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?!
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.
Duck, old boy, spring will soon be here. What are some seasonal transitions that you enjoy at the pond? Stay good and keep us updated from time to time.
What am I looking forward to? Shorts, long days at the beach with Kensi, eating outdoors, the sound of crickets and tree frogs, grilling out, daffodils, drinks on the patio and walks to get ice cream with Kensi.
Doing my routine stalking of your blog and I have to ask, what size do you recommend if I'm ordering a Shaggy Dog on the internets? I need length in the sleeves but don't need too much real estate in the body. I'm a 43l SC but I'm 6'6. Thanks in advance homie
I would guess that a Large is your best bet. I’ll get mine out tonight and take some measurements for you. I’ll post those tomorrow.
Duck, who makes these britches you're wearing in recent pictures? Need some wool togs, flannel and otherwise.
Most of my wool pants are from J. Press and old stock LL Bean. The LL Bean pants aren’t made the same in any way these days so I would advise against them. Brooks is pretty poor as well, so I would recommend Press and Sid Mashburn for winter pants.
The smokey pig gone? Yikes I was a big fan of their combo platter
I used to live about twenty minutes away from the Pig and went a lot. The owners closed it about two or three years ago, they were simply tired of running a restaurant. I can still picture all of the pig knickknacks throughout the store.
Duck, I need a versatile vest and am considering a fleece Patagonia or a waxed McAlister. Please advise pros/cons of the McAlister. I live in DC and my wardrobe consists mostly of khakis, cords, flannel slacks, sweaters and OCBD shirts. Along with Gucci loafers or penny loafers. Pretty trad. Your advice is appreciated being that you own a McAlister. One last question: does it smell due to the wax? My Barbour smells after being worn for the season. How do you address the smell on the McAlister?
I would get both, if you can. That being said, they are both great vests and versatile but you’ll find that the McAlister is a lot warmer and more versatile. It also feels a little more dressy… That’s not the right word but everyone has fleece. The wax on it doesn’t have the Barbour smell, but I have not had it rewaxed yet. Keep me posted on it.
I'm a big fan of the 2002-2006 Z71 Tahoes, I definitely prefer them to the 2007-present models. I can tell from your pics that yours is pre-2005. Can you tell me how it's held up? Any huge maintenance costs?
Ha, good eye (I think). I have an 04 Tahoe that has been nothing but incredible. I have over 200K on it and besides standard maintenance, wipers, tires, oil change, etc. the only work that I have done on it is a water pump and a fuel pump. Not much spent on it at all (knock on wood)