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My Parents are Dead and My Sister is Disabled

therealbarbielifts:

eisforedna:

On May 28th, my sister, Edna, turned 31.

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Her mental age is about three years old. She loves Winnie the Pooh, Beauty & the Beast, and Sesame Street. Even though the below picture is unconvincing. 

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Edna and “Cookie.” I think she was trying to play it cool. 

My name is Jeanie. I’m Edna’s younger sister. I’m also her guardian and caregiver. 

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That’s me on the left. (Hey, you never know. After a year of writing a blog about online dating - Jeanie Does the Internet - I’ve come to learn that there are A LOT of fools on the internet.) 

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ANYWAY, I’m not “doing the internet” anymore. I’m taking care of Edna full-time, after completing my MFA in Writing for Screen & Television at USC.

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May 16, 2014. I wanted a picture. Edna wanted breakfast.

In case you’re wondering where our parents are, they’re dead. Our mom died of breast cancer when she was just 33. 

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Us with mom before she died. (Obviously.)

As for our dad, he peaced-out around the time my mom got sick. His loss - we’re awesome. 

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Here we are being awesome at the beach. Pushing a wheelchair in the sand? Not so awesome. 

In case you’re wondering “What’s wrong?” with my sister - as a stranger once asked me on the street  -  NOTHING. Yes, Edna has a rare form of epilepsy - Lennox-Gastaut syndrome - but I don’t know if that’s anymore “wrong” than people who don’t have manners. 

Basically, Edna was born “normal,” and started having seizures as a baby. They eventually got so bad that they cut off the oxygen to her brain, causing her to be mentally disabled. Or impaired. Or intellectually disabled. Or whatever you want to call it - except “retarded,” because in 2010, President Obama signed Rosa’s Law into effect, replacing that word with “intellectually impaired.” 

Which is cool and all, but services for the disabled and the people who care for them are SEVERELY LACKING. Also, there’s a bunch of people working in taxpayer-funded positions who are supposed to help families like us, but don’t. (Big surprise, I know.) They just fill out paperwork (whenever they feel like it) with asinine statements like this: 

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YUP. I transport my sister down the stairs in her wheelchair, because that is not only safe, but TOTALLY PRACTICAL. Why doesn’t everyone in a wheelchair just take the stairs, for God’s sake? Stop being so lazy, PEOPLE WITHOUT WORKING LEGS! 

But, as it says above, Edna’s legs do work. Whether or not she wants them to, is another story. 

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Edna refusing to go inside. 

These are the stairs that I have to carry her up - by myself - on a daily basis. That is, until one of my legs break and both of us are just sitting at the bottom of the stairs, helpless. 

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For six months, I have begged - BEGGED - the State of California to help my sister, which they are required by law - The Lanterman Act specifically - to do so. But they’ve told me “these things take time” and that I “need to amend my expectations.” (That was said to me when I refused to place Edna at AN ALL-MALE CARE FACILITY. Because yes, that was an “option” that was offered to me.) 

Prior to Edna moving in with me in my one-bedroom apartment, she was living with her amazing caregiver, Gaby, back in Tucson, where we went to high school and I did my undergrad. Edna’s reppin’ the Wildcats below. 

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But back in November, Gaby also died from breast cancer. (FUCK YOU, BREAST CANCER!) This picture was taken a month before she died. She never even told me she was sick because she didn’t want me to worry. 

By the way, we were raised by our grandma. Edna and her were very close.

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She’s dead, too. Surprise.

She died when I was 20 and Edna was 21. That’s when I became Edna’s legal guardian and Gaby stepped into the picture to help me out with Edna. 

So, six months ago, after Gaby died, I moved Edna to California, where I tried to get the folks over at The Frank D. Lanterman Regional Center to help me. I’ve told them I’m worried about our safety - that one of us could get hurt on the stairs -  I’ve told them I can’t afford to pay the private babysitters $15/hour because the ones social services sent me who make $9/hour were unreliable (they didn’t show up on time or at all so I could get to school and work), untrustworthy (one of them let Edna go to the bathroom in the kitchen and then took her into the bathroom because “that what I thought I was supposed to do.”) 

But the people over at the FLRC don’t return my calls, they don’t file the paperwork on time - and the first caseworker that was assigned to us actually LAUGHED AT my sister when he came to our home to evaluate her. When I reported him to his supervisor, she told me, “That’s just [insert name of said jackass].” 

He was one of the two caseworkers that contributed to the report I mentioned above, which also included this: 

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So let me get this straight - I have to feed, bathe, dress and help Edna in the bathroom and you can’t deduce whether or not she is able to vote? What in the fuck?!

Now I realize I seem angry. And you can bet your balls I am. I’m also sad. Sad for those who don’t have family to stick up from them and who waste away God knows where, monitored by no one. Or monitored by people who physically and sexually assault them

I’m also sad for the caregivers who are SO EXHAUSTED - trying to take care of their loved ones - while also trying to take care of themselves and battling a system that is supposed to help, but does nothing of the sort. And I know a lot of people give up. They let their dreams, their marriages, their friendships slide. All while trying not to resent the very person you’re doing it all for.

