Brain Diarrhea

I’m nearly done with The Fault in our Stars. Everyone else I know who has read the book has burst into tears in parts I’ve already read and here I am, and I don’t have a lump in my throat or anything. It kinda just makes me sad. I feel no attachment to the characters at all, but it resonated enough with my life to hurt a bit. Kinda like two parallel lines, very similar but never meeting.

My brother is a wonderful kid. He’s always smiling and I love the kid to death. We’ve been best of friends and worst of enemies pretty much since he was born. It’s an honor to be his big sister and I mean that with all my heart. Three years ago he started acting strange, and they diagnosed it as ADHD, except without the hyperactive part, cause he’s kinda the opposite of hyperactive. And ADD apparently doesn’t exist anymore. Stupid. We moved, four months after the move, I was called out of the middle of taking a shit to hear rattling and my mom screaming my name. I ran out to see my brother in the middle of a seizure. Creepiest fucking thing I have ever seen, or will ever see. I did what I could. Mom took care of him, I got my other little brothers into another room, I called 911.
Our dishwasher had broken that week. That sucked.

So he was taken to the hospital, and I watched my brothers. Things are a little fuzzy after that. He never had a full blown seizures after that. He only had one. The doctors figured he had epilepsy.
Alright, the boy has epilepsy.

Over the next month or two, he had “episodes”. He’d be fine, then he’d fall over. Eyes were open, but nobody was home. We don’t know if he could hear us or not. He was just gone. They didn’t normally last longer than four minutes. We were told if they were longer than five minutes, take him to the hospital.

The scariest one I remember was all in one day. He collapsed a lot, walked around in his episodes without actually being there. He woke up a few times. The fourteen year old boy woke up, thinking he was seven years old. Then he was gone again. He woke up again, he thought he was four years old. He didn’t know where we were, and didn’t recognize the house. He thought we lived in a different state, and he didn’t recognize his younger brothers.

He still to this day occasionally has episodes, but not nearly as often as during those times. I suspect his brain was damaged during those episodes, he always seemed worse afterwards.

Well, the doctors confirmed he definitely did not have epilepsy. We filled out a bunch of surveys about him, sent them to the doctors. He was diagnosed with Asperger’s Syndrome.

He began having tremors, hands shaking all the time.

His attention span and memory decreased rapidly.

We had him go to Mayo Clinic, where they performed test after test after test.

They stayed with Asperger’s for the time being, although my mom and I were suspicious.

Asperger’s is something you’re born with. He used to be a normal kid, with friends, and was the best on his baseball team. It wasn’t something you suddenly get.

We did more testing. The doctors suspected that he had Sanfilipo. That is not a ethnicity, which is what I thought when I first heard the word. It is a disease that has to do with storage in the brain. I don’t remember exactly what it all does, but it sounded like him. Tremors, slowly becoming more disabled. Scary thing was, that meant that we only had a few years left of him. Most kids with the disease don’t live out of their teen years.

Part of me hoped he had it. That would mean we would be done searching, and maybe moving forward and trying to find a cure for it. And maybe it would put him out of his misery. Part of me didn’t want him to have it.

A week ago we got the results. He doesn’t have it. The doctors are completely clueless as to what he has.

His MRI has changed. A year ago when he had the big seizure, his brain was normal. The most recent one now shows gaps and spaces in his brain that weren’t there before. He doesn’t match up to any of the typical brain diseases, and so they got out more into the way out there six people in the world has diseases (hipster indie diseases) and he doesn’t even have THOSE. Hey, if we’re lucky he’ll get something named after him.

He’s becoming more and more disabled. He can’t tolerate much noise or music. He has to be in control of everything. It’s nearly impossible to get him out of the house for anything other than his therapy. Sometimes his head hurts, and he can’t explain it. His episodes are becoming stranger. It’s become a norm in the morning when I go in his room to give him his medication, I check to make sure he’s even breathing, because I’m sure sooner or later I’ll walk in his room and he won’t be. I have to make all his food, because he’ll either forget, or his tremors are too strong and he’ll drop things.

I love this kid so much.

He’s essentially trapped me and my mom. My dad’s an abusive asshole, and he lives in a different state, and if I never see him again, it’ll be too soon. I’ll explain more later, but suffice it to say when he’s around, he hurts more than helps, and so it’s only me and my mom. Someone always has to be home with him, and my mom’s schedule is insane with work and meetings and therapy that I can’t get out of the house hardly at all.

I’m a natural extrovert, a rare creature on the internet, but with the insane stress, I have nearly no friends, due to the fact I never get out, and when I do get out, I have two switches: loner or borderline bitch. There are times when I can be nice and friendly but those are few and far between. My hiding place and escape is roleplay, where I can construct fake lives and have friends and imaginary (smoking hot) boyfriends. It’s awesome. It feeds the shriveled up Voldemort soul that is my extrovertedness.

I said I’d explain about my dad. I used to think he was awesome, as all kids think of their dads when they’re little. If you meet him, you’ll think he’s really awesome, funny, great guy. That’s the thing though. He is performing for you. All that matters to him is his friends, and how he looks to them. Us kids, and mom, exist to make him look good.

(I’m currently plotting a way to make him believe I have a life and then make him freak out in a year when I tell him I’m getting married. It’s awesome. He’ll believe anything I say. Then I’m going to tell him that everything I’ve told him for the past year is a lie. BAZINGA.)

Last October, I think it was, he came and he put one of my other little brothers in a headlock, thinking that that would calm him down.

My anxiety ridden brother.

Headlock.

Yeah. Any of you with any anxiety issues at all will know that once you’re at the point of screaming at another person being put in a headlock is the LAST THING you need.

We called child protective services, but since there wasn’t any bruises, we couldn’t do anything against him. It’s on the record, though.

He’s been emotionally abusive for years. He’s kept my mom practically locked up in her room, only needing her out to keep us kids under control or to show off to his friends. To look good.
I am now, at seventeen, having to learn for the first time to work hard because he always did everything for me, and I was always his favorite (more on this later) so I could get out of anything (including homework) and get him to do my chores for me. So now I’m having to learn all this stuff. Seriously miffed at him. Plus, I’ve got lingering feelings of worthlessness because remember, I exist to make him look good to his friends.

Lastly, sexually abusive. I’m his favorite, in more than one way. It’s nothing like bad touching, or raping me, but it’s enough to make me seriously not trust guys. A few years ago he almost kissed me, and since my mom’s pretty much closed off to him, he’ll go to the next best thing. Yours truly. He’s very affectionate with me, tells me all the stuff he should tell Mom, discusses stuff with me I honestly don’t want to know/don’t care about. He touches me on the shoulder, or the cheek, the way a boyfriend would. Ew. I’ve seen him check me out, so I intentionally wear unflattering clothing around him. Woohoo fuzzy pants and hoodies. Oh, not to mention many comments on “what a beautiful young lady I’m growing into.” Wouldn’t be so bad if it werent’ for the other stuff. I only put up with it to protect the family. Once my parents are divorced (oh happy day) then I will tell him to fuck off and that I hate him and want nothing to do with him ever again, change my last name to my mother’s maiden name, be free from that ass who doesn’t give a fuck about me.

SO yeah. Life is insane. I don’t know if it’ll ever really get better. I’m limping through college courses, or attempting to.

Don’t pity me. This is making me stronger, and when these stressors disappear I have to believe things’ll get better. I can’t tell many people irl, but I’m kinda just writing this all out to just get it out. I know there’s more I could add, but I doubt you’d want to read it, and if you’ve got it this far, thank you, you are wonderful and I love you. High fives are appreciated. Hugs too.

One step at a time.