Tag Archives: Angry Autistic Speaking Out

How. Dare. You.

The following is an open letter to the caregivers, a brother and sister, plus their mother, and their friend who lives with the mother and brother, who all came into my life….the sister on July 7, 2018, and the brother on August 2, 2018, to become my two caregivers, and to be, as they told me, the loving family i never had my whole life.

Warning, this is another long blog, because, well, i have alot to say, so….okay.

My Backstory First

I am Autistic. Growing up in the 60’s and 70’s, my family never understood or accepted me. All of the millions of quirks, rituals, routines, etc. that i had, were always squelched; i was squelched, made to feel Othered, made to feel like i was bad, wrong, defective, and weird.  Instead of being embraced, i was was often taunted, scolded and punished for being me. I was mislabeled as mean, selfish, lazy, spoiled, etc., when i was never those things. Whenever i would try to do the things they all wanted me to do, and i would not do it right, i would just become discouraged and i would withdraw. It became easy for me to just withdraw into my world and give the fuck up. Rather than to keep on trying to do the things, and always end up always, always, always getting it wrong.

My fears were always used against me by my family. Yes, i did have many many good times as a kid too, but i also was made to tow the mark and to mask, to hide the real me by my family, so that i could survive what was for me, sadly, a daily stinking rotten hell.

I couldn’t cope with being born into a family who were so rigid and narrow-minded. I always felt as though i was ganged up on. They all told me, daily, that i would never have boyfriends, never learn how to drive, never have friends…..that i would never work at any gainful jobs. They told me that i would never have any hope. Or any of my hopes and drams for my life, fulfilled.

And guess what? I have fallen through the cracks my entire life. I have never been able to work at gainful employment, nor have i been able to find much in the way of friendship, and real support and acceptance either….because even now in the year 2020 we Autistic are still sadly misunderstood, Othered, and oppressed by the vast majority of non-Autistic people. My life has been a lonely life of me never getting to date, go to parties, concerts, or get married or have children.

In addition, i was what they used to call a tomboy, and later on, in my mid-twenties, i came out to one of my two older sisters who i trusted, that i was bisexual. Today, i proudly call myself queer and non-binary. I have always been attracted to both men and women….and today that includes trans and queer people.

Growing up, i had so many, many meltdowns because of the way i was so often misjudged and then punished. I grew up terrified of my father, and indeed, i was never allowed to disagree with him, have my own opinions, or talk and joke with him. My brothers and sisters were always taunting and criticizing me…and exploiting and using my fears against me. It is no wonder that i grew up so afraid to stand up for myself both at school and at home. And in public. It has only been in the past 25 years that i have slowly overcome my fears of standing up to people, but even now, there are still times today when people’s meanness and insensitivity can send me running away into a crumpled hot mess. And. I. Just. Shut. Down.

I basically grew up feeling like i was my family’s punching bag and throwaway. I grew up feeling like i was unwelcome both in my own home and at school. I grew up feeling like i did not matter and like i was not supposed to matter.

Like i was not supposed to exist.

In May i will be 60 years old. I have still never been to a rock concert, and my siblings, except for two sisters and my mother (yes, i just recently made up with my second nice sister who lives with my mom) all still ignore me. I have still never had an actual job. I never got to pursue any vocational training so i could train for a career…so, i have been surviving my entire adult life on Social Security benefits, Medicare, Medicaid, and Section 8 housing assistance.

In 2012, my physical health (lymphedema in both legs, plus a lymphedema leg lump the size of a basketball on my inner left thigh) digressed to the point where i had to give up driving, give up my car and sell it, and i began needing caregivers. Sadly, that has only added to my lifelong hell, because in the first two years, from 2012 through 2014, and then one month in 2015, when Connie (a nice caregiver i had for four years, and who is back now again as my caregiver) and i took a one month break, all of those caregivers that i had in those time periods, were all abusive.

Except for Connie. Oh, i had problems with Connie as well in the beginning, but that was due to the trauma i had already gone through with the previous caregivers before her….and i still had some ongoing issues with Connie even when we grew closer at the end of her first four years with me, because i still had deep-seated trust and abandonment issues and i still kept misunderstanding her. However, out of ALL, out of every single one of my IHSS caregivers, she has always, ALWAYS had my back,  she has always had compassion on me, and i know i can trust her with my LIFE, because she is honest, and she has never, and will never take my money or steal from me.

Connie was, and still is, my rock. She was my caregiver from March 2014 to March 2018, for four years, and is now back as my caregiver. She has been back as my caregiver since June 22, 2019, last year, when the brother caregiver literally, finally made good on his threats to abandon me, and drove off on me and ditched me….leaving me with NO breakfast, and NO way for me to get mt my dialysis treatment that day.

Connie left as my caregiver in March 2018 only because she got a job offer that was so good she could not turn it down. She felt i would be safe and secure with the two caregivers she had set me up with….but, sadly, i wasn’t okay. They both quit me after just three days, because of the meltdowns i was having over the supersonic loud thunder bass that was coming from a business East of me.

