Story by: Jack Frederick
Photos and video by: Landon Cooper and Kathy Soule
Anastasia Soule felt sick, but she’d long been looking forward to the weekend ahead of her.
Years before she boarded a plane at Raleigh-Durham Airport for New Orleans, Soule declared it would be the destination for her 21st birthday weekend. The Louisiana city was where her parents had one of their first dates, and it just felt like the right place to kick off the summer between her junior and senior year at UNC.
With her birthday falling over Memorial Day Weekend, Soule planned the trip and invited her mother, Kathy, to fly from Asheville and meet her there — mapping out a full weekend of good food, drinks and music for just the two of them.
“I felt so honored that she wanted to be with me on her 21st birthday,” Kathy Soule said.
But as she took her seat on the plane, Ana, as her friends and family call her, felt a sharp pain in the back of her neck and early flu-like symptoms setting in.
She hoped she’d feel better by the time the wheels touched down two and a half hours later, but ignored the possibility something was seriously wrong with her.
By the time she landed, her body felt numb and her fingers and toes tingled. A marathon runner, Ana was in excellent physical condition. But when they started the sightseeing, she asked her mother to stop and rest at every store.
That should have been the first sign something was seriously wrong.
‘Something was viscerally wrong’
The first drink Soule ordered on Friday night, her birthday, was a hurricane.
Months later, it takes a moment for her to recall that detail. After all that she lived through, it feels insignificant and trivial. Only hours after sipping on the fruity cocktail, her celebration took a nosedive.
At dinner on Saturday night, Soule could no longer cut her own food. Her fork and knife kept falling out of her fingertips without the strength to hold onto them. It was as if she no longer had control over her body.
When she went to bed, she still planned to go back to Chapel Hill the next morning and begin her summer working for the Campus-Y Office of Entrepreneurship. It was only a cold, she thought, and once she got back, her sister Mary-O, a UNC student two years younger, could take care of her.
By Sunday morning, though, Soule knew there was no way she could leave that day.
“I woke up and I knew something was viscerally wrong,” she said.
Her speech was slurred. She had double vision. She kept falling down. Her legs, the ones that carried her to qualifying for the Boston Marathon six weeks earlier, were now failing her. They needed to go to the hospital.
After dropping off their luggage at the front desk, Kathy alerted the family they would be missing their flight. Mary-O, who was supposed to pick her sister up at the airport, figured Ana was just hungover.
Meanwhile, Kathy and her oldest daughter began the slow, painful trek two blocks to Tulane Medical Center.
“I literally dragged her,” Kathy remembers. “I don’t even know how we walked there. I was just so panicked.”
When they arrived at the emergency room, Soule was admitted immediately. Within two hours, she was already in ICU. The rapid onset of paralysis is often the sign of a deeper, life-threatening illness, and doctors wanted to run tests as soon as possible.
With the Centers for Disease Control interested in her case for its similarities to a rare polio-like illness that has been popping up across the nation, Soule’s hospital room became a revolving door for medical staff. Doctors floated the possibilities of botulism, Multiple Sclerosis or ALS. None of them quite fit.
What they eventually discovered was that Soule had Guillain-Barré Syndrome (GBS), a rare neurological disorder that caused her immune system to incorrectly attack the nervous system, which controls the brain and spinal cord. Instead of killing the virus inside her, Soule’s body was shutting down its own functions altogether.
The National Institute of Neurological Disorders and Stroke estimates that only one in 100,000 people will be affected by it each year. Soule had just become that one.
‘Running is the one time I carve out for myself’
Ana has been a runner her entire life. It’s in her blood.
Her father, Bobby, starred as a five-time Big Eight Conference champion on the Iowa State cross-country and track teams in the 1980s. When he became a dad, he instilled that love for the sport in his kids.
The family ran together from the time Soule was a little girl. When she reached middle and high school, her own track and cross-country career began — and she was good too.
As a specialized mid-distance runner at T.C. Roberson High School, Soule was part of an All-American distance medley relay team. On her own merit, she garnered the attention of smaller colleges for her running prowess, but she chose UNC instead for its academics. When she reached college, she decided to transition into longer distance on her own, setting her sights upon marathons as a New Year’s resolution in 2018.
Ana didn’t run just for the exercise. She ran for the way it made her feel to find her stride outdoors, away from the busyness of her life.
“Running is the one time I carve out for myself…” Soule said. “It’s my meditative time and also when I have my rawest thoughts. It’s just time to disconnect from everything.”
Soule is very active on campus at UNC. But she says no matter how full her schedule is, she always makes time for a good run. So it was unusual that as she lay in the hospital bed, she missed a run for the first time in days.
As GBS continued to set in, the side effects became more extreme. While medical professionals still don’t know what causes it, they think it can be spurred from a cold or recent immunization.
In the worst cases, the syndrome accelerates over several hours until the nervous system is so damaged that neural messages from the brain are no longer transmitted to the body. When that happens, a state of paralysis, that can last as long as a month, sets in.
On Sunday, Soule started to feel her muscles weaken even more. Her face began to feel frozen and her arms and legs felt heavy. Then her fingers were even too heavy for her to lift.
“They told me, ‘Yeah, you’re going to stay the night,’” Soule said. “The whole time, I had no idea how long this whole thing would last.”
