Tag Archives: Angry Autistic Speaking Out

A Frank Talk

TW/CW: Discussion of dying, death, and chronic illness, also ableism by medical staff at a hospital. And yes, i do discuss my faith, and belief system (mention of Christianity and Jesus, but i promise it is non-preaching.)
Last June, my world came crashing down. I was hospitalized on June 16th when my then caregiver, K, came and i was almost passed out in my chair, weak, and unable to move much. My lymphedema leg lump that is on my left inner thigh, had become red hot infected. And when i got to the ER, after they did labs on me, they said i had a severe infection in the leg lump—and—end stage stage 5 kidney disease. I was hospitalized for a total of three weeks.
Two days later, i had surgery to implant a chest catheter at the right side of the base of my neck, which goes into my heart, in order to start immediate kidney dialysis.
I’ve been on dialysis ever since, starting in the hospital, and then in center when i got discharged from the hospital July 5th.
At first, i was so devastated—and i actually went through what people go through when a loved one dies, several stages of grief—denial, anger, sadness, depression, etc. I cried alot, and often out of the blue, i would burst into tears. This was so new and terrifying to me. I even called one of my siblings and left them a long message to let them know, i don’t hate them, and why i felt led to tell my story online in 2010—that my intention was not to put them on blast to hurt them, but to make them aware of how the way i was treated had a great profound, sadly, negative affect my life, and to educate others going through the same with their families, and to show others they are not alone.
But right away, i was met with a team of two nephrologists, who talked to me in depth about what i was to expect. Since my labs were stable, i was allowed to still eat mostly normally, just go light on foods with phospherous, potassium, and sodium. They told me they would have my back, and that the kidney center i would be going to for my dialysis would have my back.
I loved going to dialysis right off the bat. Most of the staff have been so supportive of me, and i have even made many friends and allies among them. I even created a cool new imaginary friend out of my dialysis machine, to help me to cope with having to go there for 4 hours three days a week, who is also a real ally, even though she is not real.
Okay, let’s get to the point of this story. Kidney disease IS a killer. It is eventually fatal. The dialysis machine, our second kidney, acts as our kidney, when our kidneys can no longer do their work to cleanse the toxins from our bodies. But with kidney disease, comes the risk of heart attack, cardiac arrest, stroke, infection of the access site, whether chest catheter, fistula, or AV graft, and damage to other internal organs.
Twice now, during dialysis, i have experienced an episode where i get a weird feeling all over, a huge gas bubble forms in my upper abdominal cavity underneath my breasts, my urine turns dark brown, and i cannot eat or drink a thing until the gas bubble and nausea slowly passes. This happened a month ago when they took off way too much fluid for my body to handle, then it happened again yesterday.
Lat night i felt i needed to go to the ER. There, i was treated to first one doctor and nurse, who without asking me first, pulled up my shirt to feel my abdominal area. That is a real invasion of my own body, to get touched without first asking. Doctors and nurses do this all the time, and it is downright disrespectful. Then the first nurse, also without asking me, lifted my legs from the wheelchair foot rests, was rough about it, and i told her to stop and ask me first, and to be gentle with me.
I stayed there for over four hours, only so they could get a urine sample, which by the way, never got tested, then blood was drawn, six vials in all. They also did a complete ultrasound of my entire abdominal area. But the way i felt like i was being unheard by the nurses and the first doctor, i refused to let them admit me. If i need to go back to a hospital, it won’t be this one in Santa Maria, it will be one in San Luis Obispo that has an excellent patient centered reputation. I just didn’t feel like i would be accomodated this time at our hospital…so i had Sam, my caregiver and friend, bring me back home.
I am able to sip small amounts of water now as of this morning. And update: I ate an entire Solo cup of Rice Krispies with 2% lowfat milk, and a sliced apple. my urine looks clear and light-colored again.
The prospect that i could die soon, is once again hitting me hard—and it scares me shitless. While i have never turned my back on my faith and Christianity (Jesus), since i have been woken about so many things, i no longer feel it is respectful or appropriate to those with different beliefs and faiths, and those who aren’t into faith, to proselytize. I never was a Bible thumper, but i did used to post alot of Christian themed memes when i first came onto Facebook, mainly out of guilt that if i didn’t post them i wasn’t a true believer—that i was denying my faith is Jesus. I still profess Jesus as my savior who died for me so i could have eternal life, but i also respect all of you who believe differently, are Jewish, Muslim, Hindu, or no faith in any God at all. I was hurt greatly in so many churches i went to, and i never want to be that kind of person who hurts others. I bring this up, because of the fact that i know i am dying, and there is a huge part of me that fears i may go to hell when i die—because i still cuss like a sailor, i still get pissed off, royally pissed. But ya know what? I now know anger is a valid emotion, and some people do not deserve our forgiveness. I know hell on top of all of the earthly hell i have already been through, would be the unwanted icing on the cake for me.
Sigh—-i don’t know where i am going with this talk. I just know i am real, and i just want to know that i made some kind of a difference in other people’s lives before i do leave this earth. And i want to live on after i die, in a happy place–whether it be Heaven, or in a new earthly life. Knowing that, would help to alleviate much of my fear of dying.
And i would rather die where i feel safe dying. Not with harsh nurses that don’t give two fucks about me, but with the people who i love, who love me. Like my now caregivers, Sam and Iris.
To all of you, my friends here on Facebook, to the ones who are not on my friends list now, but who i still remember with love and gratitude, to the few local friends i have, i thank you all for the love and support you’ve all given to me, for having my back, and for helping to wake me the fuck up about so many things i used to believe in, but don’t anymore because i now see so many truths that i didn’t see before. I have been awakened to the knowledge that i am both bi-sexual and non-binary/queer. I thank you all for enriching my life so much, for the true treasures you all have been and still are to me today.
I love you all, friends. Each and every one of you. To the moon and stars and back, i love you all so very very much. Your light will shine on me forever and ever and ever.
I wish i had enough time left to help bring this nation we live in to a place of true love, peace and well-being for all of its people, including our most vulnerable, elderly and disabled people, People of Color, LGBTQIA, Neuroqueer, Autistic/Disabled, Muslim, Jewish, Black, Latinx, Mexican, Puerto Rican, Asian, everyone. A place where healthcare is a fundamental human right. Where disabled people start being truly accepted, included and accomodated and part of the national conversation. Where gay and transgenders can feel safe walking down the street. Where an elderly grandmother can know she can get her meds, pay her rent, monthly bills, or stay in her home that she still owns, where Muslims and Jewish people can worship without fear of a mass shooter gunning them down. Where there is no more gun culture, period. Where no more Black youth get shot and killed. Where hate is stamped down. I would work for a nation that is no longer thought of as a cruel nation.
In the meantime, i am not dead yet. As long as i still breathe, i will spend my very last spoon defending my friends and my community. I will hold space for all of you. I will do what i can to spread the causes of love, truth, and justice.
Love and peace and light,
Melissa Fields, Still Here
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A 2010 About Me, Re~Do

