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

by Victoria Arlen

  I don’t want to fight anymore.

  I feel desperate to live but even more desperate to leave.

  In many ways it feels as if I am stuck between two worlds. What if I just quit trying? Maybe that’s my way out and I can leave the struggle behind and die. Be free, finally. I cannot remember the last time I felt free. I am in excruciating pain and feel so sick that death seems welcome. Pain and suffering have become my identity and my existence. And I just pray that God will have mercy on me and take it all away.

  One particular night in the facility brings me head-on with the possibility of death. As bad as things have been, something is different this night, very different. My heart is racing, and the pain is at its worse. My breathing is labored, and my body starts convulsing. I am dying. My body, curled in a fetal position, is giving in and giving up.

  So this is what dying feels like.

  I am alone in my room. The staff has locked the door. I try to scream for help, but I can barely breathe. I look out the window, up into the sky, and have this terrifying realization that this is the end. My body has fought all it can fight, and it is time to let go. The pain is increasing, and my breathing is decreasing. My body writhes and shakes and feels as if it is going to explode. My head spins. Everything is tense. I can’t even cry. The only comfort I have is from my blankies that Mummy left with me—the ones I’ve had since I was a baby. The soft, familiar fabric provides a small comfort, and for just a moment I close my eyes and feel like I am home.

  I wanna go home.

  Please, let me go home.

  I wanna go home.

  Reality quickly rips me from this bliss as I look over at the doorway and my empty room, with its concrete white walls and dirty ceiling tiles, and realize the most devastating part about this: not only am I going to die in this cold and horrible place, but I am going to die alone. All alone, with nobody to comfort me or hold me. Never being able to say good-bye to my family or my friends or the life I left behind. Never being able to swim again, dance again, play hockey, go to school, drive a car, or even have a boyfriend. Never being able to live again, see the world, and smile and laugh. My left dimple forever a distant memory captured in photographs and home movies. My big brown eyes forever forgotten. I honestly can’t remember the last time I smiled and laughed. The doctors will not even care and, if anything, will probably be happy to have the room open up. After all, they thought I was crazy anyway.

  This is what they wanted.

  They broke me.

  And nobody will ever know what truly happened here.

  Nobody will ever know the horrible things the doctors and nurses did to me.

  The horrific things they said and did to me.

  And

  They’ll never know how hard I fought and how much I endured.

  I’ll be silenced.

  Forever.

  And they will keep hurting other children like me.

  But at this point I am so sick and in the worst pain you can imagine. All I want is for it to be over. Even if that means dying. I can’t even cry, no matter how hard I try. There is literally nothing left. My body is done, and I am done.

  I know that I am so close to being free, no more pain, and so close to leaving this painful world. I welcome death like an old friend. A friend I never knew I ever wanted until this moment. I yearn for freedom and a pain-free moment. Just a moment to smile and breathe without feeling as if I am being stabbed. At this point death seemed like the only good option. The world around me was far from ideal and the thought of staying and suffering any longer is unbearable. I can’t take any more. I never wanted to die or give up, and I am terribly afraid—not necessarily of death itself, but of leaving everyone behind and not having the chance to live and accomplish my dreams. I’m also more afraid of living another day in this hell. If I had the strength, I probably would’ve already killed myself.

  I’d had such big dreams since childhood. No gold medal, no acting, no being a television host or on Dancing with the Stars, and no changing the world. These were dreams, among many others, that I promised myself I would achieve one day. Unfortunately, that day would never come, those dreams were stolen from me by these nurses and doctors. They are determined to break me; they win.

  I’m sorry I wasn’t stronger.

  I’m so sorry.

  As I lie there dying, I can’t help but think about how my story is ending and how defeated I feel. I am a victim and there is no worse feeling. And as an athlete, there is no worse feeling than losing. I have lost the biggest battle of my life. Literally.

  This is not how my story was supposed to end …

  Dying is awful, but dying because of others’ actions and mistakes is a whole different level of awful. Even at eleven, I know that this is not how my story is supposed to end. I have not even come close to living the life I had imagined. But I just know I can’t fight anymore, and I have to let go. I know I have been strong, but it is truly time to hand it over to God. I just can’t help but pray.

  Please God, please help me.

  Tell my family that I love them.

  Tell them that I’m sorry.

  I never wanted things to end like this.

  Please watch over my mummy especially.

  And let my parents know that it wasn’t their fault.

  The thought of leaving my family terrifies me. When you’re a triplet, there’s a lifelong commitment to stick together. Come into this world together and leave together (or something like that). My older brother, LJ, is my teddy bear and protector. I haven’t even brought a boy home for him to interrogate. And my parents—oh, my parents. I know they could never live with themselves if I were to die here, especially alone.

  I know deep down that I have not truly lived yet. I need to find everything I have to stay alive. But the will to live compared to the thought of leaving this hell behind is too much to bear. So I pray, harder than I have ever prayed.

  Please God, save me from this hell I’m living in.

  I don’t want to die.

  But I can’t live any longer here.

  Please, God.

