Seeing Decades Beyond Injury
Three former Shepherd Center patients talk about their fulfilling lives 15-plus years following spinal cord injury
James Johnson was discharged from Shepherd Center 15 years ago. But on Monday and Wednesday evenings, August to April, you’ll find him at the hospital, vividly making the point that life with paralysis can be exciting, active and fulfilling.
James practices twice a week as part of Shepherd Center’s national champion quad rugby team. His athletic success and fulfillment reflect statistics showing that people with spinal cord injury (SCI) are living long and productive lives.
Shepherd Center collects such data as part of the national Spinal Cord Injury Model System (SCIMS), which tracks patients who sustain injuries through accidents or violence. Its records show that even 30 years after a catastrophic injury like SCI, which can cause debilitating secondary conditions, former patients report satisfaction with life that might surprise many.
One data collection survey asks, “On a scale of 1 to 7, how much do you agree with the statement, ‘My life is close to ideal?’” The average of 128 former Shepherd Center patients who answered that question was an encouraging "5."
In the past four decades, spinal cord injury treatment has improved dramatically, explains veteran researcher Lesley Hudson, M.A., Shepherd Center’s co-project director of SCIMS. Rehabilitation care professionals have especially improved in the prevention of complications such as urinary tract infections and pressure wounds.
“In the beginning, the point was to keep the patient alive,” Hudson says. “Once we got a handle on how to do that, we had to take a hard look at the quality of the patient’s life. Now, I think we’re much more focused on helping the patient achieve the highest possible quality of life post-injury.”
Hudson recalls the days before the Americans with Disabilities Act was enacted in 1990. At that time, when life expectancy was shorter, employers routinely turned away applicants in wheelchairs.
“Back then, as a 19- or 20-year old person, once you had a spinal cord injury and you looked out to see what was going to happen in the new order of things, you didn’t have too much encouragement,” Hudson says.
Now, people with SCI marry and have children and find jobs, though Hudson wants more done to increase employment opportunities.
Shepherd Center works to prepare patients “so the quality of life they want to achieve remains a possibility for them – and they go for it,” she adds.
The determination to “go for it” is evident in the stories of three former Shepherd patients, all at least 15 years into their journey after injury.
In the media
James Johnson’s Story
Shepherd Center’s quad rugby team is called the “Shepherd Smash” for a reason.
“Full contact is not only allowed, it’s encouraged,” James Johnson says. The rules prohibit body-to-body contact, but chair-to-chair collisions are fierce enough to earn the sport the nickname “Murderball,” the title of a 2005 film about quad rugby.
James, 38, learned about the Smash while undergoing rehabilitation at Shepherd Center in 1998. He had sustained a spinal cord injury at age 23 when he misjudged the depth of a swimming pool and dove in.
Despite losing use of his fingers and tricep muscles, James was determined to use a manual chair so he could play quad rugby.
“I remember it taking me 15 minutes to push from my patient room to the therapy room on the same floor,” he says. But by the end of his 12-week stay in rehabilitation, “it was just another push down the hall.”
James joined the team for fun, but got an education about life.
“When you travel (to tournaments), in the airport, you’ve got a team of six to eight people pushing their regular chairs and their rugby equipment along with their support staff,” James says. He was also inspired by seeing how other people with paralysis accomplished day to day tasks that were simple before his injury.
“Watching a teammate cutting a steak is how I learned to cut steak,” he recalls.
A highlight was winning the 2013 U.S. Quad Rugby Association Division II championship. But that’s just one part of James’ active life.
He sells medical supplies to people with spinal cord injury. Much of his work is done by phone from his home in Chamblee, Ga., but he calls on patients and medical providers in metro Atlanta and Greenville, S.C.
“My favorite part of the job is when I’m meeting the end user,” he says. “The fact that I use the supplies gives me credibility.”
James drives a GMC Sierra pickup truck, converted with a lift that lets him back in his wheelchair and position it so he can drive.
He likes fast cars, too.
“I’ve helped start a foundation trying to help disabled persons get more involved in motorsports,” James says. He is one of six founding members, as well as the main test driver.
And he flies remote-controlled model airplanes that he builds. It’s precise work – “trace this pattern, shrink wrap that” – and he can’t use his fingers.
“What may take someone without a spinal cord injury three weeks, it may take me three months,” he explains. “I love it. It’s a definite sense of accomplishment.”
James’ advice for long-term success?
“The first step is to be happy, to understand that you can participate fully in life with an SCI and be a happy person,” he says.
He wants to stay as healthy as possible so one day he may take advantage of new treatments.
“I don’t have to accept that this is the way it’s going to be forever,” he says, “but I have to acknowledge that this is the way it is today.”
Karen Bibb’s Story
Karen Bibb has a rule: “Make the stuff you have to do easy, so you can get to the fun stuff.”
Not that her job at NASA’s Langley Research Center in Virginia sounds easy.
In more than 20 years as a NASA aerospace engineer, Karen, 47, has worked on flow field simulations and aerodynamic analyses for the space shuttle and re-entry capsules. Now, she is involved with developing the next-generation Orion vehicle.
She is working on a computer model to show how Orion will perform in the atmosphere at both faster-than-sound and subsonic speeds – information that is critical for navigation and safe re-entry.