In researching some of my relatives, i came across an old Facebook post i had written, as an appeal for help, in early 2010. Rather than just delete it, i’m going to repost it here and on my WordPress, only without the awful ableistic language i used back then, well, because, i did not know what i know now about my autism, and i was searching for support and community. I was scared, still new to Facebook, and still not yet woken about so many things, so i used functioning labels, because i just didn’t know any better.

Below is my old appeal, because it is still too well-written to just delete and forget about, only no ableistic language this time!

[CW for some ableist slurs.]
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Not The Cr**y Lady Of Mean Bully Monster Street!!!!
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Hi–my name is Melissa. I only began to reach out on Facebook to tell my story of horror that happened to me around the holidays. (And now as i re-write this, it is 2019, and i forgot what that horrible was, and will have to find time to go back in my blogs and revisit my old post.) Basically, i am an autistic adult, 49 yrs. old, going on 50, who has never been able to work or fulfill any of her lifelong dreams and goals. (I am now almost 59 years old.)
Also a new re-write to this, I live in a neighborhood that is mixed residential and light industrial. I have had to live here since May of 1991, and it has been sheer hell for me. I have never been able to work bc of my disabilities, so i have been living trapped in an unhealthy environment full of bullies who make it their mission to torment me almost on a daily basis, by making the very noises they know trigger me. The noises include: Loud banshee style man yells, cussing at me, calling me names, (even the r word), loud sustained horn honking, louder than F engine revving, and turning their bass filled music up so loud my entire house vibrates and shakes. Stuff i cannot just unhear.
And, they do this right in front of my house.
Some of my history….

From Spring of 1976 up to April of 1992, my only problems were that i was firstly in high school, wanting a way to be able to pursue my dreams of becoming an actress and an FM rock radio deejay, then, after high school, a way for me to get off of the gov’t aid i was on, so i could be able to learn how to drive, get my own car, go to work and have a self-sufficient and productive life–and then, hopefully,–i’d be able to fulfill my dreams and goals.

My big problems with ppl taunting me and being cruel to me, were a thing of my past, or so i thought. That all occured during my early childhood and my school years, between years K thru 4th grade–it stopped in 4th grade, when i happened to go to a school that had nice kids who liked me….and then resumed again, in earnest, when my family and i moved to the country, and my 5th grade resumed being a nightmare again, with the kids being viciously cruel to me again. My 5th thru 8th grade years remained very painful..and my first two years of high school–were more of the same. I had family problems too, with mean brothers and mean sisters, all being mean and insensitive to my being different, too. I gained relief after high school, when these mean brothers and sisters moved out on their own, got married and began having families of their own. In the spring and summer of ’76, before my junior year of high school, i learned to cope by developing a silly goofy personality that my brothers and sisters all seemed to like. In other words, i learned how to mask my “differentness”.

I never knew i was autistic. My mom always called my disability a “perceptual handicap”. 3 months into first grade, i was put into EH classes for the emotionally handicapped, and i stayed in those classes until 4th grade, when i went to a nice school where the kids and teachers were both nice to me.

