You Don't Know Me

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I sigh as my mom slams the door. She has to go to work early and dad is supposed to be watching me. I had asked if I could continue with public school. Dad was game. He was proud that I still wanted to go. But mom was infuriated. I get why, but it still hurts. She thinks I'm better off slowly dying in the colourless walls of a hospital room.

Ever since my diagnosis she has changed a lot. Every offbeat noise causes panic and I can't do anything without being suffocated. She walks on pins and needles around me and checks on me every 15 minutes. Her eyes never lose their look of fear and pain. Her mind never sleeps peacefully unless she knows I am 100% safe. She worries and spoils me. Doing anything in her power to make things easier and more comfortable.

I don't think she realizes that changing and treating me like breakable china hurts me. Without meaning to she is slowly sucking the "live" out of "life".

I don't need a reminder of my fear. Or to get anything that does keep me happy, taken away. What I need most is to live life. To experience things while I still can. I won't be able to soon. I don't want to waste my one life on a hospital bed. I don't care how much time I have or how much time I could have. I want to use the time I'm given and live. Learn as much as I can. Experience everything possible within the respected boundaries. I don't want to leave this world knowing that I gave up and let despair and pain take over my being. I want to laugh, run, jump, swim, eat, as much as possible for as long as I can. So when my body does give up on me and I have to surrender my freedom, I'll have beautiful memories of everything. Memories of the glory days that I can relive until the end.

Why do people let death affect them so? Why should it be such a surprise? We all die in the end. We really don't know when we will. Isn't it better to live each day fully and Beautifully like it's your last day to live? Death is not uncommon. It is part of this world. You shouldn't go looking for it, but you can't just avoid absolutely everything just so you can live. You shouldn't shut yourself up in a bulletproof box. That isn't living. It's existing. I don't want people to see me as the sick one who is basically dead anyways. I want them to see me as a challenger in life. Someone who outthrew all odds with the gleam of life in his eye. The one that meets it's fate after tackling everything and anything that is important to him.

I want to breathe in life and let it fill me until death consumes me. So forbidding things like school or fun activities just pushes my will and hope downwards. I'm dying either way. I don't want to go slowly and agonizingly. I want to go knowing I did all that I could and didn't waste the life I was blessed with.

Family members of course don't understand this very well. They find it hard to see past the words "death" and "gone". They don't want you to go and will do anything in their power to hold your hand again. Unless of course they respect your decision and stop it at that. It's hard seeing someone you love slowly die before your eyes, or crumple in pain. It's natural to want to protect them and give them anything that gives relief even for a minute. But what people have to realize is that they aren't the ones dying. Or the ones in pain. So to give relief and to make life easier for the sickly, you have to do it in a way that gives them strength and happiness. That is comforting and reviving to them. You have to know them and what they truly want.

No amount of cookies is gonna satisfy me. They are good but they aren't what makes me happy or what gives me the will to carry on. No. It's life around me. Seeing people live. All the possibilities. It motivates me to get better so that I may have a chance to be one of them.  I rest easy knowing there are stars above me. I forget everything for a while. Learning to live is the exact thing that will aid me the most in living. It's hard to understand and explain everything. When death is thrown at you or any kind of weird twist, sometimes nonsense is the key to making sense. You have to learn before you obtain knowledge. Maybe in my messed up view I know the outcome. I just have to learn the many ways of getting there. That means reversing things and turning them upside down. Turning nonsense to fact. Seeing lives before death in a way I could only dream. It helps build the picture.

Of course if I said this to them in real life they'd think it's my sickness talking. I'd find myself with an IV in my arm pretty quick. They'd put me on watch for depression and other mental health issues. I'm not insane. I'm actually probably the sanest I've ever been in my life. I just have this burning feeling. It's like I crave to know what it's like to really live. And without it, I can't be happy. I feel it in my heart and my soul. And for some reason everything in me is telling me to go and live while I still can before I miss my window of happiness.

I have no clue what it means and why I feel it so clearly, but I'm not about to ignore it. That just leads to worse things. I guess this is the start of my journey. I don't know what's in store for me but I'll gladly find out. I'll live one day at a time, taking in everything. Living with all my soul, body and mind.