Amputees share their secrets of success
Less than one year ago, Erica Capron was sitting in her wrecked car, looking down at her two completely severed legs. Just nine months later, she was at the Amputee Coalition of America’s Annual Educational Conference & Exposition, walking around on prosthetic legs. She was going forward with life, and she was positively glowing.
Why? What helped this young woman adjust so quickly to the loss of her legs and the problems that accompany such a loss?
Get an Attitude – A Positive One
A positive attitude can certainly help.
Looking back to the accident, Erica, 21, remembers that she was really more worried about her boyfriend who was in the car with her than about herself. She was just happy that he wasn’t dead – and, of course, happy to be alive herself.
Although she spent about three weeks in the hospital, she remained positive, believing that she would ultimately recover.
“I never gave up because I never heard people say that I would never walk again,” Erica says. “If you tell yourself that you’re not going to be able to do something, then chances are that you won’t be able to. It’s crucial to keep yourself motivated.”
One way to stay motivated, she says, is to get involved in a support group, which is what she did early on.
“I learned a lot about taking care of myself, and these people told me that I could call them anytime,” Erica says. “They would visit me, and we would go out to lunches. It was great moral support – something that you can’t find from your other friends.”
Get in Shape
In addition to making sure that she was OK emotionally, Erica realized that she needed to take care of herself physically. She did this mainly through physical therapy to strengthen her core and back and through swimming, which she believes is the best way to exercise the entire body. Although her insurance stopped paying for her physical therapy after a couple of months, she believed that it was so important that she was willing to pay for more of it out-of-pocket.
Get a Great Prosthetist
Erica’s prosthetists’ previous experience with Stella Sieber, another bilateral above-knee amputee, was also important. After fitting Stella with two computerized legs and finding that they were difficult for her to use, her prosthetists fitted her with foreshortened prostheses. Sometimes called “stubbies,” these prostheses are like short stilts without knees. As Stella’s balance, strength and confidence improved, the prosthetists gradually increased her height until she was better able to use the computerized legs.
They decided to follow the same proven method with Erica.
“It was an excellent strategy,” Erica says. “My recovery was exceptionally quick. I was walking on computerized legs comfortably within a few months after the accident, which is pretty awesome.”
Get Back to Living
Today, thanks to her excellent recovery, Erica works two part-time jobs and goes to college. When she attended the Amputee Coalition conference, she became especially interested in legal advocacy for people with disabilities and is now considering pursuing a career in that field.
“I was very lucky to have excellent insurance and everything that I needed after my accident, but until I went to the Amputee Coalition conference, I didn’t realize that not too many people are that fortunate.”
Don’t Listen to the Naysayers
Unfortunately, everyone isn’t surrounded by the same positive environment that Erica had either. When Kevin Trees had a right above-knee amputation last October as the result of a motorcycle accident, he experienced some negativity.
“If I had listened to all the medical professionals say I would never walk again and that I should give up on being a cop, you would be footing my Social Security bill right now!” Kevin says. Fortunately, Kevin didn’t listen. “Doctors make statements based on past observations of the majority of patients,” he explains. “The beauty of it is that we are not machines, and, therefore, we can ‘beat the odds.’”
Decide What You Want
Kevin believes that the ability to move forward has a lot to do with what amputees want for their life. And that, he says, is the first thing they need to figure out “right there in the hospital bed.”
“I can be a burden on everyone around me, let other illnesses increase through my immobility, be depressed and feel sorry for myself, or I can decide to be an example for others,” he says.
Kevin decided that he wanted to return to his career, and he did. And that was no little feat when you realize what he does. He’s a police officer and is training as a helicopter pilot.
Kevin, who is now 37 and is married and has two children, says that new amputees need to evaluate their relationships and put a value on them.
“Your amputation will affect everyone close to you, so continue being responsible,” he says. “My children want a father to swim in the pool, go out to eat, help with homework, etc. My life is not just about me.”
Find Ways to Overcome Physical Problems
As far as the physical aspects of amputation are concerned, Kevin says that balance and fear of falling are two of the biggest problems for leg amputees.
