Maybe on days that I don’t post long stories I will post a quick rundown of my daily doings. That’s what a blog is supposed to be, right?
-woke up at 6 AM since my family leaves by 7. Vomit.
-took my weekly shower. (I’m joking, please no messages asking if I’m serious. I don’t shower weekly… I shower monthly.)
-watched the first episode of Game of Thrones.
-picked up the pieces of my blown mind. That show is so good.
-watched 2 more episodes.
-went out for pizza with my friend Michaela.
-watched 3 more episodes.
And tonight I’m going to a Lehigh Valley IronPigs game. They’re the AAA affiliate* of the Philadelphia Phillies. But right now, time to watch another episode.
*I spelled this correctly on my first attempt!
Right now, it is 7:30 AM, and I am wide-awake. One of the shittier parts of being in a wheelchair is that I have to rely on someone else to help me dress myself and move me from my bed to my wheelchair. Initially, this fact might not seem like a very big deal, but you’ll have to trust me when I say that it is a highly annoying situation. I essentially have to live my life by the schedules of my family members, because I would literally be stuck in my bed all day if I didn’t get into my chair before they all left for work/school/friend’s houses/etc. Lying in bed all day becomes a lot less appealing when a tiny voice in the back of my head is constantly whispering, “You are fucking stuck!”
During the school year I don’t mind it as much because I have to get up for classes anyway, but when summer rolls around it starts to suck. There are many days, like today, where I’m forced to wake up at 6 AM so I can get ready before my parents leave for work and my brother leaves for his morning baseball practice (he’s 15 and a phenomenal baseball player, hence he is on the kind of bat-shit crazy teams that practice at 8 AM during the summer).
Ok, fuck trying to write a well-organized post about my sleeping schedule; I’m going to tell you a little about my brother now because he’s such a huge part of my life, and maybe I’ll find a way to tie it back to where I started by the end.
My brother’s name is Andrew, and he is one of the two people in this world that truly understand my sense of humor. He knows and appreciates that mostly everything I say is not meant to be taken seriously. He is one of my best friends, which might seem weird to some people because he is three years younger than me, but he’s really cool about chilling out when he hangs out with my friends and I. The reason we are so close is because Andrew has been my arms and legs for as long as I can remember. From helping me brush my teeth to lifting me in and out of our friends’ pools during the summer, my brother helps me so much that I cannot imagine how absofuckinglutely terrible my life would be without him. I plan on writing many posts about all the shit that the two of us get ourselves into.
To be honest though, I am more honest with all of you about my disability than I am with my brother and my family and close friends. I don’t know how they would react if any of them ever happened to find out about this blog. I’ve gotten really good at putting on fake smiles when everything is not ok, and pretending I’m oblivious to the fact that my condition is constantly getting worse and I will not outlive any of them. I don’t even know why I can’t talk to anyone about it, I’m pretty sure it’s because I don’t want to see their reaction.
I’m sorry if this post seems like a dramafest; I’m really not looking for anyone’s pity, but these thoughts fuck with my head in ways that you couldn’t believe.
Success! I thought of a way to tie this back to the beginning! Similar to the way I have to wake up according to my family’s schedule, for a large part of my life the time I went to bed was constrained in the same way. I was not able to stay out till all hours of the night like most of my friends, because I felt terrible about coming home and waking up one of my parents to put me to bed in the middle of the night. Recently, my brother and I have developed a little system where we coordinate how late we are both staying out so that we get home around the same time. Now that he is older and physically able to lift me safely, he just throws me in my bed before he goes to bed. I’m still not completely independent of my parents’ schedules, but thanks to my godsend of a brother, it is better than it could be.
One of the coolest things about my brother is that for the most part he helps me without the blink of an eye. Sure, there are times when we don’t get along and he gets annoyed by all the help I need, but we are brothers and that is to be expected.
I remember one night last year when he was putting me in my bed, I thanked him for helping me out and he said, “Shut up dude, I wouldn’t do it if I didn’t want to.” I love you bro.