What we need is a miracle. We desperately need a ray of hope.
Not long after his visit, my health declines significantly and the seizures become even worse. My parents once again rush me to the new hospital and I am admitted. No longer stable for at-home hospital care. Out of options, the doctors at the new hospital begin to go down the “crazy” route … again. I am frustrated but my parents are frustrated beyond belief, and we are once again fighting this battle. Despite abnormal scans and very obvious neurological deficits, I am still being dismissed as crazy by one “expert.” It seems that when doctors have no clue as to how to help you or what is wrong, they assume you are crazy. Unfortunately, this “crazy” label has followed me everywhere. Everywhere.
I just wanna go home.
No more hospitals.
Please.
During my lengthy stay I’m eventually diagnosed with transverse myelitis (TM), a neurological condition that causes inflammation and damage to the spinal cord. When the nerve cells are damaged, your body can’t send messages to other areas. The gravity of my situation prevents my family from being able to continue the in-home hospital care. The new medical team agrees that I need to be placed in a rehabilitation center for constant care. My mother is tired, and they urge her to take a break. The seizures have not improved and continue to spiral out of control.
I am a “lost cause.”
There is nothing more that can be done.
So, I am sent to a rehab facility in New Hampshire, a place I had been treated back in the earlier days of this journey. My first experience here was pleasant, so surely, this one will be a good experience too.
But from the moment I arrive in late fall, I have a bad feeling. I’m afraid—actually, I’m terrified.
Something doesn’t feel right.
The nurses urge my mother to take a break and “get some rest.”
Please don’t leave me here.
But she stays and meets with the nurses, doctors, and therapists. When talking with my mum, they sound nice and caring, but I don’t like how much they are pushing her to leave me to go to a house across the street where families of patients can stay. Also, because I have a roommate in my room, they use it as a reason my mummy cannot stay. My mother has not left my side during any of my recent hospital stays; she has been with me constantly. Looking out for me and being my voice and advocate. I’m completely defenseless and vulnerable, and she’s always been my voice and protector. Knowing she is still there, I am less concerned. Until …
Where have you gone?
I awake the first night to find that my mother is gone. She was lying beside me when I fell asleep. I assume that she finally listened to the medical team and left to get some rest at the nearby on-campus house for family members. I begin to panic.
No, no, no.
I know my mummy is exhausted and needs time to regroup and sleep. A part of me understands why she left me, but another part of me resents her for leaving me. I didn’t realize that the doctors and nurses were preventing her from staying with me 24/7. And I also didn’t realize it, but during the few hours she was not with me, she was doing everything she could to help me. Visiting with outside-of-the-box healers and creating a game plan to get me stronger. She was searching everywhere for help. The only problem was, I had no idea, so I was angry. When I should’ve been thankful. I guess that’s sometimes what makes life so crazy. You could be going through absolute hell and think you are alone when the ones you love most—who you think have left you—are fighting harder than they’ve ever fought to help you. That was what my mummy was doing, fighting to get me better.
Keep fighting.
The nurses and LNAs (licensed nursing assistants) and therapists quickly become condescending, aggressive, and mean. They mock me and call me “crazy,” “waste of space,” “crybaby,” “hypochondriac,” “stupid,” “ugly,” and “useless,” to name a few of their insults. (Doing my best to keep this book PG, there were a few words used that cannot be repeated.) They hit me and abruptly move me, inflicting pain while saying demeaning and hurtful things to my face. I try to cry out in pain, but they restrain my arms because of my seizures. They secure the restraints so tightly that I lose feeling and circulation in my fingers.
Help, somebody, help me!
Please!
Never have I wanted so much to talk and scream. When my family comes to visit, the nurses and LNAs quickly switch gears and act caring and adoring and tell them how I’m “doing so well.” On the inside, I’m screaming louder than I’ve ever screamed.
Please help!
They are lying!
Don’t listen to them!
PLEASE!
Not only do I feel physically and verbally mistreated, but I am also being neglected. The nurses often neglect to tend to my bladder needs, leaving me feeling like my bladder is going to explode. My feeding pump is hooked up to the wrong port, causing my stomach to spasm and me to vomit uncontrollably. And instead of cleaning me up and helping me, I am left lying in my own vomit.
My mother visits me every day, but she is completely clueless about what is going on. When she is there, the nurses, LNAs and therapists are on their best behavior. But when she is not there, which is usually later in the evening or sometimes during the day, all hell breaks loose. I was used to feeling frustrated, but the fierce anger I feel toward my mum is new, and I want to just scream at her.
Why have you left me here?!
Don’t you know what they are doing to me?!
I’ve never really been angry at anyone before—except for “F” at the unmarked facility. And I never imagined that I’d ever be angry at the one person I love the most, my mummy. But I am so fed up with my situation and with the abuse that in my mind I lash out at her. She hasn’t done anything wrong except get some much-needed sleep. And it’s not even her choice to not be here. She wants to be, but the nurses won’t let her. All of this pent-up frustration finally boils over—and I am angry!
