(spinoff)Dairy of an Insomniac

congalineofdurin:

cockismybusiness:

team—wolverine:

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

SIGNAL BOOST

STOP SCROLLING. THIS PERSON ISN’T ASKING FOR MONEY AND THIS POST WON’T MAKE YOU SAD.

This is a really uplifting and inspirational story of a family sticking by each other and making things work despite a whole lot of shit

They just want to find other people in the same position they are, for a sense of community and to feel like they aren’t alone.

I know out of all of you, some of you have followers who are living with and taking care of intellectually or emotionally disabled family members, and this lovely and unbreakable pair of sisters need to find them.

SIGNAL BOOOOOOOOOST

so true…lol

so true…lol

I want one…(or two) lol.

I want one…(or two) lol.

Time…

Over and over again. I remember meeting (him) when I was about 18. During these past four years I’ve known “him” long enough to have had the most beautiful, magnificent, adventurous, daring, confrontational, denial, disastrous and ugly relationship. I met him because we had something in (common), which was dealing and coping with relationships that went sour. At first when I looked at him, he was some sad son of gun with no hope, no future, no job, no car and was filled with hatred, loneliness and darkness. The girl he loved since he was 14 not only cheated on him but broke up with him twice, and before that time he met me, she dumped him again. He was a quiet person, he barely spoke, he was rather a good listener. Looking at it now, I wonder why he liked listening to me anyways, or why he even bothered to call me everyday. It wasn’t love at first sight. I gradually learned to like him and I chose to love him. (cutting through details) Tbh, It’s quite funny, once he got all that he wanted, everything changed, everything wasn’t the same like it use to be. (funny, that same girl he hated, who cheated and broke his heart several times…he’s moved her in with him 6 months ago and has made it official and married her.) At first, I was torn into a million pieces, I had so many questions and so many answers that were not answered. Tbh, I would have been okay with the idea, if he got married to some other girl. But no, he chose the one that took his heart ripped into a million pieces and threw it back at him and decided to take it back when she wanted it. (Well, he did join the military because he said he wanted to get away from here, to clear his mind and such.) Seriously, I think she has ran out of men to run to, and the only guy who’s willing to take her back is (him). (Military benefits) Could you blame her? (He said he was sorry for hurting me) but then he blamed me for my own sorrow, my own pain and my own heartache. I always forgave him for hurting me. Even when he hurt the most at times, I forgave him, (because isn’t that what love is? you forgive and let things go?) I forgave him again, but this time (because of peace of mind) and I apologized, this time (for even letting him experience how real love can be.) There is a saying that states; a persons’ partner resembles the type of love they felt they deserved. I guess the love he felt he deserved was something old, familiar, bland, and something that rolled on; desires, lies, bitterness and hurt.

Life goes on, it has it’s obstacles and it has it’s rewards.
“Being single doesn’t mean you’re weak; it means you’re strong enough to wait for what you really deserve.”

Me as a chubby baby, lol. Happy Father’s day to my Dad! lol.

Me as a chubby baby, lol. Happy Father’s day to my Dad! lol.