Listen, I get that the whole point of this is to help me, but really, did you have to start with the most cliché question? I’m doing fine, really. I’m as good as I can be. I try not to think about it that much. The feeling of not feeling is constant, but there’s nothing I can do about it. When I was little, I couldn’t even stand the thought of not moving, I was all over the place. Now, I can’t remember what it feels like to walk, to feel the gravel beneath my feet when I walked to the park. I can’t remember that feeling and it’s not fair. As long as I don’t think about what I don’t have anymore, I’m happy for other reasons.
Well, my parents are finally happy together. That’s thanks to me, well, the Battens disease. It’s weird, really, what would you do if your only child gets diagnosed with a fatal disease and is told that they only have two years left? That was their motivation to be happy, that might be the only positive side effect to my illness.
My parents really surprised me, more than the unsympathetic doctor who told us. That doctor really was something. She was all like, “you’re daughter has Battens disease and will be dead in about two years. Oh, and don’t be surprised when she goes blind, becomes bedridden, and possibly form dementia.” I really didn’t like her at all.
What surprised me about my parents? Well, they had been arguing for months before I found out about the disease. I remember how bad it was…I’ll never forget the low, hidden anger in the tone of my dad as he retorted back. They never meant for me to hear, but given the fact that I was a curious 13-year old girl whose bedroom just so happened to be right above the living room, I heard everything. On top of that, I loved to read, but who wouldn’t rather listen to real drama than the made up stuff of our wide minds?
I can’t say I was always glad I overheard their arguments. Honestly, I’m not totally sure how I always felt. It’s like my emotions constantly change. Every minute that flies away out the windows of life, a new emotion sprouts in its place. I feel like that in me being curious and listening, I learned what I always knew and what I didn’t. It helped me realize that what they’re going through is real, that sometimes relationships just don’t work. Yet, I feel like when I was being nosy, it made me realize how empty I felt.
All I ever wanted was for my parents to fall in love again, to forget about all their problems and focus on all the good they created. Like me. I would do all of my work as soon as I woke up and would get straight As. I thought it was enough for them, but it wasn’t.
It’s hard for me to remember why they loved each other in the first place. What really makes me mad—don’t tell them this. I know you take tons of notes and stuff for my benefit, but, just don’t—I hate the fact that my death brought them together. It wasn’t me, it was the disease. It wasn’t until the found out I was going to die that they tried to do anything. At the time, I didn’t care—I was so innocent. Of course I was. I was a spoiled child that really believed that just getting good grade would change the hearts of her parents. I was so naïve.
I was really goal-driven, though. I wanted to go to college, I never really thought about high school, it was just a given. I want so desperately to go to high school. Going through the drama of a teenager, have a broken heart, that’s what I want, not a heart that literally can’t beat anymore. Just the thought of knowing that I can never have that…how come I have to go through this? I’ll never be able to have a family, grow old. I’ve only got a few months left and I still never even go to have my first kiss, but I can’t tell my parents this stuff. I guess on the bright side I’ll die in the latter part of fall. Irony, but I’ll get to imagine the changing colors and feel the biting cold.
My mom has to live the rest of her life knowing that her daughter died before her. I can’t imagine the depression and anger that fuels her. Then there’s my dad, a man who always puts his own interests at hold for his family. He’s always been there, providing, giving my mom and me security. He’ll hate himself even more know that he couldn’t do anything besides watch his daughter die. I don’t want to die knowing my mom will cry every time she thinks of me. I don’t want to die knowing my dad will hate himself even more than he already does every time he sees my mother lock herself in the bathroom to conceal herself from a world without me.
I didn’t ask for this, I didn’t. I don’t know what’s after life, I never thought about it. How was I supposed to know that I should start thinking about what happens next? I’m already dead really. I forget about myself, or where I am, the simple things that I should know. I’m already blind and trapped. I’m in a prison, confined in this thing, this four-limbed cell. The walls are just closing in and if I move even an inch, I could be crushed—and the worst of it: it’s a life sentence.
I can’t talk like this to others, even my one friend. I mean, we talk, but not about others would. They talk about boys or gossip. We had a strange bond…we talked about nature and meditation. Peace, that’s what we loved. I remember meeting her at the park down the road from my home. We would meet there and sit down on the swings. The scenery was so green during that time. So nice. Humid though. We would talk about how our lives were, what school was like, stuff like that. She was public schooled, which I somewhat envied. She always complained about how much she hated it—it was too much work. She would sleep all day, or just relax if it were up to her. One thing we did have in common was our love for the whistles of the wind, or the rustling leaves. Even the chirping bird in the vividly soft blue sky. I miss those images. The images alongside her. She was my better half.
She moved away, three months ago. She really fought with her parents knowing that I was going to die, but they already bought the house and had everything settled. She left. She tries to call me, but she’s busy. I can’t blame her, but I can’t help it. I should be busy too. I should be doing something, doing work or something, but I can’t. She growing up, she will grow up, but I can’t. I simply am there, doing nothing, being nothing. My mom thinks it’s best I don’t busy myself with school, when I really can’t even though I want to. I can’t read anymore. I can only hear, and attempt to remember.
…What are you even writing down? I can hear you writing constantly and I feel like you’re judging me. Am I saying something wrong? My mom is right outside; you can just go get her so I can leave. Is there a problem? Wait, what was I talking about again? I forgot, god, I forgot. Wait, no, I remember. Yeah, yeah I remember, sorry. See, this is why I feel dead already. How can someone be alive but not living? I can’t do this…
Everyone in my family tries to hide how they really feel. Don’t get me wrong, my parents show that they’re sad, but they try to tell me they aren’t scared. They don’t tell me how they blame themselves for my disease. I’m so tired of it. All the lies and the pretending. As soon as I die, they’re going to get divorced, I know that. They’re just pretending. They’re pretending and they think it’s for me, but they do it for themselves. They think it’ll help me be happy, but it doesn’t. They don’t care how I feel, they care about themselves. They’re so wrapped up in their anger and fear and depression that they’re blinder than I am. I have a genetic disease that most likely came from my mother. They blame themselves so much that they ignore me. Me.
They feel guilty. There’s no cure for my disease and I know they blame themselves. They talk to me as if there’s nothing wrong, they’re so careful around me. I hate that. Why is it so difficult to treat me the same way they used to? I don’t want special treatment, I know I’m dying. I know I’m missing out on everything I wanted, but why is it so difficult to be normal around me?
I’m worthless. I am just slowly losing my mind, rotting away, and I can’t tell them that because they’d treat me even worse. Why can’t they yell me? Why aren’t I allowed to cry, or be disrespectful? Why can’t there be consequences for my actions anymore? I don’t want immunity from how life is, I’m already losing so much and they’re taking away my life. Maybe I’m just going crazy. Maybe I shouldn’t want to feel bad, or get in trouble. Maybe I’m supposed to want the little bit of my life to be easy, but that’s not how I feel. I’m dying, fine, but that’s okay. I don’t care about that as much as I do the fact that I can’t be normal before I go.