In 1981, i began to seek out pen pals who liked the same music i did–which was album-oriented rock, progressive rock, hard rock, heavy metal and new wave music. I LOOOVED the music of the late ’70’s and all of the ’80’s!!! I had sooooo much HOPE for my life in these days!!!!!!!!

Finally, in late 1987, my parents were financially able to afford to rent a small granny unit behind a bigger house for me so that i could be back in town again. This worked out great for me for the next 3 1/2 years, because i lived in a nice quiet residential neighborhood, where my neighbors were all nice–including the two old ladies who lived in the front house, Winnie and Joyce. They, as well as their family, and their church, all took me under their wings-and i blossomed even further, as a result!!
I was finally able to learn how to drive and i got my driver’s license and my grandmother’s car, in 1990. After this, i moved Heaven and Earth to try to get myself up and out of my rut. In 1991, however, my father, who had already had a stroke in 1989, had to also have major heart surgery–and i was forced to move here to–Mean Bully Monster Street. Because, my sister Mona owned a duplex here. So–i moved to one of the little cottages, next door to a girl who was 21 years old.

I continued to do great living here in the little cottage next door to me—for the next 10 months. I got along great with Molly–(not her real name)— and her friends–until Molly had one of those friends move in with her in April of 1992. Immediately after that, i began to be treated to shrill loud bubblegum pop music, with a huge megabass loudspeaker, aimed right at my house—and the battle was on. This was happening like clockwork, every single afternoon when Molly’s friend would come home from work. She would come inside their little studio apartment–and immediately, up would go the pop music–drowning out my rock music and my TV, to where i could not enjoy them. And–they were nasty about it. They would say that they were going to turn it down, telling me and my mom that it wouldn’t be a problem anymore–but they would turn right around and turn it right back up just as loudly, after two or three days again. In addition, they stopped being friendly to me right after Molly moved her friend in with her–something that i have always hated—-to have ppl hating me!!
I regressed BIGTIME–yes, it was me being back to having full-on screaming meltdowns just like the ones i had when i was a child and teenager again–because i was back to being taunted again, just like when i grew up with the mean schoolkids, and mean siblings. At the time, i felt like an utter failure as a person because i was having meltdowns again. I felt HUMILIATED—-because at that point in time, i felt like i was all wrong and defective, and i had spent so much energy working hard to get PAST all my painful growing-up years!!!!! I did not realize till much later on in life that this was internalized ableism, the thinking of myself as wrong and defective. But this was, sadly, what my family and society wanted me to be so i could fit in. And still, today, in 2019, many neurotypicals and non-disableds feel like being autistic and disabled is all wrong, all bad. And that we need to be fixed, cured, and healed and “in recovery”.

And, the past (now, 28 years) i have paid a million fold, because i got noticed for having those meltdowns—by all the other meanies who lived and worked on this street—-and most still live and work here, as of now, March 2019. The rest you all pretty much know about–and i have told this story in full, in my blogs, both on WordPress, and Blogspot.
I am here, because i feel that i am now near death because of my circumstances. And i feel so now more than ever, as i re-write this in 2019. Because i am now on kidney dialysis.
Yes. This has greatly affected my physical health. My health began going downhill the first week of Molly having her mean friend there playing the louder than F music right into my living room every fucking afternoon.

Back when i was still in what i thought to be my happy bubble—-when i still lived on Happy Street next to the 2 kind old ladies—i began to write appeal letters to a rich aunt and uncle—-because his wife is my late father’s sister–to ask for a small trust fund i could live on, so that i could have the freedom to get the help i needed so that i could do things to better my life without me having to fear being penalized by Social Security and then being totally knocked off my benefits-and then, if things didn’t work out, i wouldn’t have to face the very real risk that ppl have of not being able to get their benefits back.
Well–in the beginning, my aunt would read my letters—and my aunt would always call my mom to discuss my plight—and she would always ask my mom lots and lots of questions about me, as if she was genuinely concerned about me.
I would get my hopes up so high everytime that i would get a letter and the money i was asking for.
It resulted in me once getting $300 from her to help pay for some car repairs i needed. Then, in 1994, i began to write asking my Aunt if i could be in my uncle’s TV commercials–so i could earn money that way. I also asked if she would help me to get my artwork, stories and poetry published so i could make money through my creative endeavors. I also asked for help with the dental care that i needed that Medi-Cal would not cover at the time, to help save some of my teeth. (This is why my teeth are now really bad). Her heart had already grown hardened against me now—for no reason at all—so–her answer to all of this–was a loud, resounding “NO!!!!” To my mom, she said “No–she cannot be in her uncle’s commercials because of this and this and that—no–i won’t help her with her dental care or her therapy–or anything!!!!”
She went onto say to my mother that:

