An Update On Dialysis

I am happy to report that due to my diligence with the ERD Network 18, I am once again back to four hour treatments, am able to finish my treatments now, and they are working on educating the techs and nurses and facility admin on putting us patients first always, and accommodating our disabilities.

This has been a hard road, but things are improving.

I have been able to finish all dialysis treatments since the beginning of May.

I will keep y’all posted.

When You Do Blue Lives Matter, Or All Lives Matter, It Is A Slap In The Face To Black People

Image by Roy Smith Jr. Two flags, one American, and the other is the black and white blue lives matter flag. Text reads: This is the American flag. This is a gang symbol. Section 176 Respect For Flag, The flag should never have placed upon it, nor on any part of it, nor attached to it, any mark, insignia, word, figure, design, picture or drawing of any nature, including discoloration.

Hello everyone. Plus, it is illegal AF.

Okay. Yeah. I am sharing this because Ima tell you a little story about the flag on the right in this above picture.

Just imagine if you will, that you are Black, you are the surviving family member of a Black person whose life ended needlessly because a sadistic racist police officer decided he was going to shove them into the ground and shove their knee into their neck with the deliberate intent to kill them, just for a routine traffic stop. While his partners watched, and said nothing. #GeorgeFloyd

Or you are the surviving member of the family of #BreonnaTaylor, whose home was broken into by bloodthirsty racist police, in a No Knock warrant, only guess what? They got the wrong house, but because Black people lived there, Breonna Taylor got shot and killed anyway.

Instead of those police officers involved being brought to justice, they get acquitted. Then still allowed to be police officers. Instead of heartfelt condolences, people flew this ugly black and white flag with the blue stripe, and said Blue Lives Matter, All Lives Matter, and oh, Colin Kaepernick hates America because he kneeled.

Would you not feel like you have just been slapped cold and hard, and repeatedly, in the face?

Sure, all lives matter, but it is Black people who have been given the absolute lowest of the lowest rung of the ladder by y-t people. For 400-plus fucking years.

This is why this flag represents even more in the way of hate and dismissiveness of Black people’s pain and hurt. This is why we have the #BlackLivesMatter movement now

I hope this really hits you in the core of your heart today.

Dialysis, Part Two

I started writing a post about today’s dialysis, and, well, FB decided to eat it again.

Today’s dialysis went okay, but it was mentally and emotionally draining for me. For me to have to see Mo there again when he frightened me by the way he yelled at me on Tuesday—-only today, to see that he was now all smiles and laughs, going all around saying nice warm friendly “Hi’s” to all of the other patients, and even pulling up a stool to talk to them ALL in a very caring, warm, and friendly manner, but, me, he totally ignored me— I think that is what has me upset the most tonight. Because he totally ignored ME. And talked to everyone else.

My nurse Whitney tells me that the facility admin did talk to him and address what happened on Tuesday, and my nurse Whitney also plans to follow up and talk to Mo the next time she sees him, since he will be there helping out for the next four months. So he and I can work together without anymore trainwrecks.

But this is what upsets me, and when I am upset it doesn’t matter what has upset me, it still goes over and over and over in my mind until I am a literal mess wanting to just roll under my house and die: Is that he totally ignored me and did not make any move to come in to make amends for putting me in a sate of emotional hell on Tuesday. But he made it a special point to warmly greet everyone else, and to sit or stand and talk to them warmly.

I was so afraid to go to dialysis today because of Mo. Because I knew he would be there again. So this morning when I awoke I called the ESRD (End Stage Renal Disease) Network 18 line to let them know what happened Tuesday. I had to leave a detailed voice mail and I did. I told them everything, and how shitty it made me feel all over again, just like my father all over again and his rage-filled harsh, punitive disapproval of me as a person.

My ESRD Network 18 caseworker, E, called me back during the second hour of my treatment. She and another dialysis nurse, Jewel, who really impressed me, by the way, **viola!** happens to know a great deal about the issues we autistic adults face with ableism, gaslighting and abuse, who is also against ABA therapy, knew exactly what I was describing, my feelings of feeling isolated from everyone else by Mo, and Othered by how I continue to be treated with insensitivity by the Facility director and some of the other staff members.

She knew just how to make me feel heard and seen, and when she told me how frightening it has to feel for me to have to go there just so I can stay alive, and continually try to educate the staff and still these problems keep happening,, how isolating and yes, terrifying this must feel—-I broke down crying—-because my normal social worker also saw and heard me just like this too.

The feeling I get when people really get why I am the way I am, and can articulate it back to me, makes me feel even more empowered to speak up for myself, and that I am okay after all.