So, in came KJ, who i loved in the beginning. But then after just two months, she convinced me that Connie was not a real friend to me. I foolishly let her convince me to sever my ties with her. After that, KJ turned Jekkyl And Hyde on me, and she began threatening me that she would quit me if i did not start giving her money when she asked for it. Twice a week she would ask for gas money to the tune of $40 at a time. But then she began asking me to give her much larger sums of money that i could ill-afford to give her. But i would always give it to her……because she threatened to leave me with no care if i didn’t give her the money.

I handed over a total of $2109 to her when all was said and done, which never got paid back to me. And she forbade me to write out a running IOU so i would have it documented on paper. Next, she gave me a shower, and when i had two meltdowns during that shower….she took those meltdowns personally, and did not come to help me for two whole days, leaving me all alone to fend for myself again, with me thinking she was going to ditch me…..

I have had caregivers be no shows. I have had caregivers walk out and ditch me. It is the most dehumanizing, terrifying feeling when it happens. So, out of fear, i do what my caregivers tell me to do. Except Connie, she is real with me. I do not have to fear her.

Because of KJ leaving me for those two days, and me not knowing if she was going to even come back or not, i was forced to call a taxi so i could go to the bank to get my monthly SSA money, and that taxi cab was so small, that i ended up skinning my leg lump on the bottom of the door lip getting in and out, and two days later, when she did come back, my leg lump was red hot to the touch, and extremely painful.

A day later, i was still so shaken and upset from her leaving me, from her leaving me to think for two whole days that she was going to quit me altogether, and from all of the money she had already taken from me, that when she came that Saturday, she came in to find me in a state of physical whole body weakness. I was literally laying back in my lift chair almost passed out from the red hot infection on my leg lump, and from just pure mental exhaustion. She grew frightened. I told her i could not move to even go to the bathroom. I made her promise to not take anymore of my money, and to never abandon me, and she agreed she would not do either to me ever again. She was even in tears…..apologizing over and over…promising…that she was here for me for LIFE!

She called an ambulance, and i was rushed to the hospital, where they ran test after test on me. I was diagnosed as having full-blown Type 2 diabetes, sepsis in my leg lump…..yes, sepsis, folks…..plus….end stage kidney failure.

I was admitted, given heavy antibiotics, and then had a chest catheter placed in the upper right side of my chest, and two day later, i began dialysis. I was in the hospital a total of three long weeks. I was no longer diabetic, but diagnosed as just borderline again.

And then i began dialysis treatments in center on July 5, 2018. Two days later, KJ had me meet the sister caregiver, so that the sister caregiver could become my secondary caregiver and backup caregiver. After that, KJ got mean again, with even more threats to leave me, more demands for me to hand over even more of my money……so, with the sister caregiver now in my life, i finally got up the courage to fire KJ. The sister then got me hooked up with her brother as my second caregiver. He started working for me on August 2, 2018.

Note: i have never wanted to have a male caregiver, because i have never been comfortable around men due to my past with my father and brothers, plus my past with a police corporal and another friend that i had had who both also turned against me….but i was told by the sister caregiver, that the brother was gay, was a sweet angel, and that he would have lots of compassion and patience with me, so i agreed to have him work as my secondary caregiver. But as soon as he came on, i had hit it off with him so well because i loved his sweet and charming personality…..that he quickly became my main caregiver….and the sister became the secondary caregiver.

I believed him when he told me he would have my back all the way, that he would not let anyone bully, mess with me, and mistreat me.

The next two months my life was once again happy and blissful….together, the brother and sister both woo’ed me, and he and i, especially, really hit it off great…that was, until after the middle of that September when i had to go stay up at his and his mother’s house so he could rip out all of my carpets in my living room and bedroom….from then on, things all went right back downhill yet again for me. The brother and sister caregiver team also turned mean. Very mean.

You can read all about that here: https://melissaautisticfields.wordpress.com/2019/07/04/i-should-of-seen-the-signs-re-vised-and-re-edited/

And so here is my letter to them.

Dear Brother and Sister,

How dare you?

How dare you both come into my life, along with your mother, to charm and woo me and to tell me and make me believe you loved and cared for me, and then you all turned on me after two months? After i had already bonded with you all?

You woo’d me by getting that nice sleek fast Cadillac sports car with the bomb SiriusXM satellite radio….woo’ed me by taking me on outings, to the ocean, Santa Barbara, San Luis Obispo, Solvang, and to lots of restaurants, etc.

You both woo’ed and charmed your way right straight into my heart. I have never been able to have any children of my own. Yet you both won me over with your charming personalities, and right off the bat, became like the son and daughter i never had. Your mom became like another nice sister to me also. And i also bonded with the girl who stays with you and your mom.

