Her fellow hikers refer to her as “Iron Will.” Stacey Kozel has hiked more than two-thirds of the Appalachian Trail, a grueling quest, and she’s trekking solo with a major disadvantage: She cannot walk on her own.
She was diagnosed with lupus at age 19, and Kozel’s battle with the autoimmune disease has left her with no function in her legs, limited function in her hands and arms, and an inability to digest food. Her hike, in other words, is a feat most told her was impossible.
The 41-year-old spent more than 60 hours over four days in August climbing toward the summit of Mount Katahdin in Maine’s Baxter State Park, and the northern terminus of the Appalachian Trail. This is her journey.
Day 1: Aug. 26, 2016
Morning comes quickly, the alarm sounds at 4:30 a.m. It’s dark, and Kozel hits snooze on her phone. By 5:30 a.m., she is strapping her C-Braces on.
Kozel, who lives in Ohio when she isn’t hiking, has attempted to summit this mountain twice before. Her most recent effort, in October 2015, was part of her quest to complete the Appalachian Trail within 12 months. That time, she made her approach on the Hunt Trail, the northernmost part of the trail. She was forced to turn back because of darkness, leaving her a mile short of the needed start and summit. Undeterred, in March 2016, Stacey picked up the trail again, this time at the southern terminus at Springer Mountain in Georgia.
Over the next six months, she would cover more than 1,600 miles through Georgia, North Carolina, Tennessee, Virginia, West Virginia, Maryland, Pennsylvania, New Jersey, New York, Connecticut, Massachusetts, and Vermont. Now, only Maine and New Hampshire stood in the way of reaching her goal.
After her paralysis two years ago, Kozel worked relentlessly at rehabilitation. She regained partial use of her arms and upper core, but her legs remained completely paralyzed. Unsatisfied with the idea of spending her life in a wheelchair, Kozel began researching alternatives and discovered the Ottobock C-Brace. The C-Braces are not robotic; they do not walk for her. But using sensors and microprocessors, the braces allow Kozel to achieve a natural gait.
After finding the braces, Kozel spent 12 months persuading her insurance company that the braces, at $75,000 each, would improve her quality of life. With help from her medical providers, she was successful.
It’s just past 7:30 a.m. and an hour into her trek when Kozel hears a familiar voice from behind. It’s her dear friend and physical therapist, Sarah Czyz.
Czyz has worked with Kozel since she became paralyzed in 2014. Czyz says of her friend: “I still haven’t figured out how she’s standing, never mind walking or climbing rocks.”
Kozel asked Czyz to join her for the summit. “I couldn’t have done any of this without her. She used to lift my head when I couldn’t. She held me up.”
The pair hike slowly, stopping often on the trail for Kozel to catch her breath. Her lungs are also damaged from her lupus.
Twelve hours into their hike, Kozel realizes they have completed only half of the 3.3-mile trail to the Chimney Pond Campground. They pass an arrow and a smiley face scraped into the dirt. Kozel, anxious, doesn’t see the humor and ignores the drawing.
By 7:30 p.m., the woods are dark. Kozel and Czyz put on their head lamps to navigate the trail.
While paused for a minute, Kozel’s left brace begins to beep. The brace has been malfunctioning most of the day, making it difficult for Kozel to bend her knee. Both women groan over the audio addition confirming the malfunction.
The hiking is extremely slow in the darkness. By 11 p.m. Kozel’s right brace has lost its charge and is locked up. Now, she must push forward stiff-legged.
Kozel decides she must stop for a couple hours. Her legs are swollen, and she needs to take her braces off to get her blood circulating. “This is one of my worst days,” she says. When her legs swell up like this, she explains, it feels like she has to pry the braces off.
Lying on the cold rocks, Kozel complains of back spasms and feeling nauseous. “It’s been going on for a few weeks now. I feel it might be another flare-up [of my lupus]. You can kind of feel them coming on. I’ve been trying to ignore it. I try not to think about it, but it’s always in the back of my head. That’s why it’s important to enjoy life, laugh and get outside everyday.”
Day 2: Aug. 27, 2016
As light is coming back to the trail, neither woman has slept. Instead, they spent the hours lying silently on the cold boulders, miserable. Nonetheless, several hours of hiking await them this day.
Arriving at a marker on the Chimney Pond Trail, Kozel jokingly lifts her arm in triumph. It’s been 27 hours since she started the climb, and her relief to see light at the end of this path is obvious. They will soon arrive at a campground.
But the campground doesn’t offer the total relief Kozel had hoped. Instead, at 10:45 a.m., Baxter State Park Ranger David Loome approaches. He has been looking for Kozel and Czyz. “You can’t camp trailside. That can’t happen again.” He tells Kozel he needs to give her a written warning and that she needs to plan around the rules that govern the park.