Do people not realize, once and for all, that just treating those of us who are autistic with patience, kindness, and letting us speak and voice what is hurting us, and letting us be who we are in whatever space we are in, is the way to help and be a friend and ally to us, and that it is not helping us when you instead, judge us and make us feel wrong in what we feel, and you yell at us and scold us and treat us like we are merely just “bad behaviors” that are to be fixed and cured? God, it really is that simple, but yet, people just still can’t, or won’t, because to them, just because Autism Speaks and the media says so, we are burdens to be shoved off in the corner, and dismissed as nothings.

The team at ESRD Net 18 are in my corner, and that gives me hope again. They tell me that how the facility director is treating and handling my issues is NOT okay, and are going to help get her, and the staff to finally treat me like the human being I am. So I can start looking forward to going to my dialysis treatments again.

My Autistic Dialysis Hell

For years ever since my March 2012 final falling out with my then next door neighbor who was supposed to be a friend and ally to me, G, I have avoided having to go places—anywhere—by myself—ever again. Talking on the phone has gotten even harder for me to do.

The falling out I had with G threw a traumatic switch in my entire body making it so I could no longer handle getting behind the wheel of a car and driving it. To this day, I have not driven again. I still don’t feel comfortable driving.

Losing the friendship of G devastated me to my very core because I wanted with my entire being to believe he was the older brother figure I never had growing up.. He would be so supportive and compassionate, but then every other month, he would get in these pissy ableistic mean moods with me where he didn’t want to bother with me. My mother would have to call him sometimes several phone calls, to get him to be nice to me again.

After that final ugly falling out, I sold my tiny white two door Toyota Tercel, because I was too frightened to drive or go places by myself anymore.

This was the year my lymphedema leg lump grew even bigger, and I began having to have personal caregivers come into my home to take care of me. First, I got caregivers from two agencies my mom paid for, then it was IHSS caregivers.

My health—my body was shutting down even further. Because of G, and the then problems I was having with bullies who used to work in an auto shop across the street who tormented me, and just because I still was not free to be able to pursue any of the lifelong goals I have had for my life since I was a child. I still haven’t gotten to achieve my lifelong goals.

Because that falling out, coupled with the then problems I was having with the nearby auto shop bullies, literally was like losing the love all over again that I thought I had with my father when I was a small child and I stopped being cute in his eyes, and started being a major annoyance to him because I was so damned fucking different than all of my other brothers and sisters.

Losing G’s love and support, and by the way, he has never told me why, he just turned on me and began doing the very things he knew would trigger me, such as the loud man banshee yells he knew I hated from the bullies across the street in the auto shop. G too turned into one of those bullies. Losing his support, crushed me.

Having caregivers come into my home also added to my trauma because well, most NT’s cannot or don’t want to get autistic people and the different way we think, process, and experience and handle life. I went through literal holy hell with one abusive caregiver after another until I finally found Connie in March 2014.

My C-PTSD Trauma Me almost ran Connie off too. But Connie kept coming back to me. She has, so far, refused to give up on me. Like most people have.

In 2018, again in March, she left me once again, this time, not because we were having problems, but to take a job that had really super great pay and benefits, so she could take advantage of the health benefits that that job offered.

I went through several more abusive caregivers while she was gone, this time, abuse that got so bad that I tried to run away from my own home. Abuse that got so bad that my caregiver left me without breakfast, and a way for me to get to dialysis, so Connie had to quit that job and come back as my caregiver.

2018 was also the year my kidneys failed. And I began needing dialysis to stay alive.

At first, my dialysis clinic was on top of any and every problem that arose with non-understanding techs and nurses who didn’t get how to approach and deal with my sensory issues. The then facility director, along with my awesome dialysis clinic social worker, took real care to make sure these issues all got resolved for both the techs and me to be able to work better together. Everyone there had my back.

In August of 2019, that nice facility director got married and left, and her replacement was a woman who from the get-go was totally different. She was harsh and unbending….and soon, my problems escalated because she has never dealt with any of my issues that have come up, well.

With each problem that has arisen since her takeover, instead of her understanding and GETTING it that my meltdown responses are an actual medical response, which is a real something I cannot help when I am triggered, she has made it her mission to become my personal ABA therapist at dialysis. She focuses squarely on the yelling, screaming and cussing that results from my meltdowns—-instead of the very real state of mental PAIN and ANGUISH that I have just been thrown into. And keeps forcing me to work with techs and nurses who provoke these meltdowns.

