Z, Z, Z, Zaaaaaaaappppp.
“Victoria, Victoria? What are you feeling? Can you please tell Mummy?”
I’m, I’m, I’m …
Gone.
Desperate to keep me out of the hospital given our horrific past experiences, my mummy tries so hard to help me and take care of me. But things quickly get too bad, and we are once again rushed back to the ER. The seizures and headaches and my condition have dramatically worsened. They immediately admit me to the local hospital and start running tests. Realizing that something very serious is going on, they want to rush me to a major hospital in Massachusetts. But my parents refuse to go back, and so instead of going south, the decision is made to go north to a new hospital where I am immediately admitted to the pediatric intensive care unit. The seizures strike every few minutes, my heart rate skyrockets, and I have trouble breathing. The doctors want to run several tests but need to shut my body down in order to do so, so they place me in a medically induced coma.
Darkness.
Again.
5
BREAKING FREE
January 2009
Hello?!
Nobody can hear me, but I can suddenly hear them.
I’m back.
I think I’ve been gone a really long time. I’ve somewhat managed to put the pieces of the puzzle together and figure this out. But why?
Am I crazy?
Is this a dream?
Will anyone ever hear me?
Will I be stuck like this forever?
I regularly have these awful seizures. Confusion tires my brain, and I use every moment that I’m not seizing to get my bearings. I wonder what day it is, or what month it is, and how old I am. I know I am in the hospital but unsure for how long. Eventually, through close listening and awareness of my surroundings, I find some answers …
It’s January …
2009 …
2009!!!
That means I am fourteen years old.
Fourteen …
The truth begins to slowly dawn on me. Two years have passed, two precious growing years. These are years that I will never get back. Years of playing field hockey, swimming, learning, developing, and—most important—living. Years of being a kid and doing kid stuff. All of a sudden, I wake up suddenly a teenager and no longer a little girl. Everything has changed, and I wasn’t aware to see it happen. I have no recollection of it changing. It kind of feels like I was forced to grow up against my will and control. How could all of this time pass without me even realizing it?
Who am I?
What has become of the little girl I vaguely remember?
Will I ever get back to the life I left behind?
In an instant I remember my three brothers and my parents, and I wonder how they are. Are they okay? Have they been able to keep their sanity through this awful ordeal? Have they come to visit me … wherever I am?
I am coming back.
I promise.
What has happened in the world while I’ve been away? What have I lost while life has gone on without my participation?
Where are my friends?
What about school?
Do I even look the same?
• • •
I fight the rising anxiety and fear and confusion and try to make sense of my situation. I need to calm down; I need to gather my thoughts and relax. Just remember …
I am here.
I am alive.
I know who I am.
I remember my life and my family.
Wait.
Where are they?
I cannot help but think about my three brothers; they must be so scared. I want more than anything to grab their hands and smile and tell them that I will be okay and that I’m still here. I’m not gone. And I want them to know that I’m going to fight really hard to get back to them. In some way, it may be a blessing that I can’t see how I look … in this room. I feel pretty awful on the inside; I imagine I might look even worse on the outside. I love them so much and don’t want them to be upset or scared. I can feel the tubes that are hooked up to me and can only imagine the sight they see when they visit me. But despite the sickness, I see the bright colored cards, posters, and pictures on my walls. And the butterfly balloons tied to the end of my bed. I figure out I’m in the hospital, but in many ways, my room reminds me of home.
I miss home so much.
My brothers do come to visit me. I’m sure now that they’ve been coming all along. I gradually see how each of them is handling my situation. William is the sensitive one; he always has been. Since we were little, I’ve taken care of him and watched out for him. From wiping his nose in kindergarten to playing street hockey, William and I have always been buddies, and I’ve always been his person. I’ve always known when he was upset, and I always knew how to help him.
He needs me now more than ever
and I can’t even help him.
Every time William visits, he crawls among the wires and tubes and gives me a tender hug. He is quiet and barely says a word, and I know it’s because he is upset, but he doesn’t want me to know.
William, it’s okay.
I’ll be okay.
We’ll be playing street hockey soon.
I promise.
Cameron is the outspoken one; we used to call him the Mayor. He’s always been so smiley and happy and wonderful. When he feels something, he says it. Whether he’s upset or happy, you always know with Cameron. But he is also strong and always positive, even during this whole time. Despite being devastated, he continually tells my mummy and me how beautiful I am. Every time he visits, he leans over my bed and pats my head and says, “Look how beautiful she is. Isn’t she beautiful?”
“Beautiful” is the last word I’d use to describe how I feel.
“Brutal” is more the word of choice.
But thanks, Cammy.
Despite putting on a brave face, Cameron has his moments. Sometimes he just bursts into tears because I’m not there to “tell him not to get extra Tater Tots.” My Cam has always loved Tater Tots, and when he’d get a hot lunch at school, I’d always tell him not to get extra ones because they’re not good for him.
