Unbroken spirits: Spinal injury victims learn to live well

On the morning that his life came crashing down on him, Kirk Hennig, '89, did his usual 20 minutes of calisthenics before heading to his construction job. He was 26 and in prime shape thanks to a routine of weight lifting three times a week, running on the beach at Shilshole, biking, skiing and a physically demanding job as a journeyman pile driver.

Although he had graduated with honors from Washington State University with a bachelor’s degree in business administration, he preferred working with his hands, and had already helped build bridges and docks in the Seattle area, including the I-90 bridge between Bellevue and Mercer Island. He took pride in his work and had energy to spare. A few months earlier, he had bought a fixer-upper house and was excited about his plans to remodel and resell it in a couple of years.

On this day in 1983, Hennig was helping to rehabilitate Pier 91, replacing rotting pilings under the wharf While he and the rest of the crew were preparing to place a new piling, a 3-pound bolt dropped 50 feet from an idle crane and struck him on the top of his head with approximately 1,000 pounds of brute force. His neck was instantly broken.

The bolt crushed Hennig’s sixth cervical vertebra, about even with his Adam’s apple, immediately paralyzing his legs and partially paralyzing his hands. Medics arrived at the scene in about two minutes, and within 20 minutes he was at Harborview Medical Center.

In some ways, Hennig was lucky. His physical conditioning helped him survive the blow, and he had no other complicating injuries. He was able to breathe on his own and never had to use a ventilator, which is common with injuries that occur high on the spinal column.

At Harborview, Hennig was strapped into a striker frame to prevent movement and to hold his spine in traction. Flipped over every few hours, he could only look straight down at the floor or straight up at the ceiling. The resident doctor who came for a frank talk with him a few days after his injury leaned over to look Hennig in the eye when she told him he would never walk again.

“I didn’t believe her,” Hennig remembers. “I thought I’d work hard, lift weights, they’d work on me, and I’d be up and about.”

Five days after the accident, Hennig underwent the first of several surgeries on his neck, grafting bone from his hip and pelvis to repair the structure. The damaged nerves, however, were another matter.

After two and a half weeks, Hennig transferred to the rehabilitation medicine unit at UW Medical Center, where he spent seven months learning to adapt to his new life. But he hadn’t fully accepted it.

“I was puzzled when I was first injured because I worked in construction, and when we ‘rehabilitated’ a project it was better than when it was built,” he says. Although he was grateful that the medical team had saved his life, he didn’t understand why they couldn’t mend his broken body. “I thought, ‘Don’t these guys get it? This is rehabilitation. They’re supposed to fix me.’ But I was the one who didn’t get it. That’s not what the intent is of that department or what they’re capable of—nor anyone in the world just yet.”

Roughly 11,000 people in the United States endure spinal cord injuries each year. Typically, they are white men in their late 20s to mid-30s, and almost half the injuries result from vehicle crashes. The life expectancy of a 20-year-old who survives the first 24 hours after a spinal cord injury and suffers paraplegia (paralysis of the legs) is 45.3 more years—about 13 years less than the general population. A 20-year-old whose upper cervical injuries result in tetraplegia (paralysis of the legs and arms) is expected to live an additional 35.9 years. A 20-year-old who is ventilator dependent at any level of injury is expected to live another 16.4 years.

Spinal cord injuries received national attention in 1995, when actor Christopher Reeve was thrown from a horse, paralyzing him from the neck down. He built a foundation to raise awareness and funding for research on spinal cord injury in pursuit of a cure. He died in October 2004.

Curtis Williams watches the UW football team warm up for the 2001 Rose Bowl. Williams died in 2002.

Many UW alumni are also familiar with Curtis Williams, who was a safety on the UW football team in 2000. During a game against Stanford, he sustained damage to his first and second vertebrae, paralyzing him from the neck down and requiring a ventilator for him to breathe. He died on May 6, 2002.

No one ever thinks they will be severely disabled. There’s even a slang name for people who haven’t yet suffered an affliction—”temporarily abled bodies,” or TABs. “I always thought, working construction, that I’d probably either break a leg or a finger, or else die in an accident. I never thought I’d become paralyzed,” Hennig says. “I didn’t see that one coming.”

Most who receive a debilitating injury know very little about how to adapt to their changed needs. For the estimated 250,000 people in the United States living with spinal cord injuries, how they adjust hinges largely on the resources available to them. Through the efforts of Professor Diana Cardenas, ’01, chief of service of the Department of Rehabilitation Medicine at the UW Medical Center, many people with spinal cord injuries are learning more about living well. Cardenas has been Hennig’s doctor since he was in rehabilitation.

The most refreshing thing about Cardenas is that she treats patients with respect, Hennig says. She has always been open and tolerant of alternative ideas, such as acupuncture, vitamins and visualization, treating him as someone who has a role in his own treatment—an attitude that Hennig doesn’t find with all doctors. She never presumed to dictate what choices he should make, but was willing to give him information and learn from his experience. “It’s a dialogue, not a diatribe,” he says.

Although modest about her accomplishments, Cardenas is recognized as a leader in spinal cord research and rehabilitation medicine. She is rated one of America’s best by Castle Connolly’s America’s Top Doctors and is one of only a handful of members in her field elected to the Institute of Medicine, a branch of the National Academy of Sciences. Since 1990, she has directed the Department of Rehabilitation Medicine, which this year was named the third best in the country by U.S. News & World Report.

Besides her work as a physician and a teacher, Cardenas has done extensive research on pain treatment and prevention of urinary tract infections in victims of spinal cord injuries. She is also project director for the Northwest Regional Spinal Cord Injury System, one of 16 model spinal cord injury centers funded by the U.S. Department of Education. The system pools information and resources to provide specialized care to people with spinal cord injuries.

