Locked In: The Will to Survive and the Resolve to Live Read online

  Both feet are beginning to burn like I am walking on hot coals. Sharp pain shoots up my legs. Every day, the pain creeps higher and higher, becoming more and more intense. The pain in my legs is the same kind of pain I feel in my right side. My right foot continues to drag, and now, my knees are buckling. Every time I stand, they give out right from under me, and I drop to the floor. I am determined not to have anyone help me, so I grab on to furniture and walls just to stay upright.

  Surely this is going to pass.

  Wrong.

  My legs are getting weaker and weaker. I no longer can wiggle my toes. The pain continues to escalate. And then, abruptly, one morning the pain is gone. As much as I want to celebrate being pain free, I’d rather take the pain than what was left after the pain … nothing.

  No more movement. No more function. Nothing. Deep down, I know …

  Something is seriously wrong.

  By late June, doctors in two major Massachusetts hospitals had labeled my condition as “psychological.” Unable to explain what is wrong the doctors use the label “psychological” to put some sort of label to my condition. The doctors continue to write me off and refuse to believe me or help me. In a desperate attempt for answers, my mummy takes me to an alternative healer in Connecticut. The healer is incredibly concerned and quickly makes a phone call. Before we know it, we are on our way to yet another major hospital, this time in New York City. At first, the doctors are genuinely concerned and run a series of tests. But as test after test comes back inconclusive, they scratch their heads. What causes a normal eleven-year-old girl to go from active and healthy … to this?

  After about a week of tests and failed physical therapy, one of the top doctors walks in, holds her hands up, and says, “I don’t know.” And then, she walks out, leaving us with nothing except a prescription for more physical therapy—and a wheelchair.

  Wheelchair?

  This is only temporary, right?

  My only experience with wheelchairs was when one of my fourth-grade friends broke his leg in a motorcycle accident. He had a really cool yellow chair, and I remember wondering what it was like for him to sit all day. I never, ever imagined that I would one day sit in a wheelchair, and that it would be the only way I’d get around for a very long time.

  This is when I truly begin to comprehend that my legs are not working. I cannot fathom or process the disconnect.

  Why can’t I walk?

  Why can’t I feel my legs?

  Wiggle, toe.

  Wiggle, please!

  All my life, I had been active. I’d run around and danced without any issues. And now? I can’t even wiggle my toes. I spend hours looking at my feet, desperately searching for any sign of life. Each passing minute creates more anxiety and confusion.

  HELP!

  If I could just be better in time for field hockey camp in July. I am determined to be a starter in sixth grade. But you have to be able to walk to go to field hockey camp …

  • • •

  The fireworks light up the sky, and people around the lake are cheering. It is July Fourth weekend. I am sitting in my wheelchair at my family’s lake house, confused and sad. I can’t run around with the other kids, and I am so sick that even sitting in my wheelchair is exhausting. Just last summer, I was running around with everyone and watching the fireworks, not a worry in the world. Now, I hold on to that memory like a lifeline. My sparkle and joy are slowly slipping from my fingertips. My world is imploding …

  What is happening to me?

  Where have you gone, Victoria?

  Why is nobody giving me any answers?

  Why won’t the doctors believe me?

  Am I really crazy?

  I know I’m not crazy and that what I’m feeling is real, but I feel let down by the medical world that keeps saying it is “all in my head.” I am getting worse, but the “experts” don’t believe me and don’t help me.

  My mummy is my constant source of hope. She refuses to accept that “nothing could be done.” Her faith in me keeps me sane and strong. But even she can’t stop what happens next.

  After that July Fourth weekend, my entire body begins to shut down, bit by bit.

  It’s as if the “circuits” that control my bodily functions are “clicking off” one by one. Like the circuits of the house that keep all the electronic functions working—the lights, the fridge, the TV—the switches to my internal circuit board are slowly shutting off. Function after function becomes increasingly difficult, until each one just shuts off.

  I, I, I can’t swallow.

  The food is getting stuck, Mummy.

  Eating has never been an issue for me. For as long as I can remember, I’ve had a never-ending appetite. Suddenly, eating is physically challenging. I try to swallow, but it feels like something is blocking my throat. Each swallow becomes harder and harder.

  Cough. Food is still there.

  Try again.

  Cough, cough, cough.

  Food is stuck.

  One more time, come on, Victoria.

  Cough!

  Cough!

  Starting to choke, help!

  These episodes become more and more frequent. The muscles in my throat and mouth become weaker and weaker. Until …

  The muscles in my throat no longer work … click.

  My ability to move my legs and toes was already gone, but now the ability to use my arms and fingers is dwindling.

  It’s like when a baby struggles to grab something. She knows she wants the object or toy, but she can’t find the coordination to get her little arm to the right place. She tries and tries until eventually, she finds her way, and movement becomes second nature.

