This Girl Was Locked In Her Body For Years, But What She’s Done Since Is Beyond Astonishing

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A teenage girl lies immobile in a hospital room. For some time she has been unconscious – and now she doesn’t seem able to move. Doctors write her off, advising her family to accept that she will not recover. In fact, she will probably die. But although no one thinks Victoria Arlen can hear their predictions, she can, and she’s determined to overcome being locked in.

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Unresponsive in her bed, Arlen can hear the voices of her three brothers – one older, and two of her triplets. And they’re keeping her up to date with a world that she cannot take part in. Moving is impossible, but her brain continues to work. Unbelievably, it’s the only thing about her that does function. But her brothers don’t know that – and neither do the medics.

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Although it was a tough time for Arlen’s parents, they persevered. As her mother Jacqueline told Modern Hero, “There were times I was just in the fetal position going ‘this too shall pass’ because it went on for so long.” Eventually, Arlen’s parents took her home to New Hampshire so they could care for her in a converted hospital-room.

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Now before Arlen became paralysed, she had been a happy child with a huge appetite for life. And one of her loves had actually been dancing, having learned a range of styles. Furthermore, she also loved to swim, which she did in a backyard pool, a lake and for a team. In fact, she told ESPN, “Growing up, I was a water baby.”

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And Arlen didn’t just see these as pleasant pastimes. No, for she dreamed of winning a gold medal one day, and to go on to show Dancing With The Stars. And she had every reason to think that she would be able to achieve both, healthy as she was. As she would tell CNN in 2018, “I was the kid that never got sick.” But that’s not all.

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Indeed, Arlen would go on to say, “The likelihood of me being the one to go through all that I went through was not even on anyone’s radar.” Yes, in 2006 that good health came to an abrupt end. For Arlen fell victim to two rare autoimmune diseases: acute disseminated encephalomyelitis and transverse myelitis.

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Now transverse myelitis can strike out of nowhere, with a part of the spinal cord developing inflammation. Often this comes with damage to the material that insulates the nerve cell fibers, known as myelin. And because of the disruption to the spinal chord’s messaging system, it can bring all sorts of pain and weakness.

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If that weren’t bad enough, acute disseminated encephalomyelitis also struck Arlen. And this is usually an outcome of the immune system reacting to an infection, and inflaming the central nervous system. In doing that, it can even rip the myelin away from nerve cells. So, as you can imagine, the result can be incredibly debilitating.

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Shockingly, it would take doctors three years to figure out that these were the problems that had caused Arlen’s condition. And she would later discover that their diagnosis had come far too late for what would’ve been a relatively simple solution. That’s right, just a steroid shot, it turns out, could have saved her a great deal of pain and trauma.

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As a matter of fact, that trauma began with a bad pain in Arlen’s right side that wouldn’t go away. Before long, she could no longer walk or talk. Bit by bit, her functions slipped away, becoming unable to swallow. What’s more, she felt a crushing pressure in her head as her ability even to think started to vanish.

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Then a day came when Arlen’s ability to comprehend the world around her disappeared altogether. And her only memory of that day is being put into an ambulance before everything went blank. Astonishingly, it would be more than three years before she came to. But when she did, she found that although she could hear and see, she couldn’t tell anyone about it. Yes, she had become locked in her own body.

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At first, doctors were clueless about what had made this happen to Arlen. In fact, they suspected a psychiatric condition, and sent her to a section of the hospital that handled mental illness. There, staff would try to snap her out of her condition overzealously, which Arlen had to suffer in silence. For you see, she wasn’t even able to tell her mom and dad.

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That’s correct, and when Arlen later described her treatment in her book, Locked In, she’d say, “Even if the nurses and doctors here are convinced that their rough and cruel methods are helping me, I have to say that unkindness never makes things better. And even if my sickness were psychological, how would inflicting pain make me better?” Indeed, it did not make her any better.

