Taking a Stand
Five years ago, Chris Leeuw left Indiana as a paralyzed young man with a dim prognosis. He came back walking —and asking a lot of questions: Why didn’t his home state offer the extended treatment that rescued him from a wheelchair-bound life? And could he step up and change the system himself?
He wasn’t being a daredevil. His choice wasn’t some expression of defiant, idealistic independence or gratuitous death-cheating. Chris Leeuw was on a kayak trip with friends near Edinburgh in August 2010 when he decided to jump off an abandoned truss bridge—a high bridge, sure, 50 or so feet, but he knew the water was deep. He was 28. People do that sort of thing when they’re 28.
The problem was the guy next to him, who climbed up to make the leap as well. Leeuw didn’t know the guy, though he didn’t mind the company. They jumped at the same time, but Leeuw—at 6´2˝and 200 pounds—fell faster. The other guy drifted over toward Leeuw while falling; witnesses later said it looked as though Leeuw opened up a hole in the water for him. The damage from their collision was instant. Leeuw heard nothing, felt nothing. It’s not like you sense a crack or hear a snap when your spinal cord is hurt. He was fortunate to have air in his lungs at the time, so his motionless body rose to the surface by itself. But the ascent happened slowly, too slowly, and he reached that point when you’re underwater for too long and you can’t hold your breath anymore and your lungs need to draw in. Luckily, the guy who landed on top of Leeuw reached him and dragged him out of the river to a little beach, where Leeuw’s brain caught up with his instincts and started to churn. He thought of all those NO DIVING signs with the lightning bolts through the words from his days as a lifeguard. What did I just do to myself?
There were flickers of feeling then, but just light pins and needles, ghosts. Somebody was tapping his leg. He could feel the touch, some muted spark of sensation fighting its way to his brain. His foot felt detached and about a mile away. Everything was scrambled.
In the weeks to come, doctors were careful to avoid saying he wouldn’t walk again. Instead, they were more vigilant about painting a practical picture. Leeuw felt nothing from the neck down. My life’s over, he thought. Will I ever get anything back?
Leeuw never lost consciousness on the beach, never passed out while being airlifted, never blinked his eyes awake to the faces of doctors and the sounds of mechanized life support. The spinal-cord injury affected his nervous system and nearly every part of his body, but not his brain; though he couldn’t move, he was completely lucid. “The moment it really hit me was when I was being backboarded through the woods looking up at the trees,” he says. “I knew it was bad. I knew.”
It was bad. The accident shattered his fourth and fifth cervical vertebrae; doctors fused his second through sixth. There would be no more surgeries, but a storm of complications arises quickly when the central nervous system is abruptly knocked offline. The damage was so extensive that Leeuw’s first job was to re-learn how to breathe. The prognosis from there wasn’t promising. He had a C4 spinal-cord injury (the worst kind), and doctors focused on preparing him for life as a quadriplegic. “They never told me I’d never get anything back,” he says. “But it was always, It’s not good. We’ll see what happens in therapy. We’ll see what happens.”
Recovering from a spinal-cord injury requires near-constant work. But Leeuw’s insurance covered as much as it would have for an ACL tear.
Leeuw spent a week at IU Health Methodist Hospital before being transferred to the Rehabilitation Hospital of Indiana to begin the process of learning to adapt to his injury. But he wasn’t ready. “I had a urinary tract infection, C. diff infection, a blood clot in my lungs, and MRSA, all at the same time,” he says. “I couldn’t even participate in therapy.” About a week into his stay, he blacked out during a shower and was rushed back to Methodist with extremely low blood pressure. “When you get hurt like that, you don’t feel sick,” he says. “But all this stuff is wreaking havoc on your body. It doesn’t know how to comprehend the fact that it doesn’t have any communication with its lower half.” Teams of people moved him every two hours to prevent bedsores and muscle contractions, showered him, fed him, catheterized him. Family and friends got crash courses in quadriplegic care. His mother, Monice, started an online journal to keep friends updated.