  Don’t let me die here.

  Save me.

  I’m afraid to close my eyes because I don’t know if they’ll open again. Fear takes over my body like a ship taking on water, desperate to stay afloat but aware of its demise.

  Stay awake, Victoria.

  Stay alive.

  Don’t be afraid.

  Be strong.

  Fear is an all-encompassing and confusing emotion. You never know how hard it will hit you or what will cause it. Later, I will know that many factors contributed to the fear I am feeling, but deep down I am afraid of being alone, of suffering in silence and leaving without ever having a chance.

  How can my story end like this?

  Abused.

  In pain.

  Alone.

  A victim of this sickness and this horrific place.

  I want to live and be free, but I know that this is not a reality and, frankly, impossible at this moment. The cost of surviving any more of this hell is far too great of a debt that I cannot pay.

  I cannot fight anymore.

  I’m sorry.

  I’m so, so, so sorry.

  I struggle to find the strength to die with dignity. To not cry. To not be afraid. And to be strong and remind myself that I fought hard.

  Dear Victoria:

  You did so well. You’ve lived a good life. You figured out math and always got good grades. You swam fast, loved your family, and always lived boldly. Your smile could light up a room and it will light up in heaven as well. You fought hard. And you did NOT give up. Unfortunately, the pain and this sickness was a bigger battle than anyone could’ve imagined. And in this place, you were outnumbered. An army of one fighting far too many enemies with weapons far greater than yours. And I know this wasn’t how you planned your life or how it would end, but it’s okay. Sometimes, things do not go as planned. But do not be afraid. Although it wa
s a short life, it was a good one. A really, really good one. A life never to be forgotten. It’s time to get your wings and finally be free.

  Jesus, please take me.

  To God:

  Thank you, God, for a beautiful life. Please surround my family with your love and mine. Let me shine over them every day like the rainbows I used to draw for as long as they will live. Let them know that I am always with them. Please hold them when they cry out to me and protect them when the grief is far too great to bear. And please, let them never forget how much I love them. And please, let my brothers live boldly and fearlessly with me as the wind beneath their wings.

  To My Family:

  First and foremost, thank you for the most incredible eleven years. I can’t help but smile when I think of all of you and how much fun we all had. From the lake house, to the hockey rink, to skiing, dance parties, and the many fun trips and adventures, being a part of this family was by far the most incredible gift from God. I was beyond lucky to have you all in my life. And I am so sorry that things had to end like this. There truly are no words that I can begin to put together to say how much I will miss all of you and how much each of you mean to me. In fact, I honestly think that the reason I held on so long was because of all of you. I tried so hard to fight, I truly did, because I wanted more time with all of you. I’m sorry that we couldn’t have more time. William, Cameron, and LJ, you boys were the best brothers a girl could ever ask for. William, I’ll miss watching you play hockey and playing street hockey with you and climbing trees pretending we were monkeys. Cameron, I’ll miss your hugs and how you always made me laugh and called me beautiful. I’ll miss being the “three musketeers” and how we did everything together. And LJ, I’ll miss the way you protected me, watched out for me, and always made me smile. You were the best role model and big brother and I will never forget all that you did for me. Boys, I hope you all live boldly and fearlessly, and I pray that my passing does not take away your joy and your smiles. I pray that you all live beautiful and incredible lives. You’ll know I’m with you wherever you go. You may not see me, but know I’ll be there always. I will never leave your side. And finally, Mummy and Daddy, thank you for always trying to help me and loving me so beautifully and passionately. It pains me that you’re not here and I know that you are fighting for me and will never stop. Although this fight unfortunately was not how we planned, please know that I know you did EVERYTHING to help me and this was NOT your fault. I love you more than life itself and wish more than anything I could have one last snuggle with you both. I’ll miss your smile, Mummy, and how you lit up a room everywhere you go. And Daddy, I’ll miss your laugh and all of your silly shenanigans and you calling me Tweetie Bird. It makes me sad to know that you won’t be able to walk me down the aisle when I’m grown. I’ll always be your little girl. I wish more than anything I had more time, but I’ll see you all very soon. This was never how I planned things nor was this how I was planning to spend my last moments. But please know that I love you all so much. And I’m so sorry that I could not hold on. Live with light and love and without fear, for me.

  I’ll keep watching over you, always.

  I am afraid, but I am trying to find meaning and peace among the chaos and pain.

  Please, just make it quick.

  I can’t take this anymore.

  Please.

  Please.

  Suddenly I’m reminded of a Bible verse. “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.” Joshua 1:9 (NIV)

  Please, God.

  Be with me.

  Make it quick.

  Let me go.

  Let me fly free.

  I’m really scared … But then I remember …

  “Fear not, for I am with you;

  Be not dismayed, for I am your God.

  I will strengthen you, Yes, I will help you,

  I will uphold you with My righteous right hand.”