Yesterday, a traveling tech from LA named Mo, a very handsome young male presenting person, was there helping them out, and he was on my side of the building floor. He wasn’t my tech, but was in the pod East of my pod, working.

I kept watching him with fear because he reminded me of a young 20-ish version of my father. I had the strong feeling that if he were to have to come into my room, he would not be friendly. Still, I hoped that I was wrong, that he would be nice to me if I did meet him.

In fact, when I made my vocal stim noises, singing to the tones of the acoustics in my room, he kept looking right at my room and shaking his head, rolling his eyes.

I honestly hoped he would not have to come into my room at all. I didn’t like the vibe I was getting from him at all. I knew he was going to be unfriendly.

And I was spot-on.

Approximately 1 hour and 54 minutes into my treatment, I pulled the call button because of an issue I was having with another tech, and because my tech was on her break, it was Mo who came striding from his pod, into my room.

RUH-ROH!!

There was NO friendly hello at ALL, and he had a stern, angry annoyed and disapproving look on his face as he looked right at me and then RIGHT down at the large basketball-sized lymphedema lump that is on the inner thigh of my left leg.

One of the somethings that really trigger me into a meltdown–is to not be acknowledged and greeted–one other trigger is to have someone look at me with disgust because of my lymphedema and body size, yes I am very fat, oh well, get over it—-and I have lymphedema too, so get over that too, buttercup—he just walked straight past me to the call button to turn it off—without saying hi to me.

Already, my head was spinning.

He didn’t ay hi.
He didn’t say hi.
He didn’t say hi.
HE DIDN’T SAY HI TO ME!!!!!!!!!
HE-DIDN’T-SAY-HI-TO-ME!!!!!!!!!!!!

I had said hello to him as he walked into my room, then past me to get the call button turned off..
He said nothing back.
I said hello to him again.
Still nothing.

I n fact, Mr. Mo seemed indeed very angry to have to be near me. Because I make strange noises, and sing to the room acoustics.

I’m a godsdammed human being with feelings.

{{{{{{I said hello to this man twice.}}}}}
{{{{{{He refused to respond.}}}}}}

The dam broke.

My response was to finally yell at him in frustration:

“Aren’t you going to say HI to me???”

Because hey, I am here, talk to me. It really hurts to be
Deliberately. Deliberately. Ignored. Hello!

Especially by a young Hollywood type man like Mo who in every way reminded me of a young 20-somehing version of my father.

I do well to go there and try my best to meet everyone, both patients and staff, all halfway. Because I do have compassion and I care about others.

But this arrogant rude AF young man was intent, hell-bent on coming into my room and being deliberately rude to me, just because he didn’t like how I looked, sitting in my chair with my leg lump on full display, the bulge right there for him to see underneath my pant leg.

He was not there to help me like I needed. He was there to just be a rude toxic masculine asshole. Who hated me because I made strange singing noises, and he hated me because of how my body looks. I have learned to see the signs of a medical professional’s disapproval whenever I have to go to any medical appointment. They focus on how I look, and my yelling and distress at having to be there, and call it a behavior and non-compliance. Instead of the real raw fear I am feeling of wanting to just run the fuck OUT of there back to the safety of my home.

Body shaming and disability shaming are what goes on in all medical establishments because medical professionals are taught in their medical schools that being fat and disabled are wrong and bad, so they don’t think twice about treating us like literal garbage.

Until now they had my back at my dialysis clinic, but now they do not, and these problems keep happening. And the problems are getting worse. As usual, their now facility director came in focused—not on my pain—but the full on loud meltdown I was having. Yes, I used profanity again, but during a meltdown, it is next to impossible to not yell, to not scream, and to not use cuss words.

This young man from LA, instead of saying “I’m sorry, hello, I’m Mo, what is your name?” Lost his fucking temper and went off on me. Complete with his finger wagging in my face.

“How DARE you talk to ME like that, YOUNG LADY! WHO do YOU think you ARE that YOU can speak to ME like that?” as he pointed right to my disfigured legs.

I exploded and told him to get out, I didn’t need help, and to fuck off. Then could not stop screaming.

In came Ms. Facility Director. Again focused on my yelling, saying she could hear me clear from where her office is. Focused on how loud I was being, not the state of sheer mental AGONY that her newest young arrogant precious asshole Mo had just put me in.

And they were going to even take me off of the machine early, but I told them adamantly NO! I was going to get whatever dialysis treatment I could get, and they relented and let me stay till my 5:30 get off time. I ended up only getting 3 hours and 18 minutes of my prescribed 4 hours and fifteen minutes of treatment I was supposed to get.

