A 2014 battle with lupus left Stacey Kozel paralyzed from the waist down. To defy the disease, she used an exoskeleton to hike the 2,189.1-mile Appalachian Trail.
Editor's note: Since the publication of this story, members of the Facebook group Pacific Crest Trail Class of 2017 have raised questions about whether Stacey Kozel completed a subsequent hike of the Pacific Crest Trail. The story of her accomplishment aired on ABC World News Tonight and the controversy is documented here on ABC.com. Kozel maintains that she completed the Pacific Crest Trail, hiking it in several stints between March and August of 2017.
For this story, about Kozel's completion of the Appalachian Trail, ESPN interviewed Kozel and also relied on interviews with and accounts from five different sources who said they either hiked with or saw Kozel along the Appalachian trail, in addition to local news accounts documenting her journey. The photographer on this piece also hiked with her for several days in Maine.
They were about 4,000 feet high, standing in a rockslide roughly three-quarters of the way up Mount Katahdin, the tallest peak in Maine, when they said goodbye. It was 4 p.m., with just a few hours of daylight left, and Stacey Kozel and her friend, Patsy Remington, decided to go in opposite directions.
Kozel would go up and spend the night on the dark and foreboding mountain.
Remington would go down and sleep.
Kozel planned to find a place to hide from the elements among the giant boulders that were just above her -- a dangerous proposition on any night, and especially so on this October evening, with howling winds, plummeting temperatures and an angry rainstorm.
Adding to the danger is the fact Kozel is paralyzed and walks with braces. But she was willing to risk a night alone on Katahdin because getting to Katahdin's summit -- another mile and a half or so over extremely rugged terrain -- would allow her to complete the entire 2,189.1 mile Appalachian Trail, an impressive accomplishment for an able-bodied person and an unbelievable one for Kozel, a T9 quadriplegic. (She has regained enough use of her arms that she says she's functionally paraplegic, but her diagnosis remains quadriplegic.)
If she finished, she would be the first person with her condition known to hike the entire the trail. If she didn't complete it, she would view it as a failure because she would be letting down thousands of people she so desperately wanted to inspire.
Kozel had already climbed some 2,700 feet that day. She didn't want to go down and have to re-do that. Plus, she had already tried and failed three times to summit Mount Katahdin in the past year. As dangerous as it was, this was her last, best chance.
Kozel didn't want Remington to stay up there with her, as it was far outside of Remington's comfort zone, but Remington didn't want to leave her friend alone up there, either. But she knew better than to argue. "You can't say to Stacey, 'No, stop, come down,'" Remington says.
The plan was for Remington to hike down to Kozel's Jeep (license plate UNSTPBL), sleep in there, and in the morning climb back up. She would find Kozel, and they would finish the climb together.
After Remington left, the weather turned from pleasant to nasty, and Kozel changed her mind about that plan. She didn't want to wait that long. The cold, wind and rain made hypothermia a real threat, but if she kept moving, she would keep warm, or at least warmer. What if the rain didn't stop for hours? What if her legs swelled again, as they often had since she started the trail in March? What if she cramped up?
What if this, what if that, what if the other?
All those questions had made Kozel want to quit 1,000 times.
Two years ago, as she lay completely paralyzed in a hospital bed, unable to even lift her head, she had looked out the window and longed to be outside and active. As bad as it was on Katahdin -- and it was really, really bad -- it was nothing compared to being unable to move. She had beaten total paralysis. She was determined to beat this mountain, too.
So she pressed onward and upward, looking for the trail's tell-tale white blazes, the spray-painted rectangles that direct hikers where to go. She got to the boulders. The metal braces on her legs kept them locked straight, which made climbing the boulders arduous.
The sky turned black, the temperature dropped, and rain started pouring down. Her fingers were so cold she couldn't grip her poles. "If I stay out here any longer, I might lose a few fingers," she thought to herself. "I'm hiking out here without legs, what's a couple fingers?"
Kozel climbed on. Could she make it? She didn't know. But she knew she couldn't stop.
"I remember holding her as an infant," says Mary Kozel, Stacey's mom. "I was sitting on the couch. I told her, 'I'm going to raise you to be tough and independent.' Now that I look back I think, 'Oh my gosh, I might have gone too far.' I didn't realize what I was creating."
Stacey calls her mom her hero and best friend. "There's other parents who would not be as cool as she is about my adventures," says Stacey, who has jumped out of perfectly good airplanes six times. "She always tells me what she thinks, but she never holds me back."
