The Tea Room

DC, Sherlock, art, food, fanfiction, photography and miscellaneous.
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Occassionally NSFW


Artblog: kaiseilinart.tumblr.com

My Parents are Dead and My Sister is Disabled ›

congalineofdurin:

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 /hour because the ones social services sent me who make /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 

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

(via koulin)

randomdraggon:

I don’t know Carlos you really sounded like your were doing something else when you got ‘distracted’ from the show…..with that tone of voice? Uh YEAH. 

I was not prepared for that scene at all….

Your Carlos is so cute! I must know which live show is this from?
(I want space pants so bad)

harrystylesdildo:

you never fully realize just how weird people are until you work a minimum wage costumer service job

(via adorabucky)

kill-the-cute:

yooo purple flower watchu doing?! U ruin the whole picture u baka.

(via peachlychee)

(via peachlychee)

original song by kyary pamyu pamyu - ponponpon (music box)

weeblesan:

I find this version of the song to be beautiful. at least I think it is ^^

(via weavile)

barachan:

here’s a preview of another one of my pieces for MOON CRISIS 2014! it will be for sale as well

this one is in marker and watercolor pencil on 9x12” watercolor paper. the stars and moons are made of pearly white glitter and glow in the dark!

also for those who don’t know, i will be at the show’s opening night (july 5) in person with a limited amount of prints for sale ♡

(via peachlychee)

coeur-de-porcelaine:

pansexualpagan:

kaylamariesmiley:

toenail-fister:

daigonite:

lucifers-lycan:

sizvideos:

Mila Kunis Against Men Saying “We Are Pregnant” - Video

What the fuck is this bullshit and why was it recommended for me?

It’s not like men are involved in the creation of the baby or anything.

I mean shit, I understand that pregnancy is an extremely strenuous thing on the woman, but that doesn’t mean that a dude can’t be proud of the fact that he’s going to be a father.

Hmm. Weird how someone would want to be considered a part of the pregnancy…
There goes all of my respect for Mila Kunis.

My goodness, women like this have some fucking nerve. Good luck Ashton.

Please stop.

Pregnancy is a very dangerous time for cis-women. Until cis-men are capable of nine months of pain without the ability to take painkillers, followed by hours of one of the most painful experiences a human can undergo, I agree with Mila Kunis. It is your child. Not your pregnancy. You don’t get a fucking medal for sticking your dick inside someone and impregnating them, you get a child. So no, you don’t need a fucking spotlight highlighting your months of work and pain and the fact that you can potentially die trying to bring life into the world when you have not undergone any of the physical effort.

Things you can expect during pregnancy: Anemia, urinary tract infections, constipation, mental health conditions including intense depression, hyperemesis gravidarm (basically when persistent vomiting is more than just morning sickness and requires hospitalization). Not to mention there are dozens of infections that can cause serious problems. (x) (x)

Oh and the fact that 20% of pregnancies end in miscarriages which obviously requires hospitalization for the pregnant woman and causes a lot of emotional trauma.

Or that you can’t consume alcohol, most types of fish, you can’t expose yourself to hot water (or any heat, really), or get an x-ray. You cannot eat lunch meats, raw sprouts (radishes, alfalfa, etc.), soft cheeses, anything unpasteurized is out, as are foods with raw or undercooked eggs. And caffeine can lead to miscarriages, so say goodbye to coffee, teas, and chocolate. (x) (x) (x)

About 2 million pregnancy losses occur annually in the U.S.; 6 million babies are born. 25% of pregnancies are lost.

14.5% of pregnant women will experience at least one pregnancy complication.

11% of women are diagnosed with post partum depression.

(x)

800 women die because of pregnancy-related problems in the U.S. annually. (x)

Labor can last for 36 hours or more. You’re in a room full of strangers, who are all seeing your vagina, your blood, your shit, your piss, and your agony. It’s common for tearing to occur during the delivery (x) and after the baby is born you still have to deliver the placenta (essentially an organ).

Pregnancy is terrifying, dangerous, and uncomfortable. None of you have the right to shit on Mila Kunis for telling the truth: You do not deserve the spotlight of your wife’s pregnancy. So get over yourselves. Yes, the father CAN be proud, and he should be. But it’s not his pregnancy. He is not the one who will endure it.

It is not weird that someone would want to be involved in their wife’s pregnancy. It is weird that you have the fucking nerve to lose respect for someone reminding you that the father is not the pregnant one in the picture.

So please, stop.

Today in male entitlement: now women ”have some nerve” if they remind men that they are not, in fact, the pregnant ones. 

(via ladymangoberry)

trendingly:

11 Shirts For When You Literally Cannot

(via assguard)