connecticut

Sometimes I question that there is a reason for everything - this past Friday was one of those times. 

I truly, truly believe that everything happens for a reason, but there are some things that I just can't fathom there being a reason for. I mean, goodness gracious, they were children. And I keep reading everywhere out here on the internets about how this man was mentally ill, and I read about gun control legislation, and I read about things that could, or could not have prevented this tragedy, and all of it makes me want to cry. 

Know why? 

Because as Americans, instead of stepping back and taking a collective mental moment of silence for all of those innocent lives that were lost to the hands of a single man, we talk about mental illness. And gun control. And then when President Obama speaks about this tragedy we accuse him of pushing policy. As Americans, in our little busy bubble, we generally don't know how to slow down, and think about things. 

I'm just as guilty as everyone else, unfortunately. When I heard about what happened my mind automatically filled with thoughts about the restrictions the government could have set that would have prevented this event from happening, whether those things would have worked or whether they wouldn't have - the thing is, there needn't be an argument about what could have prevented this. It can no longer be prevented, and unless the discussions about "what could have prevented it" include inventing a time machine, I believe that they need to stop. I'm not trying to be offensive when I say this, but the fact is, it doesn't matter what could have prevented this. It matters what WILL prevent these things in the future. It matters what changes will be made to prevent what happened to all of those children from happening again, to other innocent kids. 

It matters what changes will be made to more parents from losing their children. 
It matters what changes will be made to make students feel safe in their schools. 
It matters what changes will be made to make parents feel safe sending their kids there in the first place. 

We need to remember this event, and we need to remember those who were lost, but we CANNOT focus our attention on what COULD have prevented this. We need to focus on moving forward, on what WILL prevent these things in the future. 

And these are, of course, just the random musings of a girl who knows very little about gun control policy, or conceal carry licensing, or regulations about guns in schools, but there is an elementary school just down the street from my house. I went there; it's so close that I walked. Every afternoon when I'm on my way home from my high school, I pass those kids getting on their busses. This little mob of 6 year olds trail up the steps and onto this big yellow machine, and they're all smiling carrying backpacks with spongebob and hello kitty on them. Each of those kids is going home to parents, or grandparents, who would be devastated if something like this were to happen to their children. They would be devastated, their family would have a rift in it. 

Every day since Friday, every time I see a kid with their mom, or walking home from school, or getting off the bus, I pray. I say a prayer for every family who lost a child that day, every family who KNEW one of the children who died that day, every family who knew a family who lost someone. Because I know that if it were my family, I wouldn't care about gun control. I wouldn't care about mental illness. I would care about Grace McDonnell. And Jesse Lewis. I would care about my CHILD. 

So I think everyone needs to take a step back. They need to take a moment, and not think about guns. They need to think about those children, and how to make sure that this doesn't happen to other children, to other families. 

Brie

just to catch you up...

So today I got to go to the ER and learn that I'm not pregnant. Which was quite pointless considering everyone and their mom KNOWS that I'm not pregnant. So yeah. 

Geeks don't have time for that ish.  ANYWAY. 

What I should have been learning while in the ER was what is wrong with my hip... Which is still up in the air. Apparently ignoring my PTs (while making me feel a whole lot better about myself and lose all kinds of weight and generally making my life wonderful) made me start doing things that I maybe shouldn't do... Like things that generally end by me hurting myself. I don't really know what I did, but my right hip is in the wrong place, and it keeps rubbing against something that it shouldn't be rubbing against when I'm walking or running or existing. When things bother me no matter what I do though, I tend to just leave them be and go about business as usual assuming that they will go away on their own eventually. This didn't. Obviously. 

So this morning I went to the school nurse when I got to school to drop off my wheelchair with him, and I realized that I really needed to go see what was going on with the hip. I mean, I pretty much sat around in his office trying to pop the thing back, to no avail. I tried everything. Then he suggested that it might not even be that the hip isn't back in the right place, it could be that I've damaged soft tissue around the joint and that I really probably should go get MRIs done so that we can see what is really going on in there as opposed to just assuming that everything is fine like an idiot... AKA me. So I listened for once, called my mommy, and went to the hospital. And as previously stated, all I learned is that I'm not pregnant. Yay. 