Stacey played "any sport with a ball" as a girl, and Mary could barely stand to watch. Particularly in soccer, Stacey played with a disregard for her own well-being. "She would sacrifice her body," Mary says. "As a parent, I would cringe. You need your body. The ball's not that important."
It was to Stacey. In softball, even if she played well, she still asked her mom to pitch to her in the backyard after games. She aspired to play sports in college, but her athletic career ended when she was 19 and diagnosed with lupus, a chronic autoimmune disease, which results in the body attacking healthy tissue. The Lupus Foundation of America estimates 1.5 million Americans have lupus, and it affects each of them differently. For Kozel, the disease has ravaged her spinal cord, among other things.
She's had several flare-ups since her diagnosis and each time, Kozel, now 41, spent extended time in the hospital. Each time, she fought for months to recover. Each time, she lost a little bit more mobility. The most recent flare-up, in March of 2014, was sparked by a car accident, and it was, by far, the worst. For a while she couldn't even lift her head.
Stuck in bed, with nothing to do but think, Kozel recalled her time as a nurse working with dementia patients. That was the best job she ever had because she received as much care from those patients as she gave them. She remembered the regrets those patients described to her -- of broken relationships that were never mended, of long-desired vacations never taken, of living as if there's an endless sea of tomorrows.
If lupus taught Kozel anything, it's that there's no guarantee of tomorrow. She promised herself that if she recovered, she would live her life in such a way as to die with no regrets. It was nine months before she could stand and more than a year before she could walk with confidence again, and even then she needed braces. She attacked her recovery with the same passion she attacked sports, sometimes leaving exhausting physical therapy and going home to work more to make herself better.
Kozel's ferocious fight against lupus helps explain how a paralyzed woman could even think about hiking the Appalachian Trail, let alone try it. To strangers, the idea is shocking. To her loved ones, it's decidedly less so. They all knew better than to try to talk her out of it, though some asked if she was sure it was a good idea.
She just smiled and relished the challenge before her.
Appalachian Trail by the numbers
The Appalachian Trail starts at Springer Mountain in Georgia and slices 2,189.1 miles through 14 states before ending atop Mount Katahdin in Maine. To hike the entire trail is at least as much of a mental challenge as a physical one. Being alone in the woods, shut off from all of life's demands, is mesmerizingly cleansing ... until it gets massively boring and not showering becomes OK.
Day after day, Kozel walked until it was almost dark, took off her braces, crawled on the ground to set up her tent, slept, woke up and did it again. Because lupus has also struck her digestive system, she subsisted largely on peanut butter crackers, water and Gatorade. Lupus also has diminished her lung capacity, so she lost her breath frequently. She calls herself a "freeze baby," and to fight the cold (and try to put down more miles every day), she walked through the night at least 10 times.
When the hike was difficult, which was often, she reminded herself of how far she had come already. "I had to have that conversation with myself: 'You're not in the hospital bed. It's a good day,'" she says. "The worst day on the trail is still better than the best day in the hospital."
She was by herself for her walk in the woods, but she was never really alone. The Appalachian Trail Conservancy estimates 3 million people hike part of the trail every year, and 3,064 hikers registered to thru hike this year, an increase of 1,137 from the previous year. Kozel can't recall spending a single day literally alone.
Normal rules of society do not apply on the trail. People could walk shoulder-to-shoulder in a group in New York City for three blocks and never say a word to one another. On the trail, they'd be friends within minutes. Kozel says the best part of the hike was the people she met. "It's an amazing community out here," Kozel says. "Everybody helps each other out."
News of the kindness exhibited in the close-knit community comforted Kozel's mom in the long months that she was gone. Mary Kozel was as OK with her daughter hiking the Appalachian Trail as a mom can be. After a lifetime of seeing her daughter overcome challenges, Mary was prepared for an adventure as audacious as this one. Still, the thought of her paralyzed daughter alone in the endless wilderness scared her. It didn't help that all the stories people told Mary about the Appalachian Trail had bears in them. "They thought it was funny," she says. "I didn't."
Kozel's first bear scare came just a few days into her hike. As she lay in her tent, her braces standing in the corner, she thought about all the warnings about bears, and how she hadn't seen any, and how the hype hadn't amounted to anything. Suddenly, she heard a rustle, her heart leapt into her throat and she thought a bear was about to rip her to shreds.
Her scream echoed through the woods.
Then she realized the rustle was just the noise of her braces falling over, and she was worried her scream of terror had ruined other hikers' peaceful evenings.
"I was like, 'SORRY! ... Sorry ... sorry ... sorry ....'" she says.
