On May 28th, my sister, Edna, turned 31.
Ā 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.Ā
Edna and āCookie.ā I think she was trying to play it cool.Ā
My name is Jeanie. Iām Ednaās younger sister. Iām also her guardian and caregiver.Ā
Thatās me on the left.Ā (Hey, you never know. After a year of writing a blog about online dating -Ā Jeanie Does the InternetĀ - Iāve come to learn that there are A LOT of fools on the internet.)Ā
ANYWAY, IāmĀ not ādoing the internetā anymore. Iām 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 youāre wondering where our parents are, theyāre dead. Our mom died of breast cancer when she was just 33.Ā
Us with mom before she died. (Obviously.)
As for our dad, he peaced-out around the time my mom got sick. His loss - weāre awesome.Ā
Here we are being awesome at the beach. Pushing a wheelchair in the sand? Not so awesome.Ā
In case youāre wondering āWhatās wrong?ā with my sister - as a stranger once asked me on the street Ā - Ā NOTHING. Yes, Edna has a rare form of epilepsy - Lennox-Gastaut syndrome - but I donāt know if thatās anymore āwrongā than people who donāt have manners.Ā
Basically, Edna was born ānormal,ā 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 āretarded,ā because in 2010, President Obama signed Rosaās Law into effect, replacing that word with āintellectually impaired.āĀ
Which is cool and all, but services for the disabled and the people who care for them are SEVERELY LACKING. Also, thereās a bunch of people working in taxpayer-funded positions who are supposed to help families like us, but donāt. (Big surprise, I know.) They just fill out paperwork (whenever they feel like it) with asinine statements like this:Ā
YUP. I transport my sister down the stairs in her wheelchair, because that is not only safe, but TOTALLY PRACTICAL. Why doesnāt everyone in a wheelchair just take the stairs, for Godās sake? Stop being so lazy, PEOPLE WITHOUT WORKING LEGS!Ā
But, as it says above, Ednaās legs do work. Whether or not she wants them to, is another story.Ā
Edna refusing to go inside.Ā
These are theĀ 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.Ā
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 theyāve told me āthese things take timeā and that I āneed to amend my expectations.ā (That was said to me when I refused to place Edna at AN ALL-MALE CARE FACILITY. Because yes, that was an āoptionā that was offered to me.)Ā
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. Ednaās reppinā the Wildcats below.Ā
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 didnāt want me to worry.Ā
By the way, we were raised by our grandma. Edna and her were very close.
Sheās dead, too. Surprise.
She died when I was 20 and Edna was 21. Thatās when I became Ednaās legal guardian and Gaby stepped into the picture to help me out with Edna.Ā
So, six months ago, after Gaby died, I movedĀ Edna to California, where I tried to get the folks over at The Frank D. Lanterman Regional Center to help me.Ā Iāve told them Iām worried about our safety - that one of us could get hurt on theĀ stairs - Ā Iāve told them I canāt afford to pay the private babysitters $15/hour because the ones social services sent me who make $9/hour were unreliable (they didnāt 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 āthat what I thought I was supposed to do.ā)Ā
But the people over at the FLRC donāt return my calls, they donāt 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, āThatās just [insert name of said jackass].āĀ
He was one of the two caseworkers that contributed to the report I mentioned above, which also included this:Ā
So let me get this straight - I have to feed, bathe, dress and help Edna in the bathroom and you canāt 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. Iām also sad. Sad for those who donāt have family to stick up from them and who waste away God knows where, monitored by no one. OrĀ monitored by people who physically and sexually assault them.Ā
Iām also sadĀ 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.Ā 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 youāre doing it all for.
Edna wanted to sit next to me the other day while I was writing. Clearly, sheās not impressed.Ā
Hereās the thing: I REFUSE TO GIVE UP. IāM NOT GIVING UP ON HER OR MYSELF. Iām going to pursue my dreams while taking care of her, AND while ensuring that the people paid to do their jobs ACTUALLY do them.
Thatās where you come in. I need you to help me get my story out there. Because I know Iām not alone in this. I want to connect with familiesĀ who are in similar situations and also show people who have no idea what itās 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.Ā
Iām 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.Ā
Facebook:Ā Ā facebook.com/eisforedna
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