synaptic-firearms

thiccbitch:

people need to understand that some people just don’t like talking it has nothing to do with u so don’t take it personally like some people just aren’t talkers and they’ll probably never text u first or initiate a conversation and it’s not because they don’t like u it’s just that they don’t think to say anything bc they’re comfortable with not saying anything

technicolordame

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

rinacath
moth-eatn:

So I’m getting married.  I know this is old news for some of you, but for those of you who haven’t heard, this is what happened:
About four weeks ago, some friends of mine who live down in Orange County invited me to meet up with them at Disneyland for the day, which I’m always glad to do.  So I went, expecting nothing out of the ordinary.  As soon as we got to the Park, one of them asked if we could go check out the Animation building in California Adventure.  I was happy to oblige.  That’s one of my favorite places.  Inside, there are these huge projector screens all along the walls in this big oval-shaped room.  The screens show concept art, storyboards, screenshots, and clips from various Disney movies, and as each movie is featured, the music from that film plays.  But as soon as we entered, I started to miss Stu (my boyfriend) like crazy.  He and I had come here together when he was helping me move to LA back in January.  We spent the whole day at Disneyland, and this is where we came when we got tired, to just sit and enjoy one another’s company and soak in the magical atmosphere.  But once that day was over, Stu had to go back home to Salt Lake City.  We had been continuing our relationship long-distance ever since.  
However, shortly after I entered the Animation building with my friends a few weeks ago, the giant screens on the walls filled with balloons and the music from Pixar’s Up started to play. That made me miss Stu even more… Suddenly, one of the cast members working there walked up to me and said, “Hey, do you like Up?  We have this for you,” and handed me this incredible replica of the Adventure Book from the movie.  It had a red ribbon pinned to it with the grape soda bottle-cap pin from the movie and written on the ribbon was my name.  Confused, I took the book, opened it, and started to read.  I realized almost immediately that it was from Stu and that he had in fact made this book himself.  It was filled with pictures and stories of all the “adventures” we have had throughout our relationship.  There was a section of things we have done as well as a section for “stuff we’re going to do.”  I was dumbfounded.  I was racking my brain trying to think of how on earth he had gotten this here.  I had talked to him just the night before and he had told me in detail about how he had to work late back in Salt Lake…
Near the end of the book, it read, “Of all the places I want to take you, there’s one that stands out…” followed by a picture of the Mormon Temple (where we had talked about getting married).  Then on the final page he had written, “So that leaves one question… So maybe you should turn around now.”  
My heart leapt and I spun around, hardly able to believe what was happening. And as I turned, the lights dimmed and the projected walls suddenly filled with the lanterns from Tangled.  ”I See the Light” began to play.  And there was Stu, right behind me, down on one knee with a ring box in his hands.  He asked me to marry him.  Needless to say, I said yes.  Applause broke out as Stu slipped the ring on my finger.  I had never felt so wonderfully surprised.  For the rest of the day, I felt like I was in a dream.  I just couldn’t believe he was actually there!
It turns out he had secretly flown into LA during the night and organized this whole scheme with my friends from Orange County.  It was absolutely the most incredible, perfectly-tailored-to-me proposal I ever could have asked for.  It was better than anything I could have imagined. 
I am so excited to marry this guy.  He is without a doubt the best man I have ever known and he is so perfect for me in ways I never thought I’d find.  Next weekend, he’ll be moving out here to LA so that we can finally be together permanently and I can continue to live my dream working for Disney.  The long-distance chapter of our relationship will finally be over, and we’ll never have to live apart again.

moth-eatn:

So I’m getting married.  I know this is old news for some of you, but for those of you who haven’t heard, this is what happened:

About four weeks ago, some friends of mine who live down in Orange County invited me to meet up with them at Disneyland for the day, which I’m always glad to do.  So I went, expecting nothing out of the ordinary.  As soon as we got to the Park, one of them asked if we could go check out the Animation building in California Adventure.  I was happy to oblige.  That’s one of my favorite places.  Inside, there are these huge projector screens all along the walls in this big oval-shaped room.  The screens show concept art, storyboards, screenshots, and clips from various Disney movies, and as each movie is featured, the music from that film plays.  But as soon as we entered, I started to miss Stu (my boyfriend) like crazy.  He and I had come here together when he was helping me move to LA back in January.  We spent the whole day at Disneyland, and this is where we came when we got tired, to just sit and enjoy one another’s company and soak in the magical atmosphere.  But once that day was over, Stu had to go back home to Salt Lake City.  We had been continuing our relationship long-distance ever since.  

However, shortly after I entered the Animation building with my friends a few weeks ago, the giant screens on the walls filled with balloons and the music from Pixar’s Up started to play. That made me miss Stu even more… Suddenly, one of the cast members working there walked up to me and said, “Hey, do you like Up?  We have this for you,” and handed me this incredible replica of the Adventure Book from the movie.  It had a red ribbon pinned to it with the grape soda bottle-cap pin from the movie and written on the ribbon was my name.  Confused, I took the book, opened it, and started to read.  I realized almost immediately that it was from Stu and that he had in fact made this book himself.  It was filled with pictures and stories of all the “adventures” we have had throughout our relationship.  There was a section of things we have done as well as a section for “stuff we’re going to do.”  I was dumbfounded.  I was racking my brain trying to think of how on earth he had gotten this here.  I had talked to him just the night before and he had told me in detail about how he had to work late back in Salt Lake…

Near the end of the book, it read, “Of all the places I want to take you, there’s one that stands out…” followed by a picture of the Mormon Temple (where we had talked about getting married).  Then on the final page he had written, “So that leaves one question… So maybe you should turn around now.”  

My heart leapt and I spun around, hardly able to believe what was happening. And as I turned, the lights dimmed and the projected walls suddenly filled with the lanterns from Tangled.  ”I See the Light” began to play.  And there was Stu, right behind me, down on one knee with a ring box in his hands.  He asked me to marry him.  Needless to say, I said yes.  Applause broke out as Stu slipped the ring on my finger.  I had never felt so wonderfully surprised.  For the rest of the day, I felt like I was in a dream.  I just couldn’t believe he was actually there!

It turns out he had secretly flown into LA during the night and organized this whole scheme with my friends from Orange County.  It was absolutely the most incredible, perfectly-tailored-to-me proposal I ever could have asked for.  It was better than anything I could have imagined. 

I am so excited to marry this guy.  He is without a doubt the best man I have ever known and he is so perfect for me in ways I never thought I’d find.  Next weekend, he’ll be moving out here to LA so that we can finally be together permanently and I can continue to live my dream working for Disney.  The long-distance chapter of our relationship will finally be over, and we’ll never have to live apart again.