Weeks later, as Kozel hiked with her "trail family" in Virginia, she turned a corner to see a mama bear and two cubs. Hiker code says not to run, but to make yourself as big as possible and make a loud noise to scare the bears away. Her companions turned around and ran. Kozel's paralysis makes it impossible for her to turn around quickly, never mind run, so she crossed her poles across her chest and made a noise that she intended to be a yell but that came out sounding like a squeak. It should not, she says, have scared a bear. The mama bear and her cubs backed off.
When Larry Schulte (trail name, Windy, because he talks so much) saw Kozel and her braces on the trail one day, he thought of his own ACL surgery. He asked if she was recovering from a similar operation. When she said she was paralyzed, he blurted out, "That's awesome!"
What he meant to say was that it was awesome that she had the courage to hike the trail. He found her inspiring and became her evangelist on the trail. News about Kozel flowed north and south, blown in each direction by conversations at campsites and shelters where hikers stopped for the night. She became "trail famous." Kozel's trail name, Iron Will, only hints at the esteem with which her fellow hikers view her.
Part of what makes the trail fun is complaining about how miserable it is. Kozel's name came up often in that context. "We were done and tired, bitching about that stupid boulder field, or somebody needs to turn down the heat," says Gabe Burkhardt. "Somebody would arrive in the middle of one of our bitch-fests and say, 'I just saw Iron Will, and she was huffing through this same boulder-field stretch, and she was doing it.' That usually made our bitch sessions a little bit shorter. Not much. But a little bit."
The more Burkhardt, a vascular and trauma surgeon who retired as a major from the Air Force in 2013 after more than 20 years, heard about Kozel, the more he hoped to catch up to her and meet her. He had spent years researching soldiers' use of prosthetics and "ambulatory assist devices" -- the fancy way of saying braces.
He was curious to see how Kozel used her braces and how well they worked (or didn't). He finally caught up to her in New York state, just after the summit of Bear Mountain. He watched her walk with a clinical eye. He saw that the braces made her gait stiff and uncomfortable, but he also saw that they weren't doing any harm to the rest of her body -- a critical piece of analysis when measuring the value of any such device.
Think of walking as a controlled fall. You lean forward, and just when you're about to tumble onto your face, you swing your leg out and catch yourself. Kozel's hip muscles allow her to swing her legs forward. But she has no control over muscles any lower than that. She can't bend her knee or foot, and her leg muscles don't work.
She has two sets of braces. Both stabilize her knees, feet and ankles. Neither "walks for her" at all. One is made of metal and allows her to walk stiff-legged. The other is battery-powered and has computer sensors that tell the braces what angle her knee and foot should be based on her stride.
The stress on her upper body means she expends roughly twice as much energy as an able-bodied person in covering the same distance, says Joey Pollak, the prosthetist and orthotist who outfitted Kozel with the braces.
In everyday life, the battery-powered braces, which have to be recharged every two days, allow nearly normal walking. But there is no normal walking on the trail, and the high-tech braces malfunctioned frequently. When the batteries ran out, the braces worked like the simpler ones, except they were so heavy that Kozel felt like she had cement bags strapped to her legs. Still, Kozel hopes her long hike with those braces proves to insurance companies reluctant to pay for them that they are valuable.
That was all impressive to Burkhardt from a medical perspective. But it's not what impressed him most about Kozel. "After about five seconds of talking to her, she's got this big, beaming smile on her face," he says. "Seeing how happy she was, and how fulfilling this was for her, and how much of a challenge it still was, it was incredibly inspiring for me."
Burkhardt and Kozel only spoke for a few minutes, and they followed each other in the coming weeks via social media. When Burkhardt (trail name: Sketch) complained on Facebook, Kozel always chimed in with support. He marveled at that -- he's just some guy walking the trail, and here she is, encouraging him to keep after it. "That, by itself, I thought was phenomenal," he says. "I'm looking forward to trying to emulate her example."
Up and down the trail, Kozel left inspiration in her wake. Burkhardt said other hikers were jealous that he got to meet her, and another thru-hiker said he heard so much about her he was bummed he never ran into her. Kozel blushes at all of this, saying, "I'm just another hiker stumbling through the woods."
Sharing the story of her hike became a big part of why she wanted so desperately to complete it. For years after she was diagnosed with lupus, she rarely told people about it, instead making up other excuses when she was ill. As her attempt to complete the trail became publicized -- she's appeared on the CBS Evening News and in The Washington Post and numerous local TV and newspaper stories -- she saw how it inspired people.
Her Catholic faith is an important part of her life, and she wondered during her lupus flare-ups what God wanted to teach her through her struggles. She concluded that using the hike to encourage people would give her suffering the meaning it had lacked before.
