Sunday, May 4, 2014

im back

Hiya everyone! Its worlds most irresponsible blogger again. 
I am back home for about a month now. Here is a very blah entry with lots of teenage angst for you to enjoy: 

I am no longer getting stronger. My body is no longer improving. I have no new feeling or movement in my legs. I am the same as I  was months ago. I am not going to walk. Or run. Or skip. I will never feel the warm sand in between my toes and I will never feel the wet grass beneath my feet. These are horrible truths that are in my face right now. Horrible, horrible realities. Realities I have been dwelling on and questioning, and wishing weren't real.

A few weeks ago I had a very embarrassing moment with my boyfriend. I was so embarrassed and I was crying and crying and crying. This is when he said the most beautiful three words in the world, “Hey, it’s okay.”

He is right. It is okay. Everything is going to be okay. I am okay. I have improved far enough. When I first arrived at rehab, I couldn't even sit up. I couldn't get dressed, it was hard for me to eat, I couldn't use the bathroom, I couldn't bend, I couldn't take a shower… I couldn't even go outside. 

I go outside everyday now. Heck. I am back at school. I am gaining knowledge and learning new things. I am making friends. I am figuring out what i want me to be. I am figuring out what it means to truly love and appreciate. Skills I lacked completely before. I LOVE my family and friends. I appreciate every part of them and everything that they do for me. 

I was never able to love my body. I still don’t. There are times when I totally hate it. One day, back in December I was having a very rough day feeling very miserable about the mushy vegetable I was sitting in. Danielle, lovely rainbow human, said, “It sucks. I know it sucks. But think about all the things your body CAN do.” It can digest food. It can taste. I can feel. I can breath. I can touch. I can learn. And god damn i can go places and I can explore (I hope you're reading this and feel miserable)

I am okay with were I’m at. It is not what I had hoped for, and i will never say that I am glad this happened to me. But everyday when I’m in the elevator at school, someone, a security guard, a teacher, a student, a stranger will say “When you getting up?” “You’ll be back on your feet soon.” “It’s only temporary right?” “Just keep working hard and you can do it.” “Stay positive.” As if I should be ashamed of my almost completely functioning body that just so happens to be sitting on wheels. I am not ashamed. I have so much wheelchair-girl-pride in my heart so please leave me alone.  

<3 <3 <3

I have a lot of thoughts click clacking in my head right now. I really want to publish them. Thank you to everyone who keeps pressuring me to.

Here is another photo of my baby girl. 


i visited her class not to long ago. Maybe I should write about that.


I am supposed to be asleep now but I just got very thinky and needed to write. Sorry mom.
Much big love to everyone.
xoxoxo
Ruby-Joy

Tuesday, February 18, 2014

IS SHE STILL HERE?

HI!!!!! I'm so sorry I've disappeared off the face of the planet. I'm still here….
Um heres yet another terrible selfie to show you guys how strong I'm getting….
peep da pit hair doe
I guess the reason I haven't been updating very much is because I don't really feel like anything needs updating. I've sort have been caught in this dazed mix of days that are so similar they all mush together.
Its not that I'm not making any progress. Its just that the accomplishments Ive been making don't even feel significant. Being able to kick my leg or move it in and out or even stand up with a walker feels so small. I was able to do all those things when I was a baby. Isn't it weird how your body can get so much younger but your brain get so much older? Yes, I celebrate my achievements but, hell, I want to dance and crash through waves and walk. Being able to stand for a nano second and fall on my face doesn't have any significance to me. Its such an awful injury because not only do doctors not tell you certain things, they also just don't know everything. All the possibilities with spinal cord injuries (especially incomplete ones like mine) are so unknown. Its just the horror of knowing every day could be my limit. Just the maximum recovery I'm going to achieve and knowing that is terrifying.

And I'm watching people leave here. Amazing friends leave here. Its so bitter sweet to watch a patient leave because you know its all they want and whats best for them, but you also want them there because they know exactly how you're feeling. Oh my gosh, I've made such incredible friends here. One girl, and eleven year old from Brooklyn, and I became good friends and watching her leave was incredibly painful for me. She had been shot by some mistake of a human being (actually I hate this man(? human? creature?) so much) and was also paralyzed below the waist but even more than me. Every night she would come in my room and hang out with me and my friends and we all just loved her so much. She was so witty and hilarious. She could sass any nurse and still charm them with her amazing personality. She left because she had achieved her maximum and sometimes that doesn't mean walking out of here or even standing out of here and it is so heart breaking to watch. I drew her a picture and wrote her a card (which she framed) to hang in her new fabulous room. Another kid I became very close with was another spinal cord injury patient who had been shot. He was 14. A basketball player, determined to someday get back on the court. This kid has so so so much faith and he never let anyone forget it. He inspired me so much on the awful days where being a human almost didn't even seem an option. And he was so talented. In our gym there was this crappy little keyboard. He decided to make use of his time here and teach himself how to play. He gave that dumb little instrument life again. I don't know how he did it. He would just sit in his room for hours watching youtube videos and playing and playing with so much drive. We taught ourselves duets and we'ed play them for the nurses. We had so much fun. He was really hard to see go. He used to tell me, "I'm not leaving unless I'm walking out of here." and he'd say it with such determination you truly believed him.  But eventually theres nothing they can do with you short term and your goals become goals for the long run. If you're reading this, I'm sorry to say this like such a little white girl, but *I have such tremendous faith in you and thank you so much for telling me not to give up. You're such an incredible human being. thankyouthankyouthankyou.* And now it seems like I'm the lone survivor of the initial group I was admitted into. Which sucks but maybe I'm next(?!???)