Because I still had to use the bathroom. And they never get me put on at my on time start time, which is at 1:15 PM, Tuesdays, Thursdays, nd Saturdays. I got put on yesterday at 1:40 PM.

My nice social worker who does have my back, has once again been gone on medical leave since the second week of January. She is now not expected back until the middle of April. So I have no social worker to go to and to talk to again.

When people are rude like Mo was, it sends me into a state of utter anguish and personal hell where I flash back to all of the times I was belittled and yelled down and punished and rejected by my father and brothers for just being ME.

I have never done well in environments where the people expect me to act and be the Apple Pie Normal I am naturally hardwired NOT to be. They expect me to rush at THEIR pace. To march to THEIR beat. To just shut up and let them go right ahead and get right up in my face and touch me when I did not ask to be touched. And talk to me however the fuck they see fit, even if it crushes my soul to the ground yet again.

Because oh, it’s just Melissa, she can handle it, because well, Melissa doesn’t matter. Melissa doesn’t have feelings. Melissa doesn’t cry.

Well, guess what? Melissa does cry. She breaks everytime someone comes along and treats her like she is yesterday’s dirty trash.

Because Apple Pie Normal was what was expected of me, and drilled into me growing up in my family. Every fucking single painful day of my life. By my loud yelling screaming domineering father, and my brothers, and sisters. I was expected to never make waves. To never speak up for myself. It was ingrained into me at a young age that what I felt and thought never mattered. I was to just go with the flow or get spanked and beaten and screamed at, then go off in my bedroom away from all of them, a sobbing crushed heartbroken mess.

Be seen, not heard.

Seen, not heard.

Over and over again.

Seen, not heard.

Yesterday’s encounter with Mr. Mo was the last straw. I will be following up with the End Stage Renal advocacy team later on today when I am up for my day.

I will never have another man get up in my face and yell at me like Mo did yesterday, ever again. If they do, it’s war. Because I took it all of my life growing up. I refuse to let them rob from me what little self esteem and self love I have grown to have for myself at the age of almost 61 years.

It’s called toxic masculinity. And I am not here for it anymore.

In the meantime, I spend another night wondering why I even have to continue to go to a place that is just upsetting me even more to be there, than it is helping me being able to just fucking stay alive because my kidneys have both shut down now?

Autism is a disability. Disabled people are human beings. It is time medical professionals be held accountable for how we are treated. Including you, Mr. Mo from LA! Stop judging us. Stop the body shaming. Start listening to us, believing us, and seeing us as the human beings we are.

MY STORY ONCE AND FOR ALL~~AND WHY I NEED HELP TO SURVIVE THE REST OF WHATEVER YEARS I HAVE LEFT TO LIVE ON THIS EARTH

The thing is, I was born.
I exist.
I breathe.
I live.
I matter
As I am.

But, ya see, here’s the thing,
I was born disabled
In May of 1960 in a time when no one knew what they know now about being disabled.

Back then, being disabled was thought of as both abhorrent,
and we who were disabled, were to be pitied, scorned, and put into the back rooms of our houses, or put into institutions.

Growing up, I never knew I’d grow up to go onto Facebook
And find out that there was a movement
A disability rights movement
And a neurodivergent movement
that says being disabled and autistic is OKAY

Yes, I was born Autistic
With co-occurring learning disabilities
And cognitive disabilities
And what I always was told were emotional disabilities
and a perceptual disability

On top of that, I was born with crossed eyes (strabismus)
I had eye surgery at the age of 2 1/2 years to correct this
but still was left with my right eye as my “lazy eye”
I still remember that surgery
and how I was pinned down afterwards
on my hospital bed
blind, unable to see due to patches being put on both of my eyes

That early childhood experience was my first in a lifelong time of trauma
Trauma after trauma after trauma
Because my family, and then schoolkids,
could not understand why I was both giddy silly over lights, and certain things
and why I was frightened of so many, many things that none of my other siblings were frightened of

I was terrified of bright lights
flickering flourescent lights
Cats and dogs
Swimming in a swimming pool
I was too scared, terrified, to learn how to ride a two wheel bike
I was too scared, terrified, to learn to roller skate
Or to play ball because
Instead of catching the ball, I would get hit by the ball
I was even scared, terrified, of the loud static-y record player we had
And our loud radio
And it all hurt
Because all of this was all literally scary to me

Instead of understanding me, I got ridiculed by my siblings
They would use these fears of mine to control me

Growing up, I never knew exactly what was “wrong” with me
I just knew that I was different
And because I was different, I was Less-Than