“Melissa just needs to be satisfied with what she gets from the government aid programs–make the best of things as they are, and just tighten her belt and not have cable TV or a car or music or books or magazines, etc. She needs to just count her blessings that she has gov’t aid–and leave me alone!!!”
I stopped writing those letters for awhile–and then began writing them again. Then, my father passed away in February of 2000. Shortly after that, she began just throwing my letters away. She told my mother she was doing this, in one of her phone calls to her–and my mom, appalled, asked her to just please send them to her, and she would keep them for me in a file. The aunt complied–and so now, when i write to her–my mother gets the letter–unopened. I finally began writing to my uncle in 2007 and 2008. As a result, my aunt sent another small amount to my mother on Christmas of 2007–“For Melissa’s care.” I was finally able to buy a computer for the first time ever–and pay off a bunch of debts i had, with this money. (I have now stopped writing this aunt. But i now have numerous dreams where i am talking to her. In some of the dreams she is actually nice to me, in others, she is stern and cold, and acts lie she hates my guts.)

During another period where i was doing >alittle< bit better, my parents and two of my sisters, their families and my little brother and his family–all moved to Idaho. I stayed behind, b/c i now had a kind cop helping me–and the support of a bunch of kind ppl in a Christian Singles group that i was into from 1996 thru early 2000. My goal was now to move to Arroyo Grande, where i could be close to all of my Christian singles friends..so i could finally be away from this nightmare street, once and for all!!!!
That didn’t happen–again, b/c i am on Section 8–and you cannot find a decent place on govt aid. Plus–again–if i were to move–and it were to not work out–and i had to move BACK here–my mom could no longer rent to me on Sec. 8, b/c of their new rules that do not allow ppl to rent from family members. In 1997, my sister was going to put this duplex up for sale, and my mother bought them so i wouldn’t face being possibly homeless for the first time in my life.
My street problems continue to be downright unbearable–EXCRUCIATINGLY UNBEARABLE–at times.
I have switched my days and nights around NUMEROUS times during the past 28 years, to cope with this.
I have also learned to sleep with loud white noise, loud music, and loud TV–to cover the noise and the harassments and tauntings from the bullies.
I have to be very careful how and when i leave my house. Now that i have caregivers, it is easier for me, much easier.
Sometimes things aren’t so bad. But–the majority of the time–it is.

Alot of ppl will say things such as: “Oh, you just need to ignore the bullies and they will stop,” or “You need to stop letting them have this power over you.”
With my autism the way it manifests–this is WAY impossible to do–b/c i do not have to filters to be able to do that—-this is truly the kind of stuff that i am NOT able to ignore–especially when it involves men actually BANSHEE-yelling at me, laying VERY loudly on their car horns, playing with their car alarm systems, yelping at me, cat-calling, calling me “Fat, fucking [r word] bitch”,–AND—the UN-GODLY way they will just SCREAM, ROAR, AND SCREECH thru here with their already loud, modified hot rods, motorcycles, SUV’s, pickups, sports cars, sports motorcycles, muscle cars, and etc.
I DO try to find happiness even in spite of the way things are. I am only posting these notes and letters on here to get help and relief–and also to educate people that this is a VERY real and pervasive issue for autistic children and adults!!!! Most people don’t understand that our sensory issues are a real thing that needs to be accomodated. This is where i have to live until i finally find a way to break free from here, and the bullies are continuing to make it a living hell for me, because they refuse to take this seriously. I’m not asking them to stop doing their work. I am asking for the tauntings and harassment so stop.
Some of the things i would like to try are being able to film/document what’s going on on my street and post it to YouTube. I do have one story sort of written about my life–with pictures. (I do now have a YouTube channel….just Google Melissa Fields Autistic, and you will find my blogs and YT channel.)