How dare you also come in, as so many of my other past caregivers did, and start taking even more huge sums of money that i still could ill-afford to give you? Huge sums of money kept going out to you both, as well as a three pages long list of my possessions that were also taken from me. Even my personal files got taken from me….all of the important papers i had, all important documents i used to keep, important documents that i still need, got literally taken by both of you. Even my birth certificate! All of those important papers got taken right out of my desk, where they were all neatly organized, all in different-colored folders, and thrown willy-nilly into Rubbermaid tubs and thrown out, literally, into my back yard to get rained on and ruined.

All of my personal details about my disabilities were then taken and used, out of context, against me to help build me up to be a villain in the eyes of all of you, so you could use that info to your advantage.

You had NO right to read those files. And to try to use them against me. Yes, as my caregivers, you are also bound by the HIPAA laws.

You convinced me to go to your house for three weeks, so you could rip out my carpets. Yet reliable sources say you and sister were here at all hours of the day and night, spending the majority of your time partying in my middle room. There was always loud music, drugs and loud talking, laughing, and streams of people coming and going out of my middle room.

What should of taken 3 days at the most for you to do…took 3 weeks instead, because most of your time was spent getting drunk and high in my own home. My home is not that big, so it was just my bedroom and living room that needed the carpets taken out, and the hardwood floors sanded and finished. And guess what? My floors are still not all the way finished.

I chose to believe you when you told me, sister, that your husband was abusing you, so i opened up my middle room so that you could stay there to get away from him. But next, brother wanted into the room as well….so he came too, with his computers and furniture, then your friends all came along too…and you both took over that whole room and my home, and me.

There were many times when you would even place large barriers in front of the door so i couldn’t go out there.

I put up with the daily, daily, DAILY games you both played of always getting to my house late, often so late that i would sometimes not get to eat a thing until 3 in the afternoon! When you both knew that i, a borderline Type 2 diabetic, eat my breakfast at 11 AM. The daily games where both your phones would go to voice mail, and then suddenly when i was in full on meltdown mode because you were already a full hour late, you would finally answer my frantic calls, and then tell me you were “On my way, OMW, down the street,” etc. And i would wait even longer….till you would finally, finally show up.

Then i was forced to move up to your house for 3 whole weeks or else i would have to find a new care provider, because my carpets were making your asthma worse. Yes, i had to go, because you threatened to leave me as my care provider if i did not do as told.

After just one and a half weeks at your house, came the day you brought my transfer bench to the house, and you came into the living room where i slept, and as i was waking up, you stood over me and ordered me to take a shower. You. Literally. Ordered. Me. To take that shower.

It was the shower from hell. I got literally yelled at and belittled when you gave me that first shower at your house, brother. That day, when i told you how i do my showers, when i told you the workarounds i needed to be able to handle taking a shower….you suddenly got a dark mean scowly look on your face and you yelled at me and belittled me, telling me that:
*I don’t care about myself
*”Why can’t you take a shower like a normal person does?”
*”Showers aren’t meant to be nice and pleasant. I have to sit with my back against an ice cold tub, and you don’t hear me bitching about that!”
*I could not have the towel like i like on my transfer bench, so i can sit on the towel instead of the cold wet transfer bench, or the towel i like to have on the floor of the tub so that i don’t slip in the bathtub and fall. I’m a fall risk, remember?
*And i also could not have my private parts wiped before the shower like i need to have them wiped, because, and your exact words were: “I am not going to wipe your fucking ass, when you are already going to be taking a shower.”

You refused to understand my need for accomodations.

And you just stood there angrily arguing with me as to why i had to take my shower YOUR WAY….YOUR WAY OR THE HIGHWAY.

It was only after i was in tears, sitting buck naked on the bathroom toilet, sobbing, did you suddenly snap out of that fucking pissy mean mood, and you apologized, told me you were sorry, that you loved me, that you loved me SO much, and so didn’t mean to hurt me….. and then you did wipe me, and then you did place the towels on my shower chair and floor of the tub. And the actual shower was fun.

I never forgot that incident though. And that was the start of my life going right back downhill to hell….yet again. It was from then on that you and your sister both began losing patience…and your tempers….with me.

Two days later, that Saturday, you again lost your temper with me when we had gotten home from dialysis. we had brought Kentucky Fried Chicken with all the fixin’s home for our dinner, and you went ahead and and served both our plates, before getting my backpack out of the car. You got angry and bit my head off when i asked for the backpack, and then got angry again when i asked you to fix my potatoes and cole slaw in separate bowls so i could handle eating my dinner.

I could not eat until you came in to tell me you weren’t angry at me anymore. Yes, you did do that afterwards, but that, together with the shower incident two days before, stuck with me. This was how life was for me with my father. My father never had patience with me. At all.

And then, i came home from those 3 weeks at your house to find the awful canary yellow walls that i still hate, to find my computer speakers broken, to find my TV sound bar no longer working, to find all of my belongings all gone, hidden, and put where i could not find them. You had PROMISED me that when i went to your house those three weeks, that none of my belongings would get moved, misplaced or tampered with….that i would have my living room painted either the lavendar or blue i had requested….but no. None of that happened.