Yet hope flickered. One day, Leeuw’s thigh muscle flexed. Then he moved his ankle slightly. Eight weeks out from the injury, he could wiggle fingers. But each time something came back, each time he unlocked a new body part, he thought of it as a milestone, not a promise. “Everyone would get excited, and I would, too,” he says. “But it was so small. Each time, you think, Is that gonna be it?”
Before Leeuw could find out how much his body could recover, his insurance ran dry. His Anthem policy covered four weeks of therapy at RHI, and he appealed by showing incremental progress to get an extra four weeks. But then time was up. His insurance would cover a $50,000 sip-and-puff wheelchair and 30 outpatient rehab appointments, but not more hospital therapy.
Leeuw made a bold choice. Instead of going to live with his parents with that chair, he checked in to a nursing home where he could continue regular therapy. But he didn’t know what to expect. The day he left the specialized environment at RHI was the worst of his life. The clinic had been a source of hope; as long as he was there, he believed he would be okay. For the first time since the injury, Leeuw cried. What happens now?
To imagine what it’s like to live with paralysis, think of a beaver dam.
The river, that’s your spinal cord. Your brain is trying to ship signals downstream, but there’s a block. The dam—the injury—is stopping some of the water, maybe even most of the water, but not all of the water. But dams are maddeningly unpredictable; there’s no logic to them, no structural integrity. Some may never change again. But some might pop a little here and there, let more trickles through. And those trickles, those chances, were what drove Leeuw after he left RHI. Because in addition to fighting to reactivate his body, struggling for a twitch here and a bend there, he had to hang on to those trickles. He had to believe he could blow up the dam.
“I became borderline obsessed with what was happening to my body,” Leeuw says over lunch in Fountain Square. He’s 32 now, with clear eyes and sharp features; he used to work as a TV reporter in Fort Wayne, and he looks not unlike Jimmy Fallon. At the time of the accident, he was working as Scott Jones’s executive assistant at ChaCha. “Before that, I was just like everyone else: You think, Spinal-cord injury, party’s over, you’re paralyzed. I became enthralled with figuring out my chances for recovery. Every time I got a little bit back, a toe or a finger, I would think, Well, what does that mean?”
It’s a nearly impossible question to answer. There is no linear progression after a traumatic spinal-cord injury. No poster, no brochure, no interactive graphic about what to expect or when, no measure by which to be heartened or disappointed. Recovery is so individualized that the term “incomplete” injury is used to describe literally any patient without an irreparably severed spine—which means that someone who might eventually walk again, like Leeuw, falls under the same broad umbrella as someone who will never regain more than a flutter of sensation in the toes.
There are more people in the U.S. living with a spinal-cord injury than one might think. A study from the University of Alabama at Birmingham pegs the number at 276,000. There are around 12,500 new cases a year, and about two-thirds of those are incompletes. Falls, like Leeuw’s, account for 30 percent.
For most sufferers, that first year or two is crucial to recovery. That’s when patients have the best chance of reacquiring feelings, known medically as “neuroplastic gain.” Care involves time—repetition, repetition, repetition; retraining, retraining, retraining. Ryan Cardinal, program manager for neurorehabilitation and robotics at the IU Health Neuroscience Center, likens the process to shooting free throws. “If you go out in the backyard and shoot 100, you’ll get better. If you shoot 10,000, you’re gonna get really good.” But during that time, there will be “sweet spots,” says Larissa Swan, RHI’s executive director of therapy, when a patient’s body will respond the best. When and why that window opens can vary with each incomplete injury.
Step by Step
How Chris Leeuw proved that paralysis may not be permanent.
On top of that uncertainty, treatments and technology are always evolving. “We’ve known neuroplasticity exists for quite a while,” says Cardinal. “But we didn’t quite understand the mechanisms behind it, so when a patient came in following an injury, stroke, or TBI [traumatic brain injury], you’d do what you could to improve motor control, make the patient stronger, give them a better range of motion. But at the same time, you’re saying, ‘I’m going to give you the tools and strategies to function the best you can with these impairments.’ We still do that. But we’re accepting that we have a lot more ability to impact more meaningful, lasting change.”