‘I was paralyzed’
As Anastasia Soule lay paralyzed in a hospital bed, her favorite time to decompress had been stripped away.
With wires running all over her body and a breathing tube down her throat, she only had control over a small wiggle in her left hand. There was no way she’d be running anytime soon.
“You’re dead weight,” Soule said. “All the little micro repositioning we do every day just to stay comfortable you’re not able to do. So I would rely on other people to turn me to avoid bed sores and stuff like that.”
It was painful for her body to attack itself, so doctors kept her in a near-medically induced coma. She floated in and out of consciousness, remembering a new doctor every time she woke up.
“I just wanted to sit up to talk to them,” Soule said, “but I couldn’t because I was paralyzed.”
Kathy Soule feared the worst.
“I even went and got the priest in New Orleans because I was scared the first week,” Kathy Soule said. “I didn’t know that she was going to make it. It was that bad.”
Ana’s mother worried her daughter would be in that condition the rest of her life, or even worse, the celebration of her 21st birthday would be her last.
The doctors told Kathy Soule there wasn’t much they could do for her daughter until — or even if — she passed through the worst of it. With Ana sleeping most of the time, her parents tried to keep Spotify playlists of her favorite music, she likes Indie, and podcasts like “This American Life” playing to keep her calm when she was awake.
Soule hit rock bottom two weeks after her birthday, and from there, she started to climb her way back up. Her parents brought in an alphabet board to try and communicate with her, going line by line to choose letters, even though it took minutes to complete simple four-letter words.
Just getting to communicate was enough.
One day, in the midst of her struggles, Ana spelled out ‘I love my life’ on the alphabet board, even though it took a lot of strength to do so. It stuck with her parents for the rest of her recovery, that if she could stay positive, so could they.
“The whole experience made me realize that life is so precious in the sense that anything can happen to you and your body could give up on you at any second,” Ana Soule said. “But also on the other side, it made me realize you have to take advantage of everything you can.”
By mid-June, Soule was declared medically-stable and she was airlifted from New Orleans to Shepherd Center in Atlanta, where specialists in spinal injuries would help her get her life back.
“It’s almost like your worst nightmare,” Kathy Soule said. “But then it was like a miracle unraveling before our very own eyes.”
Shattering expectations
Anastasia Soule shouldn’t be back in Chapel Hill yet. But she is.
It’s November and she shouldn’t be walking around campus or taking classes, let alone getting back into running. She may still be recovering, but here she is, doing what was taken away from her again.
In mid-June, doctors at Shepherd Center in Atlanta told her she wouldn’t walk for months. They said it might be until September, October — or even later — before she would be strong enough to take her first steps again. According to her, that was the hardest day of her whole experience.
“That day, I was devastated,” she said.
That meant her plans of graduating on time would need to be put on hold, though she could probably return in January 2019.
“As soon as they told me that, within two weeks I was walking,” Soule said. “I was like, ‘I am getting out of here.’”
“I am so impressed, but not shocked that she did it,” Mary-O Soule said. “That’s just her personality.”
A marathon runner doesn’t let others dictate her pace. Even though she was on an unfamiliar course, Soule knew recovery would come on her own terms. And it did.
Running, living again
A month after taking her first steps without help, Soule ran her first mile.
“That was the most difficult mile I ever ran,” she said.
In high school, she consistently ran a 5:20 mile. Now, she clocks in at a 9:20 pace — but she’s finally back to doing what she loves to do.
Soule worked hard to get there. At Shepherd, the staff set her on a rigorous physical therapy schedule from 8:30 a.m. to 4 p.m. to reduce her muscle atrophy. As part of her training, she started walking with a harness, then without one, then slowly reintroduced running a few feet at a time.
“The first time (running again) was heavy and it felt awkward,” she said. “Everyone was really excited and I was excited I did it, but it just felt so off.”
She kept running until things felt right. While she wants to be a marathon runner again, she is setting her goal upon running The Atlanta-Journal Constitution Peachtree Road Race, the world’s largest 10K through downtown Atlanta, first.
As a patient over the summer, she cheered on runners during that race. While high-fiving the participants from the side of the curb, she made a vow to herself she’d run it the following year. The course runs right by the hospital where she spent most of her summer.
It’ll be her way of remembering what she overcame and honoring the fellow patients who’d endured injuries that prevent them from recovering the way she did.
Soule was discharged from the hospital one week before fall classes began after 77 days as a patient. In that week, she went home to Asheville before jumping back into the routine of her ‘normal’ life.
Since then, Soule has continued to run. By now, she can run almost three miles again and she plans to work her way back to longer distances.
Though her life has started looking and feeling like it was before she got sick, she’s still in the process of recovering — even as parts of her life are exactly how she left it. To assimilate back into her old routine, she is taking a medical underload of three classes and taking the recovery day by day.
She’ll still graduate on time, though she may never forget what she lived through this summer.
“In a way, I sort of have survivor’s guilt because after being in that world and experiencing it and then now, it’s weird,” Soule said. “It’s like the Thomas Wolfe quote, ‘You can never go home again.’”
“As of right now, I’m just trying to take it one mile at a time.”
I am sniffling as I write. An amazing account, well written. I must add a thank you Lord…for Ana’s, her family’s and everyone’s prayers and positivity. Her future looks very very bright. Love, Aunt Lee