A spinal cord injury is a life-altering event, and all patients face an initial sense of loss and grief, Cardenas explains. “Everybody [with a spinal cord injury] has some degree of loss of control,” she says. “Dealing with that loss can be a struggle for some people. For others, it’s just a bump in the road. Not everybody gets horribly depressed.

“Loss of movement is a key issue for a patient, of course, but then there are issues with loss of sensation, loss of normal bladder function, bowel function and sexual function,” Cardenas explains. “Usually the biggest challenge is pain where you don’t have feeling, pain that occurs from the nerve, from damage to the spinal cord itself. It’s a very difficult problem to treat.”

With a 1969 bachelor’s degree from the University of Texas-Austin and a 1973 medical degree from University of Texas Southwestern Medical School in Dallas, Cardenas came to the UW to complete her internship and residency in physical medicine and rehabilitation medicine. She joined the UW faculty in 1981 and in 2001 earned a master’s in health administration.

She became interested in spinal cord injuries on the rehab floor. “I found caring for the patients to be very rewarding,” she says. “They were very inquisitive, had a lot of questions and I found them to be challenging patients to work with when I was a trainee.”

Life in the rehab center, Hennig says, helped prepare him for life in the real world. “I left there with the ability to do my own wheelchair transfers and drive and do some personal care,” he says. The relationships he built with the staff gave him a resource for information, something not as readily available to patients in recent years. “Today the average stay is much shorter, maybe three months at most,” he says. “People don’t leave the hospital with the same level of competency that I did.” This abbreviated time in rehabilitation leaves gaps in what people with spinal cord injuries know about how to live with their condition.

Cardenas implemented two programs powered by volunteers specifically to help improve the lives of people with spinal cord injuries. In the late 1980s, she founded the Spinal Cord Injury Forum, where injured people learn about the latest research, equipment to help their mobility and ways to live a satisfying life. More recently she started a program that matches new patients with peers who have been previously injured.

The forum sessions get down to basics. How do you use a catheter while traveling on an airplane? How do you make sure your hotel room will really be accessible when you get to your destination? Where can you find a good swimming program? What are the best ideas for remodeling your house? How do you begin or maintain a romantic relationship? How do you conceive children and parent them?

Sometimes the injured people themselves do presentations or sit on panels, giving personal insight into the subject. “I’ve learned a lot about the spirit people have when they have a disability,” she says. “They go out and kayak and climb mountains and have fun. They tackle certain situations, like parenting or dating. It’s one thing to know about the physiologic and medical aspects, but it’s another for someone to tell you what it was like and how horrible it was—or how easy.”

Hennig is co-chair of the Spinal Cord Injury Consumer Advisory Board, which helps plan the forums and gives the medical center advice from the user’s point of view. This year, on Valentine’s Day, the forum’s topic was sexuality after a spinal cord injury.

“Human sexual response is not totally dependent on having genital sensation or totally dependent on what one thinks of as traditional intercourse,” Cardenas said in a recent UWMC “Health Beat” article. “The brain really is the main sex organ of the body. Research shows that there are blood flow changes and activation in certain parts of the brain when people are engaged in sexual activity, showing that spinal cord injury doesn’t affect that part of the brain at all. A person has many ways to explore sexual satisfaction.”

Procreation is a repeating topic and one that proves the power of personal testimony. “Young folks get hurt; they want to have kids,” Hennig says. Naturally, many couples are interested in information on conception. From a statistical standpoint, the news is especially bleak for men, he says. But through the forum, he’s heard couples say that they were able to have children. “The beauty is that research may show one thing, but practicality may expand upon that and really provide a balance to what may otherwise be a depressing message,” he says. “Those speakers give hope and inspiration.”

More than two decades after his accident, Hennig is active and healthy and has relatively few complications from his injury. He lives in his own home (the house he bought just before his accident and has since remodeled), drives his own car and manages an independent life, with an assistant who comes in the morning to help him.

Six years after the accident, he completed a degree in construction management at the UW. The other students helped him get to his classes, he says, pushing his chair across campus so he wouldn’t be late. Once, when an out-of-order elevator stood between him and an important exam, his fellow students carried him up to the classroom. “I couldn’t have made it without those guys,” Hennig says.

After graduating at the top of his class, and with his previous business administration degree and on-the-job experience, he thought he’d have no problem finding a job. “But what I was forgetting was that construction jobs start early,” he says. It takes him at least three and a half hours to get ready in the morning, so starting a job at 5 a.m. never worked out. He then worked for a time as a construction estimator, with a 9-to-5 schedule. He learned a lot there, but he found that the paralysis in his hands made it hard for him to move the large pieces of paper around, and he couldn’t work as fast as his coworkers. By that time, though, he had begun teaching classes several nights a week at the Associate General Contractors of Washington. He and another teacher developed a series of four continuing education courses for the construction technical skills program and co-taught them. He became the program’s director, which he continued for 11 years before retiring.

These days, Hennig can often be seen at the UW Medical Center, where he serves as a volunteer in many capacities. As someone who’s been there, Hennig helps others see there is life after spinal cord injury.

“I’m grateful for the fact that I’m still making a difference, being involved in the mentoring program, the different committees I’m on,” he says. His attitude comes from growing up on a cattle ranch in the Tri-Cities area, where he worked hard and learned not to complain, he says.

“When people ask me how I managed to cope with the loss,” he says, “my answer is faith in God and the strengths my parents taught me as a child. Regardless of the paralysis, I need to carry on in life. That’s part of why I’m so involved in the volunteer programs at the University—to try to make the system better.”

Beth Luce is a Seattle free-lancer and frequent contributor to Columns.