The best therapy also includes psychological and holistic components. Depression rates are very high; some studies put them around 90 percent. “Our goal is to get people to successfully live,” Swan says. “Not going through the day, but going to school, watching their kids, going to get ice cream. That’s life.”
Still, for maximum recovery, you have to always be sending signals down that river, trying to get over or through that dam. Progress requires near-constant work. Leeuw’s insurance policy, in his opinion, didn’t cover near-constant work. In fact, it covered about as much as it would have for an ACL tear.
So if he wanted to keep sending signals down the river, he could either pay $400 an hour for private therapy—$3,200 a month for typical twice-a-week appointments, but a mind-boggling $48,000 for a few hours of daily therapy—or he could move to a sub-acute nursing home on Anthem’s dime. The latter was a spectacularly unconventional choice, one doctors didn’t recommend. But it was the only option that offered continued therapy.
Leeuw moved into the nursing home. The bedside care was “horrendous,” he says. But a therapist who had worked for RHI would treat him for an hour a day, then let him stay in the gym for a few extra hours. Before long, he had not only recovered some bicep function, but was able to stand for a couple of seconds. By the end of his stay, he could walk five or six steps—with a specialized walker, and two people supporting him, but he could walk. It helped, doctors said, that Leeuw was young, active before the injury, and had a supportive family.
He had to appeal to Anthem every two weeks to stay at the nursing home. But after four months, he was back in the same spot he was when he left RHI: out of insurance, out of appeals, and out of traditional options.
As it happened, he was about to encounter a highly nontraditional one.
In 2008, during his time at ChaCha, Leeuw saw a picture of a man carrying the Olympic torch in the office of Maggie Kauer, Scott Jones’s chief of staff at the time. The man was Dale Hull, a doctor in Utah who had been paralyzed in a trampoline accident. Kauer knew Hull and had helped the doctor through his recovery, and eventually he regained enough movement to participate in the 2002 Olympic-torch relay. At the time, the doctor’s resilience struck Leeuw—he didn’t realize someone could recover from paralysis.
Hull’s accomplishment would become life-altering for Leeuw and many others. After Hull’s injury, he spent a few years in a hospital rehab program yet still felt he wasn’t doing enough to maximize recovery. He and his therapist decided to launch Neuroworx—a clinic offering low-cost, extended rehab for spinal-cord injuries—one night after Hull stumbled across that famous Gandhi quote about being the change you want to see in the world. “It was kind of a made-for-TV moment,” he admits.
Leeuw left the nursing home at a crucial moment of his own. He was finally making progress walking and needed therapy more than ever. Kauer reminded him of the Utah doctor with the unorthodox clinic. Without options in Indiana (and with Scott Jones kicking in for the travel expenses), Leeuw and his mother flew to Salt Lake City in February 2011. By the time they arrived, the writing in mom Monice’s online journal glistened: “It feels like a wonderland after the close quarters and bleak hospital living of the past six months. Freedom, fresh air and huge open skies … also a feeling of adventure and new hope.”
Despite the strip-mall digs, Neuroworx’s approach was sophisticated. Orthopaedic-focused physical therapy clinics are usually high-volume and low-acuity (the ratio of caregivers to patients), Hull says. Instead, Neuroworx, a neurologic-focused alternative, was low-volume, high-acuity, so “everybody’s here for an extended time. They can come to a place that says you can work as hard as you want to.”
The center secured housing for Leeuw and his mother, and he worked three or four hours every day, as hard as his body would allow. He paid about $100 per visit, a little more on days he used aqua therapy or the body weight–supported treadmill. Why isn’t every rehab facility doing this kind of stuff? he wondered.
Altering the system takes “an outside entity willing to sacrifice insurance appointments and find a way to offset those costs.”
Hull has an answer for that. “It’s a terrible business model,” he says, with a laugh, “but a superior people model.” In addition to seeking grants, Neuroworx raises money through such traditional models as donations and charity events to fund more rehab time than insurance will cover. “That doesn’t mean everybody walks. We don’t claim to be miracle-workers,” Hull says. “If we make spirits walk, we feel like we’ve done a wonderful thing. For a lot of people, even an incremental improvement in independence and function changes their world.”