  But I am moving in the opposite direction. Simple things like grabbing a cup of water become harder and harder. I want to move my hands and fingers, but they won’t cooperate. The connection is slowly disappearing—until …

  I can no longer control my hands and fingers … click.

  I’m requiring more and more help, and holding on to my independence becomes harder and harder. I exert all the energy I have to take care of myself. I fight for control and to stay the driver of this car, but it’s spinning out of control and flying down the highway at speeds I can’t control. It seems that each morning, I wake up to terrifying revelations that make me more dependent than ever.

  I lose my independence … click.

  Then, my greatest fear starts becoming a reality. I have moments when I can’t recall simple things, like who I am and where I am and who my family members are. It feels like my mind is short-circuiting, going in and out.

  These moments become increasingly frequent, and when they strike, my ability to speak becomes difficult. I know what I want to say, but I can’t find the right word or make the connection between my brain and mouth. Then I snap out of it, and I’m fine. One minute, I know who my mummy is, and the next I don’t. I keep going in and out of lucidity, and every time, I pray that I’ll snap out of it.

  My name is Victoria Arlen.

  My name is Victoria Arlen.

  My name is Victoria Arlen.

  My name …

  is …

  ?

  What’s my name?!

  What’s my name?!

  No.

  No.

  Please, no.

  Make it stop, please!

  My mental stability … click.

  In my rarer lucid moments, at least I have my voice. I can still communicate with my family and let them know what I’m experiencing. But then, one day …

  Can anyone hear me?

  Hello!

  My voice!

  My voice!

  Where is my voice?!

  Completely gone. I try to make words but can only produce strained, nonsensical mumbles and groans.

  My ability to communicate is gone … click.

  • • •

  In my fifth-grade art class, we used a vise, which would crank two metal slabs together to hold our artwork in place. It
looked like something out of a Viking movie. And it looked painful for the poor piece of paper.

  And now, that’s how I feel—like my head is being squeezed in a vise, and the pressure keeps getting stronger and stronger until it is unbearable. I lose consciousness because of the pain, and I want to throw up. No reprieve and no relief, just squeezing and constricting my brain. This headache goes on for what seemed like a century (but in fact was two days). Then it all goes dark.

  The final switch—lights out … click.

  Floating into a black hole, I am trapped in this darkened state, but I don’t even realize it. I’ve slipped away from myself, my family, and all that I know. I am trapped in a ghost of a mind, locked inside a body that does not connect with me.

  The Victoria my friends knew and my family loved is nonexistent. The lights are off and there is nothing left that works. Everything that made me, me. Gone.

  Victoria Catherine Arlen, born September 26, 1994, in Boston, Massachusetts, to Larry and Jacqueline Arlen … erased.

  Entering hell.

  3

  HELL

  Early August 2006

  After I lose my cognitive function, my parents again take me to the emergency room at a prominent children’s hospital in Massachusetts, where I am immediately admitted. While in the hospital, I once again have another battery of painful tests … with, once again, no answers. After a few days, my parents were taken to a conference room in the hospital and told about a “pain management and rehab facility,” which the doctors say could “help me.” My parents are desperate to get help for me, and there is concern that if I came home, I would surely die. At the time, they feel they had little choice but to agree or risk being charged with not properly taking care of me.

  The “pain management” facility is actually an older, run-down section of the children’s hospital. The rooms are similar to dorm rooms, and the walls are white and bare. My parents are initially unaware that it is actually an unmarked psychiatric facility, where visitation is restricted, and clearance is required to get in.

  During this time, I go in and out of cognitive awareness. But I have many memories of that time—most of which I wish more than anything that I could forget.

  In Sunday school, I learned about heaven and hell. Heaven was described as a beautiful place where God lived—a place full of love and light. Hell, on the other hand, was described as a very bad place where bad people go, where there is fire and torment, and lots of very bad things happen. But I learn during my time here that there are forms of hell on this earth.

  As I am wheeled into my new “living” quarters, I am disoriented and confused—but I have enough awareness to know that my parents are leaving me. They tell me over and over again that they love me and that they will see me again soon. I try to scream and cry out as my parents say good-bye, but the sound refuses to come out of my mouth.

  Please don’t leave me here.

  Please.

  After they leave, rough hands grab my shoulders, and I hear an aggressive-sounding male voice say, “Your parents are not coming back until you snap out of it. You can’t fool us like you’ve fooled them.” That is when I know that this is not a place of healing and help.

  They are not going to help me.

  They think I’m crazy.

  Please, let me out of here.

  Let me go home.

  I’m not crazy.

  I’m not crazy.

  I’m not crazy.

  I learn later that my mummy has a type of nervous breakdown on the drive home. Then after arriving home, she begins to research the place that is supposedly going to “help” her daughter. But she quickly realizes that I am not in a “pain management and rehab facility”—it is actually a psychiatric ward. My parents immediately begin searching for a way to get me out of there.

  I’m trapped.

  And they are gonna kill me.

  I remember them taunting me and telling me over and over again:

  “We don’t believe you.”