Kozel talks with Ranger Jen Sinsabaugh while resting in a lean-to at the Chimney Pond campground.
Loome and Sinsabaugh explain that the park’s lead ranger advised Kozel not to attempt the summit. Search-and-rescue procedures, the rangers say, are expensive, and Kozel would be held financially responsible if a rescue was necessary. They also offer to charge Kozel’s braces — if she will use them to exit the park rather than continue to the peak.
Kozel agrees, and Sinsabaugh carries the braces off to be charged. But Kozel soon regrets her decision and asks Czyz to retrieve the legs. Kozel is determined to press on.
Kozel and Czyz discuss the best plan to get up the mountain. The women know that they will not be ascending Katahdin that day — and Czyz, not at all. She has a flight out of Boston in the morning and needs to depart. But Kozel has a summit in her sights for the next day.
The pair sit for an hour, taking in the view of Chimney Pond and Mount Katahdin. Czyz offers Kozel encouragement to continue on her quest and says goodbye.
Day 3: Aug. 28, 2016
Before she begins her ascent, Kozel checks in at the ranger station. Sinsabaugh again advises her to stand down, expressing her concern for her safety.
Kozel shakes off Sinsabaugh’s counsel and departs the ranger station. She is headed for the Saddle Trail — and her ascent of Mount Katahdin. She is even more determined to complete the 2.2 miles to the top.
The ranger, she says, “already told me I’m not going to make it. I can’t get those words out of my head. … That just makes me want to get to the top even more. I know she means well, but I don’t think she knows how it affects people.”
Once on the trail, Kozel meets up with a fellow hiker, Mike Tims of Beaufort, S.C. Clearly seeing her as inspiring, Tims thanks Kozel and says he couldn’t wait to share her story with a friend whose sister was paralyzed from a car accident.
The encounter with Tims makes Kozel reflect on her celebrity status. She has received a lot of attention during her trek but hasn’t always liked it. “I’m just someone stumbling through the woods,” she says. “I don’t want people to see me struggle, but I’m getting better at it. I’m trying to bring awareness to lupus. People don’t know what it is. I hid for 20 years, I pushed my friends away.”
Farther up the trail, a row of boulders blocks Kozel’s path. She removes a brace while struggling to climb over. She will spend an hour at this spot. The three boulders make a solid wall in front of her.
There is no easy way over them or around them.
She studies the cracks and crevasses and worries the microprocessors on her braces could get stuck. She sits with her back to a boulder and tries to pull herself up. No good. She takes off a brace and pushes it over the boulders then tries to pull herself up the same path. She studies the rocks and looks dejected. She makes an attempt to pull herself over them. She stops. “This is not hiking, this is rock climbing.”
Finally, Kozel pulls herself 2 feet up a slanted boulder. Then she winces as she slides back down, visibly dejected.
After finally making it over the boulders, she is exhausted. She sits quietly for 15 minutes.
It’s nearly 6 p.m. Again, after 12 hours of hiking, the light is fading. It begins to rain. Tears fill Kozel’s eyes. “The hardest part is the people. There are so many people counting on me to finish this. … It’s hard getting this far after everything I just did, crawling on my belly, to feel so close, it feels like I let everyone down.”
It is time to turn back. She will not make it up the mountain this time.
Day 4: Aug. 29, 2016
Kozel hikes through the night, away from the summit, headed back to camp. She is down but tries to be positive. “Mount Katahdin kicked my butt again ... but I’ll be back.” She laughs.
“I’m frustrated that my braces aren’t working, they’re so heavy with every step. Every step is so painful. My legs feel like dead weight. Being tired and feeling like I have cement strapped to my legs, it’s a struggle. I just need to see the lean-to.” She finally, after hours of hiking, arrives.
As she settles in the lean-to, it is obvious the rest couldn’t have come soon enough. She is exhausted. Her frustration is palpable. “With every step I made, I knew I was closer. And with everything I was able to achieve, it’s hard to stop moving forward.”
At approximately 1 a.m. on Sunday, Oct. 9, Kozel finally summited Mount Katahdin, completing the Appalachian Trail.
Kozel describes starting the hike this trip: “The weather was perfect. It was really nice until I hit 2.8 miles. Then, the temperature really dropped. It started raining, pouring. Then the wind started. I wanted to sit down for the night, but the rain made me keep going. It just kept getting worse. My hands were frozen. I couldn’t grip my poles. I started dropping them.”
When she reached the peak, “the wind got so strong it started knocking me over. When I got to the actual sign, I was actually crawling and pulling myself up. I leaned against the sign to block the wind and decided I had to get down. I started down the Hunt Trail. I tried to stop, but I couldn’t find shelter.”
Ultimately, she made it down the mountain and recuperated at Daicey Pond.