Neuroworx altered the entire dynamic of his recovery, Leeuw says. The activity-based workouts focused on weaknesses below the injury level: therapy that would re-educate the nervous system, rather than “compensatory” techniques, which typical clinics use to adapt patients to their injury.
Still, Leeuw stresses that all his gains—every day of manual therapy unlocking movements and basic skills, like writing—were grueling to come by. Raising his right hand enough to drive a car took almost a year and a half. Monice’s journal entries were often optimistic—“Salt Lake City is feeling more and more like home,” she wrote after three months—but just as regularly conveyed the “daily grind that has become his life.” In March 2011, Leeuw blogged about the weight of inactivity, the “perpetual pins and needles.” He could walk, but remained in a wheelchair. He could move limbs, but needed help to eat. “But I am fortunate,” he wrote. “The memories of being frozen from neck to toe are still fresh. Whenever I lie in disbelief at what has become of my life, I try and think of the many people I see in therapy each day who would rejoice at being able to feel a spasm, turn themselves, and sleep with a urinal.”
The grind paid dividends. Near the end of his stay at Neuroworx, Leeuw began working with a team that was training to walk a full mile at the Kentucky Derby Festival Mini Marathon. The finish line, he felt, was also his finish line in Utah. And he returned home with not only dramatically improved function but a dream: There needed to be a place like Neuroworx in Indianapolis.
By Christmas of 2012—about six months after returning from Utah—Leeuw was in full fundraising mode, pounding pavement, visiting spinal cord–injury support groups, and trying to gauge whether he could even launch the clinic he wanted to dub NeuroHope. There were successes: He met with Dr. Susan Harkema—professor of neurosurgery and rehabilitation at the University of Louisville and director of the Christoper & Dana Reeve Foundation NeuroRecovery Network (NRN), a set of rehab centers that focus on activity-based treatments—to gain insights into both research and the practicality of starting a center of his own. Dr. Stephanie Kelly, dean of the University of Indianapolis’s College of Health Sciences at the Krannert School, offered clinic space at its Sutphin Center in Fountain Square.
By 2014, Leeuw had established a website, filed 501(c)(3) papers, and raised $80,000 through online crowdfunding, family, and a handful of private donors. But he still needed a therapist. “All this revolves around the clinicians’ standard of care,” he says. Meeting Nora Foster through a support group was a turning point. “That’s when I thought, We can do this.”
Foster, a former therapist with Community Health Network, had worked with spinal-cord injuries and stroke patients. Now NeuroHope’s director of therapy, she can recall seeing Leeuw on Fort Wayne TV long before his accident. “I’m a true believer in God, and I just know he aligned our paths to cross,” she says. She was drawn not only by NeuroHope’s concept but the idea of working on the fringes of traditional healthcare: “It dawned on me that there’s so much more to do to help these people after an injury, and the healthcare system just doesn’t provide it for people in Chris’s situation, who have the ability to possibly walk again.”
Some rehab facilities, for instance, are strictly medical. Others are private-pay facilities that operate more like gyms, with a focus on workouts and extended wellness. “There comes a point when you transition out of therapy and concentrate on exercise,” Leeuw says. With NeuroHope, “We want to integrate those two things.”
NeuroHope’s current space in the Sutphin Center is—everyone who works there agrees—pretty modest. Leeuw’s desk is in the same room as the equipment and the people and the fridge. The space is bright and active but doesn’t exactly feel like a clinic that would contain tens of thousands of dollars’ worth of Tony Stark–looking equipment, as it does. Open three days a week, NeuroHope serves more than a dozen patients now—the first who applied—and has a short waitlist; soon, Leeuw hopes to move into a larger space upstairs.
In one corner, therapists work on the legs of a young boy affected by a spinal-cord injury, moving them slowly up and down, up and down, talking him through the routine the whole time. A patient named Brad, paralyzed from the waist down, exercises in another corner, midway through his hour on the Functional Electrical Stimulation bike, a combination stationary bicycle and video game. On a small screen, a little avatar–Brad navigates curves and hills while electrodes stimulate muscles and feed information to his peripheral nervous system. Leeuw used the FES bike in Utah, and his is one of two in Indiana. He paid $38,000 for it, but he got another piece of equipment, a standing frame, donated by driving to the company’s headquarters in Minnesota to tell his story. He did the same to secure a NuStep recumbent bike in Michigan.