  —Isaiah 41:10 (NKJV)

  The fear, to my surprise, quickly disappears as this incredible calmness and love surround me. I can only describe it as the love of God. He is holding me, and I know that whatever happens, it’s going to be okay. At even one of the worst times of my life, God is by my side, holding me, loving me, and protecting me. Even though I’m alone in the flesh, I know I’m not alone with God by my side. I am at total peace. If I stay or if I go, I am at peace.

  It’s gonna be okay.

  I say my thank-you prayer to God and slowly and peacefully try to close my eyes.

  “Victoria?”

  What?

  “Victoria, wake up. It’s Mummy.”

  Mummy?

  Is it really you?

  My mummy rushes into my room with two paramedics and a stretcher. “Mummy’s got you; we’re getting you out of here.” I hear her say this over and over again.

  Am I dead?

  Is this a dream?

  I’m bewildered and don’t even have the strength to move or motion to let her know I hear her. I’m quickly put on a stretcher and they begin to roll me out of the facility. I look around at the bare walls and the nurses and doctors standing in the hallway. And then I see her, the one who made my life a living hell—“F.” I want to yell out like a little schoolgirl, “Ha, ha, you can’t catch me!” Instead, I say it on the inside and picture her getting smacked by an angry dolphin.

  My parents and their lawyers had come up with a ploy to “transfer” me to another psych facility closer to my home. But in actuality, the paramedics are transferring me to a local hospital near my house where doctors actually take proper care of me and my medical needs until I’m stable enough to go home.

  Ha! Ha!

  Take that!

  But all I can truly say is …

  Thank. You. For. Saving. Me.

  On the day I left that facility, I learned that God always answers our prayers, but just not when we want or how we expect. But this timing doesn’t matter, because I am saved, and I am free from the hell I’d been living in. I know the battle isn’t over, but this is a good start.

  The lights will eventually go completely out, but for now, I am safe with people who love me and want me to get well.

  4

  DARKNESS

  Late August 2006 to December 2008

  Darkness. In the dictionary it is defined as “absence of light, obscurity, and lack of knowledge or enlightenment.” I would say that this definition perfectly sums up the time between mid-August 2006 to late December 2008. During this time, I am very frail and fragile physically and mentally. My brain is in distress, and I am in and out of various states of consciousness. At times I am lucid, but I am what many would describe as a ghost, unable to comprehend even the simplest of tasks and activities. Often, I am unaware of who I am, where I am, and who those closest to me are. I am lost, so lost. It is incredibly hard to write about this period because I honestly have little to no recollection of it. So, it’ll be brief.

  My life and routine are simple. Due to lack of answers and explanations, my family often just has to take it day by day. Whichever state I am in, they just have to “roll with it.” My family doesn’t stop fighting for me—to find answers—and loving me unconditionally. I honestly feel bad for them. I am not living; I am merely existing. And yet they still take care of me and show me so much love and support and kindness. Most of us think, Well, of course, that’s what families do. But I’ve learned that not all families do that. Most people get tired or weary, and they “can’t handle it.” I’ve heard firsthand that this phrase is more common than you realize.

  Still with little to no answers, my mummy searches far and wide for a treatment or cure to get her daughter back. She loves me unconditionally and takes amazing care of me. Our family tries to be “normal” and get back to living outside of the hospital. Most of the time I’m able to be at home. My health stabilizes and does not worsen; it is somewhat of a reprieve compared to w
here I was not too long ago. My mummy finds various holistic healers and ways to keep my body alive and somewhat stable. Doctors are unable to determine what is causing my condition but are able to get on top of what is causing the pain. The worst pain you can possibly experience is nerve pain, and that is what my body is riddled with. After various attempts with different medicines, the doctors finally discover that all it takes is a single drug to eliminate the very thing that debilitated me in the first place. After nearly nine months, I am pain free (finally). Eliminating the pain is a relief to my family, and it definitely makes my life somewhat easier. Despite my insanely high pain tolerance, I am happy that I don’t have to “tolerate” it any longer.

  The pain was real.

  I wasn’t crazy.

  Unfortunately, this “relief” period is short-lived.

  Doctors have yet to diagnose or explain what is wrong with me. And so, my family live with the unknown and do their best to keep me healthy and stable. I do not know who I was, or where I was … I am what seems to be a two-year-old in a teenage body. People try to speak to me; friends who have known me since I was five are strangers because I am in and out of cognitive awareness. Often even my own family are strangers. I am a completely different person occupying a body full of memories and a life. Going through the motions, searching for answers, all while imprisoned in this foreign body.

  I am a ghost.

  Drifting.

  Floating.

  In a world I don’t know, with a life I have no connection to.

  Tests had shown that the blood vessels in my brain were inflamed but fail to give an explanation as to why or how to stop it from getting worse. Day by day the inflammation is getting worse. I am a ticking time bomb … and my family are sitting ducks.

  Strike one.

  Strike two.

  Strike three.

  Game over.

  After about a year and a half, my body begins shutting down even more.

  I’m losing … c, c, c, control.

  M, m, m, my body is not responding.

  The vise … is back.

  Suddenly the crushing headaches return with mysterious convulsions. Each headache is followed with a seizure that feels as if I’m being struck by lightning.