I just want relief from this pit already—i think that being here for 28 long years is enough, on top of now knowing i could die soon from my kidney disease–that is why i am here.
Thank you for listening and for getting this and for being my friends, those of you who are my friends. God bless you all!!!!
Love,
Melissa
~~~
Postscript to the above post, which was written in February 2010….i still live here, and last June was hospitalized for three weeks, and diagnosed with end stage (stage 5) kidney disease. I have been on kidney hemodialysis ever since June 19th 2018.
The employees of the auto shop still torment me almost daily.
In 2005, i developed lymphedma in both my legs, where fluid builds up in a person’s arms, legs, etc., nd they swell up, and my physical health has kept on declining since then, to where i had to stop driving in 2012, and had to start relying on in home caregivers.
Being autistic, most non-autistics do not get autistic people, our triggers, our challenges, etc., and as a result, most of my caregiver experiences have only added to my agony. In March 2014, i wrote a six part series on several of the abusive caregivers i endured from 2012 through 2014.

I was diagnosed as being autistic at age 4, but did not know this until i was 39, when an actual therapist i was seeing at that time, diagnosed me as having what was called Asperger’s Syndrome, a form of “high-functioning” autism, their words, not mine, because i now know functioning labels are bogus AF.
It was only when i came onto Facebook and met people like Tricia Kenney, Sharon Da Vanport, Heather Farley, Emily Titon, etc., that i got woke. Until then i thought i was the broken one, and that i was all wrong. And i sadly, grew up with that ableistic mindset. Because that was what got drilled into me by my own family, and the schools i went to.
Being autistic is not the problem; the problem lies in when most of society keeps insisting we are behavior problems and puzzle pieces that are to be controlled, scolded, lectured, fixed, solved, and worse yet, cured. Even worse? When Charismatic Christians want to lay hands on me and “pray my autism away.” Ummm, miss me with that trope, thank you.
Autistic people are born autistic, and are going to die being autistic, so please listen and learn from us, instead of fighting us.

A Perfect Autistic Hell

Please imagine what it would be like if you were sitting at your computer, you were a 57 year old autistic adult, and you were housebound, unable to go anywhere because of your legs,and on the other side of the wall behind your computer was an eight foot tall giant round steel encased subwoofer bass speaker turned all the way up, throbbing and thumping like louder than hell thunder right overhead..

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That is exactly what my entire afternoon was like yesterday.

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That is what noises that are sensory issues to an autistic person are like. Especially when the loud subwoofer bass was used as a weapon to terrorize me by the bullies in the auto shop two decades ago, along with their loud souped up motors on their motor vehicles, just because they have always felt it a sport to do the things they know will cause me to scream and yell hysterically, and in sheer agony, because to see me in agony is sheer fun to these men. And it still is sheer fun to them.

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This loud bass that i had to endure and suffer with all of yesterday afternoon, was actually three blocks North of my house at a park—and even though a sweet young female presenting police officer went over to that park to ask them to turn that bass down, they turned it up all the more,and they turned it even LOUDER as they were closing at five PM yesterday afternoon. In fact, this bass was still going on at 4 minutes after the 5:00 PM quitting time.

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I spent my entire afternoon in utter agony because of this bass. This bass was just like being forced to have my entire head squeezed into a tight grip to where i feel it is going to explode from the thunderous vibrations going on right inside of it. My ears get turned into vibrating mini subwoofers.

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It was only after that sweet officer came to my house to let me know they would be taking care to see to it that it didn’t get out of hand again, AND that they were going to be shutting it down at 5 PM, that i calmed down somewhat.

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My mom and i both kept calling the police to get them to stop this awful noise. My mom even told them she was afraid i would end up having a stroke, because i was Literally. That. Upset.

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Finally at 5:04 PM, when it was even louder, i called again.

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Only this time, the dispatcher transferred me to the watch commander. My hell became horror when a lieutenant who does not like me picked up the phone.

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I made the mistake of trying to talk to him. I began by telling him i am autistic, as he knows, that i was scared to speak to him, because i heard he was mean, and he became angry right away, telling me:

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“Is this about the beerfest going on at the park and the loud music they’re playing? if so, it is closing down, and you will just have to sit there and put up with it till they stop.”
I told him that it was louder than ever, it was unbearable, and what it was causing me, which was PAIN.
His response: “I don’t care, we’ve already sent an officer over, and we’re not going to send another one. You will just have to put up with the noise till they stop.”
I asked him “Don’t you understand autism at all?”
He got angry again: “Look, i’m not going to sit here and argue with you—”
Me: “I’m not trying to argue with you. I am trying to educate you about autistic people and what it’s like—”
He cut me off: “I don’t need to be ‘educated’! I already know what i’m doing—-”
I said: “But i am trying to make more friends at the police dept.!”
Him: “I’m not here to be your ‘friend’! I already KNOW you, you have a long history of having problems at that address, and frankly, i have no time for your problems!”
Me: “Can’t you have any compassion? Police need to have compassion—”