There are three ways to complete the trail. One is to "section hike," which is to return year after year until done. Another is to "thru hike" -- start at one end and walk straight through to the other. A third is called "flip flopping," which is thru hiking, only not in linear order.
In late August, Kozel decided to flip from Vermont to Katahdin, then flop back to Vermont. It sounded like a great plan. But it didn't work.
The hike up Katahdin is widely considered the most difficult stretch of the entire trail, and she wanted to complete that before it got too cold. Elevation at the summit is nearly a mile high, and getting to the top is difficult, even on a good day. She simply didn't have one. Her attempt to climb Mount Katahdin was beset by problems with her braces, swelling in her legs and feet, and boulders so big that scaling just one of them took her an hour. She hadn't felt well for some time, and she was worried another lupus flare-up was starting.
In the midst of those struggles, a ranger at Baxter State Park, which contains Katahdin, offered to charge Kozel's braces if she would use the power to walk down the mountain instead of up. The ranger told Kozel that if she had to be rescued, she would have to pay for it. Kozel found that both discouraging and insulting.
"If I thought I was going to endanger rescue crews, I wouldn't do that," Kozel says. "That's why that kind of upset me. Just because I'm disabled and have lupus doesn't mean I can't do this. I want to help people. I don't want to injure people. I want to change the view of people like her who think because I'm disabled I can't hike this mountain."
Another ranger gave her a written warning about camping on the trail. She wasn't camping, but she was going so slowly while hiking through the night that it seemed like she was.
(A few words in defense of the rangers who sound so cold -- it's not necessarily fair to say the rangers singled Kozel out for discouragement. In the name of safety, they discourage everybody. Research Katahdin, or talk to rangers there, and you'll find so many dire warnings of its dangers that climbing it sounds like the dumbest idea anybody has ever had.)
After four days and 60 hours of hiking, Kozel decided to abort the attempt. As she made the slow walk down -- retracing steps that hadn't advanced her goal, spending time she didn't have and expending energy she couldn't afford to waste -- she thought she had proved the rangers right instead of wrong. "I want people to not give up, whatever they're going through," she says. "And I was giving up."
She tried again a few days later and got to an area known as Thoreau Spring -- a mile from the summit -- but had to turn around again, this time because of lightning. That made three failed attempts at Katahdin (she had hiked there in October 2015 before she was sure she was going to attempt a thru-hike.) Pressed but not crushed, she returned to Vermont, determined to regain her momentum and take one more shot at scaling Katahdin. "There was no way I was quitting," she says. "Forget that."
Katahdin haunted her steps from Vermont, through New Hampshire and into Maine. There is a delicate balance here, between drive and obsession. Nobody whose opinion is worth listening to would think 2,189.1 miles was great but 2,188.1 was unworthy. Kozel acknowledged this ... sort of. But she sees it as binary, pass or fail, with no in-between. Yes, walking 2,188.1 miles alone in the wilderness while paralyzed was a great accomplishment. But she had set out to walk 2,189.1. She is not the type of person to set a goal and be content to come close to it. She yearned to pass every blaze, to prove right the people who believed in her. She wanted to show people facing struggles that they could accomplish whatever they wanted. If she left that last mile un-walked, she could not rightly say that about herself.
An internal fire drove her, too. Lupus, she said, had robbed her of the ability to play sports. It had disrupted her career and education multiple times, and her flare-ups always seemed to come just as she was about to finish something important. She was about to finish something again, something big and incredible and inspiring, and she refused to let lupus stop her.
So much of Kozel's story is about attempting the impossible instead of settling for the simple. It would have been easy for Kozel to disappear into her home after she was paralyzed. That's what her mom said she would have done. But Stacey would rather try something hard. We spend so much time worshipping comfort that somebody who doesn't bow at that altar sounds heretical. We have turned discomfort into something to be avoided rather than endured and conquered.
Not Kozel. If she got cold, she could warm up. If she got exhausted, she'd recover. But if she quit, she'd regret it for the rest of her life. She used the long, arduous stretch from Vermont to Maine to prepare herself, mentally and physically, for Katahdin.
In her book "Wild," Cheryl Strayed describes ascending and descending mountains on the Pacific Crest Trail as like knitting and unraveling a sweater, over and over again. That description fits the Appalachian Trail, too, except Mount Katahdin is like knitting a closet full of sweaters.