He actually practiced falling and getting back up quickly so that he would be prepared when it really happened. “No,” he says. “It’s not fair that amputees must relearn how to do such basic activities; however, it is imperative that they do so.”
Knowing that amputees use much more energy than others on a daily basis, he realized that getting back in shape was essential. He uses a treadmill and also took up fullcontact karate, which he says helps with his balance and has been the best thing to help him get back in shape.
Don’t Consider Yourself ‘Disabled’
Even when it comes to the physical aspects of his life, however, Kevin realizes the importance of the mind.
“I will never consider myself handicapped or disabled,” Kevin says. “Unless you are old and naturally out of shape due to age, toss the handicap placard and force yourself to walk farther.”
Realize That Everyone Is Different
Though some amputees begin to thrive very quickly, others, for a variety of reasons, go through the recovery process more slowly. Manuel Salazar had very extensive injuries. About three years ago, Manuel was electrocuted by 115,000 volts – twice – when a crane he was on touched a power line. He was burned over 50 percent of his body and had to have all four of his limbs amputated – his arms up to the shoulder and his legs above the knees.
It was a devastating blow to the young man. He was depressed and angry, and medical professionals told him that he’d never walk again.
“I was angry at first,” he says. “I didn’t see why they saved my life. I think the hardest part was dealing with the loss of all four limbs because it’s difficult to do anything like that. It’s hard going from being independent to being totally dependent on somebody else.” Manuel, 25, says it took him close to two years to get over the anger. “The hard part,” he says, “was being self-conscious and worrying about how I looked. I just wanted to hide away. ”
About all he did in the beginning was go to therapy and return home. It wasn’t until after he and his wife divorced that he started getting out more and not caring what other people think.
Go Public When the Time Is Right
When someone first suggested that Manuel participate in a support group, he rejected the idea. After a while, however, he decided to try it and found it very beneficial.
“I’ve never met anybody in the same shoes as me,” he says, “but I’ve met other amputees, and it does help knowing that I’m not the only one.” In addition to the informal help of other amputees, Manuel has also had numerous sessions with a psychologist. In fact, he feels that he needed emotional help more than he did physical help.
The turning point for him, he says, was the realization that there are still a lot of goals he wants to accomplish.
Wanting to be independent is one of the most important things, he says, and it helps to have a large group of people pushing and inspiring you and telling you that you can still do anything you want to, although you might have to do it differently.
Manuel has lived alone since his divorce, although he has 24-hour care available through a nursing service. He has learned to do many things through trial and error, and he can now do things he didn’t think he would ever be able to, such as pull himself up in bed, roll over, and sit in his chair with his prosthesis.
Before he went to the Amputee Coalition conference in June, Manuel had just begun walking on stubbies a little every day.
“I had a lot of inspiration and got a lot of helpful information at the conference,” he says. “Ever since then, I’ve been walking on the stubbies all day, and I’ve hardly been in the wheelchair at all, except when I get tired.” Like Erica, he hopes to go from stubbies to full computerized legs in the future.
Because of his excellent insurance and worker’s compensation, Manuel is also getting ready to get a permanent adaptive van that he can drive independently.
Now that he’s back on the road, he plans to return to school and work, hopefully in some kind of computer field using an adaptive computer.
Like Erica and Kevin, Manuel wants to experience all that life has to offer and is willing to work hard for it. Interestingly, the experience of these three amputees shows that the things people need to succeed as amputees are pretty much the same things that people need to succeed in life in general. It’s more a matter of degree than anything.
Learning Lessons Late in Life
by Rick Bowers
Tom Roberts was 63 in December 1999, when he had to have both of his legs amputated above the knee due to diabetic neuropathy and circulation problems. The following years as a bilateral amputee have taught him several things about living with limb loss that he would like to share with new amputees.
First, he says, it is important to find out what you need and to learn how to require that it gets done.
Unfortunately, Tom didn’t get the physical therapy that he needed right after his amputations, and, as a result, he had balance problems and developed contractures (shortened muscles or tendons).