You did get my sound bar working again. But i lost my computer speakers and nice subwoofer. The speakers you gave me are shitty, and i still have them because i am still struggling to climb out of the financial hole that KJ, you and your sister put me in.

You got angry at me then for being upset that my house was all turned upside down. You accused me of not appreciating all of the hard work you did on my floors and walls. The yellow walls you knew i would hate.

Yes. You both have nasty mean abusive as fuck tempers.

I put up with the perfume and cologne taste that was always on my oranges, until i could not stand it any longer, but when i began telling you, you got pissed off that i would dare to tell you i did not like having to taste your perfume and cologne in my oranges.

I got falsely accused of having candida on my scalp and body…and got accused of causing the sore that was on your left hand. Sorry, but Connie worked for me for 4 years, and never did i have candida. I have what is called “cradle cap” on my scalp. And she is a licensed LVN nurse.

Even so, you convinced me i had candida…and together, you and sister both talked me into having my hair buzzed completely off. This happened in November of 2018. I wish to God i had not of had you shave my hair all off, because i am now having a horrible time getting it to grow out to what it used to look like….it is growing normally on the back, and sides, but the top of my head is still quite thin, and i cannot grow proper bangs anymore.

When you began to get literally pissed off at me for always asking you if you got my backpack out of the car and put on the back of my wheelchair…or i would ask you to get me my backpack so i could have my reading glasses so i could read the menu in a restaurant we would go to….that was really cruel of you to get pissed at me for things like that, because you were here to HELP me, to CARE for me….you were not here for me to help you to make your life more convenient for you.

And there was a damn good reason why i was always so paranoid about my backpack. That was because when you first began working for me, and you picked me up the first time from dialysis, you had left my bag sitting there on the asphalt pavement of the kidney center’s parking lot and had to make a fast u-turn to go back to get it. Luckily, we were right in front of the clinic when you remembered my bag, and you did not have far to go to retrieve it.

You and your sister also kept losing your keys to my house, and you both kept losing your wallets…and in addition to that, you seemed to always be overdrawn on your bank account, so i was always, always having to give you both money, for gas, for snacks, for all of our meals, out, i paid for every single one of the outings we went on. Also, i would often find money going missing from my own wallet.

I even paid for some of sister’s medications that she needed, and for some of her medical office visit fees that she had.

Again. You and sister were like a son and daughter to me! I loved you both with all my hart, and i loved your mom and A too!

I did not ask or need to be ordered around in my own home. I did not ask or need for you to put me through literal boot camp in my own home. I asked for and needed your respect. Your compassion. Your patience. And to learn about my disabilities of Autism, Lymphedema, Kidney disease, and borderline type 2 diabetes. I needed you to both be here for me. For ME.

We would go to my medical appointments..and instead of you having my back in those appointments, you always sat behind me, rolling your eyes. (If sister took me, she would sit there engrossed in her phone.) If i had to stand up to the nurse or doctor, or counselor, i was always the bad guy in your eyes…..neither of you ever saw the ableism and misjudgments i was experiencing….you only saw my reaction, and you villified ME for it, instead of seeing the ableism i was experiencing.

Next came the face mask. Yes, you suddenly began showing up wearing a large face mask. Connie never felt the need to wear a mask around me…..but you did. Why? I took a shower everytime you ordered me to. I had to or else i would get yelled at and berated again. Finally i was able to talk you out of wearing the face mask. The face mask triggered me because it hid your mouth, and your smile…it placed a barrier….a wall….between us. A few weeks of the face mask, and i finally talked you out of wearing it.

But then next came the awful blindingly snow white medical scrubs…medical scrubs that no one wears anymore. Medical scrubs that you seemed to know would trigger me, because snow white medical scrubs are worn in mental institutions. And you wanted me to feel Othered by those horrible scrubs.

I was told off when i told you how i wanted my toast to be cut, buttered, and the strawberry jam spread on it. And when i told you how much mayo and seasonings to put in my tuna. And when i would tell you i could taste the strong taste of yours and sister’s cologne and perfume on my oranges in the mornings. It was as if i had no say in how i should have my food fixed. That is so many levels of wrong to not respect how i like my food to taste.

I was given an unnecessary guilt trip by your sister, when one night at dialysis, she wanted to rush me out of my chair so she could hurry up and get a Christmas tree for her and her kids, when she could of done that on her many nights OFF from working for me. She even made it a point to tell me, several times how i made her children cry that evening, all because i was late getting off the dialysis machine.

Sister began taking your Cadillac to use for herself, and she did it every single time whenever you and i were going to go somewhere on an outing, and one night began playing a mean “Ya, ya, ya” game with me via Facebook Messenger when i kept hounding her to get back here with the car so we could get out of the house. She caused me to not be able to eat my dinner till well after 8 PM that night due to her selfishness.

