Mum, Mum, where are you? I want to see you!
My mum walks into my room and begins to get everything ready for bed. I lock my eyes onto her. I follow her around the room. I can see the world outside the windows. Oh, how beautiful it is. The trees are brown; it must be close to winter. The sun is so bright and beautiful. I’ve missed this bright, beautiful world.
Focus, Victoria.
Back to Mum: I need to see her see me seeing her. Never in my life have I been so focused. She walks over, and her eyes meet mine. I don’t lose my focus. I’m locked in on her eyes. She sees me, finally, she sees me!
I’m still here, Mummy.
I keep my gaze, and I focus. I can feel a difference in my eyes. The glossed-over stare is gone. I’m focused. I’m cognitive, and I’m ready to connect with my mamma. She takes a step back, and I keep staring at her. She sees me, and I see her.
“Victoria?”
I keep my focus locked in.
“If you can hear me, blink twice.”
Blink …
“Come on, Victoria, one more …”
Blink.
Over and over again.
And that little thing that we take for granted, that everyone has done many times while reading this book, became my lifeline. Suddenly, I had a way to communicate: one blink for yes, two blinks for no. Instantly, my mummy burst into tears of joy, the weight of the world was lifted from her back, and it is undoubtedly the single most powerful moment I have ever shared with anyone.
“Victoria is in there.”
That was the moment of relief for my family. Finally, they knew that I was still there. Although horrified that I was locked in, they were so happy that I was responsive.
• • •
My world has opened up in the simplest of ways, and I couldn’t be happier. For most people, blinking isn’t a big deal or relevant, but for me, it is my passport back into the world of the living, and to let everyone know …
I’m still here.
All of a sudden, I can see and communicate. I no longer feel like I am fading away and missing the world around me. A simple miracle has reignited the fire and fight that had been slowly disappearing. My eyes—having control of my eyes—have made me one of the happiest humans on Earth. I can move my eyes and see my family and the world around me.
Thank you, God.
When I’m not having seizures, I can focus and communicate. Not worrying about losing consciousness is one of the biggest reliefs. Each day, the seizures become less and less frequent. I can feel the sparkle returning to my eyes and spirit.
• • •
I am alive, and I am stable, and I am able to be at home with my family. Now that my seizures are under control and I am medically stable, the doctors allow me to come home. My whole family breathes a sigh of relief.
My brothers like taking me around the house in my wheelchair, and my mum begins to bring me up to speed on what’s been happening in our family and the world.
I can’t yet talk, but I’ve found ways of communicating. Through blinking and raw sounds, my family always seems to know what I need. I am slowly regaining movement in my arms, but my hands are still clenched due to extreme spasticity. I haven’t used my arms in quite a while, so moving them is far from graceful but gets the job done. But with this newfound progress in my arms, I’m able to expand my communication through a communication board which is a sheet with lots of various pictures that each represent something I need or want to say.
My family continues to amaze me with their love and kindness and support. Although I am still significantly compromised, they treat me like a normal human being. I am included in every conversation and never left out. I become my mummy’s buddy, and she brings me along everywhere she goes. One day in particular she brings me to one of my favorite places, the beach. We breathe in the fresh air, and I am truly at peace.
Driving back, my mum looks back at me in the rearview mirror, and she says something I will never forget. “I want you to know that if nothing else comes back and you don’t get any better, Mummy will always be there for you and take care of you.” This woman never ceases to amaze me. That comment means the world to me and is so incredibly sweet, but I have other plans.
I will not only survive,
I will thrive.
As I improve, I am more aware of the world around me and the life I’ve missed out on for the last four years. A lot has changed since I was eleven. Now, fifteen years old, I want to return to my old normalcy, yet I wonder if I will ever be truly normal again.
And when I see myself in the mirror for the first time, I am taken aback. I don’t remember seeing myself in a mirror during the four years since I started getting sick. And today, I don’t recognize the face looking back at me.
Who are you?
Where is Victoria?
I cannot help but see the flaws, there are so many of them.
I truly need to cut myself a break after all I’ve been through, but the superficial reflection of me does not “measure up” to who I think I should be. A lot changes from age eleven to fifteen. I also hadn’t realized that all of the side effects from various medications would affect the way I look. My face is puffy, my teeth are crooked, I have an odd haircut with bangs, and I even have boobs, which is a drastic change in itself. I am discouraged, and the thought of being normal and pretty and in shape and back to myself seems like a far-out pipe dream. I don’t know what to do or what to be or what would become of me.
Will I ever talk again?
Sit up on my own?
Eat?
Walk?
Write?
Go to school?
Live independently?
Have a boyfriend?
Be in shape?
Move?
Be strong?
My ongoing list of uncertainties and insecurities keep me up at night. I struggle constantly with fear … of everything. I am afraid to sleep because I don’t know what I will wake up to.
Will the seizures come back?
Will I get sick again?
Be trapped again?
Will my world be taken away from me again?