“It took a long time to learn to be assertive,” Tom says. By the time he did get the physical therapy that he needed – after about four months – it was late and much damage had already been done. Second, it is important for people with disabilities to plan ahead, Tom says. Now that he’s driving again, he must be even more careful. “Forays into unfamiliar territory call for research and planning to ensure such things as accessibility, the availability of parking, and accessible toilets. I now have to plan for things that I simply ‘did’ in the past,” Tom says.
Third, he says, it is important to be able to ask for help when you really need it. In fact, Tom has even developed his own ‘line’ for such situations.
“Numerous lovely people have pumped gas for me,” he says, “after being somewhat startled by my opener: ‘Have you done your good deed today?’”
Writing for the Soul
Getting in touch with your feelings through journaling
by Rick Bowers
When Mike Snyder learned that he needed to have his left leg amputated below the knee as a result of bone cancer in 2005, he started writing e-mail letters to his family and friends. Though the letters were originally intended to let others know about his condition, Mike soon found that writing them was beneficial to him as well. “The letters became a therapeutic outlet, allowing me to express my feelings and thoughts about what was happening,” Mike explains. “Writing about my feelings was one of many ways that I got through it.” Mike had, in fact, accidentally stumbled onto a type of therapy called journaling – a technique that has helped many others through similar struggles.
How Does Writing Help?
Charlene J. Whelan, LCSW, MBA, is health educator for the Amputee Coalition (Amputee Coalition) and has been a psychotherapist for 30 years.
“Writing,” she says, “can be especially useful in times of great change in our lives. It helps us create what is sometimes called a ‘transitional space’ – a place that helps us build bridges between one world and the next.”
Freely expressing our feelings and stretching to find the best words to describe the complex nuances of our experience helps us more completely process our struggles, she explains. “Though we are truly alone in our situation, we may, through the act of writing, feel less lonely and more able to help ourselves in ways that no one else can. While it may never be a straight path, this is how we move forward into a new future and begin to make the past part of our history, as opposed to a trauma relived every day.”
For more information about journaling and suggestions on how to get started, see “Caregiver Tips: Journaling” (http://www.amputee-coalition.org/senior_step/journaling.pdf). If you would like a printed copy, please contact the Amputee Coalition.
Tips for Success as an Amputee During the First Year
by Rick Bowers
On February 6, 1989, Chris Bretoi lost his left leg below the knee when he was crushed between two cars.
Eleven years later, Chris told his prosthetist that he wanted to play hockey again. With his prosthetist’s help, by early 2001, he was playing hockey with his friends. Then, by the following fall, he was playing in able-bodied leagues. Since then, he has participated in a variety of able-bodied hockey leagues and inline skating marathons.
“I continually work to push the envelope,” he says.
Now an amputee for 17 years, Chris has had time to consider some of the most important things amputees need to know early on to help guarantee their future success. Following are eight of his suggestions:
1. Maintain your relationships with friends, family and community. They are your support group and are more important now than ever.
2. Find a good prosthetist by conducting interviews and following up with references. Not all prosthetists are created equal.
3. Decide for yourself what your limitations are. There is always someone who says you’ll never do this or you’ll never do that. If you listen to these people, you’ll spend the rest of your life in bed.
4. Find ways to maintain a healthful lifestyle. This includes finding ways to rev up your heart rate for a good cardiovascular workout and eating a healthful diet. (Of course, you should check with your doctor before changing your exercise regimen.)
5. Maintain a consistent weight. This will help reduce changes in the fit of your prosthetic socket.
6. Be vigilant in maintaining a healthy residual limb. Daily hygiene is critical. (For more information about hygiene for people with limb loss, please contact the Amputee Coalition of America.)
7. Work on your core strength and muscle elasticity. Exercise regularly to maintain or strengthen your stomach and back muscles because being an amputee puts extra stress on your lower back. Also, keep your muscles limber through regular stretching.
8. Be patient your first year and try not to be discouraged. It is a huge adjustment.