How about Christmas at your house? I got treated to another of your dark mean teenage angsty bad moods. You already knew that i was badly hurt in many of the churches i used to go to….so, certain worship songs, certain styles of preaching, even certain Christian rock, have become PTSD trigger for me, yet that evening, after dinner, you decided to put on a series of prayer videos that you already knew upset me, and when i began rocking, crying, and covering my ears, and begging you to turn it off, you got mean, and told me you had every right to listen to that because, Christmas. I ended up having to get up and leave the room……it was only when your mom went into talk to you on my behalf, and yes, she did have my back that night, that you snapped out of your shitty teenage angst mood, then you came into the office where i was, and apologized.

Then i got told i could no longer talk about Rebecca, the sweet imaginary friend who i had made out of the my dialysis machine. You even cruelly told me that you had run over her and killed her when you wrecked the nice Cadillac the day after Christmas. You stopped going in to the treatment room with me at dialysis.

You stopped coming into the lobby to wait for me after dialysis, and the poor techs had to always come out to try to find you and your sister’s cars.

You and your sister were often late picking me up from dialysis. Sometimes even as much as 90 minutes late.

You took me to a much needed mental health appointment, and then left me there stranded, waiting for you to come, and the clinic was closing, with you and the van you had driven us to that appointment in, gone. Just..gone.

When me and my therapist tried to get ahold of you and your sister, both your phones went straight to voice mail. He had to try to get me a taxi, or the Smooth bus to take me home, but he could not get me any rides. As far as i was concerned, you had left me stranded there at that clinic to fend for myself and for me to find some way to get myself home.

When my dialysis social worker finally got ahold of you, you finally came to get me….but instead of you being understanding and apologetic for leaving me there, you angrily lit into me for being upset, even though i was completely justified in being upset. You lit into me and called me selfish and self-centered, and called me a diva.

You literally told me i had no right to be upset.

Whenever i would have a meltdown, you would instantly yell at me and scold me, and then the meltdown would escalate to where you would both threaten to leave me…and this was especially frightening when this would happen on my dialysis days. I began to fear that i would someday be forced to miss a dialysis treatment. I was always in a state of fear daily, fear, of you two being late, of you two pulling a no-show, of you two actually causing me to miss dialysis…..and guess what? It did finally happen. Last June.

All of this caused me to be in a constant and extremely high state of stress. Anxiety. Worry. Fear. That it began to affect my catheter and my dialysis treatments. Soon, i was having to have the clot-busting drug, Acti-Vase pit in my catheter…every two weeks, and then, every week. Next came weekly visits to the cath lab at the hospital, and several catheter replacements.

My blood pressure while on the dialysis machine, was always spiking dangerously high, and whenever i would have a bad time scene with you and sister, i would go into dialysis with my blood pressure literally at stroke level. 

Because i had to go to your house for 3 weeks, i never got to follow up on getting my fistula fixed. I had had surgery that September 14, to place that fistula in my left upper arm, and it didn’t take…it never developed….

Then when i tried to get a new one with a new surgeon up in San Luis Obispo, you had the car wreck, so we were back to using your sister’s car, or your friend’s car again, so i could never schedule the surgery to get a second fistula.

It always seemed like i was on trial. I felt like i always had to prove my disabilities to you. Even then, you still would park us places where it was hard for me to get in and out of the car. You would park places where i had a curb, or a tall thick bush right in my way.

Do you realize that whenever you got upset at me, how deeply it hurt me? We had meeting after meeting between me, you, sister, and my kidney center social worker…in the hopes that we would finally have a breakthrough, and you’d both finally get me, you’d both finally get my autism, and my sensory issues, and what my triggers are. And you’d finally get my physical limitations.

But. It never happened.  Because, both you and your sister did not truly care. In fact, it seemed as though you both would deliberately provoke me to have those meltdowns, so that in the heat f my meltdown, i would fire you, and then you could take me to court for mental abuse. I saw the evidence of this everytime we would have an upset. You would always say things like:
“Brother/Sister, we need to document this.”
“Oh, this is a pattern with you, this is what you always do, this is what you did with all your past caregivers…this isn’t autism, this is you using your autism as an excuse”
“Document this one.”
“Document this.”
Over and over you’d say we you needed to document it evetytime i would have a meltdown.
“You’re not really autistic…my friend is autistic, and she doesn’t act like this!”

No. No. No. No. Just writing this now, hurts. It hurts that you saw me as a threat, that you saw me as a monster, as the bad guy. As a germ, even.

I wanted to die. I wanted to quit my dialysis and die.

It got to the point where i was only happy when i was at dialysis….because….at dialysis, i was and am accepted….at home….all i got was cold hard ableism. At home i got provoked into daily meltdowns…then gaslit…squelched…oppressed….yelled at. scolded, yelled at some more….then days upon days of being literally ignored…..

I began to want to run away from my home because of the hell my home had become. Not only did you and your sister take my money and material possessions. You took from me, my dignity, my joy for living, my self esteem…my very sense of BEING.

I continued to have to taste your cologne and perfume on my oranges.

