Real backbone
Victims of spinal injuries push for prevention and acceptance
By Leslie Goldman
Special to the Tribune

January 13, 2002

Nobody can accuse Patrick Kronenwetter, a 47-year-old attorney in Glen Ellyn and a quadriplegic, of not having a sense of humor. When asked about the events that led to his spinal cord injury and subsequent re-entry into a world as a person with a disability, he's likely to wisecrack "Well, I guess you could say I kind of fell into it."

In 1989, while trimming a tree outside his home, Kronenwetter slipped and fell from his ladder, landing on his head. During his month in intensive care, he had no use of his legs and only limited use of his upper extremities (the latter was later recovered). Kronenwetter now serves on the Spinal Cord Injury Association of Illinois Board of Directors, participating in injury-prevention programs and acting as an informal legislative liaison.

Rayfie Burr was 26 when he was shot twice in the back of the head and once in the chest while embroiled in a drug dispute on Chicago's West Side. Doctors told him he would likely never walk again. Partially paralyzed ("My right side kind of sticks to me sometimes," he described,) Burr now uses a wheelchair about 75 percent of the time. It is in this wheelchair that he participates in "In My Shoes," a violence-prevention and spinal-cord awareness initiative of Schwab Rehabilitation Hospital, sharing his story with at-risk youth.

Kronenwetter and Burr don't know each other. They were raised in vastly different cultural backgrounds and currently reside on opposite sides of Chicago. But as men with spinal cord injuries, Kronenwetter and Burr coexist in the same community, joined by men such as Christopher Reeve; Jim Mullen, the former Chicago police officer who was shot in the face in 1996 and is now paralyzed from the neck down; Rob Komosa, the Palatine teenager who lost all feeling and movement below his chin when three teammates tackled him during a 1999 high school football scrimmage; and Travis Roy, the Boston University hockey player who shattered his fourth cervical vertebra during the first 11 seconds of his first college hockey game in 1995, leaving him with no feeling below his shoulders.

About 250,000 Americans live with a spinal cord injury, according to the National Spinal Cord Injury Statistical Center at the University of Alabama. Of those, the vast majority-82 percent-are male, and more than half are injured between the ages of 16 and 30. Most incur their injury in one of four ways: vehicular accident (37 percent); an act of violence (28 percent); a fall (21 percent); or a sporting activity (6 percent.)

Various theories exist as to the high proportion of males affected. According to Mercedes Rauen, executive director of the Spinal Cord Injury Association of Illinois, men may be at increased risk for a spinal cord injury because of their involvement in particular sports or in inherently riskier jobs such as construction work. Men also tend to be greater risk-takers, she said. But regardless of the gender of the individual with a spinal cord injury, Rauen said, it's difficult to be prepared for such split-second devastation.

"We know we're going to die, but we're not programmed to think about disability," she said. "This is not an illness. This is an instantaneous change."

The belief that the spinal cord is severed in all spinal cord injuries is a common misperception, explained Dr. David Chen, director of the Spinal Cord Injury Program at the Rehabilitation Institute of Chicago. Most often, the cord, protected by 33 bones extending from head to tailbone, suffers a contusion, similar to a bruise on the arm. When an individual falls, is shot or thrown from a car, the energy is translated through the body to the spine. Should that force prove too strong, Chen said, the bones in the spine can break, squeezing the spinal cord and bruising the nerves. Resulting nerve damage can rob individuals of sensation and render specific body parts powerless.

Rehabilitation can be as much psychological as it is physical. The chaotic nature of the acute recovery phase, Chen said, can make acclimation extremely challenging. It is in rehabilitation, he said, where patients usually start to wonder aloud, "What does this mean for my future, my ability to return to work, my family?"

Indeed, Kronenwetter said, it was not until he had relearned the essential functions of daily living-eating, bathing, dressing-that the magnitude of his injury really sank in. "My first concern was whether I would be able to return to work and support my wife," he remembered (he and his wife later adopted a son, now 7.) Then, in the midst of simultaneous courses of taxing physical, occupational and psychological therapy, Kronenwetter noticed himself following a prevalent pattern of initial denial.

"Like many people, even most people, with a severe spinal cord injury, you sort of say 'OK, I'm going to overcome this and in six months I'll be fine,' " he said. But he later came "to the conclusion that I could still lead a fulfilling life even if I didn't return to my prior physical states."

It is with this sort of pragmatic optimism that Kronenwetter said his organization pursues spinal cord injury advocacy, peer support and prevention. "Our organization is about not focusing on raising money to find cures," he said. "What we really focus on is, life must go on. We are helping these people to get on with their lives."

Burr has chosen to get on with his life by escaping the world of gangs and drugs and becoming a peer speaker with "In My Shoes." Most often, children ask him, "Are you ever going to walk again?" "We let them know there are no stupid questions," Burr said.

According to Kristin Vertiz, manager of extended services at Schwab, "In My Shoes" was conceptualized in 1994 in response to a spike in Chicago-area shootings-and consequent traumatic spinal cord and brain injuries. Vertiz recruits individuals with such injuries and trains them to lead presentations and workshops with high-risk students.

"Most kids think they're going to end up dead or in jail, not that they might be in a wheelchair for the rest of their life," Vertiz explained. Schwab also invites students to the hospital for disability-awareness workshops, in which they rotate through wheelchair stations, have numbing agents put on their lips before eating pureed foods, or are challenged to don distortion goggles and tap a message into a communication board. Vertiz and colleagues hope the impact of such activities will provide students with incentive to steer clear of gangs and to treat people with spinal cord injuries with respect.

Preventatively speaking, the Spinal Cord Injury Association of Illinois sponsors the Think First program in schools, teaching safety in diving, water sports, hockey, football, even proper use of seatbelts.

The take-home pearl that the spinal cord injury community is eager to disseminate: "There is a significant population of persons who have been affected by a very serious event in their lives," Kronenwetter said, "but who are trying to function and prosper just like everybody else. They may need some additional help, but they really don't need or want any more pity."

As for female victims . . .

With men accounting for 82 percent of spinal cord injuries, that leaves room for just a small number of women living with the disability. Visits to even the most respected spinal cord injury Web sites yield few, if any, links specifically for women, and those that do focus primarily on issues of pregnancy.

For example, a growing fetus can place undue pressure on the lungs of a woman with a spinal cord injury, decreasing her lung capacity and increasing her susceptibility to pneumonia. The added weight of a baby also complicates bladder and bowel function and can cause or worsen pressure sores for a wheelchair-dependent woman.

But sexuality is a monumental issue for women living with spinal cord injuries. Margaret McDonnell, a 35-year-old administrative assistant and quadriplegic who works at the Spinal Cord Injury Association of Illinois in LaGrange, said a major task has been breaking down preconceived notions about women in wheelchairs.

"You're no different than the person you were before the injury," McDonnell said, "but it's so difficult getting a man to see beyond that wheelchair, to see you as a viable sexual being."

McDonnell, who was injured at age 14 in a back-yard diving accident, said women with spinal cord injuries are few, most likely because women tend to take fewer risks and to play fewer contact sports. In terms of role models, "Christopher Reeve has been marvelous, but you don't see many female advocates."

-- L.G.


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