Arlington freelance writer. Since her amputation, she has learned scuba diving, traveled down the Amazon and explored the Andes.
Hospitals with amputee clinics:
Alexandria Hospital, 703-379-3535
D.C. General Hospital, children's clinic, 202-675-5214
Fairfax Hospital, 703-698-3455
Georgetown Hospital, 202-784-3690
George Washington Hospital, 202-994-3437
National Rehabilitation Hospital, 202-877-1000
Veterans Administration Hospital, 202-745-8259
National Rehabilitation Hospital, 202-877-1924.
Fairfax Hospital, 703-698-3626
Kernan Hospital, Baltimore, (Maryland Amputee Association), 301-448-2500, ext. 355