Off the job, she likes to kayak with her husband and two children. And she does mom stuff, like “hauling around the cookies” for her daughter’s Girl Scouts troop and cheering at her son’s lacrosse games.
“If you’ve got limited energy, you want to spend it doing the fun things,” Karen says. “You don’t want to spend all your energy getting a shower and getting dressed in the morning and that kind of stuff.”
Karen says she became “a relatively average paraplegic” after she sustained a spinal cord injury in a fall from a balcony in 1986. Then, she was starting her third year at Georgia Tech.
Her rehabilitation care at Shepherd Center emphasized right away that “you can live your life,” she recalls.
“You can miss out on your life if everything is focused on rehab, worrying how to do all the basic stuff,” she says. “Instead, we did Adventure Camp and went water skiing.”
Karen returned to school in January 1987 and later earned a bachelor’s and a master’s degree in engineering from Georgia Tech.
At Tech, she dated her now-husband, Carl Rogers. Fifteen years ago, she delivered their son through natural childbirth. They later adopted a daughter, who now is 9 years old.
Carl decided to be a stay-at-home dad.
“Having that kind of support is what makes it all possible,” Karen says.
Their home was built to be accessible for her. They take an engineering approach to solving problems such as how to get Karen into a kayak on the Rappahannock River.
“We got an inexpensive truck-mounted engine hoist from the hardware store,” she says. Mounted on the back of a dock, it can swing her in a net to the kayak, allowing the whole family to enjoy the water.
“I can be in the kayak while they’re playing around in the river,” she says.
Like anyone her age, Karen is starting to feel some effects of aging. She wants to work on weight loss and to learn more about what she can expect in the coming years.
“I think aging and SCI is going to be a challenge,” she says.
But she still pushes herself. She was attracted to computer modeling partially because she felt she couldn’t do much aerodynamic work in wind tunnels. But she recently found a way to get her chair into one.
That’s helpful so she can understand the intricate details of how a model is mounted in the tunnel. Plus, she adds, “It’s kind of neat!”
Jamie Goodwin’s Story
Jamie Goodwin was riding in the back of a pickup truck, part of a group of high school students going out to get pizza in 1993. There was a collision on Highway 41 in Kennesaw, Ga.
A spinal cord injury left her unable to walk and without the use of her trunk and stomach muscles.
“I was a cheerleader,” Jamie says. “I thought the whole world had ended. I didn’t think anybody would love me, marry me.”
But soon after her accident and rehabilitation at Shepherd Center, she returned to her school’s cheerleading squad. She began dating the man she would one day marry. Later, Jamie graduated from Kennesaw State University, became a middle-school teacher and then a stay-at-home mother to her three sons in Canton, Ga.
“God had big plans for me,” she says. “If I had the chance to go back and change it, I wouldn’t because I am very blessed.”
Now, she is looking ahead.
“The next 20 years are going to happen real fast, too. What am I going to do with it?” Jamie asks.
The first important step is losing weight, she says.
She was underweight while a 17-year-old patient at Shepherd Center. But over time, Jamie gained more than 100 pounds.
In 2012, she auditioned for the TV reality show “The Biggest Loser.” She made it to an audition round in Los Angeles and also was a finalist for “Extreme Makeover Weight Loss Edition.”
Jamie was disappointed to miss out on both shows, but sharing the experience on Facebook led to an offer of help from a personal trainer.
Since June 2013, “I have been working very, very, very hard to lose weight,” Jamie says. “I work out three to four times a week. I’m watching my calories.”
As of fall 2013, Jamie had dropped 32 pounds. She wants to reach her high school weight by her 20-year class reunion this spring.
“I started a Facebook page about my journey,” she says. “I posted a ‘before’ picture of myself, which was very humbling.” But people responded positively.
“I have more than 1,000 followers,” she says. “I have people all over the country rooting me on, holding me accountable.”
You also can find Jamie’s progress reports at Facebook.com/wheelinweightloss and on Instagram at @wheelinweightloss. She also blogs at http://jamiegoodwin.wordpress.com.
“I want to motivate others to lose weight, especially people in wheelchairs,” she says. “Most of the people I’ve met on social media will ask me, ‘What are you doing?’ I post a lot of pictures to show people. We’re all trying to figure out how to do this.”
For Jamie, a workout often means dropping to the floor and pushing across. With the help of a neighbor, she says: “I’ll turn over and lift weights. I’ll do push-ups.”
She pushes in her chair up a hill or four miles in a park. She wants to push in a 5K race and, eventually, in a marathon.
Jamie’s trainer provided a diet plan and a question: “Why do you want to lose weight?” Jamie posted her list of answers on her bathroom mirror. Some of them are about her children.
“I want to see them graduate,” she says. “I want to be a grandmother one day.”
Written by David Simpson
Photography by Louie Favorite, Pamela Doughty and Sandie Gibbs
Shepherd Center provides world-class clinical care, research, and family support for people experiencing the most complex conditions, including spinal cord and brain injuries, multi-trauma, traumatic amputations, stroke, multiple sclerosis, and pain. An elite center recognized as both Spinal Cord Injury and Traumatic Brain Injury Model Systems, Shepherd Center is ranked by U.S. News as one of the nation’s top hospitals for rehabilitation. Shepherd Center treats thousands of patients annually with unmatched expertise and unwavering compassion to help them begin again.