I'm pretty sure I made some people's days though. Like the nurses in admissions, and the registration lady and such. Everyone there thinks I'm funny because my attitude is great when I'm injured. I don't know why, but thats generally what happens. I end up in a really good mood, for some reason or other, and it is much to the amusement of everyone around me. Whatever works I guess. Plus when they have to take my weight, it takes me about a total of three and a half years to take my shoes off because I still have to wear those awful boots everywhere so that they keep my ankles in place when I'm walking. Honestly though. Three years is a long time for them to find out that I still weigh 64 kilos. (Which is odd because I've been losing weight...? Oh well.) 

IN OTHER NEWS

I got my Canon T3i!!! It's wonderful. It can do everything under the sun and I'm still learning how all of the amazingness works. There are all these menus and options, and there are accessories that I still need to get for it. I'm so excited though!! Hopefully soon I'll have a cover up on youtube using it as the camera. I'm so excited about that!! Seriously. No more dinky camera from my ipod for videos of me singing. XD 

Oh! And I sent in the senior pic that I'm using in the yearbook. I edited it and everything, and I'm pretty proud. It though, was taken by a T2i that belongs to my mom's best friend, Jen. the camera is wonderful, she is wonderful, and the pic was wonderful for me to edit. So I guess wonderful was the theme that day? 

Can you guess which one is for the yearbook?? 

It's the first one. In case you didn't notice. 

That second one is me in the most awesome outfit ever, at the hospital this morning. That's my "I'm so thrilled to be here" face. This one was after they finally gave me the second gown to wear backwards so that my behind wasn't flappin' around everywhere in my blue undies... seriously. Someday I'm going to invent a cheap hospital gown that actually covers your butt. How hard is it really to do that?? Not hard. Maybe a teeny tiny bit more fabric. Plus, they make those gowns cover so little, and then make the rooms so cold!! IT makes no logical sense what-so-ever... ANYWAY. Apparently dots are the new thing in hospital apparel. Who knew? 

Brie

refusing to conform to social norms, and other things I shouldn't do

Hello internet.

Have I explained my biggest dilemma to you yet? Probably not... I've been having this problem. You see, it's about time for me to go to college, and become a real person. You know, the kind who lives on their own, and makes their own decisions, and does stuff like a real person does. And here I am, seventeen, thinking I know everything in the world... Well, not really that last part. That's whats so scary about it all.

I know exactly what I want to do. It's so painfully simple. I want to get meet someone amazing, fall in love with them, get married, have tiny people, raise them, cook dinners, clean the kitchen, end up with rowdy grandkids who drive me crazy, and die. That's it. I have no further aspirations. I mean, sure, it would be great to go to the moon, or publish a book, or record a record, or make some huge difference in the lives of other people, but the thing is, I don't really want to do those things. They're extras. The core of what I want out of life is to have a family, love them, for them to love me, teach them, be a parent, and then watch them live their lives and be successful at what they want to be successful at. If that's being a housewife, then that's what it is.

The problem here is the fact that nobody I explain this to understands. And not only do they not understand, they don't care. And you know what? That's not it either, because even if they DO care, they think I'm crazy! They look at me, and instead of seeing a person with feelings and aspirations of the life that they want to have, they see someone with what they all call "potential". They look at this walking pile of "potential" and say "Woah! We should send that potential to Harvard, or Stanford, Or Berkley, or Georgetown!" That's where all that potential belongs... Well, I think they're wrong. It drives me crazy.

I'm not potential.

And you know what? I didn't ASK to have all this "potential" now, did I? I mean goodness gracious... before I was born, I didn't sit down with God and have some conversation where I told Him "Hey. I'd really like to have an intellect so huge that the average person can see all the extra leaking out my ears when I walk down the street. I want my intelligence to be so darn obvious that no matter which way you look at me you see it, and you can't ignore it! I want to be able to do everything and anything! ...Oh, what's that? If you're going to be that smart you can't have legs that work? Oh well. That's fine. I'll take intellect over athletic ability." I didn't do that. (Nor did I intend to be that snarky a second ago... Oh well.)

My point is, I didn't ask for these cards, they're just the ones that I got. And while half of the people that I have ever talked to sit and tell me about how much potential I have and what a waste it would be for me to go into a field where I don't use it, or what a tragedy it would be for me to not use my skills for the benefit of the general population, or what a shame it will be if I don't grow up to be a neurosurgeon, or a nuclear-physicist, I'm sitting here telling the internet what a shame I feel it is for me to be forced to choose a career path and then be unhappy with my choice for the rest of my life. And by that I don't mean unhappy with what I picked, I mean unhappy that I chose to have a career in the first place. 

