Healthy Living

Lupus Couldn't Stop Woman from 7-Month Hike

Stacey Kozel hiking the Appalachian Trail. Photo Source: The Boston Globe. Craig Walker. https://apps.bostonglobe.com/graphics/2016/11/mountain-climber/

Stacey Kozel took a 2,190 mile hike on the Appalachian Trail. In this hike, she passed through 14 states, rugged terrain, and five national parks. “Iron Will” was the name her fellow hikers referred to when mentioning her.

It was about three years ago that she was in a wheelchair. At 41, Kozel took a hike to spread the word of what she can do with the amazing technology that makes the hike possible. She fought hard and managed to astonish many.

An autoimmune disease took her legs three years ago

At 19, Kozel was diagnosed with lupus – a disease that makes the body attack the organs and tissues. The autoimmune disease tends to attack any part of the body, but for Stacey’s case, it attacked the spinal cord and brain. She has experienced various flare-ups over the years, but the worst occurred in March 2014. The flare-up was severe to the extent that she almost become completely immobile.

She needed a power wheelchair when she was released from the hospital. She had quickly lost mobility and couldn’t lift her head or sit up. It was the worst feeling Kozel had ever experienced.

She learned about high-tech braces

When she was released from the hospital, Stacey got her laptop and started researching on ways that she can get back on her feet. At the time, her left arm was the only functional limb. After some research, she learned about a new technology called C-Brace. This technology was first introduced in the United States in 2012 by Ottobock, a German prosthetics company. The traditional leg braces only support the leg in the straight position. Patients can walk around but with locked-knee.

The C-Brace has built-in sensors and computers that can adjust automatically in real time and can support the legs in many positions, unlike the traditional ones. With this technology, people with post-polio, nerve damage and paralysis can walk naturally and smoothly. All they need to do is stand up without any help and have hip muscle function. Each brace costs $75,000, but Kozel never gave up on her goals of getting them.

She was the only one in her rehab team that had heard of the C-Braces. However, they supported her when she was battling her insurance company that had refused to cover this device. A year later, the insurer approved the claim, and she got the high-tech braces. That is when she got on her feet.

The C-Braces helped her hike the Appalachian Trail in March 2016

Most people didn’t believe that Kozel could hike the Appalachian Trail, but she never gave up. The hike wasn’t just a personal achievement for Kozel, but also a way to spread the word about the braces. She wanted those struggling to walk to learn of the braces so that they may try them out, too. She also wanted insurance companies to know the value of these devices.  Kozel said that if she didn’t have the C-Braces, she would have had to push herself in her wheelchair. Using the braces had enabled her to walk nearly 900 miles without assistance from anyone.

A long way to go – but not giving up

The Harper's Ferry, Virginia (commonly known by hikers as the “psychological halfway point”) takes most hikers about five to six months, but she said it could take her more time. It needs additional time since she has to charge her braces and rest. It was challenging for her, and she knew it was not going to be pretty or fast. Her hopes are that the hike will motivate others never to give up when faced with a challenge. Different people struggle with different things – lupus, disability, loss of job, loss of loved one. Whatever the struggles, she hoped that no one would give up. No one knows the positive things unless we keep going.

The seven-month hike

Kozel was prepared for a seven-month hike and knew she would pass through several states such as Tennessee, Georgia, Virginia, North Carolina, Maryland, West Virginia, New Jersey, Pennsylvania, Connecticut, New York, Vermont, and Massachusetts. An hour before her trek on 26th August 2016, her physical therapist and a friend, Sarah Czyz, joined her. Sarah had worked with her since 2014 when she became paralyzed. The two hiked slowly, and Sarah could help Kozel at times of need. Since lupus had damaged her lungs, they hiked slowly and often stopped so that she could catch her breath.

After the first twelve hours, they had completed half of a 3.3-mile trail, and by 7:30 p.m, the woods were getting dark. They turned on the head lamps and continued with the hike. On the first day, the braces had malfunctioned several times during the day. In the darkness, hiking was very slow, and by 11 p.m., her right braze had lost its charge and locked up. She decided to stop for several hours since her legs had swollen. She removed the braces so that blood could circulate.

Overcoming more obstacles

In the morning of 27th August 2016, they had not slept as they had spent hours lying on cold boulders. Arriving on Chimney pond trail, Kozel was relieved to see that her journey was yielding fruits. They were about to reach a campground. At 10:45 a.m. a ranger from Baxter State Park, approached them as he had been looking for them. He gave Kozel a written warning that she isn’t allowed to camp trailside. The ranger also told Kozel that the lead ranger at the park had advised against her attempt to go to the summit. The rangers told her that it was expensive to conduct a search and rescue operation and Kozel will have to pay for the expenses should the rescue operation be performed.

They charged Kozel’s braces should she chooses to continue to the peak or exit the park. Kozel was determined to continue. They sat with Sarah and came up with a plan on moving forward. However, Sarah was to bid Kozel goodbye, and she gave her encouragement to continue on the quest. On 28th August 2016, she checked in at the station before ascending. The ranger advised her to stand down as she was concerned for her safety. Kozel departed the station as she headed for Saddle Trail. She was more determined to complete the 2.2 miles. On her way up the trail, boulders blocked Kozel’s path. She had to remove her brace as she struggled to climb over. She spent an hour at the spot. Climbing the boulders wasn’t easy, and when she was successful, she was exhausted, and she had to rest.

At 6 p.m., the light was fading, and it started raining. Kozel began shading tears, and at that moment, she felt that she couldn’t make it and that she should head back. She hiked through the night as she headed back to the camp. She felt discouraged but tried to be positive. Every step that she took was painful as she was tired and was struggling to lift her heavy legs. After hours of hiking, she finally arrived.

On October 9th, Kozel completed the Appalachian Trail by submitting to Mount Katahdin. On reaching the peak, the wind was strong that it started knocking her over. She was pulling herself up while crawling on reaching the sign. She leaned against the sign as she tried to avoid the wind. She decided to get down. She started the Hunt Trail. She wanted to stop, but she could not find shelter. Eventually, she managed to go down the mountain.