Brad drives up from Vincennes for his sessions, and he’s also a regular over on IU Health’s Lokomat, a robotic exoskeleton that helps patients retrain their movements. Leeuw holds no ill will toward such conventional rehab facilities, even though he thinks they are “stuck in that doctor’s office mentality.” “I don’t blame them for that one bit,” he says. “Insurance reimbursements are how they keep their heads above water. That’s the way it works. From their perspective, with a lot of spinal-cord and brain injuries, you can’t keep [those patients] in therapy forever. But the care needs to be longer than what it is—there needs to be programs in place after patients are discharged, and that’s what we’re trying to do.”
Leeuw wants NeuroHope to be part of the Reeve Foundation’s network of rehab clinics—which is where the structure and pay scale from Neuroworx come in. “You should see the fee schedules hospitals use,” Leeuw says. “They charge $400 per hour for physical therapy. So we said, ‘Alright, it’s up to us to do it ourselves.’” The $20,000 he spent for 17 months of intensive rehab in Utah would have covered short visits for about three months here. NeuroHope accepts insurance and some workers-comp plans now, and has filed paperwork to accept Medicare. When insurance runs out, clients can pay for additional time at $200 a month. Even if the rate goes up, as Leeuw forecasts in order for NeuroHope to grow, its model will remain more affordable than a typical clinic. “Unfortunately, it takes a third party like us [to change the system],” he says. “It takes an outside entity willing to sacrifice insurance visits and find a way to offset those costs.”
For the time being, Leeuw draws no salary, supporting himself with a part-time job at a cloud-based healthcare management company in Zionsville. Patient payments go toward overhead and paychecks for Foster and the facility’s other therapists, Donna Peterson and Sara Sale, but Leeuw admits he can’t pay them what they’re worth. “We usually see people twice a week,” he says, “but we don’t know how long we’ll be able to do that.” In August, a local organization called the Foundation for Complex Healthcare Solutions gave Leeuw $10,000, NeuroHope’s first grant.
There’s potential help coming from the statehouse. In 2007, Sen. Patricia Miller helped create the Indiana Spinal Cord and Brain Injury Research Fund, which fills its coffers from motor vehicle registrations. Every two years, the state decides how much the fund will receive, and it usually comes to $1.6 million a year. Those funds are then allocated to university and clinical studies. In a January 2015 presentation to the General Assembly, Leeuw called the law a “godsend” and campaigned to expand it to fund treatment. And in July, a bill authored by Miller and passed without opposition went into effect, allowing grants for clinics that provide long-term therapy, like NeuroHope. The allowance doesn’t increase anybody’s taxes and shouldn’t siphon dollars away from research. (Leeuw expects the fund’s allotment to increase in response to the new bill.) “A Hoosier had to live in Utah for a year and a half to get that therapy,” Miller says. “My goal is to develop this program enough so if 250 people need this care, there’s some place for those 250 people to go.”
But the bill would not provide an automatic fire hose of money for NeuroHope; if NeuroHope receives a grant, Leeuw is unsure if he would see those funds next year. Meanwhile, he hopes to keep the doors open by raising $50,000, mostly through grants, in the first quarter of 2016.
Still, no one believes NeuroHope is a magic clinic. “I don’t want to make it seem like everyone will recover given enough therapy,” Leeuw says. “A huge part of [our mission] is providing a place where the chronically injured can get out of their wheelchairs and stay active. For most people, it’s about having a place where they can come to maintain their quality of life.”