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In fact, worse was to follow. Yes, because Arlen became afflicted with seizures. Over and over, she would be wracked with what felt to her like an electrocution. For 20 hours a day she would suffer, while horrified onlookers watched her suffering a torment which she could not communicate. And mother Jacqueline couldn’t believe how long it was lasting, either.

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Furthermore, because of her inability to achieve any form of communication, Arlen’s doctors assumed that she remained vegetative. But she was perfectly able to hear the prognosis that the medical staff shared with her parents. And a growing determination within made her not want to give in. In fact, she wanted to prove the doom-dealing doctors wrong.

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For the doctors told her parents that Arlen couldn’t recover, and a lifetime’s vegetative state awaited. Horrifyingly, she still could not let anyone know that she was not vegetative at all. She told CNN, “I’m thinking I’m having a full-on conversation, realizing I can’t move my eyes, and I can’t move my head. And no one’s responding to me.”

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On perhaps one of the worst days of Arlen’s condition, a physician informed her mom that she needed to prepare herself. For Arlen would now likely die, or at best be in a vegetative state forever. Heartbreakingly, despite hearing this herself, Arlen also had to prepare for the possibility that she would soon die.

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As despair took a grip, Arlen called on God for a second chance. And she promised to put it to good use. In fact. she told him that she would use her voice to help others if only she could recover it. Regardless of whether she enjoyed divine intervention, Arlen had reserves of inner strength that she put into gear.

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In an attempt to stop the seizures, Arlen’s medical staff gave her a sedative. And shortly after, something strange happened. Not only did the seizures stop, but the sedative interfered with whatever was making it impossible for her to communicate. Then, her mom realized that Arlen was actually looking her in the eye. “If you hear me, blink twice,” she called out, and Arlen blinked. But that’s not all.

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In fact, Arlen felt like yelling, “Here I am!” So she started blinking, and for the first time in years, turned her head and gave her mom a big smile. As Jacqueline recalled the moment to Modern Hero, “It was the most incredible day of my life.” And crucially, it was also the day that Arlen’s life began to return.

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From that day in December 2009, Arlen began to make progress. First, she managed to make sounds, which she fashioned into words in time, and then full sentences. Then, a finger twitch grew into a full wave. And from needing a tube to get any nourishment whatsoever, Arlen moved from sucking on a pudding to chomping on steak.

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To push things along, Arlen plunged into training all hours, getting back into control of her body. And to help her in her struggle, she came up with a motto. Yes, her way to beat each challenge that confronted her would be to “face it, embrace it and defy it.”

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Now it was slow progress, taking a year from the first smile to having control of her upper body. And Arlen underwent all sorts of therapy before, in time, being able to use a wheelchair. This helped her regain a measure of independence. Finally, the ability to live a normal life came into sight, although she remained paralyzed from the waist down.

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But the next challenge for Arlen was to graduate high school. Interestingly, when she had been struck down with her illnesses, she had only finished her fifth grade at school. Meanwhile, her triplet brothers had surpassed her by five years. Now she was determined to graduate in three years alongside them. However, it wasn’t going to be an easy ride.

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Far from it, because school brought Arlen new torment, particularly as she became the target of bullies. It was, she would later recall, the one time that she had felt down. But she was not going to give in, stepping up her efforts to catch up and overtake her schoolmates. Finally, she joined her brothers on their graduation day.

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Furthermore, to get over the burdens of school and her bullying, Arlen had sought solace in the sporting world. Joining Northeast Passage, a sled hockey club, allowed an outlet for her need to compete. And her coach at the club put an idea to her that captured her interest: why not try swimming?

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Getting in the pool seemed terrifying. As you would expect, Arlen doubted her ability to swim without using her legs. But the water offered a space where she could be free of her wheelchair, and she dived into it. She wouldn’t just swim, though. No, her desire to compete drove her to try for Paralympic gold at the London games in 2012.