Again he cut me off: “Look, i don’t HAVE to have ‘compassion’ on anyone, and i don;t have any compassion on you. I’m not going to do anything to help you. I am hanging up now.”

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CLICK!!!!

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I have been one hot mess ever since that awful exchange with that police monster—-which is just what he is. People like him, and dispatchers who are also shrill and rude, are the reason why we become afraid to call the police, or to even say hi to them and smile at them when we see them. It affects me on all levels, and deeply when people are rude, dismissive, shrill, harsh, and try to silence me and invalidate my feelings. I literally feel i don’t matter anymore when i get treated and talked to like that lieutenant treated me.

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People like him have no business getting promoted to police lieutenant, or being allowed to interact with the public, if they cannot have compassion and know how to treat others like human beings.

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The way he treated me and muzzled me and completely invalidated my agony, was nothing but inhumane, and it has caused me terrible PTSD flashbacks all night long.

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The Santa Maria Police Department should be ashamed of themselves for allowing their officers to treat the people they are hired to protect and serve like we don’t matter.

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They should not promote officers who are known to have a negative attitude. Period. Full stop.

Please Understand, I Am Going Through A Very Bad Season Right Now–A New About Me Blog

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A blog by an Autistic adult.

And i don’t know how i am going to get myself back out of this now, because i feel as though the hole i am in now, is way too deep for me to climb out of by myself.

I feel an onslaught of fear and anxiety all the time now, and cannot rest. When i do rest, i want to stay asleep, and not wake up.

I am fearful that my caregiver is going to get fed up with me and quit me. She has become like a close sister to me, and i admit, i cling to her more than ever now, because when she is not here, i literally have nobody to turn to, to talk to, to bounce my ideas off of, to share my thoughts with. When she is here, i love to share my thoughts with her, and love it when she and i can talk, and when she gets me to laugh and giggle. I love it when she wears her hair down, and she lets me play in it and look at the colorful shines in her hair. (Yes, for those who don’t know, i love shiny hair. And she has beautiful long brunette-dark red shiny hair.) Whenever i feel that i may have displeased her in any way, it bothers me so much that my entire night gets ruined by my worrying and anxiety over whether i have made her angry or burnt out?

Today, i am once again way beyond tired. It has been like this every single day now, ever since the police last took the speed trailer away from me…the nice speed trailer i had from June 2nd through July 19th of last summer. When it was here, it became my friend too….because all of my life, to cope with a world that still mostly does not get Autistic people, i have made imaginary friends out of certain roads, highways, and certain electronics. It is hard to explain to those who don’t understand how my Autistic mind works, how profoundly traumatic that was for me to lose the speed trailer a second time. Lately, i seem to never get enough sleep each day, and i feel like going back to sleep when i wake up. This is a combination of the worry and stress about my still-festering, still-bad living situation,still not being able to have the speed trailer put back here, and my worry and anxiety over the way things have been since the orange tanned dicktator got inaugurated.

All i want to do these days, is to curl up into a ball and sleep…..and not wake up till this is all over. Till we have a nice President again. Till i have a way to be able to move from here.

I have changed in the past 6 years.

In 2010, i still was learning about my Autism, and ableism, and neurodiversity. In 2010, i still was a moderate Republican, even.

In January of 2012, i still had a deep Christian faith. And lots of hopes and dreams and goals for myself.

Today, yes, i still believe, but i no longer wear it on my sleeve like i used to. Nor do i like to preach about my faith anymore on my wall. Why, you may ask? Life happened between then and now; by 2012, i had gotten so badly hurt by one too many churches, and by some so-called Christian “friends”—–and i turned very cynical and bitter and angry. All of these life experiences, plus meeting all of you wonderful people on Facebook, has woken my mind up, and turned me into a flaming proud liberal progressive.

I also finally felt comfortable coming out as bi-sexual due to being on Facebook and meeting all of you awesome friends. I have always felt attracted to both women and men, and i did come out to two of my sisters and my mother, in the past.

In March of 2012, i went through a violent verbal and emotional separation of a friendship between me and a man who also professed a deep Christian faith, but he was a man who used me financially, and who would get in terrible mean moods with me every other month. In March 2012, he turned against me one final time, this time for good, and tried to get me kicked off of both YouTube and Facebook both. This was a trauma that i still have not healed from. His cruelty towards me, still causes me to have bad nightmares even today, of him. One cannot put a time limit on PTSD.

And then right on the heels of that, came a long string of very abusive caregivers…..from May 2012 to March 2014. Yes, i blogged about it all in a six part blog series. Those added to my trauma and PTSD.

Even though i now have a good caregiver, and she has been my caregiver now for 3 years, i fear that she too will turn on me and leave. (I wrote alittle bit about that fear at the beginning of this blog.) That fear is a great fear still, because so many people have done that to me in my life. I KNOW i am not easy to get along with. I have a great any rituals, routines, am set in my ways, phobias, fears, sensory issues, triggers, that go along with being Autistic. Most people cannot understand that, and even the ones who do, soon grow tired of me and leave me. This is because most people think of my meltdowns as a behavior issue and they yell at me to get me to stop—and that only ends up making my meltdowns even worse…..and longer-lasting.