If only she could have made her seventh skydiving trip and landed at the top, Kozel joked, everything would have been so much easier. Among several possible ascension routes, Kozel chose the Abol Trail for her final attempt because it offered a relatively short trip (3.4 miles) to Thoreau Spring, where her most recent attempt had ended. From there, she would pick up the trail for that final mile. It would not be easy. The Abol Trail features a climb of more than 3,900 feet, a leg-scorching, core-ripping, back-destroying ascent made tougher by an endless hopscotch of rocks, roots and boulders.
When Kozel and Remington stepped onto the Abol Trail that beautiful Saturday morning, the canopy of mid-October leaves made the sky glow electric yellow. It was T-shirt weather. "A beautiful day for a hike," Kozel says. Abol starts off as an old road and ascends continuously, but not terribly steeply. About a mile in, a dark brown wooden sign announces in white type:
"YOU ARE ENTERING MAINE'S LARGEST WILDERNESS
YOUR SAFETY IS YOUR RESPONSIBILITY
SET A TURNOUND TIME AND STICK TO IT
YOUR DESTINATION IS YOUR SAFE RETURN TO THE TRAILHEAD
RESCUERS CAN BE MANY HOURS IN ARRIVING"
The road becomes a trail and continues until it turns into essentially a rockslide, like God himself worried about getting lost and left a trail of rocks instead of bread crumbs. The grade increases, and the climb is relentless. Trails with severe elevation change often feature switchbacks to lessen the strain. Not Abol -- like a good kick returner, it goes only north and south.
Eventually the rocks turn into boulders, and the hike becomes a scramble. That's where Remington left. When she got to the bottom, she couldn't sleep. Rain pelted the windows, and she couldn't stop thinking about her friend alone on the mountain. "She's gone through so much in her life. But always if you ask her how she's doing, she says, 'I'm fine. How are you?'" Remington says. "I don't know anybody else as strong as her. I'm so glad she's in my life. She's changed me -- made me look at struggles in life as just part of life."
When Remington left, Kozel's confidence was soaring; it had been a great day. Soon it turned nasty. Rain whipped at her from all directions and felt like tiny icy knives slicing at her face. She was already physically exhausted from the steep and unending climb to that point. She said the wind blew her over several times, and her hands were so cold she couldn't hold her poles.
She kept on, hour after hour.
She had vowed, jokingly, that she would finish Katahdin if she had to crawl to the end. And she says that's what she did, until finally, the iconic Katahdin sign -- the northern terminus of the Appalachian Trail -- came into view in front of her. It was, she guesses, 1 a.m. She had been alone on the mountain for eight hours already. The world around her was a black, howling panorama full of breathtaking beauty she couldn't see.
Other thru-hikers she had met on the trail had gotten to this same spot, eyes wide with joy, bodies bent by exhaustion, and climbed onto the sign to have their pictures taken. Kozel couldn't climb the sign and had nobody to take a picture for her even if she could. Her hands were too cold to pull out her phone for a selfie, and it was raining and dark anyway.
She says she crawled to the sign and put her arms around it. She had expected to "have a moment" up there at the pinnacle of Maine, atop the slain Katahdin. She couldn't summon the energy to shed even a single tear. She took her hands off the sign and started the slow descent, which would be nearly as difficult as the climb. "It was like, 'Are there any helicopters to get me down from here?'" she says.
As the sun rose to Kozel's left, Remington pulled herself out of the Jeep and headed back up the trail to find her friend. Remington hiked almost all the way back to where she had turned around the night before -- when suddenly a battered, bruised and dirty Kozel appeared in front of her. "She looked like she was frozen stiff," she says. "She didn't even recognize me."
Remington -- who until that moment still thought she was meeting Kozel to continue their climb -- could tell by looking at Kozel that she had not hidden in the boulders, but had summited instead. "I was so excited for her. I was jumping up and down."
Kozel was too spent to join the celebration. All she could do was slowly place one foot in front of the other, a task made more difficult because so many of those brilliant yellow leaves she had walked under on the way up had been blown off during the storm and now hid the rocks and roots, and sometimes even the trail itself, from her view. Her teeth chattered as other hikers ascended past her in T-shirts. By the time they returned to her Jeep, it was late morning. She had been hiking for more than 27 hours.
They drove two-and-a-half miles down a skinny dirt road under a brilliant yellow tunnel of leaves to the Katahdin Stream Campground. Kozel had been too cold and wet to take a photo with the iconic sign at the top, so she took one with a sign at the bottom instead. She leaned back, her hoodie pulled snug over her ears and her arms crossed in a pose that screamed, "I got this."
She texted her mom and told her the good news. Her mom wrote back that she was proud of her. And that made Kozel cry.