Cameron, you’re allowed to have extra Tots
until I come back to school.
I’ll be back, I promise.
Then there is my older brother LJ; he must be in college now. He’s six years older than me, which would make him twenty by now.
Twenty.
He’s an adult now.
Since day one, he has been my protector and my big brother. LJ always watched out for us three triplets, but he seemed to have a soft spot for me. He would play dolls with me when I was little and go on the scary roller coasters with me and would always tell me, “Don’t worry, Tors, I’ll always protect you.” When this journey began, he was only seventeen, and I later learn that he had to grow up overnight and help take care of my brothers while my parents took care of me.
There were lots of times while I was still home that I’d take a turn for the worse in the middle of the night, and my parents would rush into LJ’s room telling him that he needed to get up and watch the boys and make sure they get to school. Then we would bolt to the ER, and LJ would be left wondering if I was going to come back home. Nonetheless, he kept plugging away at school and being strong for me and our family. But there were times when he couldn’t: one day he fell over the end of my bed, crying the most painful cry, and asked Mummy, “Is she going to die?”
I’m so sorry, LJ.
No big brother should bear that cross.
I’m going to fight.
I promise.
We will get through this.
LJ is the one I worry most about. He was on his own at school and had to be a grown-up overnight. I’m sure he had his own struggles, like every other teenager, yet he had to keep going and keep fighting—oftentimes without my mum and dad, because they were with me. I pray for LJ often, asking God to watch over him. And God answered that prayer in th
e form of his girlfriend, Liz. She is his rock and cares very much for him and gives him strength. Not only does she care about LJ, she cares about all of us. Liz is selfless and kind and always there for my brother, my family, and me. She goes above and beyond, and at times keeps everyone together and strong. We are all fighting, and Liz has joined the army.
Thank you, Liz.
You don’t really know me,
but I’ve gotten to know you.
I love you and cannot thank you enough.
And LJ … you better marry that girl.
(Never thought I’d ever approve of a girl for LJ.
I’m super protective of him.)
My three brothers are so selfless and strong that at times it leaves me speechless. (Obviously, I am already speechless externally, but they amaze me so much that I am speechless on the inside, too.) Our parents didn’t raise us to be weak, but going through these years with me must be incredibly scary and horrific. They are so strong at such young ages. Their strength gives me strength.
They are fighting … for me.
Living … for me.
Believing … in me.
I guess none of us realizes how strong we are until being strong is all we have left. My family’s strength never wavers. Of course, I know they are tired and scared and terrified of a future without me, but they never let me know that. Although they cannot see any sign that I am here, they refused to believe that I am gone.
Life kept going.
Even in the worst of times, my family maintains an overflowing joy and love that daily fills my room. I always have a stellar manicure and pedicure, the coolest “trendy” clothes (thank you, William), and exceptional care.
I am still me, just a little different version.
But I am here.
I am alive.
And I am with my family.
And they love me … I love them.
And love conquers all.
Knowing that my family loves me so faithfully and fiercely temporarily eases my anxiety and fear. I am not completely gone, and I have my sanity and brain function. I can work with that, and I can live with that. Although nobody else knows that I’m in there, at least I know I’m here. And my family isn’t leaving me or giving up on me.
This is a fight.
And it’s not near over.
In contrast to my family’s steadfast hope, the doctors, nurses, and specialists always enter my room with somber faces. Their reports are grim, and my future does not look so bright in their eyes. I hear them tell my family:
“It’s too late.”
“There is nothing we can do.”
“Most likely, she will not come out of this.”
“You have to prepare for the possibility of her dying.”
“If she does survive, she will not be able to walk, talk, eat, or move, and she’ll require constant care.”
They have no idea that I can hear everyone and everything.
I’M STILL HERE!!!!
I’m here, and I’m terrified.
I don’t want to die.
Please don’t let me die.
I haven’t even had the opportunity to live yet.
In my mind, I’m at Lake Winnipesaukee, my favorite place in the world. I’m at my absolute favorite spot on the water. It is known as the Broads, and it is the largest part of the lake. The view is breathtaking; the sun is shining over the water, causing it to sparkle. Majestic mountains tower in the distance. The wind blows, and I can even feel my hair tickle my face. I’m on the boat with my family. We are happy, smiling, and laughing—something we were not too long ago. For just a moment—a small but incredibly powerful moment—everything is perfect, and I’m okay.
These daydreams become my refuge and my lifeline. A reminder that there is a life worth fighting for outside these hospital walls, and outside this painful prison I am trapped in. My dreams vary from day to day. Sometimes I’m a reporter at the X Games, or a movie actress, or skiing out west, or running—fast and far away from my hospital room. Other days, I’m dancing on my favorite TV show, Dancing with the Stars. I can picture the sparkly costumes, high heels, and the various dances. I’ve always loved to dance, and I want more than anything to be able to twirl and hear music and have that freedom. I also write screenplays in my mind, creating stories and characters that intrigue me and distract me. I prepare for the life I want to live beyond this hospital bed.