I no longer drive. I had to stop driving in April of 2012, due to a growing lymphedema leg tumor on my left inner thigh, and due to me growing more and more fearful of going places by myself anymore.

Since then, i have been mostly housebound, and have been relying on caregivers to come to my home to help me, so that i can remain living in my own home.

To be honest, I am depressed now….and am living only as long as God keeps me here. But to be brutally honest, life has gotten to be an unbearable daily hell for me. On all levels. And it is getting worse. Especially now that we seem to have a whole new regime in Washington DC. A new regime that seems to be all levels of authoritarian—and honestly quite terrifying.

I am truthfully holding on by what is left of my faith…..hoping that God will just take me in my sleep soon.
In the meantime, while i am still on this earth, i will do all i can to fight for the rights of Disabled /Autistic and all marginalized groups of people till i draw my last breath. Because i love you all. You all mean the world to me.
Which is the reason why i post so many political posts now. And why i now have my TV glued to the more liberal cable news channels all the time now. Because i am Disabled/ Autistic, and i am deeply involved in Autistic / Disability Rights……and out of that, i have come to really care deeply about this planet and all of the people and animal and plant life that inhabit Mother Earth.
Because politics and Disability rights and issues are intersected. Politics and Disability rights are completely interwoven. Our healthcare, our benefits that we rely on. Are all at stake now.
Because….these are frightening times we are living in right now.
Because this is who i am.
Please understand.

A Political Post, Because….

Today, i plan not to watch MSNBC at all until tonight when i can watch Rachel Maddow, Lawrence O’Donnell, and Chris Hayes.

I will not be watching the inauguration. I repeat: I WILL NOT BE WATCHING THE INAUGURATION.

Because i do not support him nor do i call him my president.

He was not supposed to be elected.

Yes, i AM going to dwell on this, because again,
he was NOT supposed to be elected.
It is clear that Hillary Clinton had the popular vote, and clear as the hand in front of our faces that DJT is a
narcissistic racist,
sexually abusive,
physically abusive,
verbally abusive,
hot tempered, mean,
vindictive, malicious ruthless monster
who lies,
who goes back on his word,
who makes fun of women for their looks,
who body shames,
who pokes fun at Disabled people,
who thinks Muslims are all terrorists,
who plans to defund Planned Parenthood and ban abortions,
who plans to go right along with all of the Republicans who plan to make deep cuts to our social safety net and healthcare system that will end up ruining the lives of real human beings, and killing us….
who plans to ban the press from the White House
who seems to have a real love for, and connection to, Russia,
who also has a very authoritarian personality,
who has said he wants to strengthen our nuclear arsenal,
who has already managed to anger several nations,
who plans to do away with the climate change agreement,
who plans to do away with everything that protects women and all marginalized groups from hate and discrimination
who plans to take away the rights of LGBTQIA people
and turn our country back to the bad Dark Ages before FDR, Lyndon Baines Johnson, and the Civil Rights Movement……
who plans to cut access to the lifesaving medicine for those with HIV/AIDS, who are now able to live because of those meds…..the list goes on and on.

………and our electoral college was supposed to be there to PROTECT us from demagogues like him!!

Didn’t happen, did it?

Rivers Of Anguish, Rivers Of Hope

Below are some of my latest posts. Because i am needing to write. because i really do need help. Because i really do need a way out of this jail i am trapped in. This jail that is made up of my toxic neighborhood, and the tiny 550 square foot box that i am confined to.

Sunday, Sept. 18, 2016–7:03 AM

“Oh boy, the sun is up early!! GRRRRRRRRRR!!! 😡 It’s gonna be hot today….i am so not looking forward to that!!! 😡

Grumpy me is going back to bed because it is still nice and cool right now, and i will just hope for the best, that my house doesn’t warm up too badly.

Just…..GRRRRRRRRRRRR!!!! 😡 ”

Sunday Sept. 18, 2016–2:53 PM

“Oh God, this is AWFUL!!!!!!!!!! My living room is an awful hotter than Hades OVEN this afternoon—-i should have had the A/C window open—-it is not, and I AM SUFFERING HOLY HELL!!!!!!!”

Sunday Sept. 18, 2016–4:14 PM

“I am okay now. My mom called the fire dept. for me, and they sent a nice police officer over to open my A/C window, so now i have the A/C going, and my living room is cooling off nicely. It got very HOT today, and i was almost ready to suffer heat exhaustion. Because here in my living room, it felt like it was 100 degrees. I was seriously burning up.

I REALLY hate my Sundays though, because i am alone with no one to help me at all on Sundays. At least i know i can call the fire dept or police if need be.

I think i will go cry now. I really feel like crying now. 😥 I HATE having to be alone anymore!!!! 😥 “

Sunday Sept. 18, 2016–5:10 PM

“I am glad i did not have to die in my hot living room today, very thankful for the nice police officer who opened my air conditioner window for me—very thankful that my air conditioner still works!!! 🙂 “

Sunday Sept. 18, 2016–6:09 PM

“The KSBY website says Santa Maria is still at 80 degrees as of now. YIKES!!!! :O “

Sunday Sept. 18, 2016–6:56 PM

“I am glad the sun is setting now. I really want to move where it doesn’t get hot like this!! Yes, i am serious about this!! Because……i actually had to get a police officer to come to open my A/C window today because i was getting overheated to where i was going to pass out.

I had my mom call the fire dept. to do this, but instead, a nice police officer showed up to open the window for me.

Like i say—i’m glad i had this help. Otherwise i would have had to call an ambulance.

I am going to go eat dinner now.”

Sunday Sept. 18, 2016–8:44 PM

“Here are the places i would go if i could still drive and still had a car—but i had someone who would go with me so i am not having to go all alone:
*The San Luis Obispo Farmer’s Market
*Avila Beach/Harford Pier/Pismo Beach/Shell Beach