I don’t understand it at the time, but I am experiencing severe posttraumatic stress, and my brain is on overload. When I was sick and fighting for my life, I hadn’t struggled with fear. But now, I am afraid all the time. The world has gone on for four years without me being a part of it. And so, the world seems scary, and I feel that I don’t belong. I crave the simple eleven-year-old life I left behind four years ago. But that life is gone. That Victoria is gone. I am a new Victoria, and I have to figure out how to adapt accordingly. I honestly have no idea how to live “normally” and just be a kid. I don’t know what to do.
How can I live a normal life?
The trauma and darkness that have plagued my last few years have now come to the surface and are tormenting me. Let’s just say, nobody gives me a “How to Cope with Losing Four Years of Your Life” manual (maybe that should be my next book). I am also dealing with a bit of agoraphobia (an anxiety disorder that takes the form of fear of crowded spaces) because I haven’t been out in the world for so long. Everything has changed. For example, I wake up to discover that everyone else my age is focused on iPhones and Facebook.
I don’t even know what they are.
Frankly, I don’t know what anything is anymore.
• • •
The next few months are a blur of doctor visits and physical, occupational, and speech therapy sessions. Little by little, I am returning to routine family life and regaining some of the function I had lost. I try to find my “new normal.” But this normal is more complicated and requires a lot of work! Getting out of the house and going to the bathroom are way more complicated than they were before all this. It amazes me how hard it is to accomplish even the simplest of tasks such as wiggling a finger, holding a pencil, saying hello (H is a hard letter to master), and holding my head up. I still have issues with my stomach, and so I
’ve had to learn how to operate my GJ (gastrostomy-jejunostomy) tube pump, which continuously pumps nutrition into my body. It feels as if I am climbing mountain after mountain. And just when I think I am at the top, another larger mountain materializes.
But I am determined. I want to move on with my life as much as possible and attempt to be a “normal” fifteen-year-old. As difficult as things are, I never think about giving up—not ever. I have turned into a machine, determined to “make up for lost time.” I refuse to sit back and “wait” for things to come back; so instead, I force them to return. When I’m not doing physical, occupational, or speech therapy, I am moving and working hard at accomplishing the “goals” that are set for each week.
I don’t just want to learn how to say a word; I want to speak concise and educated sentences. I have so much I want to say, and I want it to sound fantastic when I say it. I want to speak as if I never stopped. And I don’t just want to wiggle a finger; I want complete function in my hands. Due to extreme spasticity, my arms and hands have been clenched for a few years. But thanks to twenty-two Botox injections in each arm, my clenched fists have started to release. I do not give my hands much time to recoup before I force them to do crafts and practice writing my name in cursive. I don’t just want to hold my head up; I want to be able to sit up. And last, I want to transfer myself in and out of my wheelchair independently.
Wheelchair.
I never really had a chance to grieve the loss of my mobility and my new reality of being wheelchair-bound. I remember losing the use of my legs when I first got sick, but I never imagined they would be gone for good. According to the doctors, the use of my legs is not going to return, and a wheelchair will be my way of getting around for the rest of my life. That is not an easy pill to swallow.
You are far from free.
You may never be free.
My life is still far from being completely free. I want so badly to be able to move around in my wheelchair, eat, and go to the bathroom independently. In my mind I feel “fine,” but severe muscle atrophy and neurological deficits continually remind me that I am not “fine.”
How do I move forward?
Will I ever be okay?
I try to focus on how far I’ve come, and I desperately try not to think about how far I have to go. If I focus on that, I will quickly become incredibly depressed. And I know that depression would be a slippery slope for me. I know deep down that my life will never be how it was before I got sick, but I try to picture a wonderful and free life ahead of me. I know that the odds of having the life I imagine are not great—but who knows? We serve an almighty God who can do the impossible.
And in my case the impossible looked like, of all things, hockey.
I’ll never forget the day I went to Northeast Passage the summer before I started high school. Northeast Passage is an adaptive sports program out of the University of New Hampshire. I’d heard of NEP back in February right around the time of the Vancouver Olympics, as I slowly was coming out of my vegetative state. My mummy had gone to UNH, and the February 2010 newsletter had a whole feature on sled hockey. I knew in that moment that I wanted to get back out on the ice and back into sports. Sled hockey is specifically for players with physical limitations so instead of standing up to skate, they sit in a device known as a “sled.” They use sticks with sharp pics at the bottom to propel themselves.
Before I could even talk, I let my family know that I wanted to get back on the ice in a sled. My daddy is a big-time hockey guy and has coached and played on all levels—including professionally. So, when my daddy finds out I want to get back on the ice, he is the first person to get me into a sled.
I am still very compromised. My arms don’t work, and I can only speak a handful of words—and that is just when my muscles choose to cooperate. But I can communicate, in my own way, what I need. Daddy straps a helmet onto my head and duct-tapes sled hockey sticks in my hands, and then he takes me out for a spin. While all the other parents and family members are skating timidly and nicely with their children, my daddy is pretending to check me into the boards. Over and over again, he says, “If you’re gonna play hockey, you need to be able to take a hit.” My poor mummy is traumatized as she watches from the stands. My brother William penguin slides next to me and pretends to check me as well. I love every moment of it. The ice, the sticks in my hands—they remind me of me and of the passion we share as a family. Growing up at this particular rink, none of us in a million years would have imagined I would be here in a sled and we would have gone through all we had just been through. But we can’t look back and think about the sadness and the loss. We have to focus on the future and the fact that I am alive and that we are slowly finding stability and peace in our new normal. It isn’t perfect by any standards, but it is good, so good.