I don't want to ruin my own future. That's not what I'm trying to do, no matter what it looks like to you. I just want to make it what I want it to be.

Is that so hard to understand?

Is it really that difficult to grasp that some people have a different definition for success than the commonly accepted social standard? It shouldn't be. It shouldn't be hard at all, but apparently it is. It's asking people to step out of their own heads for a moment, and put themselves in my shoes. Asking them to try to understand what it means to be me. What it means to be someone with goals that are just a little different than everyone elses. Just a little smaller. Just a little... humbler. Modest. 

My goals are the goals that I've had since I was a kid... I was always afraid to tell anyone. And now that I've told everyone close to me, and gotten a negative response from (almost) all of them... well now I'm going to effectively tell the world. 

Not that anyone actually reads my little musings, this is mostly to make me feel better about myself. 

But anyway, I guess maybe I'm just hoping that someone with the same feelings reads this somewhere and goes, "Hey. Maybe I'm not alone." I dunno... Maybe that's unrealistic of me. Oh well. 

I tried. 

thankful for having... stuff

Hello internet! 

I think I'm going to start posting on here more regularly now, it's good for me. 

Anyway, it's Turkey Day! Happy Turkey Day! I feel funny saying that now, since I'll be having black bean burritos and salsa for my Thanksgiving feast. 

That's what my mom decided we were going to do. Ever since her mom passed, we really haven't had much to do on the holidays, so we've kind of been making up our own traditions. Like last year for Christmas, we went out of town and stayed in Hocking Hills for the week, and it was wonderful. 

I don't remember what we did for Thanksgiving, but I'm pretty sure it didn't involve turkey. 

And this year, I wouldn't eat turkey if it were prepared anyway. Vegetarians are picky that way... ;) 

I can't decide if this year will be better or worse than years passed though... I mean, I remember one year, I was so sick on Thanksgiving that I had to lay on the couch while everyone else was at the table and I ate homemade mac and cheese out of a cup. I was still too young to really understand why everyone was eating at the big table (we never ate at the big table) and I barely liked any of the food they had anyway, so it was no real loss to me. I remember wondering why everyone had their heads bowed before they ate, and I think I asked someone at one point, but I don't remember how they explained praying to me. At the time I had never really been around it, and now it just seems like second nature to me, you know? 

There was a time when I remember getting upset when people prayed before they ate. I think I disliked it because I found it uncomfortable, and I didn't understand. It's just not something that you really know what to think about when you don't grow up with it, you know? It's like families who hunt. If you were suddenly plopped in a family who hunted, you'd be like, "Woah, you shoot it and then cook it? And you do it all yourself??" but if you grow up with it, it's just something that you do all of the time. 

Maybe that was a bad analogy, 

Yeah. Bad analogy. 

But you get my point. Thanksgiving was the only time that my family ever got around a table and ate together. And even at that I'm pretty sure all of the men were so anxious to get back to whatever was on TV that they only spent fifteen minutes with everyone else and then they went to go eat the rest in the livingroom. I never understood that either. 

I guess what I'm trying to say is that no matter how I've gotten here, I'm thankful that I am where I am. I'm thankful that I have the people in my life that I do, I'm thankful that I'm the person I've become, I'm thankful that I have people behind me, supporting me, making sure I do the right things, keeping me in line, reminding me to be patient, and loving, and kind. I have so many things to be thankful for, we all do, and what do we do about it? Huh? We give all of those things one day in November, and then we ignore them and take them for granted the rest of the year. 

And just like everyone else, I'll go right back to that logic tomorrow. (BLACK FRIDAY SHOPPING WOOT.) 

I just looked back at that post and realized how corny some of it sounds... but it's all true. So it's true and corny, which is better than fake and corny. So there. 

To take away from the corny part, I took these pics when I was bored one day, and I just edited some of them. :D

So there you go. :D You get some really sappy family stuff, and some cool pictures of leaves in the fall. 

I think that's a pretty productive post. 

figured i'd catch y'all up...

Well internet, I got really bored today.

I have about a million things to catch you up on, since my last post which I'm pretty sure was months ago but I didn't have a chance to check before I just went ahead and started typing this run on sentence.
So anyway. I'll just make a bullet list.

• I started ignoring my physical therapist. 
• I started running. 
• I'm falling behind in school a bit.
• Speech and Debate has become pretty darn stressful if I do say so myself... 
• I've taken up charcoal drawing. 

