SCI Forum Reports
Body Image and Wellness - Part 2
February 13, 2001
Five panelists talked about body image before and after their spinal cord injuries. "I was always physically active," said Nick, whose injury at age 16 resulted in incomplete quadriplegia. "I had a pretty nice body - nice muscle definition - just because of the activities I did. I was proud of my body. I felt unstoppable."
When he found out he was paralyzed, he thought, "Okay, I can have a buff upper body. But then I found out I was a quad." He immediately worried people would think he was retarded.
Nick returned to high school after his rehabilitation. "The only other person in a wheelchair was a mess. I didn't want to be associated with that. I went to dances. I tried to make people comfortable by making jokes about disability. I tried always to make it one hundred percent obvious that I had all my mental faculties."
"I also continued to care about what I looked like," Nick said. "My first chair was bright yellow. I used my chair to get in peoples' faces. I wanted to say - I'm in a wheelchair but I can do whatever I want."
Steve had scoliosis as a child. "My body wasn't perfect," he said. He had spine surgery while he was in medical school, and ended up with T2 paraplegia.
"After waking up from the surgery, I felt my body wasn't really me," Steve said. "It was like a statue or a log. It scared me. People looked at me like I was a medical entity. I was angry and upset with the way I looked."
Della, who contracted polio as an infant, says she "didn't pay attention to my body at all until about 15 years ago when I became more disabled. I had to go to a motorized wheelchair and a van."
When Robert was a sophomore in high school, he found out he had scoliosis. "It never really affected me. As I got older, I began to walk everywhere. It was a big part of my life. I was proud of my body. I felt it was one of my greatest assets."
Soon after graduating from high school he got in a car accident. When he woke up in the hospital, he felt a sense of "unrealness," he said. "I've been injured six years and I still wake up with that feeling. I haven't really dealt with the fact that I'm going to be in a wheelchair for the rest of my life."
"I'm not ashamed of it, or embarrassed," Robert added. "But I do hold myself back."
Dave, who has paraplegia, was very active before his injury, "to the point of recklessness," he said. "I always got away with it, until I was thirty." Dave played lots of outdoor sports and team sports. "I had a good body image. I liked my body. It was an integral part of myself."
Waking up five days after his injury, he was shocked by how mangled he was. In addition to paraplegia, his had lost the use of his left arm. He determined to use his new body to adopt an outrageous personality, he said. "My thoughts were, I'm going to be a bad ass in the wheelchair doing wheelies all day long." He still enjoys what he calls his unstoppable, brash, "proud freak" image, but it is tempered by sadness. "Like Robert, I think - this is crazy. How could I be so messed up and be in a wheelchair the rest of my life? So I live this schizophrenic life."
One of the things that helped Steve accept his new body was the way his girlfriend reacted to his paralysis. She saw that "in many ways I was the same guy, I just didn't have the movement," he said. "Her willingness to see me and touch me helped my self-image."
"I've had a lot of acceptance from people," Robert said. He's found that children are especially open and accepting. "They're very direct. Adults are more reserved," he said.
"I see lots of different reactions," Dave said. "Some people, you can see they think I'm mentally handicapped."
He's noticed that people react to how he's feeling about himself. "If I feel down, no one comes near me. Just like everyone else," he said.
"I'm 51," Della said. "Attitudes (toward people with disabilities) have really changed over 50 years." Growing up, people showed her a lot of pity and expected her to be helpless. They would address her parents instead of her. "I don't see that as much anymore."
Nick's situation is unique because of the incompleteness of his SCI. He has leg braces and walks with a limp. "I look less disabled than I really am," he said. "My balance is bad. It takes nothing to push me over."
"How we feel about ourselves determines how people react to us," said Nancy Kenney, PhD, assistant professor in the UW Department of Psychology. "Projecting a positive image can be hard if you don't like the way you look or the way people look at you."
It's hard to overcome people's prejudices about someone in a wheelchair if you're not naturally an outgoing person, Kenney said. One solution is to try pretending you're more confident than you really are. "You can decide who you're going to be and playact," she said.
Breaking the ice or relieving tension by being funny is often very helpful, "but if you feel you have to play the clown, it's hard to maintain all the time," Kenney said.
"Isn't it sad that you have all these wonderful personalities but it's the bodies that count," Della commented. "It's so hard to get past magazine and TV images."
Many panelists have struggled with body weight and muscle loss since their injuries. Steve noticed his stomach getting bigger after his injury, so he tried to firm up by putting electrodes on his abdomen three times a day for a month. "It didn't make any difference, except that it improved my digestion," he said. Then he got an abdominal binder, which helped his trunk posture and made him look a little firmer.
Nick has continued to be physically active since his injury. At first he did a lot of physical therapy and lifting weights. "I got bored working out. So I looked for more fun activities," he said. He started playing golf and ping pong and took Tai Chi for a few years. "Not being physically active makes me more tired. And getting exercise also keeps me strong."
After his SCI, Dave tried swimming and kayaking, "but I wasn't very graceful. I missed that." He recently started handcycling and enjoys the fluid motion. Although it makes him feel really good, he worries that he might damage his shoulder over time.
But Steve, who is a rehabilitation medicine physician, reassured him that "a handbike doesn't load your shoulders like transfers and pushing a wheelchair. It can improve shoulder strength and improve pain. You have to pace yourself and see how you feel."
Cathy Warms, RN, who is conducting research on SCI and exercise for her PhD in the school of nursing, emphasized that not being active can be detrimental to one's overall health. Inactivity can develop into a "cycle of deconditioning," in which the more inactive one is, the harder it is to be active. She encouraged people to "do something that's fun and fits into your current lifestyle. You don't need to do sports unless you want to."
Nick pointed out that "no one's happy with their body - able-bodied or not. Everyone has to come to terms with it on their own."
"Our fear is that people will generalize about people in wheelchairs," Steve said. "Many people with SCI also have TBI (traumatic brain injury). You might feel like the same person but you can't project that to others."
A man from the audience shared his motto: look good, feel good. "If you have nice clothes, people notice," he said. "They will want to talk to you and look past your injuries."
"It's true - people do look at clothes," Kenney said. In addition to eliciting a reaction from other people, "clothes can make you feel different about yourself. You put on sharp looking clothes and you feel better; you project yourself differently."
(See also Body Image and Wellness - Part 1 , which took place on February 6, 2001)