  “Snap out of it!”

  “Aw, your mommy isn’t here to help you now, is she?”

  It seems they are trying to inflict pain to “break me” to “snap me out of it.”

  I’m NOT pretending!

  Somebody help me!

  Please.

  Many of the nurses and nursing assistants are rough with me, but one in particular is the worst. I remember her being in her mid-fifties, heavyset, wearing big glasses, with blond-gray hair and a bowl-style haircut. Let’s call her “F.”

  In the mornings, “F” puts me in a cold shower and taunts me when my upper-body strength gives out and I fall. I am unable to swallow food, but because “F” believes I’m faking it, she force-feeds me. And when the food gets stuck, I cough and struggle for air. Only when I am barely able to breathe does she intervene and stop. And this happens over and over again. Needless to say, I will never eat a chocolate chip muffin or cherry yogurt again. The irony of which is that I have never been a fan of chocolate or cherry. She doesn’t even ask what I liked or disliked. Then, because I am “choosing not to swallow my food,” she and another nurse wheel me into a room where “F” aggressively shoves a nasal gastric tube up my nose and forcefully feeds me a liquid meal. Then, instead of leaving it in, she rips it out and repeats this process for every meal, three times a day. I will later learn that nasal gastric tubes can be left in, instead of being inserted and pulled out multiple times a day. When my mummy asks why they are not leaving it in, the head nurse says, “The idea is to make her eat again, and the only way we are going to do that is to make sure that the process is uncomfortable and not a pleasant experience.” Of course, my mummy is livid, but she has no control.

  I am often left alone, and when I need to use the bathroom, I try to get to the bathroom myself, oftentimes left to lose control of my bladder and pass out on the floor. I am frequently left on the floor for quite some time, so you can imagine the state I am in. My dignity is taken away from me over and over again with claims like, “You’re doing this to yourself,” and “It’s all in your head,” and “You deserve this.”

  I don’t deserve this …

  Nobody deserves this.

  I am already in a very confused state of mind, and this mistreatment makes me feel like a criminal who has committed a horrific crime.

  Please just let me go home.

  I have done nothing wrong.

  I’ve never understood why people hurt other people. Even when I was young, I’d get so upset when I saw kids being unkind to one another. I’d pray every night and ask God to make everyone love one another and help one another.

  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? If anything, love should be the core of any kind of treatment. Whether your situation is mental or physical, there should never be abuse of any nature for treatment. Inflicting pain does not take away pain.

  And one more thing: my pain is not all in my head.

  I’m a prisoner.

  In a painful prison.

  Not only are my parents given limited times to visit with me, they are not allowed to stay with me overnight—and the nighttime is when the roughest treatment occurs. I’ve always been afraid of the dark, and this place reaffirms my fear of the night.

  As the days and nights pass, I feel myself becoming weaker and less engaged. The medical staff has instilled so much fear in me that I no longer make eye contact with anyone. I keep my head hunched over. A brief glimpse of myself in the mirror reveals a gray, skeletal, defeated face. Sunken cheeks, glazed-over eyes with no trace of the sparkle that once danced there.

  How can that zombie in the mirror be me?

  Where is the smiley, energetic, silly girl?

  Where is that sparkle?

  I used to have a dimple on my left cheek, and it always showed beca
use I always smiled. Now my face is too gaunt for me to see that dimple. I can’t smile, I can’t talk, and I can barely hold up my head. I don’t want to see the horror on the faces of my family when they visit, and so I choose not to look into their eyes.

  I am powerless.

  There is no worse feeling than not being able to fight back.

  Why have you left me here?

  I will later learn that my family is desperately trying to get me out of the facility. They are told that they can’t remove me because I need psychological help. But they instinctively know that this place will kill me if they don’t rescue me soon. They work hard to assemble a team of lawyers and doctors, and they begin to come up with a plan to get me discharged. Meanwhile, I am fighting to survive.

  In the midst of this living hell, one nurse is kind and caring and truly means well. She takes care of me and advocates for me, and when my parents come to visit, she lets them know that I don’t belong there and that they need to get me out.

  But unfortunately, this nurse isn’t frequently assigned to me. Apparently, “F” has taken a “liking” to me and seems to always be assigned to me. When my parents visit, she tries to convince them that I am putting on a “show” and that when they aren’t around, I am “perfectly fine.”

  My body is shutting down and slowly failing me. I barely have the energy to keep my eyes open. I’m not sure how much more I can take, but I keep trying and fighting. “F” and many of the nurses relentlessly try to get me to “snap out of it.” And their tactics are not necessarily humane. I wouldn’t wish what they did to me on my worst enemy.

  This is it.

  Give up the fight.

  Just make it stop.

  How much more of this can I take?

  By now, I barely have the energy to keep my eyes open. I don’t know how much more I can take, but something within me keeps trying.

  Try. To. Fight.

  Take. Back. Your. Dignity.

  I, I, I, can’t.