I continued to feel all alone, and totally on my own whenever i went to a medical appointment.

The sister’s mean moods got even worse. To where i stared getting yelled at and berated just like she would yell at and berate her own children.

You never got the Cadillac back.

Every afternoon i would spend in here all alone while you were all out in that middle room. I was all alone and i was lonely. I would always have to get up from my lift chair or computer chair to physically walk back there to the top of the steps leading from the laundry room to the breezeway and middle room, and call out to you….i often had to even come into the middle room to come to you if i needed help.

If i was in the shower, i had to always call out to both of you several times before you would come back into help me in the shower. Because. You would both literally go out in the middle room and leave me all alone when i would shower. I was left all alone every single afternoon in here, and i always, ALWAYS had to go to you to get your attention.

In May i couldn’t take it anymore. Things got so bad that i was going to actually hop a bus or train, and run away, from my own home. When you both came late to get me to dialysis on the morning of May 7….then you both drove in yelling and screaming at me and telling me my autism wasn’t real, that i was just a bad mean person…..and then i got yelled at even more that night after dialysis for being upset…and once again, rightly upset….about my dinner being completely inedible because of the way the cheese was melted so thick all over my spaghetti…..it just all snowballed….that, coupled with the daily “Being Late Game” you both loved to play with me….all the money you both took from me…all of my nice washcloths and towels all now gone, the blankets my mom gave me, my full length mirror that i had in my bedroom also gone, my Living Bible gone, a beautiful glass pitcher broken, my butterfly wax candle scent burner broken, me, and my home being taken over by the both of you…..how i liked things to be never respected…i didn’t matter..no, i did not matter to either of you….i couldn’t take it anymore…..i threw my food on the floor out of sheer hurt, sheer frustration, and then ripped the pictures that your daughter drew for me off the wall, i didn’t do it to be mean, i did it because i was done with all of the hate you two were throwing in my face all of the damn fucking time.

That was why i had Connie come back to work Mondays and Fridays, and i was going to have you, brother, work the rest of the days and hours. So that sister could be back with her children and have her time back. And so i would not have to deal with her temper and yelling at me anymore.

That worked until you realized you would lose money by having Connie come work the two days a week.

Things finally culminated when you came to work the Saturday of June 22 reeking of cologne, and when i told you i was afraid i would taste it on my oranges, you flew into a red hot rage, gave me your two week’s notice, and then you literally LEFT me, with no breakfast, and no way for me to get me to my dialysis treatment that day.

And then you went to the labor board. All because i refused to sign the incorrect fraudulent timesheets that you kept trying to submit.

You and your sister never truly loved or cared about me, and neither of you ever had my back. If you had cared, you would of treated me and my home with respect and dignity, you would of listened to me, you would have read my blogs, you would have read all of the other things i gave you to read on Autism, neurodiversity, disability, and disability rights, and you would of believed me and you would of had my back. You would of both had my fucking back. I also include you, Lucky Mama.

You wouldn’t have stolen from me and taken all of the money you took. You would of respected my routines, rituals, sensory issues, triggers, quirks, etc. You would have respected me, seen me and heard me. You would have shown UP for me.

I have had nothing but nightmares most nights since you all left me. Nightmares. Nightmares. Nightmares. Nightmares that won’t stop.

How dare you.

How dare you even call yourselves caregivers. You are not caregivers. Caregivers have a real heart, and treat and accept their clients as they are, and work to get to know them, their likes and dislikes, and go out of their way to honor their clients and to make life as happy and pleasant as it can be for us.

You are both liars, thieves, and scammers, and you both belong in prison, and never allowed to be caregivers ever again.

And if you believe in God like you both always told me you did, you will read this and realize the full on gravity of what you did to me.

Sincerely,

Melissa Fields

Multitudes-A Way Too Long List Of Things Broken And Taken By My Past Caregivers

Posting this mainly for my records. Because the two people, a brother and sister, whom i let into my home and trusted to care for me from July 7, 2018 through June 21, 2019, took so much from me that i am only now way too slooooooowly trying to replace.

Things The Brother Broke 

*A shiny black and silver chrome butterfly candle wax scent burner i had in my kitchen that i really enjoyed because—butterflies—the nice scents that filled my house—and the way it lit up my kitchen counter where it sat.

*A large one quart sized glass pitcher with Cobalt Blue trim that i used to keep all of my rocks in.

*One large office-sized stapler

*One purple electronic rechargeable Swifferjet mop

*A green Hoover upright vacuum cleaner with attachments, i had bought in 2012, with money from the sale of my car.

*My Klipsche computer speakers and subwoofer that i had on my desktop computer, I really enjoyed the way they sounded. He replaced those speakers with speakers that are hard to adjust the volume on, and they are also quite shitty-sounding.

Things The Brother AND Sister Both Took/Stole/Misplaced

This is a quite long list, folks, so grab a cup or glass of your favorite beverage, iced, or warm, and relax and read on, please.