I’m done.
With everything.
So … in my anger, I begin to give up. I quit dreaming about things to come, and I can’t find the energy to be grateful. Instead, I feel like a victim, which is a horrible feeling of violation and helplessness. I’m being hurt over and over again, and I can’t fight back or tell anyone.
I scream in my head at God as I am relentlessly abused. Faith had always been my refuge, but I cannot find the faith to keep fighting anymore. Instead, I am angry at everything and everyone—especially God.
How could you allow this to continue?
Make it stop, please!
Can you even hear me?
Why have you left me, God?
This anger is uncomfortable and unnerving, but it fuels my despair and my desperate desire to die.
I can’t take this anymore.
I’m done.
Good-bye.
Let me go.
One day blurs into the next. When my family visits, they wonder why tears stream down my face and I seem agitated. The nurses come up with preposterous reasons as to why this could be and continue to mislead them. I don’t even want to look at my family. Even though it’s not their fault, I’m still angry at them. I’m angry at everything and everyone.
Please just go away.
Please.
I don’t want to see any of you.
Leave me alone.
But even though I’m mad at my family, seeing them makes it harder to give up and go. Their love and fight keep me stuck between leaving and staying.
I gradually detach from the world and my family. Internally, I’m preparing to die. I’m getting ready to leave this world and everyone I love. I can’t do this anymore—I refuse to do this anymore. I’ve got nothing left. I just pray that my death is quick and painless, which seems unlikely, given how much pain I’m already in. Every time I close my eyes, I pray that I never wake up. I pray that God will be merciful and take me away from this hell that I am trapped in.
Please ju
st take me away.
Please.
Sleep has been elusive throughout this journey. Nighttime is not my friend. My frequent seizures steal the rest I desperately need. The only way I get any reprieve is when my body eventually passes out from sheer exhaustion. But every time I wake, I am discouraged to find that I am still here.
One night, someone else seems intent on making my prayer to die a reality.
On this night, I am abruptly awakened from my sleep by a fierce seizure. The shocking pain and violent convulsions take over my body. As the seizure subsides, I’m bewildered and try to bring my body back to rest so I can get a few more hours of sleep and be away from the world a little longer. My eyes close, and I begin to drift off and I pray …
Please just let me go.
God, have mercy and end this now.
Please.
Suddenly, I hear a rustling noise from across the room. Before I have time to get my bearings, two hands take hold of my neck. The mysterious hands begin to squeeze and shake me and force my body back. My head whips back and forth as the air is slowly constricted from my chest, and I feel an extreme drowning sensation. My chest writhes in a desperate search for oxygen. I try to scream, to no avail.
H … E … L … P …
I want to move, but I can’t. I want to pull these hands away from my throat, but I’m trapped. I try to stay conscious, but my eyeballs feel as if they’re going to pop out of their sockets. Then I hear a searing, hissing female voice say, “I’m going to f***ing kill you,” over and over and over again, like a possessed mantra.
She’s going to kill me.
As her grip tightens, her hissing becomes louder and more profound. Although I’d wished for death just moments before, I am now desperate for something—anything—to free me from the stronghold. My heart races, and my body writhes and convulses in search of oxygen.
Air!
I NEED air!
Just when I think I can’t take any more, I’m filled with a strange peace. I stop fighting and my body begins to relax as I ready myself for death. I am completely calm.
Go ahead, do it.
End it.
Please.
I can’t do this anymore.
Please, just let me be free.
From EVERYTHING.
I’ve got nothing left.
I begin to welcome death like the friend I met a few years ago. Enough is enough. I can’t help but think that this is the answer to the prayer I’ve been praying for a long time. I’m so ready to be free, and it seems that death is my only way out. Survival means being a prisoner, and dying means breaking free from the prison that has held me captive for nearly three and a half years. Back in the unmarked facility, I fought the desire to die, but now there is no more fight in me. All of the pain and suffering and inability to defend myself have finally caught up to me. For once, I am taking control and am ready for things to end. Right now, in this moment of immense struggle I am alone, fed up with suffering, and not afraid. I feel that I have said my good-byes to my family. I do not want to fight or live any longer.
I just want to …
BREATHE!
Suddenly the grip loosens, and I gasp for air as if I’d never breathed before. As my body tries to recover, my eyes open just in time to get a glimpse of the person who nearly killed me. She strangely resembles a rag doll, but much rougher looking. Her hair is in one of my favorite hairstyles—two French braids. I never imagined that the hairstyle I loved so much would be on the head of someone trying to kill me.
Within a blink she is gone.
I’ll never know what made that woman do what she did or why she let go and left. But I’ve learned an important lesson:
Trust no one.
I know I have a family and people who love me, but this is not right. This is no way to spend birthdays, Christmas, and my teenage years. It finally hits me: I’m watching the world go on without me. People are growing up and forgetting. Forgetting about me wasting away in a hospital bed. This is no way to live. I want to be free! This prison has consumed my life, and I’m beginning to forget what it was like to live. This is no life. I used to do a lot of fun things. I used to be free! And now … I am losing myself.
