Hey Kids, Shake It Loose Together

Things in the past used to be so much more absolute than they are right now. Before everything started. Hell, even right after. It was so much clearer. I was so much more certain.

I’ve definitely grown over the past months, but I’ve also become more introverted. I used to have so much more spirit and I’m not too sure where it’s escaped to. I like the way I’ve grown because I feel that I am more observant and, I suppose, wiser. I’ve gained a lot of insight that I may not have gained for years and I fully appreciate that. But, there are times when I think that I’ve grown up too fast and that this partial maturity has played a role in my introverted transformation.

At times, I think I’ve missed out on really living. I enviously watch people enjoying themselves and having fun and I wish that I could, too. And, I know that there’s nothing stopping me from having fun so that’s why I think that my new mentality is a big factor. All of my thoughts stem back to how I am different than I used to be and I know that’s not good. I know that I shouldn’t be holding myself back because I’m still the same kid. I just used to have so much more energy and I was full of life. Now, things are more low-key.

I want to be able to do something with my life that I enjoy, something for me. And, I know that’s selfish. Selfish type of work is what I’ve always wanted to steer clear from. I want to be helped the way doctors and nurses have helped me. But, after all of this time, I really just want to have fun and do something that makes me happy. Helping people makes me happy, but I want to be selfish. I can help people in other ways than I originally thought. I don’t think that sentence makes sense, but I get it.

I’d just like to figure myself out. Probably impossible, but I thought that I had already accomplished that. I thought that I knew who I was. Now, I feel so though I’m starting from scratch.

You’ve Had Enough Of All Your Trying

I know it’s vain and superficial and all of that stuff, but I wish I could smile. So badly. And I feel as though it’s such a small, trivial thing.. especially compared to everything else that’s been impaired, like the droopy eyes. But, so many people talk about smiles. How he has such a nice smile or how she has the cutest dimples when she laughs or whatever. Recently, I feel as though all people ever talk about is smiling. Or, I hear the word everywhere I turn. As though people are talking about it around every corner. I haven’t been able to smile for nearly a year. I mean, really smile. My smile. I’d like to be able to laugh without looking like an idiot. It’s in my cheeks. Because my cheeks are weak. So my facial expressions are generally heinous.

I feel as though it’s superficial because I’m the same Emily and I’m okay with not looking like my normal self. I really have come to terms with it. Sometimes, it just really gets to me. I want the smile for myself and because it’s important to me, not because of anyone else or for anyone else. I’m not trying to impress anyone with my teeth or anything. I just want to have confidence. I can only try so hard against things that are out of my control.

“If you want to be somebody else, if you’re tired of fighting battles with yourself.. if you want to be somebody else, change your mind.”

I wish it was that simple. I wish I had the willpower to just do that.

The Truth Is A Stranger

I think I used to think that everyone at college was judging me and really critical of my appearance. I think that’s was a misconception. Or if it wasn’t, then I just don’t care anymore. Because, I know that there are people who look past it all and see a person.. well, me. Truthfully, I didn’t know who I was while I was at school. I was very much concerned with my appearance even though I was completely cognizant of the fact that it would go away and that people who didn’t see beyond my appearance weren’t worth it. But, the people I have met have reinforced the idea that there are genuine people who really do care and have the capability of seeing past everything.

A couple of people visited and, while they were here, I never felt as though they saw anything wrong with me. I know that I said that I’ve gotten a lot of empty stares, but that’s not by anyone who I became friends with. Because these people are those who make me feel like a normal person. I am a normal person. And, sometimes people make me feel like an outcast, whether it’s by asking me how I feel all of time time or just by being noninclusive or whatever. But, these people don’t make me feel like that. And, I know that I keep being repetitive but I’m happy that they see a person. I was so happy this weekend.

So, thank you. For everything. I don’t know if you’ve realized that you’ve helped, or the magnitude in which you’ve helped. You’ve made me come to terms with “strangers” and their judgments. And, what I mean about that is.. I don’t care what people think. I’ve said that many times, but I haven’t meant it until now. I care what I think and I care what my family thinks, and what my friends think. Now, I really realize that my friends aren’t that hard to please and that I’m harder on myself than they are. I used to think that only applied to my closest friends that I’ve grown up with and known longest. But now, I know that’s definitely not true. And even if it’s not, I don’t care. Let me make believe.

We’re Shipping Out To Boston

My smile has faded. And it kinda stinks. Especially because a couple of kiddos from NY are here. And I really wanted them to see my smile the way that it was back when Lambert was a resident in me. That was so nice.

Other than that I’m having so much fun. I’ve missed them. And I don’t feel as though I won’t see them for a while when they go back. Which, clearly isn’t the truth. But, I’m so happy they’re here.

I’m Mrs. Extra! Extra! This Just In!

Friends from school are coming to Boston! It’s official! And I’m so excited. It’s DEFINITELY gonna be a good weekend.