Leeuw hasn’t fully recovered. It’s easy to view him as a success story based on a few words: He walks, though slowly. He drives. He now lives alone. But by his estimate, he inhabits the body of an elderly man. That walking takes effort; he naps a lot and wears a brace under his pants on his left leg, the more damaged one. His body is tight with spasticity. Like most of those recovering from traumatic spinal-cord injuries, his blood pressure is a daily concern. “My endurance is an issue. My lungs are still about half-paralyzed. My stamina is real low,” he says. “Even to this day, if I get a small cold, it’ll take me out. I’ll start losing motor functions. It’s so strange.” He seems to have accepted that what has returned has returned, and what hasn’t … well, it has been five years. The dam, he thinks, is pretty well set. “At this point, it’s more strengthening what I have,” he says.
Yet the nervous system is a network of impossible proportions. It’s the ocean floor; science hasn’t mapped it all yet. Cardinal talks about a patient at IU Health whose injury occurred more than a decade ago. This summer, working with the center’s new, cutting-edge zero-gravity treadmill (one of only three in the country), that patient was able to triple his walking speed. “We recognize that’s one person, and not every 12-year-post-TBI patient may have that same gain,” he says. “But that situation demonstrates that the brain, even that far past injury, has the ability to remodel.”
Though the why of that patient’s progress remains unclear, the breakthrough underscores the one gospel truth of traumatic spinal injuries: There is so much the medical community has yet to learn. The discovery process takes an unpredictable, sometimes incredible, number of hours—and opportunities like NeuroHope. “Once upon a time, doctors said, ‘After a year, your recovery’s done, you’ve plateaued.’ It’s kind of the P-word,” Leeuw says. “But then people are starting to see recovery after a year, so now they say two years.” Part of what keeps Leeuw going, and NeuroHope growing, is this question: In two years, or five, or 10, what will doctors say?
On Gratitude and Grief
Five years after his accident, Chris Leeuw posted this reflection on his blog.
Five years is a long time to live in a broken body.
It’s a long time to live with the pain of a permanently dislocated shoulder, muscle fibers wound as tight as rubber bands, plummeting blood pressure, and constant exhaustion.
I’m beginning to forget what it was like to have two arms, or to take a step without needing complete concentration. It’s hard to remember what textures and temperatures felt like on my skin, or what it was like to take a full breath of air, and have a properly functioning bladder.
I’m grateful for the recovery I’ve made, and thankful that I escaped a life of total paralysis. Five years ago, that existence seemed like a real possibility. Many people that are hurt aren’t as fortunate, and I remind myself of that every day.
Nevertheless, there are times when nostalgia hits. Sometimes it’s difficult to see pictures or video of myself before the accident, and there are times I struggle with the realization that the man I once was and the life I could have had is gone forever.
Before my injury, I empathized with people who were disabled, but never thought I would one day become one of them. Those are the types of things that happen to other people. Not me. Not in the prime of my life.
I still remember everything about August 8, 2010. Every year all the memories of that day flood back. I remember waking up early and going to the gym, excited for the kayak trip later in the day. I remember picking up my friend Markus at his apartment on the way to Southern Indiana and wrestling with his dog in the living room before we left. I remember meeting our friend Justin at the campground, the bus ride to the launch site, and what an amazing day it was on the river. I remember approaching the 50-foot truss bridge on the kayaks, and I remember climbing up the narrow beam that towered above the river—the last act of physical strength I would ever perform.
It’s impossible to forget what it was like to be a total quadriplegic. Memories of being a floating head on a pillow will never fade. I’ll never forget what it was like to have a machine breathe for me, a team of individuals feed, bathe, and dress me, and what it was like needing a blow-tube to communicate with nurses. I’ll never forget the fear that those experiences may be a part of my everyday life for the rest of my existence.
I try not to dwell. But on the 8th of August, I allow it. This day is a reminder of my past, but also signifies what my family and I have overcome, and what we try so hard to build with NeuroHope.
I’ve learned that when forced to adapt to a seemingly impossible set of circumstances, no matter the context, it’s up to us to find new meaning, and new purpose.
As the years go by and I travel farther away from the able-bodied person I once was, I hope my purpose becomes clear.
Embrace your abilities. Embrace your physicality. Embrace your strength and the life you live.
In one fleeting moment, it could all be taken away.
Originally published on Chris Leeuw’s blog.