#mental disorders
basically brains make no sense and I am Angry. Theres this syndrom called Anosognosia where a patient who can be seemingly sane and intelligent is unaware of their physical disability, even with something undeniable like paralysis. A doctor may ask the paralysed patient if she is able to move her arm, to which she would say yes. If he then asked her to touch something with her paralysed arm, she may employ excuses like “my arm is feeling tired today” or even “I don’t appreciate taking orders”.
And this is not just a simple case of denial, the patient genuinely believes what she is saying. However, the weird bit comes in here: If the doctor injects a syringe of ice-cold water into her left ear canal, her eyes start to jerk around in a movement called nystagmus and when asked again about her arm, she will calmly admit it is paralysed.
IT GETS WEIRDER THOUGH. If you were to go to the same patient the next day and ask her about the appointment 24 hours ago, she will tell you that she told the doctor she was fine, thereby completely denying her earlier admission of paralysis. Almost as if she had reconstructed that memory entirely.
In a moment of extreme vulnerability, I once admitted to someone how I wished people did their own research about mental illness in order to better understand and help people with mental illnesses.
That person said to me something along the lines of, “Tough luck, that kind of information isn’t easily accessible to everyone.”
And well that’s just….not true. It’s called Google, my friends. If you have internet, that information is available to you in spades.
My small, gentle encouragement :
To those of us with mental disorders (myself included), it’s okay to say, “I have a mental illness and this is how it effects me.” Normalize it. Let others know. Help them understand. I know it’s hard. One day at a time. One moment at a time.
To those who notice concerning behavior, look into it. If you already know what the disorder is, look into it. No, I’m not saying you need to become a psychologist. But just doing a tiny bit of research goes a long way. “How can I help/understand/talk to/be a friend to someone with [insert mental disorder]?” It really means a lot.
To everyone, you are loved, seen, and known. You’re a masterpiece. There’s endless grace for where you are and where you’ve been, and thus no shame.
Take heart, beloved.
My Parents are Dead and My Sister is Disabled
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
GUHHHHHHHHHHHHHHHHHHHHHH people
me: i just finished this task with a lot of blood and sweat in my effort
brain: great! Now Suffer
My new psych is a big fan of “does it matter?” for the mental disorder one.
I spend a lot of time wondering why I do things or feel things - sometimes I forget that the point is to try to learn to live with the symptoms, rather than to “solve” them.
In the end, as long as you can accept your symptoms/difficulties and find ways to lessen their impact on living a happy, healthy life - that’s all that matters.
just.
first time in a year that I’ve had… I’m not sure, either the courage or the sheer stupidity to actually read a comment on one of my stories, and it’s a diatribe about how badly and negatively I portrayed Kirk (aka my literal favorite Trek character ever), asking if I hate him or Shatner because I wasted so many words on being rude to/about him, and not-so-subtly accusing me of fatphobia/fat shaming/ageism.
if all of my ao3 and tumblr materials ever disappear, just… don’t be surprised.
I once got into an online argument with people and they made an argument that a weird font in my account is abelist to those with mental disorders.
Like bro I gota mental disorder, the squiggles look cool!