*A five step step ladder i had also purchased in 2012 with the money i had from the sale of my car.

*Two large green travel duffle bags i had purchased from Amazon

*A large black canvas suitcase on wheels with handle that a friend bought for me

*One small zipper travel carrying case big enough to carry all makeup, cosmetics, medications, vitamins, etc., in case i travel

*A $25 dollar complete manicure-pedicure case i also bought on Amazon—i did finally replace that this month.

*Five adult coloring books that a friend and my sister both bought for me

*Two decorative plastic bowls i bought to organize and keep my coinage change in. One was teal blue, the other white with teal blue fish on it.

*A full length mirror i had bought in 2007 at Target.

*One of my heavy duty beige-colored folding chairs is still missing.

*One twelve piece screwdriver set i also bought on Amazon—i also just replaced that this month.

*A 17″ HP computer monitor

*One 54 set of multi-colored gel pens for coloring

*All of my fine tip and wide tip Crayola markers for drawing, art.

*Most of my multi-colored Sharpies

*All of my highlighter pens

*All of my sketch pads i would do my drawing and art on

*All of my multi-colored file folders

*Two pairs of my good scissors

*Two rolls of tape, one duct tape, the other packaging tape

*One of two of my small trash cans-it is hot purplish pink

*Four tubes of Remedy Olovamine Anti-Fungal Cream

*One seven ounce tube of Silva-Sorb wound care ointment

*Ativan—my Ativan pills were always counting as less pills in the bottle than my refill amount. The last time i got a refill it was for 90 pills. 90 pills in a refill—yet when i counted them a few days later, i ended up with 86 pills. I had not taken any of my Ativan at that time, and was using my CBD oil instead to control my anxiety. As of Brother’s last day working for me, i had only three Ativan pills left, and i had not taken but maybe ten pills all told out of the 90 pill refill for my use. Just 3 pills are now left in a bottle that was supposed to at least have 80 left by now, because, that was all of the pills i personally took from that bottle.

*Candy–several pieces missing from bags of—
–three red bags of Lindor Truffle Chocolates,
–one quarter of a jumbo bag of Mars Minis (includes miniature snack sized 3 Muskateers, Milky Way, Milky Way Midnights, Twix, and Snickers),
–most of the mint and caramel chocolate squares also missing from a bag of Ghiradelli chocolates that my friend and past caregiver, Connie Carter gave to me for my birthday this year

*Other candy from my candy dish in living room

*Other candy from my candy drawers
—peanut butter M&M’s
—Reeses white chocolate peanut butter cups
—Reeses regular chocolate peanut butter cups
—Handfuls of my assorted hard candy

*Food—i would find my pepperoni pizza Hot Pockets routinely missing

*My red Solo cups

*Cleaner/Air Freshener—i would routinely find my Windex, lemon Lysol cleaner, and Febreze gone, and out in the garage room

*several of my C-cell, AA, AAA batteries,

*several flourescent curly cue light bulbs,

*one of my power failure lightbulb lights that look like a lightbulb and socket

*my canned air that i use to clean out my computer

*electronic wipes

*One soft black knit cap that my mother bought for me

*Two light velour, velvety-textured blankets my mother bought for me. One is a full blanket, and is dark forest green-colored, the other two are lap and shoulder wraps, and are a dark rusty red color.

*8 large bath towels

*10 washcloths

*two kitchen towels

*My birth certificate

*10 copies of my SSI re-evaluation paperwork from 2005 and 2007

*One long wand Swiffer duster

*Two brooms

*Two dustpans

*One 12 pack of soft white crew socks

*One 60-ounce blue Correlle or Pyrex mixing bowl

*Two white plastic coffee mugs

*3 small steak knives

*Several carving and cutting knives

*Several pieces of silverwear, teaspoons, forks, tablespoons, butter knives

*My measuring spoons are also all gone

*Two kettles/pots

*Two cooking skillets

*I used to have a collection of over 55 music CD’s, 55 plus books, and all of those are also gone

*All of the old clothing i used to have is also gone now—several cute tops, and pants that i knew would fit me if i ever were to lose enough weight to fit in them again, so i would not have to purchase new ones

*Four dark blue money pouches

*Two boxes of staples that go with my stapler that he broke, all of my staples are all gone now too.

*3 packs of large manila envelopes

*2 packs of medium sized manila envelopes

*2 boxes of Mead white legal sized self adhesive privacy envelopes

*2 boxes of small Mead white envelopes

*A red ruler, and green ruler, are also gone

*10 large white poster boards

Things They Took That They Did Return

*A small crystal cross

*My desk drawers

*My artwork and art portfolio

*Three of my four heavy duty beige folding chairs

*my white Hoover carry vacuum that belonged to my grandmother, and is over 40 years old

*My green Living Bible

*Some of my colored file folders

*Some of my Sharpies

*The wing that broke off of my angel that is in my bedroom

But the above things that they broke and took from me, are all things that, either i myself worked hard to buy out of my own pocket, things that were given to me by friends, my mom and one of my sisters, and things i already had that i needed to keep on hand—-now i have to work to replace ALL of it. And i doubt i can do so without some sort of a financial miracle.