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Now Arlen had six months to train, and her coach pushed her forward. In fact, she remembered him being the first person to recognize her as an athlete, not just someone with a disability. And what’s more, he watched as a month later she broke a world record. That’s right, when London rolled around, she was ready. Furthermore, scooping a gold and three silvers brought her right into the public eye.

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Touchingly, the paralympian returned to a hero’s welcome. You see, her hometown in New Hampshire held a parade, and she pitched a first throw for the Boston Red Sox. To add to that, she even hit a first puck for the Boston Bruins. And all this before she had even graduated high school. In the meantime, she also continued to do swimming training for 20 hours a week.

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And Arlen didn’t waste the fame that success in the Paralympics had brought her, either. Firstly, she embarked on a career as a public speaker, with the aim to inspire others to go after their dreams. Now within this was a recognition that not everyone would get the second chance that she had been afforded. Secondly, her visibility on the speaking circuit led to work with sports broadcaster, ESPN.

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Making no secret of where she was in life, Arlen appeared on ESPN in her “pimped-out wheelchair.” And separately, she tried to get across a particular message of hers: urging others to “Rock Your Disability.” In fact, she revelled in her status as a role model for those living with disabilities. But despite her burgeoning fame, one challenge remained.

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Indeed, Arlen started to ask whether she would ever walk again. Now her neurologist said that given her eight years of paralysis, he wouldn’t mortgage the house trying to achieve it. But Arlen wasn’t taking no for an answer. For she explained to Modern Hero, “We always say, ‘Accept the diagnosis, not the prognosis’.” And what would happen next would move the paralympian closer to achieving her goal.

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For Arlen found the help that she needed to tackle this new challenge in Project Walk, a paralysis treatment centre. Indeed, it offered the chance to receive good physiotherapy. But there was a small drawback – sadly, the center was based in California. Therefore, for her to continue to have the therapy, she would have to move across the country.

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However, Arlen couldn’t face living on the West Coast, far away from her parents and brothers. So her parents had a solution: they’d mortgage their house, and open up their own Project Walk in the east. And they did just that – Jacqueline now heads the Boston franchise. Most importantly though, the first client through the door was daughter Victoria.

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What’s more, in her therapy sessions Arlen told her trainer that she wanted to target a new goal. Yes, she wanted to be the first person in a wheelchair to take part in Dancing With The Stars. And he had a surprising answer. He said, “Why do it in a chair? Why not do it using your legs again?”

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So for two grueling years, averaging six hours a day, seven days a week, Arlen trained hard.Indeed, she was desperate to reactivate her central nervous system. Then, on a fall day in 2015, something incredible happened. That’s right, she had a tiny flicker in her right leg. That was encouragement enough, as she told Modern Hero, “When you see that spark, you got to fan the flame.”

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Off the back of that, Arlen went to work, fighting to get herself up and out of her wheelchair. And in the next year, the hard work paid off. Even though she still could not feel her legs at all, she trained herself to move them. And by 2016, she could walk, albeit with leg braces.

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Still, Arlen’s work wasn’t done yet. For again, someone told her that she couldn’t do something. And this time it was “don’t walk without the braces”, because the muscles in her legs wouldn’t come back. But in October 2016 she shed the braces and went with a friend to barre class. Back in the world of dancing, the realization of her dream came ever closer.

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You’ve guessed it, for in 2017 Arlen’s recovery came to its pinnacle. She span and leapt across a dance floor on TV, partnering Valentin Chmerkovskiy in Dancing With The Stars. And millions shared in her success as she danced her way to the semifinals, despite feeling like her legs were “asleep.”

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As Arlen told CNN, “I never in a million years imagined any of this.” She added, “The big thing for me is just continuing to be a beacon of hope.” And the paralympic champion has not stopped working, either, doing two hours of exercise a day to ensure she keeps her legs functioning. But it’s worth it, she said, to “[show] people that nothing is impossible.”

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