Well.... Let's start at the top and just go through them? Yeah? Cool. 

I started ignoring my physical therapist. I kind of pretty much decided that the exercises that she gave me were terrible and they weren't helping at all, so I gave up on that. I stopped them, and started doing real normal human being exercises. You know, the kind that actually help build muscle and improve your metabolism and make you all pretty and such. And honestly, so far so good. I mean, I've been feeling better, I have more energy, I have less dislocations and more time. I really like all of the changes I've been making... Oh! Did I mention in my little bullet list that I'm a vegetarian? Forgot that one. Yeah. I'm a vegetarian. It's pretty great. I feel better, have more energy... It's that and all the exercises that I love doing, really. Smoothies are wonderful. Just sayin'. 

I started running - That's a big one. I really loved to run before I was diagnosed with EDS. Running was one of those things that I did when I was stressed or when I felt bored, or when I felt anything really. I was a runner. Runners run. But obviously, knowing the nature of EDS I wasn't able to run anymore when the PT told me what I needed to be doing and what I needed to NOT be doing, and then when I started ignoring my PT I started ignoring all of those rules, and a runner was born. Or re-born... However you want to look at it. Now I do at least 2 miles at a time, almost every day. 

I've started getting bad headaches and that's what's been keeping me behind in school. I don't know why they started really, and I kind of miss them when they creep up, so by the time they're full blown nuclear wars inside my skull I'm in the middle of a Stats test and I can't really do anything about it. In short, it sucks. One time, I got a really bad one, and I went to bed at 6:00 in the evening and didn't wake up until 6:00 the next morning. I'm pretty sure that's the most sleep I'd gotten all in a row for months... 

Speech and Debate... Oh goodness. I don't even know where to start with that one... It's driving me crazy. Plus competitions are on the Sabbath, and that's not helping because I should be at church on the Sabbath... Ugh. Can you tell I'm getting flustered? I am. Lots. Lots flustered. Flustered enough that I'm leaving that obvious grammatical error in the last sentence. Anyway. I actually got 8th of 106 in my category of competition at the Glennbrooks speech and debate tournament, which is kind of a big deal for those of you who don't know much about high school speech and debate in the National Forensics League. (So technically I'm a member of the NFL... ) 

Well, the last thing that I have right now is the fact that I have taken up charcoal drawing. I thought that I needed another outlet, something to do with some of my pent-up creative STUFF, so I decided to draw. Most of them are actually with my art teacher at school right now, because I cut the matts for them on... Yesterday. On yesterday. It's been a long day, if you couldn't tell... 

She's okay - Not my favorite. I kind of imagine that she's listening to something on the other side of that doorway. 

She looked really surprised until I fixed her eyes. 

This was the first one I ever did. I like it. It's also pretty big, like three feet by 4 and a half. 

This pic is terrible, sorry about that. It was taken by my ipod, and it wasn't taken this close up either... Oh well. 

This one looked a whole lot like me until I messed up the eyes. 

These last two are my favorite - I actually did this one yesterday. Just a day... This pic isn't great either, but you get the idea. 

She's my favorite. I have no idea who she is. That's what I like so much. 

Let's see.... There has to be something that I'm missing when it comes to catching you up... But in the meantime, how bout y'all watch this. It's the best thing ever in the history of everything. No really. 

                           

Brie

digma

You know what Loyal Readers who don't exist? I believe in God. I haven't blogged about it, so I thought I should. 

I believe in the God who created everything I have, and gave me my life to do what I will. And you know what else? I believe he loves me. I have a friend who sent me the link to a few videos last night, and they were pretty great, so I thought I would share them here, even though nobody reads this. Maybe someone will watch them... At first I wasn't a fan, and then it all changed.
So click this sentence to see the bestest video ever. And if you already have faith, click this half of this sentence to see something that just might make you cry. But anyway, I watched these, and all of the other videos that Digma has on their website, and I was amazed. 

No really. I was just all smiley for hours because it was just a re-affirmation that there are other people who believe in the great God that I believe in. Anyway, I just wanted to put that here. So watch those and be amazed. 

senior pics and the failure of an architect...

Hello internet. :) I have a few video posts that I'm working on getting up here from several days ago... I just don't know if I like a vlog format or not yet. Anyway.

I figured since I did some more senior pics of myself I would go ahead and post them because they're really fun.

This one is my favorite in this batch... I think I'm going to do another set before I get them printed.