Who am I?
What am I?
Where have you gone, Victoria?
I feel myself falling deeper and deeper in an ocean of despair. I struggle to get to the surface, but I am continually pulled under. The waves are too much, and I can’t swim. I cannot reach the surface; I’m drowning.
I want to be free.
My daydreams are fading. It’s been a long time since I was able to drift away to my place on the lake. Four years earlier, I fought against my wish to die, but I don’t even have the little strength I had back then. I’ve got nothing left.
I’m caught between dying and surviving. I can feel my body shutting down. Finally, I can be at peace. Finally, I can be free …
WAIT.
… I see my mum; her arms are outstretched, and she is smiling. My dad and brothers are next to her doing the same. I’m standing in front of them, and there is a car next to me. I look at the car and begin to walk toward it. All I can think of is, Finally, I can leave this place and be free from this pain. But, then I look back at my family. Their smiles have gone, and they are crying. I see my triplet brothers William and Cameron. We are the three musketeers and wombmates, and we do everything together. I see my big brother LJ, my protector. He would often carry my limp body around when I needed to be moved. When things got scary, he was there, even though he was scared, too. My dad is crying, too. I’m his little girl, and he can’t help me. Then I look back at my mum, the strongest woman I know. She has been relentless in helping me, never once giving up. She falls to her knees and cries uncontrollably.
Don’t go.
Hold on, Victoria.
I snap back to reality and realize that this daydream could become reality if I were to go. How could I be so selfish? Not once have any of my family even thought about giving up on me. For the last four years, they have done everything to give me the best life possible. They’ve cared for me so tenderly, and my mum has even made sure that my nails were done. Although this life is far from ideal, it is still a life, a life worth living.
Hold on.
There is a life worth living.
So, I make a choice—an incredibly challenging choice. LIVE. Regardless of the situation, just live. I wanted to give up; I wanted to die. But I couldn’t, I couldn’t go; I wasn’t done on Earth yet. So, I make a promise:
“If I get a second chance to live, I promise I will make it count. I will not waste even one moment. And I will do more than just live; I will change the world.”
I make this promise to God. He is the only one who can hear me. Sometimes, it is in our darkest moments that we realize the most powerful things. And we are often tested the most severely right before the miracle.
I can’t give up.
I’ve come too far.
I’ve fought too hard.
In some ways, I feel happy that the woman didn’t kill me and I didn’t die. But I’m not going to lie: a small part of me is disappointed.
Now, when my mother visits, I try every way I can to communicate to her, but all she can see is that I’m agitated and upset. She cannot understand why, and that only frustrates me more.
Get me out of here!
I continually try to tell her this, but to her and the rest of the world my desperate cry for help sounds like mumbles and jumbled agitation.
Please, Mummy, hear me!
One afternoon, my mum steps out of the room for a few minutes. My restraint isn’t strapped, and so when a seizure strikes, my left hand plunges into my forehead. The seizure quickly subsides, but the LNA grabs my left hand and uses my own hand to punch myself in the face. Each punch sends shooting pain to my hand and face, and I cry out. Over and over again, until I’m finally able to release a blood-curdling scream that makes the LNA step back in horror. My mummy r
uns into the room yelling, “What is going on? What have you done?” The nurse shakes her head and tries to act as if nothing were wrong.
“Get out!” my mum yells.
Mummy, please save me.
Tears run down my face, and Mum crawls into bed with me. “Don’t worry, Mummy is here, and I’m not going anywhere.”
7
BLINK OF HOPE
November 2009 to August 2010
The doctors’ efforts to stop my seizures begin to intensify after that incident. Ever since the unmarked facility, my mummy makes the decision to stay with me. The nurses and LNAs are again on their “best” behavior. They seem to know that my mum is paying extra-close attention to their interactions with me. One wrong word or move, and my mummy will know. I imagine they are praying I never get my voice back. Because if I do, they’ll be in a lot of trouble.
In an effort to help me sleep, a doctor prescribes a popular sleep medication. It does not put me to sleep, but my body becomes calm. It relaxes me, and my seizures are much less frequent. My face even relaxes into a slight smile, which has not been present for quite some time. For the first time, I am not fighting against a seizure and my body is not fighting against me.
Ahh … freedom, finally.
A chemical in the sleeping medication has somehow interrupted the neurotransmitter that causes my seizures. For the first time in a year, I am relaxed and not in pain. My headache goes away, and I’m free. Free to try harder to break out of this prison that is my body.
I need a miracle.
A true miracle.
But miracles are hard to come by.
Please, God.
Blink, blink, blink.
Wait.
I’m blinking!
I’m blinking!
One blink, double blink, triple blink!
Now let’s try something tricky, look left, now right. YES!
My eyes!
I have control of my eyes back!
I’m no longer just staring blankly.
Mum!
Mum!
Oh, wait, I don’t have my voice yet.
Locked In: The Will to Survive and the Resolve to Live Page 5