When I get into that sled, the competitive drive that I’ve had since birth is reignited. And being back on the ice with my family is beyond healing. I now have a place where I can be an athlete and compete—something I have missed. Sled hockey is not a sport for the fainthearted. It’s an intense game, and I am doing it with two sticks that have sharp pics at the end. Many of its stars have gone through difficult struggles, so there is a lot of heart in the game, but it’s also extremely intense.
Get back in the game.
• • •
I’ve always been the kind of girl who likes to play with the boys, and sled hockey is not a big girls’ sport. So, in the fall of 2010, seven months after first being strapped in a sled, I join the Northeast Passage sled hockey team. The guys I play with push me and motivate me. I have to take the hard hits, and I have to learn to skate fast in order to avoid the hits. I learn about camaraderie and that I am not alone. Many of my teammates have been through horrific ordeals like me. Even though we all have different situations, we all have a story. Hearing their stories and seeing their independence and their determination to rise above their circumstances is a great encouragement to me.
Before I joined this team, I felt so alone and like nobody understood me. I struggled to fit in and feel “normal.” Not only do these guys understand, they have a sick sense of humor about it. We are all sick of being called “inspirations,” and we just want to be hockey players. Even if it is just for the time we spend practicing and playing, in those few hours, we are hockey players—nothing more, nothing less. We are not patients, victims, hurt, or damaged. Our battle scars are hidden by gear, and our hockey skills speak for themselves. No pity party and definitely no “taking it easy.”
For the first time in a really, really long time, I can unhook my feeding tube, get out of my wheelchair, and play a game I have loved since I was a little girl. Little by little, I’m finding the Victoria I thought was lost and long gone.
Hockey saves me in many ways, but the most important thing it saves is my relationship with my dad. To be honest, while I was so sick, my relationship with him was, in many ways, broken. He struggled with my illness because he couldn’t help me, and as a result, he sometimes took out his frustration on me. When I was in the throes of my illness I wanted nothing to do with him. But I quickly realized: Who am I to judge? What happened was horrific.
That’s not a way to live.
I love you, Dad.
I always have.
And I always will.
Now that I’m finding myself again, I want to have a better relationship with him. When someone hurts me, my first coping method is to hide away from that person; it’s my go-to defense mechanism. It may be a single word or one wrong look, and boom, I’m in my shell. I am in my shell with Daddy and have been for quite a few years. I know he loves me more than anything, but he wasn’t always there when I was sick. But through a lot of prayer I learn that sometimes we hurt the people we love the most.
And sometimes, when other people are hurting, they don’t realize that they are hurting us. He wasn’t a bad person; he was broken and hurting and trying to keep our family together. I’m not a parent, and I can’t
even imagine the frustration and pain of not being able to help your child. I’ve always been Daddy’s little girl and he has always protected me, and he couldn’t during this ordeal, and that broke him.
I start to see my dad in a more positive light, as he goes out of his way to take me to hockey practice. He even helps coach our team. It is quite funny to see this hockey guy, who has grown up around stand-up skaters, try to coach a team of guys who are in sleds. He occasionally slips up and says things like, “Move your feet!” to our goalie, who has no legs. Our goalie responds with, “Yeah, thanks a lot, coach.” Needless to say, the banter at times is quite hysterical. But my dad is an incredible coach, and I have seen him transform players and goalies into high-caliber athletes—some even achieving the impossible and making it to the NHL.
My dad is an amazing coach for me. He pushes me and encourages me to go further and to be faster and better than I was yesterday. He is not easy on me by any means, and if anything, he pushes me a little harder than everyone else. But it is all in love. He knew, even before I did, what I am capable of. Feeling his confidence was profoundly encouraging. For many years doctors have told me all the things I’d never be able to do, but now the tables are turned, and I discover that there is so much I can and would do.
Dad and I are now spending a lot of time together—on the ice and going to tournaments. I start to get to know him again and slowly begin to see that he is trying to be better and make up for the past. Our relationship isn’t restored overnight, but this is a big start.
Keep going.
Get stronger.
Keep challenging yourself.
In addition to Daddy, Tom Carr—who is the head coach of our team—believes in me from the very start. He encourages me on the ice and challenges me to be better. He is the one who pushes my dad to get involved, too. Tom brings so much out of me when I’m on the ice. Even when we first met and while I was still having trouble sitting up, he never once treats me like a patient. I am always an athlete to him.
Tom also can see that I am more than a hockey player, and he constantly encourages me to explore other sports. But for now, I just want to be a hockey player—that’s enough for me. But Tom doesn’t give up. He knows I am a swimmer and a good one, probably better at swimming than at hockey. Swimming would offer more opportunities than hockey, and Tom keeps pushing me to explore it. He sometimes laughs and says I am like Happy Gilmore, claiming to be a hockey player when in fact I am a better swimmer.
Locked In: The Will to Survive and the Resolve to Live Page 6