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Edna wanted to sit next to me the other day while I was writing. Clearly, she’s not impressed. 

Here’s the thing: I REFUSE TO GIVE UP. I’M NOT GIVING UP ON HER OR MYSELF. I’m going to pursue my dreams while taking care of her, AND while ensuring that the people paid to do their jobs ACTUALLY do them.

That’s where you come in. I need you to help me get my story out there. Because I know I’m not alone in this. I want to connect with families who are in similar situations and also show people who have no idea what it’s like to care for someone with a disability (or even a loved one who is sick) that it can be rewarding. Super fucking hard. Exhausting. Painful. Isolating. But, rewarding. 

I’m going to get help for my sister - and others. My hope is that by sharing our story, I can bring awareness to the lack of services and help for the disabled. 

Thank you, 

Jeanie 

Facebook:  facebook.com/eisforedna

Twitter: @EisforEdna 

This made me cry

(Source: , via realgirlfitspo-deactivated20140)

5,562 notes

The press still thinks [global warming] is controversial. So they find the 1% of the scientists and put them up as if they’re 50% of the research results. You in the public would have no idea that this is basically a done deal and that we’re on to other problems, because the journalists are trying to give it a 50/50 story. It’s not a 50/50 story. It’s not. Period.
Neil deGrasse Tysonpodcast interview (via we-are-star-stuff)

(Source: , via we-are-star-stuff)

46,378 notes

usuallycrazy:

Twitch Plays Pokemon is the wildest thing I have ever watched and I frankly can’t stop.
If you’ve been living under a rock (or you’re just not up on Pokemon news, that could be a thing, in which case, your life must be so very sad), there’s a Twitch chat room with far too many people in it undergoing what the creator refers to as a “social experiment.” Each person in the chat submits a command they want the player to do and, with a 20-30 second delay, the Pokemon Trainer does the command.
It’s made it the most frustrating game of Pokemon ever played but also the best. Because they’ve been playing for five days straight, have four badges, and have somehow maneuvered two cave mazes.
Due to the delay and trolls, we have often found our poor trainer opening his menu, checking his bag, and looking to the Helix Fossil he acquired in Mount Moon. 
Which of course, does nothing.
But in the middle of a Pokemon battle, better open my bag and check on the Helix Fossil.
About to cut down a tree. Better open my bag and check on the Helix Fossil.
I’m trying to enter this cave. Gosh, I need to make sure I haven’t dropped my Helix Fossil.
The people in the chat room have come to the conclusion that the Helix Fossil is an artifact of the Pokemon Trainer’s religion and that his ultimate goal is to resurrect Omanyte from the fossil.
Oh yes, they’ve brought religion into the game.
Even to the point where, when players in the chat were discussing that they needed a Pokemon to learn Surf, some had said “Let’s just wait until we get a Lapras later in the game. That just gets handed to us and will be much easier to do and we won’t run the risk of needing to deposit anybody in the PC and accidentally releasing anybody.” (We’ve already accidentally released our starter, so our current strongest Pokemon is a Pidgeot we call Based Pidgeot or Bird Jesus) 
Others said “Let’s pick up the Eevee from Celadon Town! We’ll go to the Department Store, buy a Water Stone, and get a Vaporeon! It will be much better.”
We wasted all of our money on 8 Poke Dolls and an accidentally purchased Fire Stone.
Flareon has been called a heretic in this game.
Flareon is literally Satan to these players.
You weren’t there for the Celadon Department Store, okay. We got lost in there for one whole day and I watched it happen. It was awful. The work we put into getting this dumbass Flareon was awful.
So, we had to deposit Flareon in the PC because he was utterly useless. Which was when we accidentally released our Charmeleon.
The players determined this was simply what the Helix Fossil wanted and we had to trust in our Bird Jesus and never follow false gods again. Just let Lapras happen. Trust in the Helix Fossil.
Now, the players had been stuck in Rocket Hideout on those damn moving arrows for exactly two days. So the creator instated a chatroom based vote where you could decide on anarchy—the way we had been playing the whole time with individual players participating in a free-for-all—or democracy.
If 75% of the players had agreed on one form of governing, that was the system we were currently using in chat.
Democracy involves each player submitting a command and the game tallying to see which action is voted for most and popular vote wins.
This game has user-inserted religion and now creator inserted government.
The players spend so much time arguing over which form of government to use that we often get nowhere.
This is the weirdest virtual reality based Japanese RPG I have ever seen.
I have no idea what kind of social experiment the person who created this chat room is trying to do—they wish to remain anonymous—but this is positively delicious mayhem and I may never see this many people excited about a game made in 1996 again.

usuallycrazy:

Twitch Plays Pokemon is the wildest thing I have ever watched and I frankly can’t stop.

If you’ve been living under a rock (or you’re just not up on Pokemon news, that could be a thing, in which case, your life must be so very sad), there’s a Twitch chat room with far too many people in it undergoing what the creator refers to as a “social experiment.” Each person in the chat submits a command they want the player to do and, with a 20-30 second delay, the Pokemon Trainer does the command.

It’s made it the most frustrating game of Pokemon ever played but also the best. Because they’ve been playing for five days straight, have four badges, and have somehow maneuvered two cave mazes.

