Immune & Autoimmune Diseases

The Impossible Walk

Insurance companies tried to confine Stacey Kozel to a wheelchair. Now she’s out to prove them wrong.

Stacey Kozel remembers looking out the window of the hospital. Her legs were paralyzed. She barely had the strength to move her head. “I was looking at the grass and trees outside my window and wondering if I would ever be able to walk outside again,” she says.

Just two years later Stacey is walking through the woods of Virginia, halfway through her journey on the Appalachian Trail.

The Appalachian Trail winds from Georgia to Maine through some of the most beautiful wilderness on the eastern seaboard. Hiking the AT is a hard. Only 1 in 4 hikers finish the 2,142 mile journey each year. But Stacy Kozel is in a league all of her own.

Stacey Kozel and a friend take a break on the Appalachian Trail.

Stacey Kozel and a friend take a break on the Appalachian Trail.

At age 19, Stacey was diagnosed with Lupus, an autoimmune disease that can damage any part of the body. Lupus affects Stacey’s central nervous system.

“Lupus doesn’t always affect the central nervous system, but in my case, since it was so high in the spinal cord, that affected my lungs, my breathing,” she says. “I couldn’t move at all.”

Her last flare up, in March of 2014 was her worst. She spent weeks in the hospital, unable to sit up or lift her head. After months of physical therapy, she regained the strength in her upper body but Lupus left her paralyzed from the waist down.

Lying in a hospital bed, Kozel was inspired to hike. “I’ll never forget those days. I’ll never forget looking out my hospital room. All of the days I’ve been there. I spent a lot of time in there wanting to get outdoors,” she says.

When she left the hospital she had to use a power wheelchair to get around. “I’m a very independent person, and being in a wheelchair meant that I was always relying on other people to help me” she says. Even getting out of bed required help.

When confined to the wheelchair she gained weight, had trouble breathing and felt like she was deteriorating. “I was losing my mind” she says. So she started doing some research. She found out about the C-brace, made by Ottobock. This high-tech brace uses sensors and hydraulics to allow paralyzed people to walk. By swinging their hips, the wearer engages the brace, which then moves the leg. A series of sensors in the bottom of the foot trigger hydraulics, which create a natural leg movement. Stacey has been told that there are only 200 braces in existence.

“When I found out about the C-brace I immediately knew it could change my life,” she says. “But no one else seemed to know about it and they cost $75,000 each.”

Her insurance company didn’t buy it.

“My insurance company didn’t think it was worth the money” she says. “They didn’t think it would work.”

Proving the insurance companies wrong, Stacey works on walking with her C-Brace.

Proving the insurance companies wrong, Stacey works on walking with her C-Brace.

Last August, Stacey used her braces to hike Mount Katahdin in Maine, the northern terminus of the trail. “I didn’t quite make it to the top, but it was so beautiful. I hope that after 2,000 miles of hiking I’ll be able to make it to the summit,” she says.

On the AT, she’s just like any other thru-hiker; she carries all her gear in a pack on her back and camps almost every night. And she’s learning to adapt to life on the trail. “When I started, I was hiking about 10 miles a day and it was awful. Now I do around 20 and it’s become a lot easier.” It still takes her longer than other hikers. “A lot of hikers hike 20 miles a day” she says, “But my day is sun up to sun down. It’s a long day.”

She still has to go into town about every two days, much more frequently than most thru-hikers, to charge her braces. Rain is also a hindrance. “My braces aren’t waterproof so I have to be careful crossing rivers and hiking in the rain,” she says. During her second week on the trail she spent two full days in her tent, hiding from the rain.

Lightening up her load has eased the journey. “I think every thru-hiker over packs at the beginning of the journey” she says. “It’s hard fit your whole life into a backpack.” The first thing Stacey sent home was a generator and solar panels to charge her braces. The generator meant she didn’t have to go into town quite as often, but their heft was too much. And the lighter loads mean more miles every day.

300 miles down, nearly 2000 to go.

300 miles down, nearly 2000 to go.

Still, not a day goes by that she doesn’t think about how nice it would be if she could use her actual legs. “I’m so appreciative of the braces and that I’m not confined to a wheelchair” she says, “but I just wish I could really walk again.”

While the hike can be slow going, Stacey is encouraged by the people she has met on the trail and through social media. “It has become bigger than me and I definitely will make sure I make it, if not for me, then for everyone who has been supporting me and encouraging me and telling me their stories,” she says.

She hopes that her hike will prove to the insurance companies that the braces really do work and can change someone’s life.

“My goal is to bring awareness to these braces and hopefully get more people out of wheelchairs and out exploring the world,” she says. “When insurance companies deny people due to ‘it is not necessary,’ I hope my story will prove the opposite.”