They turned out really well I think.

In other news, I got my ring splints, and my new wheelchair. I love both things. :) My ring splints are amazing, because they really help with everything... The chair is wonderful because its compact, and light, and it makes my life a whole lot easier. :)

The unfortunate thing is when I use it at school, some of the time I don't even really need it. The reason that I use it so much is preventative. Sometimes at my school the people in the halls can be really rude, and by that I mean they will run into you for no good reason and push you down and then you fall backwards spin around and land on your kneecap, dislocating it. Not that something like that happened to me... freshman year... I'm not bitter.

But yeah. So some of my wheel-y chair use is really because I would much rather not be run into and dislocate things. Its just easier, unless I'm trying to get back from the Manchester building. You see, some designer a long time ago decided it was a really good idea to put a second building on my school, and not attach it to the main campus. The second building is called the Manchester building, and there is a road, a parking lot, and an onning that separate it from the actual school. It takes about 1/4 of a mile to get there walking. The problem herein lies that the someone who decided it was a good idea to put a California style school in the Midwest forgot that it snows. A lot. And there are kids in wheelchairs that will eventually have to wheel themselves through the snow. So yeah. This is NOT my happy face right now... And just you wait. It gets worse!!

You know how there are laws that govern things like how steep wheelchair ramps are supposed to be? Well there are. And those regulations say that wheelchair ramps in Ohio should be a 1 inch rise to 12 inch run ratio. Which is about barely sloped. So at my school there is this ramp, and its pretty much the steepest ramp I've ever seen that wasn't in a skating park, and it is PHYSICALLY IMPOSSIBLE to roll yourself up the damn thing. You end up getting stuck, and then you realize that you can't go up any further without tearing the skin off of your hands, and then at that point, you realize that you can't really move because if you do you'll tip backwards... Its a very delicate balance and no matter how you do it none of the methods end in being at the top of the ramp in the hallway that everyone has to go down to get ANYWHERE in the school. Can you tell I'm more than a little bit miffed by this predicament that I've been in multiple times? Every day I have to wait for some kind soul to walk out of the adjacent bathrooms and hope that whoever it is is having a really generous day, and that they can take three minutes out of it to push my chair. Anyway...

Gabrielle

not enough about EDNF

I do apologize, this post is kind of piece meal... by the end maybe you'll know something you didn't before. Or maybe not, who knows. All I know, is I felt like I had something important to say. I'm going to get on with it now. Yeah. 

 I went to the EDNF conference in Northern Kentucky this past weekend, and it was AMAZING. Really. There were so many things to learn, and so many people with EDS, it was crazy. Everybody had some little trick to teach you. Not only that, but all of the seminars were really informational and such, and it was great to talk to the experts about how they treat patients with the same problems that I have.

The Silver Ring Splint company was there, which was pretty amazing in itself. I ended up being fitted by the woman who actually owns the company. I was there for going on three hours trying to figure out the solutions to the finger problems that I have been having. My pointer fingers and my pinkies have been dislocating lately, once it was even just by setting my hand down the wrong way. I picked out all kinds of splints that way I won't have a bunch of my hand problems anymore, the pointer finger thing unfortunately doesn't have a splint, but I ordered all of the other ones and I'm really excited to get those soon. 

The other thing that I learned a lot about during the conference was wheelchairs. Mostly because me and the Instigator (another member of the Bendy Rebels from cripple camp...) took turns in the one that he brought with him. The first day of the conference I ended up rotating my left hip and the next day he ended up rotating his right, so we were pretty messed up that weekend... Anyway. 

So when the conference was over I came home and relayed all of these things to ma madre, who was not thrilled that I spent so much money at the conference. Not to mention the 200 dollar shoulder brace that I bought for myself while I was there... Yeah I did that. I tried the thing on, and I thought that it was so amazing that I had them hold it there for me, and I just bought it. I was very happy about it too... :)

I learned all kinds of things about why I can't sleep too, and about disautonomia in general, which is what most likely causes my sleeping problems. Apparently my body basically doesn't know how to regulate my adrenaline output and my heart rate (in the simplest terms) because I'm just wired funny, and so I wake up all of the time because my heart rate wakes me up, and I'm sure some of the time pain does too. But I learned that, and I learned how to set up a 504 plan at my high school which I am in the process of doing right now, and I learned all about scary shoulder surgery. 