Due to the delay and trolls, we have often found our poor trainer opening his menu, checking his bag, and looking to the Helix Fossil he acquired in Mount Moon. 

Which of course, does nothing.

But in the middle of a Pokemon battle, better open my bag and check on the Helix Fossil.

About to cut down a tree. Better open my bag and check on the Helix Fossil.

I’m trying to enter this cave. Gosh, I need to make sure I haven’t dropped my Helix Fossil.

The people in the chat room have come to the conclusion that the Helix Fossil is an artifact of the Pokemon Trainer’s religion and that his ultimate goal is to resurrect Omanyte from the fossil.

Oh yes, they’ve brought religion into the game.

Even to the point where, when players in the chat were discussing that they needed a Pokemon to learn Surf, some had said “Let’s just wait until we get a Lapras later in the game. That just gets handed to us and will be much easier to do and we won’t run the risk of needing to deposit anybody in the PC and accidentally releasing anybody.” (We’ve already accidentally released our starter, so our current strongest Pokemon is a Pidgeot we call Based Pidgeot or Bird Jesus) 

Others said “Let’s pick up the Eevee from Celadon Town! We’ll go to the Department Store, buy a Water Stone, and get a Vaporeon! It will be much better.”

We wasted all of our money on 8 Poke Dolls and an accidentally purchased Fire Stone.

Flareon has been called a heretic in this game.

Flareon is literally Satan to these players.

You weren’t there for the Celadon Department Store, okay. We got lost in there for one whole day and I watched it happen. It was awful. The work we put into getting this dumbass Flareon was awful.

So, we had to deposit Flareon in the PC because he was utterly useless. Which was when we accidentally released our Charmeleon.

The players determined this was simply what the Helix Fossil wanted and we had to trust in our Bird Jesus and never follow false gods again. Just let Lapras happen. Trust in the Helix Fossil.

Now, the players had been stuck in Rocket Hideout on those damn moving arrows for exactly two days. So the creator instated a chatroom based vote where you could decide on anarchy—the way we had been playing the whole time with individual players participating in a free-for-all—or democracy.

If 75% of the players had agreed on one form of governing, that was the system we were currently using in chat.

Democracy involves each player submitting a command and the game tallying to see which action is voted for most and popular vote wins.

This game has user-inserted religion and now creator inserted government.

The players spend so much time arguing over which form of government to use that we often get nowhere.

This is the weirdest virtual reality based Japanese RPG I have ever seen.

I have no idea what kind of social experiment the person who created this chat room is trying to do—they wish to remain anonymous—but this is positively delicious mayhem and I may never see this many people excited about a game made in 1996 again.

(via cupboardfull)

488 notes

wildcat2030:

University of Vienna app uses your phone for research while you sleep
Our mobile phones generally lie dormant while we’re asleep, which means that millions of powerful processors are going unused for hours at a time. Samsung Austria and the University of Vienna’s Faculty of Life Sciences have teamed up to try and tap the potential of all that unused processing power. Power Sleep is a new Android app that allows mobile phone users to donate the processing power of their devices to scientific research while they are asleep. The Power Sleep app provides users with a simple alarm clock function. When the alarm is set and the user’s phone is plugged in, fully charged and connected to a Wi-Fi network, the app begins to process data sent from the Similarity Matrix of Proteins (SIMAP) database. The research is focused on deciphering protein sequences in order to help with medical advancements in disciplines such as genetics and heredity, biochemistry, molecular biology and cancer research. “In order to fight diseases like cancer and Alzheimers, we need to know how proteins are arranged,” says Thomas Rattei, professor of bioinformatics at the University of Vienna. “This requires trials that need a tremendous amount of processing power. Power Sleep is a bridge between science and society. It promotes not only our research, but allows people in Austria to become part of the project and, at the same time, to do good in their sleep.” (via University of Vienna app uses your phone for research while you sleep)

wildcat2030:

University of Vienna app uses your phone for research while you sleep

Our mobile phones generally lie dormant while we’re asleep, which means that millions of powerful processors are going unused for hours at a time. Samsung Austria and the University of Vienna’s Faculty of Life Sciences have teamed up to try and tap the potential of all that unused processing power. Power Sleep is a new Android app that allows mobile phone users to donate the processing power of their devices to scientific research while they are asleep. The Power Sleep app provides users with a simple alarm clock function. When the alarm is set and the user’s phone is plugged in, fully charged and connected to a Wi-Fi network, the app begins to process data sent from the Similarity Matrix of Proteins (SIMAP) database. The research is focused on deciphering protein sequences in order to help with medical advancements in disciplines such as genetics and heredity, biochemistry, molecular biology and cancer research. “In order to fight diseases like cancer and Alzheimers, we need to know how proteins are arranged,” says Thomas Rattei, professor of bioinformatics at the University of Vienna. “This requires trials that need a tremendous amount of processing power. Power Sleep is a bridge between science and society. It promotes not only our research, but allows people in Austria to become part of the project and, at the same time, to do good in their sleep.” (via University of Vienna app uses your phone for research while you sleep)

(via we-are-star-stuff)