So, I’m going to clarify everything that’s been happening in the past couple of months. Because, I definitely haven’t. I’ve just jumped into things now and not really explained things. Because I know what’s going on cause I’m filled in by doctors. And not everyone else is. Alright, probably should have realized that earlier. So, I’m going to start from the beginning, when I was first diagnosed. If you already know everything that has happened over the past 8ish months, you can skip this really, really, epically, and probably record-breaking long post. Read this is you have a lot of time on your hands.

I’m Gonna Shake And Shimmy It The Best That I Can

Snow makes me sleepy. I think. No, trains make me sleepy. It’s really, really funny how taking trains/Ts can make a person tired. Not that funny, but it’s weird. Or something. And it’s really fun when trees fall on the tracks and delay your train for an hour and make you miss your first class. It’s actually not that big of a deal.

I’m enjoying myself, though. Even though I spend most of my time in the library. It’s still too early to tell, but I feel as though people aren’t seeing a problem child when they look at me. Maybe I’m just too critical of people or paranoid or something. Because I’m so afraid of people seeing a whole lotta ugly on the outside and just kinda disregarding me. I think it’s a lot better because my face is a lot better. Yes, everything stems back to that. My face should be back to normal by the spring, though. That’s what someone at my pediatrician’s office told my mom. All I wanted was a rough estimate as to how long it’ll take for it to be normal.. and I finally got it. That’s all I wanted.

I need to get into a habit of working out. Hopefully with the years (or so it seems) between my classes, I’ll keep myself occupied by doing that. Oh, but I can finally work out! I’ve probably already mentioned that. Actually, I’m sure of it. Whatevs. And I found out that the pain in my chest muscle is probably a pulled muscle. Apparently, when kids get catheters inserted they tend to not really use the arm on side that the catheter was placed. So, they over use the other arm and pull a muscle. Sounds pretty accurate. I can’t wait till that pain’s subsided and I can swim/lift/or something.

Speaking of swimming, BC has a Master’s program!! Not like I’d be able to swim this spring, but it’s so encouraging in case I end up there in the fall. I don’t know though, I’m still keeping my options though. It would be cool if Columbia Presbyterian in NY accepted our insurance. But, not so much. That’s okay though, I’ve become almost freakishly attached to my care at MGH.

Cool. And love.

She’d Rather Jump Than Just Look Down

So I finally got to exercise today. First time in a really really long time. As in beginning of October. Gross. Well, if you could call it exercising. I still can’t really exert myself as much as I’d like to because of that pain in my chest. I tried to do crunches and I put my arms behind my head.. yeah, not such a good idea. I think that my mom’s going to call the surgeon on Monday. I really hope this gets cleared up because I really want to get back to normal. And I’m eating better. I’m so excited about this.

One of my friends might come up to Boston this weekend to see her cousin’s new baby. I really hope she does!!! Ahah, and tomorrow is schooooool.. I’m a major nerd if I’m all excited about that.

Some Things In This World You Just Can’t Change

I can’t help but think that people are looking at me and saying things. I don’t actually know if they are, but I don’t see how they’re not. My face is so fat and I feel as though that’s all people see. I feel so isolated, but I bet that I’m really doing it to myself. But, my face is so much different and it’s not like people don’t notice it. And it’s not like people know why it’s fat. I just keep feeling judged. And I’m not getting any vibes from people that say differently.

And, for some reason, I have this sharp, shooting pain basically in my inner right boob area. I think it’s from where Lambert was positioned. But, whenever I move my right arm in a quick and angled position I get this weird pain. Bummer.

But, on the bright side, classes start Monday! I can’t wait to take my mind off of this crap and keep myself busy with some nice chemistry and calc.

‘Cause I Am Barely Breathing

Parted from Lambert today. And I can finally freely move my arm. The first shower back wasn’t as climactic as I anticipated cause of the water’s heat control. Or lack thereof. But, a shower is a shower and I am squeaaaakyyy clean!

Wave Your Hands In The Air If You Feel Fine.

So, I was supposed to get the line pulled today. Kind of wishful thinking. Truthfully, I knew that it wouldn’t end up pulled today. I just really wish that I could shower. And, I know that one more week isn’t the end of the world or anything and I understand the reasoning for keeping it in (in case I need an emergency round of plasmapheresis cause the CellCept hasn’t kicked in yet supposedly). But…I hate having people wash my hair for me. I just miss being able to shower. And, I mean showering without standing sideways in the shower with half of my chest and arm wrapped in saran wrap. I get really paranoid that the dressing/line is going to get wet and then infected. I just really don’t want it to get infected. The thought of that gives me the heebiejeebies.

I need to find a job. And get those classes registered. And fill out all that transfer crap. And set up interviews. And email teachers for recommendations. And email the dean for all of that stuff. Jeez. I thought vacation was supposed to be more relaxing than this. Bummer, dude. Oh well, here goes nothing!