I have friends visiting me everyday… here are some pictures
(also I turn 15.. whoa? also a boy likes me and I like him back. shit man. teenage blah still exist in hell.)

me and my cousin jakey
me and my olive bear
me and nikita


juuude

dannniii
melanie and meeee


chillin wit my boy mac demarco
reggie watts!


the king and queen of cute max and ruby

 I'm not sure what else to say. I should probably go to bed because I basically have to do gym class all day (huzzah.) Im basically swimming in a sea of all the same days so I guess it doesn't matter. Also I got my cartilage pierced. And another earring for my sister. Heres a picture of me and my sister. (you will forever and always be my number one)
iloveyouimissyouwhyisthisme
I swear I'll be more on top of this blog. I already have a post planned I think. Also! I read all of your beautiful comments. Thank you all so much for your love and support. Uhm I also heard that my sisters best friend, Emillio was taking this all super hard and I just wanted to say I'm here for you little buddy and I'm crushed too, but together we can be crushed together.

xoxoxoxoxoxoxo
Ruby-Joy




Sunday, January 5, 2014

BLAH BLAH BLAH IM SORT OF OKAY MAYBE

HI EVERYONE!
YES YES YES. WHAT SO MANY HAVE BEEN WAITING FOR. FINALLY. A BLOG POST.
Heres a gross selfie for you so you know I'm smiling:
I'm sorry this has been taking me so long. I've been feeling extremely uninspired recently (duh) and I promise you I've been trying to write stuff but its almost impossible. But today I felt determined. Fresh out of the disgusting rehab shower and ready to go!!

My life has changed so much in the past month so I don't really know how to begin. I have so many stories in my head about so many instances and people and hospitals, and ambulance rides and conversations that trying to find a starting point is crazily hard. Right now, I'm sitting in my ghetto wheelchair (this is what all the nurses call it because it doesn't function very well.) (I'm not racist) (or does saying that I'm not racist make me racist…) (I don't know. I'm in a wheelchair so you can't get mad at me.) making really strange grunting noises cause my left leg always hurts, and talking to my momma about how to make this post interesting. She says just to stop trying to please you guys and write how I'm really feeling.

So, how I'm really feeling is this strange mix of emotions that I'm going to try to explain but it might just come out like blah. I'm obviously sad, and angry, and totally devastated. The accident ruined everything for us. I'm grieving the loss of my beautiful, beautiful sister, and the loss of my body. A body that I hated so much before this which was SO STUPID. I had an amazing body that worked and functioned and I despised it and I'm so, so angry at myself for that. Whenever I think of/hear a girl say "ugh I'm so fat" "I HATE my body" "I don't have a thigh gap. Kill me." it makes me want to shove a pencil through there ear because THEY HAVE A BODY. Yes, I know I have one too, but it isn't the same. I want to go on walks with my best friend Max and appreciate everything we pass. I want to run down eight flights of metal stairs with my best friend Danni trying to make the most noise imaginable. I want to go iceskating with Melanie and have dance parties with Lucy. I want to go to camp and do yoga and play gaga. I want to move and walk and run and dance and I may never have that. All my friends are like "You don't know that! You're getting better!!!!!! YOU WILL WALK! YOU WILL DANCE!!" And yeah. Maybe I will… but more likely I won't. Which is so suck. So, so suck.
And wheelchair/paralyzed life is incredibly frustrating. Getting pants on becomes like, a half hour activity. If you knew before this, you would know that I am an extremely independent person who absolutley HATES asking for help with anything. (except for laundry lol). And now I need help with what seems like everything.Which is so frustrating for someone like me.Yes, I have grown to be way more independent in the past two weeks, but needing help to do something as simple as using the bathroom is so degrading and dehumanizing I can't even begin to explain it. agh.

Alright. So on top of all these awful feelings, I have so many beautiful happy feelings as well. Before this I was lonley and depressed. I felt isolated and felt like no one loved me. After the accident I realized how incredibly wrong I was. There are so many people who care about me. I have friends and family visiting me everyday. My mom has turned into wonder woman and has been taking amazing care of me. My father has been going back and forth between Massachusetts and New York City to  take care of me of take care of me as much as he can. My aunt has been visiting me all the way from Cairo, Egypt. And my friends! Oh my god my friends. I could never ask for better friends. They come here everyday, ignoring all the other fun things they could be doing other than sitting in a hospital, and talk to me and laugh with me and sing with me and most of all take care of me and it is so beautiful. I love you guys so much. Thank you.
★  ★  ★  ★  ★  ★  ★  ★  ★  ★  ★  ★  ★  ★  ★  ★  ★  ★  ★  ★  ★  ★   
But even with these positive emotions the negative ones usually kick in more. I really hate being here. Although this place works magic. It has become suffocating. My dad always says to take it one day at a time. Nikita says to celebrate the small achievements. Max says to just keep wiggling.

And thats what I'm gonna do. I wiggle everyday and magically I can now move my right leg side to side, kick it from the knee down pretty high, and squeeze my quad. (Look! I'm using fancy physical therapist words!) And my left leg which we considered the derp leg can twitch and wiggle! And as of two days ago I can kick it just a little bit!

My fingers are crossed and I'll never stop wiggling.
Much love to everyone.
xoxoxo
Ruby-Joy♥


also if you have any ideas on what i should write about or if you have any questions (a frequently asked questions post?) you can comment or shoot me an email. xoxox