And the sunday after I learned that if you pay attention to your surroundings you can find perfectly fine wheelchairs sitting outside of fire stations with huge "FREE" signs on them. So yeah. That definitely happened. I thought that my mom was crazy when she turned the car around too. It was pretty great. She pulled into the church across from the fire station and I was like "What the hell mom??" and she said nothing, and then I saw the chair and I said "Woah!" followed  by several expletives that represented my shock well. :) It was a pretty amazing five minutes, I'm not going to lie. I mean, we already ordered me a wheel chair but I won't have it until next week. It was pretty good to know that the universe is watching out for me. 

In other news, I would really like to get a pet. 

That is tacked on there just in case my mom is stalking my blog. She needs to know that I should be allowed to get a female pet rat, and name her Rose, and let her roll around my room in a hamster ball. 

So if any of my mom's friends are stalking my blog, put in a good word for Rose the rat. So yeah. 

boots

So yesterday I got a pair of boots. I had been looking to get a pair for a while, but then at the camp there was another EDSer who wore them all of the time, and he explained all of the awesome things that boots do, so I got a pair, and you know what? He was definitely right. Completely. :)

So firstly, the boots are adorable, and I'm okay with wearing them all of the time. Second, I can't really walk without my inserts anymore anyway, and even on top of all that, they are beyond helpful. They stabilize my ankles, which is pretty amazing. I got out of the car yesterday wearing them, and I turned too much, and I heard two consecutive pops, one in my knee and then one in my ankle, and all I did was take my weight off of that left leg. Thats all. I had never realized that there was a pop when I subluxed my ankles before because my face is normally flying in the direction of the ground. It was just amazing to feel my ankle sublux but not become close personal friends with my driveway. :) 

My boots definitely hold my ankles in place, and they are making it a lot harder for me to hyper-extend my knees when I walk because it means that my legs are more correctly aligned. Its pretty great. Now I need to get some really cool socks to wear part of the time... :)

Brie

wheelchair rant. yup.

Well, I finally have a little time to talk a little more about nationals. I qualified in Student Congress (this was high school speech and debate nationals... anyway.) and I was the first alternate Western Ohio district in Drama, which is my actual category. Imagine that. Me, dramatic. Anyway. 


The unfortunate thing about nationals wasn't that competing in a category that I had only ever done once stunk, it wasn't that I didn't get to sleep in my own bed, and it wasn't even that going all around Indianapolis because we didn't stay in the hotel where congress was hosted was inconvenient. The most unfortunate thing about nationals was that after three days I ended up stuck in the wheelchair that we brought with us. And in all honesty, hindsight being 20/20 we almost didn't even bring the thing. We had to tie it down to the roof of the "intermediate SUV" that we rented for the trip. It was quite the sight  when we were putting it up there too, one of my coaches was running boy scout knots through his head trying to make sure we wouldn't lose it at the side of the highway... It was craziness. 


Needless to say, the boy scout knots were pretty effective, because we I had to do the rest of the weeks competition in the wheelchair after I was done with congress. During the last 3 hour session I subluxed my hip, so I couldn't really put weight on it, especially in the not-so-super sensible shoes I was wearing at the time. (Speech and debate is strictly business attire...) The staff was really nice about it though, that was the one thing that really surprised me. They were definitely really accommodating, which I really appreciated. One of the guys from TAB (those are the people who tabulate all of the results from the tournament) came to my congress chamber with a wheelchair for me to use until I could switch to the one that we brought, and then he wheeled me into the common area because the thing was terrible to try to roll on carpet. Oh!! Soap box time!!!


So, handicap accessible bathrooms? I wanted to shank whoever decided that all you really need to be able to get into a handicap stall is 6 more inches of space in width and a foot in length. Totally. Because it is SO easy to get a wheelchair in the three by three space that is most likely the legal state minimum size for the restroom to be handicap accessible. Want to hear some more? Thats not even all of it. This hotel... UGH. The bathroom door was one of those that was perpendicular to the wall it was on, with one of those little indented areas. that you have to pass through to get to the door. It was IMPOSSIBLE to turn the wheelchair at a sharp enough angle to get it in there with me in it, so I had to stand up and limp in there, shrink the wheelchair down and then pull it in with me, and then expand it by myself (not a simple task, let me tell you...) and sit down, only to look up and see the slightly larger than normal stalls handicap stall. I was not thrilled, if you didn't notice that already. Honestly, if I'm ever a politician one of the first things I will do is make the world just a little more fair for all of us disabled people... I just can't believe that it is legal to have that little of a difference for the stals. There was just no way to possibly get into that bathroom without getting out of the chair, which begs the question, what about all of the people who are in wheelchairs who CAN'T limp like I can?? What about amputees who didn't get prosthetics, or people with degenerative spinal diseases so they really physically can't get out of their chair. What are they supposed to do?? Crawl on their hands and knees?? Honestly it was cruel and unusual punishment. I would love to meet the guy who drew up the final blueprints for that hotel and kick him in the kneecap so hard he would have to be in a wheelchair, and then he'd understand exactly how difficult the world is when the bathroom stall is six inches wider than the normal ones. 


