Once Paralyzed, Victoria Arlen Emerged from a Coma to Become a Champion Athlete

The paralympic gold medalist opens up about waking up from a coma, living with paralysis, and learning to walk again.

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Oct 26 2016, 7:29pm

Earlier this month, the journalist and paralympian swimmer Victoria Arlen strode onto stage at the espnW summit in Los Angeles. For her, the very act of walking was a major accomplishment: For ten years, Arlen had been paralyzed from the waist down, and she'd been in a coma for three.

Growing up, Arlen says, she was a "typical child." At ten years old, she was healthy, already a competitive swimmer; when she turned 11, however, she began experiencing strange symptoms. It started with the flu, then pneumonia. Then Arlen began fainting unexpectedly. Neither she nor her parents understood the severity of her recurring illnesses. She describes habitual trips to her primary care physician, who tried to treat her ear infections or fevers, without knowing that a rare disease was whittling away at her spine.

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Within a year, one of Arlen's feet had begun to drag. She was slowly losing control over her body. "I was still little," Arlen said. "I didn't grasp it." Then she rapidly lost the ability to get out of bed, and to walk altogether: "There was nothing left in my legs," she recalled. Arlen describes this early experience of paralysis as frightening, but she also believed that she was going to recover, and still didn't really understand what was happening to her. Neither did her parents, nor did her physicians.

The days and weeks passed with Arlen still unable to move her legs. She hoped to get better—but instead, Arlen found that other parts of her body had started to slip out of her control. Her fingers wouldn't move. Then she lost her ability to speak. "It was as if someone was shutting off all the switches of my main control system," Arlen said. Eventually, she slipped into a coma.

Two years passed beyond Arlen's awareness; at some point during that time, it was finally discovered that she had an autoimmune condition known as transverse myelitis (TM), which attacks the spinal cord and can cause varying degrees of paralysis. The National Institute of Neurological Disorders and Stroke states that, though many people with TM do recover, "if there is no improvement within the first 3 to 6 months, complete recovery is unlikely."

Arlen still distinctly recalls the moment at which she regained consciousness. "I remember vividly having this inner awakening inside my own body," she said. She didn't realize what was happening at first, unaware at first that two years had passed or that her parents and doctors did not know she was conscious. Arlen wondered why they couldn't hear her, not realizing that the words she was saying were only thoughts inside her head. "I was talking in my head clear as day," she explained.

I realized, Something's really wrong.

Arlen was able to see, but she couldn't move her eyes, meaning she could only see in the direction her head was pointed. "I realized very quickly no one could hear me," she said. "I realized, Something's really wrong." She began to piece together what happened by observing the world around her, and by listening to conversations between her doctors and her parents; at one point, Arlen overheard a conversation about the Super Bowl. Because she had lost consciousness in the summer, Arlen knew that at least six months had passed, if the Super Bowl—an event held in the winter—was approaching. But she says that she realized much more time had passed by listening to Good Morning America with her mother and father, who tuned in to the show in Arlen's hospital room. A sense of urgency came over her. "How do I get out of this?" Arlen remembers thinking.

The prognosis at that time was "grim." Arlen recalled dark conversations overheard from her hospital bed. "I was either going to be a vegetable or I was going to die," she said, relaying conversations doctors had about her. "I was never going to speak again, walk again, move again," she continued. One day, she heard two doctors talking when her parents weren't in the room. She says the doctors were ridiculing her parents for having faith in their daughter's recovery. They considered Arlen "a goner." But while the physicians charted Arlen's path toward death, her parents remained optimistic and encouraging. Arlen says she "channeled" their energy, placing her faith in them, as well as in God. She would get better.

That patience and perseverance kept her sane for another year lost in the fortress of her paralyzed body. Then, one day in winter of 2009, a hidden passageway appeared. "I made eye contact with my mom," Arlen said. "That was my doorway." Once eye contact was made, Arlen says her mother asked her to blink twice, to communicate whether or not she was really there. She had slowly regained some muscle control, and could blink. "I'd been praying for a sign to give them," she said. It was their "Christmas miracle."

They said I'd be paralyzed the rest of my life.

Once that hurdle was behind them, the rest of Arlen's recovery took off. She returned home, and slowly began achieving greater control over the rest of her body. She began doing speech and physical therapy, "learning how to hold my head up again, learning how to speak." By the following autumn, Arlen was well enough that she could return to school. She was in a wheelchair, and she couldn't eat food, but she was able living her life as normally as possible and still striving forward in recovery.

The achievements that Arlen made in the next three years would be impressive for any child. She managed to complete five years of education to graduate on schedule, and she resumed her as an athlete, stepping back on the track she fell off of years before. "One thing that didn't return was my legs," Arlen said. "They said I'd be paralyzed the rest of my life and I needed to get used to being in a wheelchair."

Living with that diagnosis, Arlen feared that she'd never swim again. "But my brothers disagreed," she later wrote in an essay, "so in 2010 they threw me into our pool." Though she was initially terrified, Arlen was surprised to realize that she was still very capable in the water. "It was the 'jump' I needed to get back to my life. When I was swimming, I was free from the chair," she continued.

In 2012, when she was 17 years old—six years after falling ill—she competed in the Paralympics in London, where she won three silver medals and a gold, setting a world record in the 100-meter freestyle race. Arlen describes this a major life accomplishment, but she says she still considers that moment of eye contact with her mother to be the most notable thing she's ever done. "I've gotten to do so many amazing things. I get to work for ESPN, and I've won a gold medal. I've achieved a lot, but that was my biggest achievement because that was my doorway," she said.

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Just a few months later, however, she was disqualified from the Paralympic Swimming World Championships in Montreal after the International Paralympic Committee (IPC) ruled that her condition was not permanent—even though her legs were still completely paralyzed at the time. "Being penalized for maybe having a glimmer of hope of one day being able to walk again is beyond sad," she told the New York Times.

Though he was frustrated and disappointed by the IPC's decision, Arlen continued physical therapy in the hopes that she would one day walk again. "I trained seven days a week—three, four, five hour days of just training," she said. Her results astonished the doctors, who had said her spine had suffered permanent damage.

A year ago, Arlen experienced a "flicker" in her legs. "From there, we kept going and going, and then I was up on crutches and these big honking braces in January," she said. By March she was able to take a few steps, in May she no longer needed braces. In terms of her future, Arlen says there's no telling how far she will go. The fact that she has been able to walk since May is itself surreal. "My mom calls it the tragic, beautiful journey," Arlen added.