Instead of focusing on my pain, I focus on my will to live and to be someone someday. I focus on living and being able to one day do all of those things. Because if I focus on where I am now, I don’t know how long I will last. I have to keep envisioning the life and the exciting adventures that await me. Each day that I get through these horrific, painful seizures and migraines that have violently taken over my body, I am one step closer to breaking free and living the incredible life I’ve envisioned. So, I often run away from the negative thoughts that try to take over my brain. I have only my own thoughts and time to think. Plenty of time to think.
Keep dreaming.
Keep believing.
To avoid continuing down the path of negative thinking—which gets really scary really fast—I decide to fill my mind with everything I am grateful for.
Now, you’re probably thinking …
WHAT could I possibly be grateful for?
My life has completely fallen apart, and I lie here trapped inside my own body. Fighting the good fight each day. Constantly fighting the pull to give up. Yet, in spite of the “hopeless” prognosis I often hear, I am able to find plenty of things to be grateful for. Starting with the simple fact that my mind is now working enough that I can reflect. And the more I think, the more the list grows.
I’m not dead … right ? That’s a BIG win!
It might seem that starting with “I’m not dead” is really scraping the bottom of the barrel—and hey, that may be true! But it’s a start—a good start—and it was one for the top of the list. Then I begin to think how that simple hospital room has turned into a makeshift “home.” And when I’m stable, my parents create a hospital at our home. Whether in the hospital or at home, each place is bursting with love. I have this amazing, dedicated family around me day and night, and they are 100 percent committed to my every need.
But reality frequently smacks me across the face, and it is sometimes really hard to be grateful. I’m a prisoner inside my own body. Everything is disconnected—my body doesn’t feel like it belongs to me. I try to wiggle a finger, nothing. I try to move my eyes to see out the window, nothing. All I can do is stare straight ahead. I have no control over my eyes, and my vision oftentimes is distorted. I try to open my mouth and scream, nothing. It feels as if I’m being constantly electrocuted. I will later learn that my nerves are misfiring due to my lack of movement, and that there is a war raging inside my nervous system, spinal cord, and brain.
Breathe.
Just breathe.
Find your place, go to the lake.
Forget, just forget, for one moment.
Breathe, I know it hurts, but breathe.
But when seizures strike, I can’t breathe, my body convulses, machines beep, and I feel as if I’m being struck by lightning. I want to pass out and escape this torture, but I can’t do anything except bear the pain. As the seizure subsides, my heart races and my head spins. My body relentlessly fights against me. It is a vicious, violent, and horrific cycle. I’m continually pulled underwater, never reaching the surface.
How can I live like this?
How can I break out of this prison?
I need a miracle.
Please, God.
I need a miracle.
6
AWAKE … AND BACK TO HELL
September 2009 to November 2009
All I need is something—anything—that can show the ones around me that I am still in here. But the seizures are relentless, and I rarely have a “break” when I can try to give some sort of sign. In spite of my strong will to live, my hope is
dwindling. And my will to live was running on empty.
It can’t get much worse than this.
It’s my fifteenth birthday—September 26—and my family has decorated my room with balloons and cards and even sung “Happy Birthday” to me. But the day is far from happy. I sense that everyone feels deflated and exhausted. It’s been almost four years since birthdays were considered a “happy” time in my family.
Will I make it to my next birthday?
Though I am still gravely ill, and the seizures continue to ravage me, my parents wanted me home. The doctors have done all they can and have little to no hope for my recovery. “Lost cause” is an ongoing theme. My family—as strong as they are—is weary. And I am weary of trying and sick of being so sick. Aside from being at home in a makeshift hospital room in our living room, there isn’t much reason for hope. I look at my birthday as another year trapped, another year watching the world go on without me.
But today, on my birthday, I receive a visit from someone who reignites my hope.
“In time, she will be healed,” says Father Bashobora. As I listen to the conversations around me, I learn that countless people around the world are praying for me and that word about my desperate situation has spread.
A woman from a local church heard my story and passed it along to Father Bashobora, a spiritual healer who was coming into town to speak and heal at a local church. Father Bashobora heals thousands all over the world, and when he heard my story, he asked if I could come to the church, so he could pray with me. The woman explained the situation and that I was not stable enough to leave my hospital bed. So, he decided to make a house call.
Father Bashobora does not normally make house calls. But now, on my fifteenth birthday, he’s here to pray with my family and me. At this point, seizures are striking every two to five minutes, so I am going in and out of convulsions and cannot always hear what Father Bashobora is saying. But I can feel immense love and light, and I know deep down that it is a gift from God. He keeps saying, “In time, she will be healed.” His words are the first words of hope my family and I have heard in a very long time. Everyone else speaks of sorrow and sadness and is afraid to offer hope that may not be realized.
Locked In: The Will to Survive and the Resolve to Live Page 4
