*Very, very heavy breathing*
*Very, very heavy breathing*
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.
This made me cry
Reblog this photo and add a caption!
Hey Aladdin do you have any more…. Oh I can see that your busy
5-MINUTE HEALTHY STRAWBERRY FROZEN YOGURT
4 cups frozen strawberries
3 Tablespoons agave nectar or honey
1/2 cup plain yogurt (non-fat or full fat)
1 Tablespoon fresh lemon juice
Add the frozen strawberries, agave nectar (or honey), yogurt and lemon juice to the bowl of a food processor. Process until creamy, about 5 minutes.
Serve the frozen yogurt immediately or transfer it to an airtight container and store it in the freezer for up to 1 month.
I prefer a more tart frozen yogurt, but you can add additional agave nectar or honey if you want a sweeter-tasting dessert.
Fresh strawberries can be used in place of frozen, however the fresh strawberries must be frozen solid.
Great summer treat!
yooo everybody. my mom and i were goofing around and found this seriously FUCKED UP site. all your information, (phone number, nam, address even) is available for 2.99. like everything. please watch this video on how to remove it. (im not sure if it’s there for minors, but if you’ve ever owned/rented a house you’re definitely there. it’s worth checking it out to make sure.)
video on how to remove information. : http://www.youtube.com/watch?v=JPFLagxnDsA
fucked up website: http://www.spokeo.com/
also, if you’ve lived in more than one place/state it has you multiple times, remove all of your profile things. (it had my mom 4 times, all over our state. even from when she lived in a house 9 years ago.)
SIGNAL BOOST THIS SHIT
YES THERE ARE MINORS ON HERE ALSO I JUST CHECKED ME AND IT HAS MY ~PERSONAL~ INFO ON THERE
This is very concerning. I just spent the last ten minutes removing my entire family (including my 14-year-old sister) from the site.
Cool Mom Tech has a guide on how to take your information off the site if for some reason you can’t watch the above video.
Just to inform everyone, it’s American only, but it’s real. I’ve found 3 of my friends already with this sight and the only reason I knew it was them was because I happen to have their address. PLEASE CONFIRM IF YOU ARE ON THIS SITE AND IF YOU ARE, REMOVE YOURSELF. NOW.
I’m screaming internally because I just searched up a handful of my friends who live in America.. and found every single one of them without fail. This is scary.
For my American followers
This is creepy as hell and completely legit. Please take the time to remove yourself from this list.
I just googled it and yeah. Now I can see a real meaning behind the saying ‘don’t give out personal info on the internet’..though in these times it’s difficult not to
THIS IS SCARY SHIT. This could be how my ex has been getting my information for a long time… ITS DANGEROUS. I JUST CHECKED IT OUT AND ITS REAL. IM ON THERE, MY FAMILY IS ON THERE. THIS IS NOT OKAY.
I GIVE ZERO SHITS IF YOU AREN’T FROM AMERICA YOU ARE FUCKING SIGNAL BOOSTING THIS THIS IS SO IMPORTANT THIS IS HOW STALKERS OPERATE OH MY GOD SIGNAL BOOST
THIS IS REALLY FUCKING DiSGUSTING AND GROSS, NOT TO MENTION DANGEROUS AS FUCK. No wonder people online keep getting my fucking phone number UGH GROSS GROSS GROSS.
My info wasn’t on there but my little sister’s and mom’s information was.
Doctor Who tea (Amy Pond tastes good)
Must get someday
This is fun. Try it in fullscreen. Extra points if you tilt your head. You’re only human.
My face was literally this:
instant reblog omg
My heart was racing throughout the whole thing, with immediate goosebumps when it ended. #love
THIS IS THE COOLEST THING IN THE WORLD OMG ASFJDKJS GKL ASJDLK
Badass trips on a not-so-badass budget.
Many travel blogs are written by people who’ve sold all their possessions and have taken a huge plunge into the world of long-term travel. This can sound expensive at first, but when you consider that you don’t have rent or a car payment in this…
It doesn’t matter if it’s for a cameo, a one-off episode, if she recovers her memories or not, if she becomes a full-time companion or not… IF YOU THINK IT’S A GOOD IDEA TO BRING DONNA BACK IN ANY CAPACITY REBLOG THIS.