Getting used to a new hairdo, eyeglasses or a pair of shoes can be difficult.
But imagine not having hair because your scalp has been burned beyond repair, not needing glasses because suddenly you can no longer see, or having no real need for shoes because you`ll never walk again.
While you`re imagining those tragedies, Robert Ness is coping with one of them.
It has been almost two years since the car crash that left Ness a quadriplegic and a time of concentrated rebuilding-emotionally and physically. ”My first thought was, `Thank God I`m not dead.` My second thought was
`My God, I`m 22 years old and I`ll never walk again,” said Ness, 23, an outpatient at the Rehabilitation Institute of Chicago. The institute serves more than 4,000 victims of debilitating injury and illness each year.
”At first you think that this is the kind of stuff headlines are made of. This is the kind of thing that happens to the other guy. You think it would never happen to anyone in your family and especially not to you,” said Ness, who lives in Glenview.
”It takes a while to get used to the fact that you`ll forever have to wheel yourself around and look up to people, but you do get used to it, and you start to be thankful that you are still able to do that much.”
Ness has what is called C-6 quadriplegia, which means that his spine is damaged at the sixth cervical vertebra and he still has use of his body from about midchest up. He has little dexterity in his fingers. Still, he has learned to change the tape in his cassette tape player, comb his hair, brush his teeth and write with a pen by weaving it between his fingers. He wears thick leather gloves and wheels himself by pushing with his palms.
That`s a long way from being bedridden, barely able to speak and dependent on others for the most minor chores. Such was Ness` condition when he came to the institute from a hospital three months after the January, 1987, accident.
Ness attributed his newfound abilities to a lifelong positive outlook and programs at the institute, where he has learned to address the melange of anger, guilt and sadness that is a byproduct of debilitating injury. He has learned to rechannel his energy and has substantially increased his mobility. After getting his driver`s license, he bought a converted van which he drives with hand controls and which ”gives me a lot more independence,” he said.
Ness also went skiing in December, using a snow sit ski, a molded fiberglass half shell with a fabric snow skirt that zips up around the waist. It has grooves and metal edges on the bottom, and control and turning are done by arm movements and shifting weight.
”I had a blast,” he said. ”It was good to get back on the mountain and have a good time in the snow again.”
”Everyone responds differently to traumatic experiences like this,”
said Frank Mordini, a staff psychologist at the institute. ”Psychological rehabilitation is crucial because it sets the pace for physical recovery. A person has to be mentally prepared to accept the challenge of living a fulfilling life, despite (his or her) injury.”
There is no magic formula, Mordini said. Psychologists tailor their approaches to fit the patient. A lot depends on personality. If a patient was optimistic and self-confident to begin with, then he or she will do well.
”We act in a supportive role,” he explained. ”We help patients understand what they`re feeling and let them know that it`s okay to feel angry. In fact, some anger is good; it feeds determination. But we try to get patients to the point where they hold on to their hopes while having realistic expectations.”
Crucial to the process of emotional healing is talking frequently about the accident, which lessens the intensity of emotions attached to it, and deciding to focus on abilities rather than disabilities, Mordini said.
One of the most important components of a successful rehabilitation program is a supportive family, Mordini said. Patients may take out their anger on family members, so therapists work with family members on their reactions to that anger.
”You can`t go around telling the person, `Well, until you stop being so mean, I just won`t come around,` ” Mordini said. ”That`s what they expect. You`ve got to show them that no matter what, you`re going to accept them. Once they realize that their family is on their side, they become more confident about taking on the rest of society.”
Most people suffer a powerful blow to self-esteem after traumatic injury, Mordini said. They often compare themselves to ”normal” people. Some patients isolate themselves. Others deny the longevity of their disabilities. But practically everyone suffers the emotional see-saw between depression and determination. Initially, they are bitter and insecure, in general and because they can`t do many things.