The thing is, its like that everywhere. Doors without handicap buttons? You better be sure someone is going to hold the thing open for you, because if not you are just shit outta luck my friend. The pull ones are the worst, because you have to open it about a foot, then move your chair without letting go of the door because if you sit your chair too close to the door you're pulling then (obviously) the door won't be able to open because you're in its way. Its a very complicated task. Hotel breakfast counters? I needed a flippin' periscope to see the doughnuts. It was ridiculous. OOO!! The really awkward one. Being in a public restroom that has four normal stalls, and the only one in use is the handicap one and the girl in there is perfectly fine. So at that point you have to wait there, awkwardly in your wheelchair until the girl comes out. This specific girl went white as a sheet and felt so bad that I had to wait that the only thing that came to her mind to say was "Oh my God, I'm so sorry, I feel like I parked in a handicap space! I'm so sorry..." I thought the whole thing was pretty funny after I got over the fact that I had to wait for about ten minutes. See, then there's the really embarrassing stuff, like rolling over peoples toes. I felt terrible when I did that, and I wasn't rolling my own chair so I don't blame myself totally... Anyway, there was this really narrow hallway that we had to go through, and there were people sitting on either side and some guy didn't move his feet. I apologized profusely, but get this. He was VERY adamant that it was definitely his fault, and that I shouldn't be sorry at all. Eventually I looked at the guy and I said "Look, I'm the one in the wheely-chair. Its my fault, I'm sorry." I just felt to bad. 


Wanna know something else great about wheelchairs? There are two basic healthy-people reactions: 


1. I'm going to really awkwardly stare at you until I figure out what is wrong with you because you are obviously not wearing a cast. I will also make a sympathetic face that implies I know what you are going through, that way when you notice that I am obviously staring at you it won't seem rude. 


and 


2. I'm going to pretend to completely ignore you. No really. I'm not looking. Okay, maybe I'm looking but just out of my peripheral vision, so you can't tell. Maybe you can't tell because you're mentally challenged? Yeah... You're not wearing a cast and you obviously have healthy looking legs... You're probably mentally challenged. Oh! I could say something casually and see if you're normal or not... 
*healthy person:"Odd weather we're having." 
*disabled person: "Yeah, looks like it will rain. Those cumulo-nimbus clouds are starting to look really ominous."
Well damn. 


Seriously though, those are the two reactions. The "sympathetic" people, and the ones who are obviously trying to assess your intelligence because you look like one of those people who is in a wheelchair because they don't have the mental capacity to walk. And don't get me wrong, I have no problem with those people, Thats not what I'm saying. My problem is that people are all so nosy that they feel the need to know exactly what is wrong with disabled people. Even myself. I catch myself doing it sometimes, like when I see someone who looks perfectly healthy park in a handicap parking space and they have the tag in their car. In my head I go "Seriously dude? Seriously. That 80 year old woman there could have used that space but no. Now she's going to have to walk three miles to get into Elder-Beerman. Good job." Even though they have the handicap tag, in my head I'm thinking about how they don't look like they're disabled so they don't look like they should be able to use that parking space. Since I've been diagnosed with EDS I have stopped questioning it as much though, now in my head I go through all of the invisible things that could be the reason behind that person parking in the space. Maybe they even have EDS like me... Anyway. 


TANGENT. Back to what I was saying earlier. There are two reactions that you get from people, and neither of them are particularly thrilling. People really don't know what to do around disabled people, especially disabled kids. And realistically, with the way that prosthetics are these days its not a long shot to say that normally the only people who end up in wheelchairs are those with genetic diseases, and those with broken bones. Thats not all inclusive, but its pretty close. The thing is most people these days don't encounter people in wheel chairs, so they don't know how to act around us. They just don't get it. I really don't need help. Sometimes I do, but I will ask if I really need it. Doors, okay, maybe that would be helpful, but I can definitely press the button for the elevator, and drink from the drinking fountain (I learned on that trip that the short water fountains aren't that size for very small people. I had no clue that they were for people in wheelchairs. I got really excited when I realized thats what it was.) and I can carry things, and I can definitely take care of myself. Healthy people don;t know how to react to that. They tend to assume that people in wheely chairs wither want their help, or need it. I don't quite understand the logic... Anyway. 


