My home for the next two nights
Camping with WiFi. Doing it right.
My home for the next two nights
Camping with WiFi. Doing it right.
There’s too much “I need him, he completes me” and not enough “I complete me yet I want them along for this journey”
For the love of Star Wars, and of his daughter, who loves playing Minecraft and is battling cancer.
If you ever need 241,412 sets of shoulders to lean on, we’re all here for you no matter what happens.
Identity is a strange thing, far more amorphous and metamorphic than we would care to believe. There is an imminent threat of irrevocable change, out of my hands, apart from my control, feeling years of work slipping from my fingers at the cost of legal jargon but the further it slips from my grasp the more liberated I feel. I’m reassured of the ridged awaiting landscape, the drive of cicadas and the hum of prairie locusts a meditating calm against the brewing storm. I feel empowered and powerless all the same. My language is tied. It’s been a good run if, in the end, that’s all this ends up being.
"Gather ‘round children, and I’ll tell you of the mountains that once stood here. The locals called them Mount Sentinel and Mount Dean Stone. They stood watch over the valley for thousands of years, until one day, they just up and left."
From top to bottom:
Mount Sentinel on June 8th
Mount Sentinel on July 18th
Mount Dean Stone on May 23rd
Mount Dean Stone on July 18th
One of the very few cool things about #Missoula fire season: the red sun! The creepiest part doesn’t show up in this photo (please forgive my phone pictures, it’s the only camera I have atm). While you’re successfully staring directly at the sun, you can see wisps of smoke / thin clouds drift in front of it, like the full moon in horror movies. Only it’s the sun and it’s BRIGHT FRICKIN’ RED!
Rape has become endemic in South Africa, so a medical technician named Sonette Ehlers developed a product that immediately gathered national attention there. Ehlers had never forgotten a rape victim telling her forlornly, “If only I had teeth down there.”
Some time afterward, a man came into the hospital where Ehlers works in excruciating pain because his penis was stuck in his pants zipper.
Ehlers merged those images and came up with a product she called Rapex. It resembles a tube, with barbs inside. The woman inserts it like a tampon, with an applicator, and any man who tries to rape the woman impales himself on the barbs and must go to an emergency room to have the Rapex removed.
When critics complained that it was a medieval punishment, Ehlers replied tersely, “A medieval device for a medieval deed.”
- Half the Sky, Nicholas Kristof
REBLOGGING THIS. x1,000,000,000,000,000,000,000
A medieval device for a medieval deed - yes.
This is perfect
BLESS THIS PERSON
I BOW TO THIS INTENTION
Can we talk about how beautifully this turns rape culture on its head? Instead of “If they weren’t dressed like that they wouldn’t have been raped” THIS IS LITERALLY “IF THEY HADN’T TRIED TO RAPE SOMEONE THEY WOULDN’T HAVE SPIKES IN THEIR DICK”*
That bold bit~
It absolutely hate that this kind of thing is necessary anywhere, but if we finally treat rapists like the savage monsters that they are, maybe it won’t happen so much.
More than HALF of young scientists surveyed say that they had experienced sexual harassment in the field, and almost a QUARTER had experienced sexual assault. Most were women, most were still students or post docs, and most were approached by superiors, not peers.
People wonder why so many of the women who enter scientific academic tracks never finish. This certainly doesn’t help.
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
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.
your love for your sister is such a beautiful thing, your story will be heard, dear. we will make sure of it.