Most people would have given up years ago.
Stacey Kozel is not most people.
The 41-year-old Medina, Ohio, resident has undertaken an enormous task: hiking the entire 2,190 miles of the Appalachian Trail. For most, that would be a mighty feat unto itself, but Kozel has an additional obstacle, to put it lightly: her legs are paralyzed.
Kozel was diagnosed with lupus when she was 19 years old, and it has slowly stolen much of her muscle function during the past 22 years.
Lupus is an autoimmune disorder that causes the immune system to attack healthy tissue. It affects everyone differently, and symptoms can be cyclical. That’s how it has been for Kozel — every couple of years, she would have what she termed a “flare-up.”
“With lupus, you’re never really fine. You have good days and not so good days. You just kind of go with it,” she told The Washington Post Thursday night from the Appalachian Trail, just after passing the 1,000-mile marker. “When these flare-ups happen, it really attacks your body.”
In her case, the disease directly attacked her central nervous system during each flare-up, causing her to lose muscle function.
In March 2014, the disease dealt her legs a death blow.
“It was my worst flare-up,” Kozel said. “I kind of stumbled into the hospital. … Within a couple of days, I lost all mobility. I couldn’t sit up. I couldn’t lift my head. It took three people to hold me up, because my body was dead weight, just stiff.”
Slowly, she recovered control of both arms and her upper body, but her legs never followed suit.
“I regained core and arm strength,” she said. “But with my legs, it’s permanent paralysis from now on.”
The flare-up occurred eight weeks after she finished a program to become a radiology technician. Her competency exams included a physical test requiring her to be on her feet. She knew she couldn’t perform the job, not now, but she wanted to finish her exams anyway.
“Even if I was never able to work in radiology, I needed to be able to do [complete them] for myself,” she said.
From her electric wheelchair, she desperately searched the Web for anything that could help. Eventually, she found the Ottobock C-Brace.
To call it a brace is a little simplistic, because it functions more as a mechanical exoskeleton. It looks like a large black brace that cups around the foot and extends up the thigh. Its bendable knees joints are equipped with sensors that “measure the current position of the joint every .02 seconds.” Between the lower knee and the foot is a carbon/fiberglass spring, also equipped with a sensor that monitors ankle pressure.
The key to the C-Brace is its built-in microprocessor, which receives information from the ankles and adjusts the hydraulic system (located at the knee) that actually moves the leg.
It allows someone with paralyzed legs to walk again because, in essence, it does the walking for you.
As Kozel explained, “It’s kind of like a car. The car has hydraulics and when you go over bumps, they kind of give. That’s what these braces do — when walking over holes and terrain, you don’t really feel it.”
Kozel was ecstatic until she saw a price tag: $75,000. Each.
She couldn’t afford a miracle.
Kozel sat in her house, thinking about how much could change — she wouldn’t have to call restaurants to ask if she could literally get inside. She wouldn’t have sores, skin breakdown or muscle tightening from sitting all day. Maybe she could even go hiking again.
Her insurance company, though, deemed this quality of life “not necessary.”
The first denial from her insurance company left her heartbroken but determined.
Then another came. And another.
All said the same thing: The braces weren’t necessary.
She spent a year in this hell, escape just an arm’s length away.
But according to the insurance companies, exiting that lonely hell was “not necessary.”
“It felt like they had control of my life,” Kozel said. “They could just approve me, and there would be so many more possibilities [in my life]. Every denial was very hard.”
Added Kozel, “It was depressing.”
She didn’t stop appealing the decisions, though, and a year later, she was finally approved. The braces were strange at first, requiring her to “walk” with her upper body, balancing herself. When she put on a backpack, she thought she might tip over. But she quickly adjusted and managed to easily walk around the house, then the block, then the neighborhood.
That’s when she decided to hike. Not a dirt path in her back yard or a jaunt around the local park.
She was going to hike the Appalachian Trail.
It’s the longest hiking footpath in the world, stretching across 14 states from Georgia to Maine with a 464,500-foot change in elevation throughout, meaning hikers literally move 464,500 vertical feet while on the trail.
In March, she began the hike. Like many hikers, she’s going it solo but finds many friends along the way.
“You’re never alone out here. You have a trail family, they call it,” she said. “For me, I’m slower, so we end up finishing the day in the same area, but it just takes me a lot more hours. You end up hiking with the same group of people.”
Not all of those people are likely to complete the trail, though. According to the Appalachian Trail Conservancy, only 59 people completed the trail from 1936 to 1969. The numbers are higher now, but only 1 in 4 hikers finish it.
These numbers don’t faze Kozel, who has spent the past three months on the trail and was almost at the half-way mark on Friday.
“Everyone keeps bringing up the 1 in 4 ratio of people finishing the trail, but I think what actually helps me is remembering what it was like in the hospital, not being able to move at all,” she said. “Just remembering that experience helps me with the mental part of the ups and downs of the trail.”
Meanwhile, the C-Braces help with the physical part. They’re not perfect, of course. When she faces boulders and steep inclines or embankments, she’ll throw her backpack ahead. Then she’ll sit and pull herself up backwards, scooting along.
“I try not to be too proud,” Kozel said.
They also can’t get wet, and they require a new charge every two days. That’s where the “trail angels” come in, people who live along the trail and allow hikers to stop in for a night’s rest, a warm meal or, in Kozel’s case, a charge.
Rain can be problematic, since it sometimes forces her to remain in her tent.
“The weather is one thing that will slow me down,” she said. But she sees a silver lining there, too: “Because I am slower, I actually meet people.”
Those braces are one of the reasons she chose to tackle this feat — she wants other people who use wheelchairs to learn of the braces, and she wants insurance companies to be out of excuses to deny them.
As she wrote on Appalachian Trials:
My goal is to bring awareness to these braces so people know they exist and hopefully it gives more people the ability to get out of their wheelchairs and out exploring the world. There are people that qualify for these braces that either do not know they exist or it gets stopped with an insurance denial. I hope WHEN I make it back to Mt. Katahdin on my thru hike, insurance companies will have a much tougher time telling others that the braces are “not necessary.”
The other part is simple, sad and inevitable. She doesn’t know how long she’ll be able to hike.
“I knew I wanted to hike it, but I really never thought it would be an opportunity. But after this last flare-up of not being able to roll over or lift my head, and then being able to use my arms and build my core strength, I didn’t want to take it for granted,” she said. “I don’t know what condition I’ll be in after this next flare-up.”
On the trail, Kozel said she keeps it from her mind and just marches on, determined to finish.
“For me, I feel this has become so much bigger than I am. And there are people out there that have been reaching out to me, and I just don’t want to let them down,” she said. “That pushes me on the days that I think, ‘What am I doing out here?’”
For everything that has happened to Kozel, she remains in high spirits, seeking purpose in her misfortune.
“I think it happened for a reason. It’s given me a different perspective on life,” she said, adding “There’s gotta be a reason for things that have happened.”
Kozel updates the world on her adventure on a public Facebook page.