Its time for this snarky EDSer to go to bed... 


Brie

nats?

In the past ten minutes I remembered that I haven't posted anything about nationals on here yet, and Nats was over a month ago. I feel like I have deprived all of my non-existant loyal readers... Anyway. Nats went really well, and I didn't have much time for photography while I was there, but here are a few pictures from one of the days we went out. :)

 

This is a really cool mural in Downtown Indianapolis that I saw when I was on the way to the market. 

 This was a really pretty archway that I thought I would take pictures of. It was really pretty. :)

This was the restaurant that I got my lunch at when we went to the market downtown. Their logo is an elephant so it makes me really excited. They had all kinds of elephant related things to photograph. 

This was the side of one of the vendors booths. It went on forever, but there wasn't any room left to write anything else on it so I didn't get to doodle. :(

This is my favorite picture that I took the whole trip. I really liked the effect that I got by looking in the window. It was really weird for me to look back on being in the chair too... It was so strange to be so dependent on other people for that longs. I didn't like it that much. 


I guess I'll post some more stuff about Nats when its not one in the morning. :)


Caesura

debbie downer

I'm in a really bad mood today. Most of it probably has to do with the fact that I've barely been sleeping ever, and the fact that I've been looking at my work schedule and my school schedule, and everything is so jam packed I feel overloaded with things to get done and things to plan for and its CRAZY. 


I guess the other thing is all of my friends are starting to really think about college and all I know is that I want to go into social work. Thats all I got. I want to work with kids, and I want to be more on the counseling side of the social work spectrum, so I know what degree I need I just don't know where to get it. I also don't know how I want to go about getting my degrees, like if I want to do a major and a minor... Ugh. I just don't know what will be easiest, and the other problem is the fact that Ehlers gets in the way of me getting things done a lot of the time. I make a serious effort not to let it effect me the way that it could, but I worry that it might become less manageable when I'm all by myself or even sharing a dorm. I don't share well... Also wherever I go will have to be REALLY handicap accessible. There are all kinds of things that I will have to think about that normal teens don't have to think about when they're picking a school. It gets so complicated, and I really don't like it much right now. Anyway... 


I don't know what to do exactly when it comes to school yet... I guess I kind of ranted here, didn't I. Whoops. :)


In other news, I worked this morning at this really neat product brainstorming session for some company that I don't even know the name of because everything is really top secret. They hired my boss and I to teach the people a little about henna tattoos for their workshop thing... It was really neat. Odd, but neat. 


Just felt like sharing. 


Brie

gastro, senior pictures, and chili. not in that order.

I already remembered something else to babble about. 


My gastro problems have been getting worse, and the doc is actually trying to keep a close eye on me because I lost some weight between appointments, and because my symptoms have been getting worse. Guess what we think the problem is? Wait for it... Milk. >:(




So we think I'm lactose intolerant, which really stinks because in my house ice cream and milk each get their own food groups. I mean, the house has three women, so basically we eat salad, macaroni, ice cream, and chicken when we need protein. Its not exactly as if we keep all kinds of food in the house, because we don't eat that much. But now Brie has to branch out and she likes it so little that she is writing about it in angry third person. I mean, I made eggs for breakfast, I've been eating bananas like crazy... I tried to eat a greek gyro last night, but that didn't agree with me. From what I've read lots of EDSers will develop gastro problems, especially if they're on naproxen like me that tears up your stomach. 


The other thing that I just love? My mom made chili for dinner. Yeah. Chili. And I know that chili has nothing to do with lactose, but there is no way I'm going to be able to eat spicy chili... I hate the "find-food-that-Brie-can-actually-eat" game. I'll just throw together fruit salad... 


Oh! And something else to update about, I did my senior pictures. I'm not done with all of them yet, but I figured that I would put what I have done up here because I'm kind of proud of them. :) 

If you can believe it, these are all taken in places in my yard and my house so far... 

Most of my friends think this on is their favorite now. 

Well, thats all for now folks...