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.
"All these characters are gay? No. It’s unrealistic to have so many."
Didn’t you know? Gays are pack animals. Like angry wolves, they rove the countryside in large groups. During the full moon the alphagay has a contagious bite that will make you realize that of course gay people fuckin hang out together???
I think ours is Subluxate. We all congregate at their comm and all.
SUBLUXATE I HAVE PEOPLE FOR YOU TO BITE.
Okay, gimme a list in nine days! And also a plane ticket or two…
buy these MANLY CANDLES for all your NO HOMO needs
What the hell is camouflage supposed to smell like?
So. Last week I was diagnosed with Elhers Danlos Syndrome, a life long genetic disease I had no idea I had, on top of having had Fibromyalgia since 2010. You can read more about both illnesses at the wiki EDS page and Fibro page. Both illnesses cause pain, exhaustion and limit mobility. I’ve m…
So this is a thing,
This is a thing I need help with. Between getting married in 3 weeks, moving next month (and needing to hire movers to do it all) to a house I can manage in better and racking up some medical bills for treatments not covered by my medical card - we need some help covering the cost of a new wheelchair.
So here’s the thing
PS - there’s reward levels - I’ll make purdy arts for anyone who donates over 10 euros.
- any group of flawed but lovable misfits who make a family with each other
Good god I am so fucking sorry that recipe post ALL showed on the front page. The vast majority of posts with instructions on how to make a “Read More” jump are either outdated or improperly coded (at least, that’s true of what I found), and it took for-freaking-ever to get it working properly so you wouldn’t see the clarifications and elaborations that are the recipe notes on your dash.
Prep time: Eight hours or more, including the soak time for the beans
Cook time: At least an hour and a half; the longer it simmers, though, the better it tastes, and you don’t have to babysit it.
- Large bowl for soaking beans
- Mortar and pestle or spice grinder (a coffee grinder that has zero coffee grounds will work)
- Big frying pan (mine is 12.5” and about an inch and a half deep)
- Scraper-style spatula
- Wooden or large plastic spoon
- Big pot (mine holds up to two gallons)
- Can opener (if you’re like me and don’t have home-canned stewed tomatoes and tomato paste on hand)
- Food processor or blender
- Pressure canner, quart and/or pint jars, bands, and new lids (if you’re canning it)
- 2 lbs ground turkey
- 1 onion, chopped
- 4-5 cloves garlic, chopped
- 4-5 cups dried beans, soaked for 8-12 hours (I used a combination of black and kidney)*
- 28 oz can unseasoned stewed tomatoes (1qt home-canned stewed tomatoes)
- 3-4 cups chicken stock*
- 2 Tbs olive oil
- 6 oz can tomato paste
- 7 oz can chipotle peppers in adobo
- 3 cinnamon sticks
- About 1 Tbs gourmet pepper blend*
- About 1.5 tsp ground black pepper
- About 1 Tbs kosher salt
- About 1 Tbs paprika (I think mine was sweet, but any would work)
- About 2-3 Tbs chili powder
- About 2 tsp ground allspice
- About 2 tsp cumin seeds
- About 1 Tbs epazote*
- 2-4 oz very dark chocolate*
- About 3 Tbs cocoa powder*
- OPTIONAL: one bottle good stout or porter; adjust chicken stock down if using
Crush cumin, pepper blend, black pepper, salt, paprika, chili powder, epazote, and allspice together in a mortar and pestle or with a spice grinder. A coffee grinder not used for coffee (or, at least, that has been thoroughly cleaned of grounds and will be cleaned before being used to grind coffee) works well.
Heat olive oil in large frying pan. When sizzling, add turkey and brown, stirring regularly. When browned, add chopped onion. Stir frequently until onion turns transparent; then add garlic, tomato paste, ground seasonings, cinnamon sticks, cocoa powder, and about 1/2 cup chicken stock. Stir well, add the chocolate pieces on top, and cover; turn to low and let simmer gently for about ten minutes. Stir in the now-melted chocolate, then cover again and let simmer gently for another twenty minutes.
Meanwhile, drain beans. Add to large pot, fill with water, and bring to a boil. Boil until beans are tender, about 30 - 50 minutes. They must boil for a minimum of ten minutes (see Notes). Drain; return beans to pot.
Taste turkey mix when half hour is up and adjust seasonings if needed. Remember that the chipotles will be added later, so don’t make it too spicy yet. If adjusting seasonings, let simmer another fifteen minutes, taste again, and repeat as needed.
Once the seasonings are right, add the turkey mix to the beans. Pour in remaining chicken stock (and beer, if you’re using it).
Process chipotles and adobo in food processor until smooth. Add to pot. Do the same with the stewed tomatoes and their juice. Mix thoroughly. At this point, it will seem rather liquid; don’t worry, water will boil off and leave deliciousness behind.
Turn heat to low and let cook as long as possible. After about an hour, taste-test and adjust seasonings as desired.
If you want to can it (this recipe made 3qts and 1pt canned for me): wash jars, bands, and lids in hot, soapy water. As always, the lids should be new, while the bands can be recycled (as long as they’re rust-free), as can the jars (once they’ve been inspected for cracks). Leave lids in very hot water. Fill jars to within about 1 inch of top. Wipe rims, put on lids, and tighten bands as much as you can using only your fingers. (Otherwise, you might break the jar when trying to get the band off.) Process chili at 10 pounds pressure for 1hr 20min. (Beans need to be processed a good long time, no matter the recipe.) Let jars cool upright for a full day before labeling and storing in a cool, dry place.
TRIGGER WARNING …
So, by now you have all heard of 22 year old Elliot Rodger who went on a killing spree in Isla Vista, a community in Santa Barbara, California. One Friday night, Elliot shot and killed 7 people, including himself, close to the University of California Santa Barbara campus.
Prior to his violent shooting rampage, Elliot recorded a video titled, Day of Retribution in which he states, “college is the time when everyone experiences those things such as sex and fun and pleasure. In those years I’ve had to rot in in loneliness, it’s not fair.” and “you girls have never been attracted to me, I don’t know why you girls aren’t attracted to me, but I will punish you all for it”.
About a month ago, after seeing some of Elliot’s YouTube videos, his family contacted authorities. Law Enforcement interviewed Elliot and said they found him to be a ‘perfectly polite, kind and wonderful human’ and took no further action.
Now we have media outlets labeling Elliot as a “mad man”, “spoiled brat”, “misunderstood”, “good human” etc and continuing to file this mass murder under mental health.
Understand that no one is saying that he did not suffer from mental illness, I’m sure he does. But we CANNOT ignore the fact that this mass killing was rooted in his hate of women (misogyny) and inability to properly deal with rejection. There is much to unpack about this incident, how it was handled and how it will be portrayed in the media, but for now I’ll post some tweets from those of us responding to the shooting on twitter.
For more info about the shooting: http://bit.ly/1mjerdo
Elliot Rodgers, Day of Retribution video: http://youtu.be/FWWGtee14pA
Elliot was also racist: http://bit.ly/1h0BniC
Three more bodies found at Elliot’s apartment: http://bit.ly/RnzYWP
Elliot Rodgers 140 page manifesto, My Twisted World: http://bit.ly/1nGaWwX