In Home Care Providers who are tasked to care, but who instead come in and take over a clients’ entire home and even herself—-then use and steal from that person who is sick, vulnerable,  disabled, and on a fixed low income, need to be held strictly accountable, placed into prison, and then made to work to pay that person back for everything they broke and took from that person.

Every single thing that they took and stole from me.

I now need to go apply to get a whole new birth certificate. All of my SSI paperwork is gone now too.

I have canary yellow walls that wake me straight up out of a sound sleep too early in the morning, on bright sunny mornings, because of their brightness.

I was routinely told by that brother and sister that my autism was not real, that my physical mobility limitations were just me being “lazy” and trying to get my way, that i was just being mean and demanding and spoiled. Told that i didn’t appreciate them and all they did for me.

When i was asking them to accomodate my disabilities.

I still have nightmares almost nightly, about this brother and sister, who came into my life, telling me they were going to be the friends and family that i have never had, and always have longed for—then, once i put my trust in them, they turned around and took full on advantage of me, and took FROM me.

While i spent 3 long weeks away from my home, so that he could rip all of my carpets out and refurbish the hardwood floors underneath, and paint my living room walls the nice sift blue or lavender that i requested he paint them—-they were spending much of that time with both brother and sister partying till all hours of the night and morning in my garage room. And painting my walls a color they knew i hated–hate.

Also realizing that they basically took much of my time away from my home to completely comb through all of my personal papers, documents, etc., and take even those from me. To actually use against me!

To realize that that job of taking my carpets out, then refurbishing the hardwood floors underneath, should of only taken at least a week at the MOST for them to do—but it took the brother and sister team an entire three weeks—with me up at his house staying with his mom and his girlfriend, where i was badly uncomfortable—-that was not okay.

The yellow walls in my living room were not okay, and are still not okay.

The constant gaslighting i got from this brother and sister,
the way they were always dismissing my needs and requests,
and dismissing the way that I liked for things to be done for me, IN MY OWN HOME,
the daily promises they would make to pay me back for the stuff and money they took,
then they’d break those promises
the daily making promises that we would go this place and that, then
suddenly the plans would change, and or she would take the car we were to go in
so then we could not go that place or this place
the daily circus of them always being late without letting me know,
their phones shutting off and going straight to voice mail,
the constant worry of are they going to leave me without a way to get to dialysis, a way to eat,  or are they going to leave me stranded at yet another medical or mental health appointment
the daily battles just to be heard and seen, to really be heard and seen by them,
the daily battle to make them see my autism, see and believe my autism, see and believe my physical disabilities
all of my things being moved, and gone, all of my things and plans and routines—always being moved, always taken, always gone, always messed with
my head always being messed with, my head, my emotions, my feels, always being fucking messed with
the constant changing of schedules, the constant upheaval—not to mention the large sums of money they took from me, from my duffle bag, and from me, they asked for it all the time—
—when i would come home with five hundred in my duffle bag, and end up next day with $180 of that because one of them snuck in and took from my wallet while i was sleeping
their unpredictable temperament—one day we would all be okay, the next day, even sometimes the next minute—suddenly i was being yelled at and scolded again
I was often yelled at and scolded by them
i was expected to act and do their idea of normal neurotypical
if i didn’t, i was told about it loudly and with shame inflicted upon me
this has all affected my kidney dialysis, has even affected me being able to go in to get the surgery  that i STILL need to get a permanent kidney dialysis access port placed in one of my arms, so i can finally be free of this awful chest catheter.

I am still reeling greatly from the effects of having the brother and sister as my care providers. I am reeling mentally, emotionally, and financially. My credit cards? Are all still maxxed out. I feel as if i have been placed deep into a dark hole that i will now never be able to climb out of. And this hurts on all levels. And brings me to a depth of DAILY despair that i can still not put words to to fully describe the daily agony and anguish i walk with. Because of the blatant and deliberate intentional cruelty of a brother and sister who kept telling me how much they loved and treasured me.

I have only been able to replace some of the towels they took, and a few other things. But i need so much more still.

This is not okay.

I am going to keep on writing. It’s the only sure thing that i still have of being able to process through all of this garbage i had to live with day in and out for the past year.

One good piece of news is that i do have Connie back in my life now too. She was my caregiver for four years, from March of 2014 to March of 2018, and only quit because she got an excellent job offer that she could not turn down. She came back when the brother suddenly turned on me, leaving me with no way to get my breakfast, and no way to get to dialysis on June 22, 2019.

The caregiver abuse that i have suffered, sadly happens to far too many disabled and elderly disabled people. Serious reform needs to happen so this can finally be stopped.

 

 

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

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.]
~~~
Not The Cr**y Lady Of Mean Bully Monster Street!!!!
__

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?