That`s where physical and occupational therapy come in. A team is assigned to everyone admitted to the institute; it includes physical, occupational and, when necessary, speech pathologists who work with patients daily.
”I was so excited when I found out that I still would be able to do things for myself,” said Rebecca Rossof, who suffered spinal cord injury and partial amputation of two fingers after she survived the crash of a private plane six months ago. Rossof, who walks with a cane, sustained multiple fractures to the vertebrae in her neck and pelvis. Because of that, she has weakness in one leg and will have to avoid rigorous activity the rest of her life.
”The big difference between the hospital and the rehab center is that in rehab you`re encouraged and taught to do as much as you can for yourself as soon as possible.
”When you go through something like this, your trust in the world is really shaken, and yet we have to trust people to help us make it through,”
said Rossof, a Chicago resident who has two young children.
”Everyone at the center has a miraculous story to tell. Therapists here help us focus less on the accidents and more on trying to make simple tasks not so hard,” she said.
Rossof, an in-patient at the institute in August and September, attended four hours of physical therapy classes a day, which helped her to strengthen her upper body. Weights were strapped to her arms and legs and she did lifting exercises. Other patients may be opening clothes pins to improve finger dexterity.
She also attended a daily 40-minute class where she strengthened her lower body, also with weights. From there, she would go to a daily 40-minute walking class.
Rossof spent 2 1/2 months as an out-patient and now does exercises daily at home. She has returned to work-she teaches high school chemistry and physical science and works a full day.
An array of adaptive devices is available through the institute to the physically impaired, ranging from simple splints and casts to elaborate electronic equipment. A popular item is the environmental control system, a hand-held remote control device (operated by switch or pushbutton) that operates numerous household appliances. The device is so named because it helps patients function more easily when they`re alone in their home environment. Another is a sip-and-puff device, which can be programmed to activate a wheelchair, dial and answer a phone, turn the pages of a book and operate up to 16 appliances. The machine works when a patient inhales and exhales through a tube hooked up to an electronic device that codes and activates tasks according to the number of sips and puffs given.
Occupational therapy, which focuses on daily living skills, has enabled Rossof to dress and feed herself. She has learned to use special tubing that slips onto silverware to help her grip it.
The institute`s occupational therapy department is equipped with a model apartment that gives patients hands-on experience at such tasks as cooking, showering and washing clothes.
A similar program is offered by the physical therapy department of La Grange Memorial Hospital. It has a mock roadway called ”Easy Street” that is paved with various surfaces-wood, tile, concrete and carpeting-and steps so that patients on crutches and in wheelchairs can practice maneuvering outside the hospital.
Easy Street also features a bank, where patients practice their writing and speaking skills; a cafe, where they practice keeping their balance on bar stools; and a kitchen, where they learn to prepare meals.
Other tools used by the institute and other rehabilitation centers are dance, art and pet therapy. These kinds of therapy help keep patients focused on the many things they still can enjoy despite their illnesses, said Julie Sheely, an occupational therapist at the institute. The average stay in a rehabilitation center is about three months, Sheely said. Patients can use the facilty on an outpatient basis to strengthen and supplement their skills for as long as they wish.
”Probably one of the biggest fears patients have is that their family and friends will not accept them,” said Moira Aronson-Brown, a speech pathologist at Marianjoy Rehabilitation Center, Wheaton. ”We teach patients the importance of learning to adapt their skills to fit the world as it is now, rather than hoping that the world will adapt to their disabilities.”
The true test of rehabilitation comes after discharge from an inpatient program, said Ness, who since his accident has obtained a bachelor`s degree in communications at Augustana College in Rock Island, Ill., and has become engaged to his girlfriend of more than four years.
”Not being able to function normally is a very humbling experience,”
Ness said. ”If rehab therapy is allowed to work to the fullest, we learn a lot about ourselves. We learn to appreciate little things like cool breezes and sunlight. We learn not to take things for granted, and I think we become a lot stronger than we ever were.”
