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tumblr: on cats

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

 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. 

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. 

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.) 

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.

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. 

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. 

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: 

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. 

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. 

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. 

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.

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: 

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.

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 

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Law and Order: SVU wouldn’t be able to handle me

The last TV show or movie you watched will now become your life story for the whole summer!

What ones did you get?

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It’s okay to say “no” to pineapple on pizza

I found this on the Australian subreddit today

3 Ways Pineapple on Pizza WILL change the living room.

More radical pineapple (and other fruit) 'education' programs in homes.

Radical programs like "Safe Pizza" already teach kids about various forms of pizza toppings, and encourage topping experimentation from an early age.

Once pineapple on pizza is legalised, programs like this will become widespread and even compulsory as has happened overseas. (No sources, but they don't call it "Hawaiian" for nothing.)

Kids will be taught that fruit on pizza is ok. Any fruit.

The Pizza Fairy is a book aimed at Australian kids aged four and up. It teaches children that no one can tell them what they can put on top of their pizzas.

Boys who like pineapple will be encouraged to identify with girls who also like pineapple. And even order pineapple on pizza together.

This agenda is already promoted by programs like the controversial, fruit-on-top "Safe Pizzas" program and will only become more widespread once the law is changed.

Loss of parents' rights (to choose toppings)

In other countries where pineapple on pizza has been legalised, parents have found themselves in court after trying to pull their kids out of radical fruit-on-food education classes.

In some states the fruit-on-top, so-called "Safe Pizzas" program is being kept secret so the public won't know where it is being taught.

Parents are already being cut out of the picture in Australia. Parental consent or even notification is not needed for radical fruit-on-top education programs like "Safe Pizzas", and South Australian schools are allowed to help a child pick and choose their own pizza toppings, even if the parents object.

IT'S OK TO VOTE NO

For more information on how changing the fruit-on-food law will have consequences for you and your kids, go to:

COALITIONFORPIZZA.COM.AU

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coco chanel was a nazi

i say this with no hyperbole whatsoever

she literally worked for the nazis and benefitted from jewish shareholders in chanel being sent off to concentration camps when their share came into her possession

parisian consumers actually refused to buy a lot from her own ranges after 1940 because she was an infamous collaborator but british and american consumers kept on buying them and continue to glorify her

that’s nice

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We Remember

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I want money so I obviously need a job, but I have a problem with procrastination.

Here’s to a life of $0.00 in the bank. Until I obviously somehow scrounge up $10,000 to go to university in Berlin and live there for four years to become an OB/GYN.

Somehow.

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It rolls off your tongue and into your heart.

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I literally have a pigeon in my room nesting in a bucket of fairy lights.

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kanye sleeping.

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At first we both liked (Devan actually loved) the name Taylee.. Then I did a little research and decided there are quite a few Taylee's out there and that it was too common of a name. So it was a no for the name Taylee.

My name just got BLASTED

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when the people at ancestry test the DNA in my spit sample

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You’re welcome

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Half-shitpost half-real?

In the western world….

People of colour aren’t oppressed.

Women arent oppressed.

Disabled people aren’t oppressed.

LGBT people aren’t oppressed.

Self diagnosing is wrong, and can hurt people.

The wage gap isn’t real.

Being extremely overweight won’t be seen as healthy, nor beautiful.

There’s only two genders.

Kids shouldn’t transition.

As a whole….

White people aren’t racist.

Men aren’t sexist.

Straight people aren’t homophobic.

Able bodied people aren’t ableist.

Skinny people aren’t fatphobic.

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Dear People Who Prefer Self Diagnosis:

See a fucking doctor. They spent at least eight years in college so they could help improve people’s health. Self Diagnosis is bullshit.

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People who self diagnose their ADHD are valid and deserve as much respect as those who are diagnosed professionally.