*Avila Valley Barn
*The movies
*Panera Bread
*Solvang/Los Alamos
*Downtown Friday Nights farmer’s Market
*Applebee’s
*Cool Hand Luke’s for ribs
*San Luis Obispo downtown/the mission
*Morro Bay/Cambria/San Simeon
*Crumbles Restaurant
*F. McKlintock’s for ribs
*Woodstock’s Pizza
*Waller Park
*a nice laid back church that accepts Neurodiverse, LGBTQ, and all marginalized people
I wish i had local friends who would take me to these places. I wish i was not all alone. I wish my family cared about me. I wish i was not in this trap, this cage i am in.”

9:43 PM

“I just watched the news as it was on after the Sunday night NFL football game, and found out that today’s temp in Santa Maria got up to 96 sizzling hot degrees. No wonder i was having heart palpitations, and feeling hot, flushed, and like i was going to pass out!!

If i had not of had my mom call to get someone over here—-a nice police officer came—-to open my air conditioner window, i could have died today. I am still feeling very rattled, and am now afraid to turn off the air conditioner for fear i will feel like passing out again.

96 degrees is way too hot for someone like me to have to sit in a living room that has turned into a hot oven; because of my leg condition, and i am also 3x to 4x plus-sized, with a new problem: low kidney function….i cannot get by without the air conditioner.

I am going to have potato chips dipped in ketchup now. Because that is what i am craving. I am also craving soft and doughy homemade sugar cookies. But i don’t have those, so….yeah…..

I hate my Sundays on desert island!! 😥 “

9:44 PM

“Yes, 96 degrees is way too hot for me!!! 😦 “

I then posted memes about Autumn, because i love that season, when the leaves all turn such beautiful colors, and the days are just warm enough to be comfortable, and the nights are nice and cool. I also posted a meme about all of the soft and doughy looking Christmas cookies i would love to have this Christmas.

I really am alone, and so lonely for local friends.
I am lonely to have more caring people in my life.
I am sad because most of my family coldly ignore me.
I am in pain all the time because of my legs, and this leg tumor makes it so hard to even sit and enjoy my computer.
This Spring and every Spring now when the hills are bright green from our winter rains, i always miss getting to get out on drives to see them and take pictures of them.
I long to live where i can see beauty outside—not these ugly yellow tin buildings all day long.

I am hoping that i can at least get my own speed radar trailer. I made a Go Fund Me page for that, and to also raise the money for a move to a place whee i will have the above things i so long to have.

I so hope someone will help me, please.

https://www.gofundme.com/2ckkdc4

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Please Stop & Listen To Me–I Need More Allies & Friends

I have spent the past several hours sleeping, and plan to sleep more.
I sleep all the time because i am not happy anymore.
I need the police to be real allies to me.
I need for them to stop ignoring me.
I need to have the speed trailer back on my street.
I need for my legs to work again, for this awful leg tumor to be gone.
I need for my next door neighbors to hurry up and move, because of the tension they still cause for me.
I need in real life local friends who will be willing to take me places so i can get out of this box once in a while.
I need for my family to wake up and start caring and understanding and accepting me as i am.
I need them to learn about my Autism and understand it once and for all.
I am tired on all levels.
It is a deep tired of all of my lifetime goals being lost to me.
A deep tired of not having things to look forward to and hope for anymore.
I dread each day because of the street noise and the next door neighbors.
This needs to change.
It isn’t just me, it is many elderly and disabled people who are in this same or similar boat.
Society throws us away and ignores us because we are too inconvenient to them.
We need for you to all care, to get in the cubby hole under the stairs and sit there with us, when we go in there, instead of yelling at us to get out of there.
What harm would it do to let me play with your shiny hair, big sister?
What harm would it do to listen to the story i have told, to see why i told it, to understand why i told my story—-which is because you all have essentially left me to live alone and lonely my whole life, always on the outside, always on the fringes.
I was always the last one to know things.
Please don’t tell your Autistic/Disabled children/kids/relatives
that they will never date
never drive
never have a job
never have friends or romantic relationships
or that they don’t know what’s going on or how to think for themselves
that is Othering and making us feel like we are wrong, less than and don’t belong when we DO belong.
Remember this:
Children are developing human beings, and even though we may develop at a different pace, does not mean we won’t be able to do all the above things.
We are still human beings, capable of great success, all our families have to do is BELIEVE in us and not ignore and discard us to sit alone in our rooms.
Many a time i would sit alone in my room and cry wondering why you all hated me?
God made us, and God did not make and does not make mistakes, so why do you so easily discard us?
Think about it….please listen to me because my health is now failing and i honestly do not know whether i will be around that much longer because of my health issues.
Yes, i needed to write this.
Yes, everyone needs to read this and take this to heart.
I do not want to be alone anymore. It hurts like hell to be alone.
This is why i have turned to certain roads, highways and electronics and made them imaginary friends.
This is why i made a friend out of the speed trailer when it was here.
Exactly why.
I hope and pray i get that back within the next two weeks, maybe even this week.
Yes, because it’s my friend and i feel it protects me when it is here.
I loved to sit outside and watch it working, so i hope it goes back on my side of the street again where i can easily watch it working again.
But it also makes people drive the speed limit, even slower, and lessens the loudness of the noise, and it also takes care of the loud hot rodding too.
Please, God, let this week be the start of life getting better for me again.
Thank you.

My Go Fund Me:  https://www.gofundme.com/2ckkdc4

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