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
This made me cry
SIGNAL BOOST
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
Aaah yes, the lovely and demure Damara Megido.
Damara is a really crude character. If you are uncomfortable with cursing and dirty talk… don’t read this.
(“I do not regret anything.”)
Quirk!
- Damara speaks in Japanese (duh). Google Translate is your friend. GT isn’t perfect but you aren’t trying to write a beautiful haiku, you’re only trying to make yourself understood.
She speaks in halting sentences, like Caliborn. She breaks her sentences by plopping periods in the middle of phrases, like “It’s over there in the chest.” could be “It’s over there. In the chest.”
When she is done with a sentence, she moves right on to the next one without transitioning. Normally we string our sentences together — “I procrastinated really badly and didn’t do my math homework. Because of that, I ended up getting a bad score on the test.” Damara would say “I procrastinated and didn’t do the homework. I got a bad score on the test.” The sentences don’t quite flow.
She also has some trouble with grammar. At one point she says “What the fuck are you talking about?” but it turns into “What the fuck you’re talking about?” You can mess up your pronouns and verbs every now and then.
Damara uses her language barrier to her advantage. In her mind, the fact that no one can understand her isn’t her fault. It’s because they’re all stupid. When she comes onto the others, she’s not only satisfying her perverted desires, she’s also making fun of them for not being smart enough to decipher her words. She’s sticking her tongue out at them (and then wiggling it). She has created a prestigious Japanese-speaking club and nailed up a wooden sign that reads “No idiots allowed.” When Meenah tries to “be Damara,” she says
“Do you want to be me?”
“You cannot be me. If you cannot understand me.”
“Further. You can not be me. If you can not fuck me.”
Be sassy and horny as all get out to non-Japanese speakers. If someone plays along and says things like “I’m sorry, I didn’t quite catch that” or “You want me to do what?”, you turn up the heat on the sex talk. They deserve it for not knowing what you’re saying. If someone gets frustrated and says “Your accent is so hard to understand,” Damara has won the game. Her self-satisfied insults include “Freak,” “Bitch idiot,” and flipping people off.
Damara is insanely obsessed with sex. She tells Meenah she masturbates to the memory of their rivalry, she agrees to help Rufioh in exchange for sexual favors… Her fetishes are pretty crazy, and vary according to the person she’s talking to. She tells Horuss to take her “horsey style,” and
“Feed me apple. Then, pull my hair. You will ride me like a champ.”
So personalize your sex talk to whoever you’re speaking to. If you meet a Kankri, for example, you could use how mouthy he is as a jumping off point. If you meet a Terezi, you could note how skilled her tongue is. I’m not going to talk about this too much because it’th embarrathing, but have fun.
“Rub your sweaty face on my bare bottom.”
“Will you continue boring me with your words. Or. Will you take my clothes off?”
Really, about 80% of her conversations are about getting laid and stoned. If you’re asking yourself “I wonder if I’m coming on too strong,” “I wonder if I’ve pulled out too many joints,” great — go even further. Although she talks dirty, she mostly keeps her hands to herself.
Note that when Damara talks to Rufioh, she doesn’t say any of this kinky stuff. He does actually know what she’s saying, so she can’t make fun of him in this way. If you meet another character who can speak Japanese (maybe a Rose or Dirk rper will grant their characters the ability to speak it), she would be much cleaner towards them, too.
Apparently, Damara used to be really nice. Then, Rufioh cheated on her with Horuss, and she turned violent. She ended up killing Horuss and, later, Meenah. She’s still angry at Rufioh, but although she’s angry, she likes talking to him, and she does want him back. When Rufioh tells her he might want to break up with Horuss, she says
(“Rufioh. I told you this thing. Every day. Forever.”)
Damara has no interest in romantic relationships other than Rufioh, so idk if you’ll be able to ship her with anyone, unless you’re doing straight up sexy times.
Damara likes being a crazy bitch. She is proud of her murders and is ready to murder again. When Meenah mistakes her words for a compliment, she says “hey maybe I had you all wrong,” and Damara grins and says “No. You did not.” She never apologizes for her behavior. If someone gets angry at your actions or tries to shame you into changing your ways, Damara would laugh in their faces.
“Fair enough.”
At this point, she’s just waiting for Lord English to hop in and incinerate everybody. She has some sort of relationship with the Lord of Time, perhaps through time-traveling and bubble-hopping Gamzee. She says at one point that she can “summon the devil,” and tells Meenah that her crusade is pointless because “the lord of time consumes reality itself.”
“The end of our time is near.”
It would be interesting if you met a Kurloz or Meulin, because then you could “talk some pious noise.”
One last note! If you’re rping Damara and you decide that you want to check out some of her pesterlogs to refresh your memory, this website is really helpful. Her logs are about halfway down the Page 7298 transcript. These transcripts let you copy-paste and translate her lines, whereas the flashes do not. (Thank you buggerygrips for telling me about this!)
Good luck with your rping! <3