I knew that I was not at all the normal as apple pie that [I was always told] that all of my brothers and sisters were

I went to special ed classes from grades 1 through 4
then was put right into a rural school with no special ed classes
in 5th grade
when we moved to the mountains east of Santa Maria
I was not accepted at school or at home
Both places I was teased harshly and ridiculed
Or patronized and treated like a little baby
To be pitied
But still Less-Than

The stress of never being enough
Got to me physically
And I developed facial hair
Yesterday, my mom told me that I never had to work
But the reality was that
I was never able to work
Because of my facial hair
And the disabilities I had
And the way I was treated as Less Than
And the way it all manifested inside and out
In my body and brain

And high school
Was even harder
I kept running away in my sophomore year of HS
to get away from my STILL mean hot tempered father
and all of my mean siblings

I desperately wanted to go where
I would find acceptance
and belonging
I did find that in a family who moved near us
in the mountains so I was always at their house
because they made me feel like a person

I was ridiculed also because I knew by the time I was in 7th grade
That I was sexually different
as well from all of my peers
I just didn’t understand then
what it meant to be
Non-BInary, Queer, and Bi-Sexual
Because back then, in the 60’s and 70’s, it was
still highly frowned upon to be
homosexual / transgender / non-binary / genderfluid.
And I never had anyone I could discuss that with
Again, because being LGBTQ in those days
Was still a No-No.

But at home, it was hell, always hell
Because I either had to act silly,
or just clam up into a shell
In order to survive the harsh narrow mindedness of my family
And my father was always scolding
always yelling in a rage at me
I was beaten by him as a child
and punished for things like looking at my shiny hair
and swigging my arms
and using slang
and listening to rock music
and for being too silly
I was punished for my quirks
Always shoved away, punished, and scolded
Then later on in my early 20’s I got diagnosed with
paranoid schizophrenia by an SSI appeals psychiatrist

I went on SSI (Supplemental Security Income) when I was 21,
because of my facial hair,
and then what was thought to be mental disabilities.
I knew I wasn’t paranoid schizophrenic
Because I didn’t have those symptoms
But it was what they labeled me with at that time.
No one thought to say”Aha, she’s autistic!”

And my family never understood me or supported me
Instead, I spent my growing up years
sheltered and shielded from life
from being able to think for myself
I basically never got the opportunity to work
and to be able to get off of the government benefits
I have now been living on since the age of 21.

I grew up never getting to party, or have real teenage fun.
I have still never even gotten to attend a rock concert.
I was alone and had very few friends in high school.
A huge group of jocks made fun of me my entire time in high school.

I lived at home with my parents
Until December 1987when my parents
were finally able to afford to
pay to rent a small studio apartment for me here in town

I began to thrive there at my first apartment
Because I had learned very well
how to mask my autistic traits,
I was accepted by my family then
but even so, none of them ever came to visit me
when I lived there, except for my mom and grandma

I even tried to get help through CA Voc Rehab so I could work
But like everything else, that too failed
due to the little real support I had from my family.
Then my father had a stroke in July of 1989
And in 1991, I had to move to one of my sister’s cottages
where I again got thrown into being taunted and terrorized
so badly by two grown college aged girls next door to me
Then more neighbors in nearby auto shops and
other businesses ganged up
And began to bully and torment me also.

And it began affecting both my mental and physical health to where today
I now have lymphedema on both of my legs
A lymphedema leg lump the size of a basketball on my left inner thigh
and now I am in end stage stage five kidney disease

My family has abandoned me.
My eldest sister moved to Arizona in 2001 with her husband.
My other sister moved to Idaho in 1991 with her husband and family
followed my my youngest brother, in 1995 and his family,
then my parents in 1996
then my eldest brother and his wife and girl moved there in 2004.

With the exception of my mother and two of my sisters who do care
all others in my family ignore me
I am essentially just…a bother to them
They still don’t get it that I was born into that family
that I exist
and that I need help.
because I was never able to pull myself up in life
like they could do.

I am.
I exist.
I can think.
I can make my own informed decisions.
I’m a fucking human being.

I have rights.
I have the right to make choices.
I have a right to know what is happening before ppl just
go and do things that are going to affect my very life without asking me first.

I have the right
As a disabled adult
To live and to thrive
As I am
In my own community
To have full accessibility
To have full freedom.
I am still disabled.
I am 60 years old now.
I’m STILL a full-on PERSON, though!
Today, I am the ONLY one in my family who does not have their own home.

They all have jobs and homes.
I just have one of the two cottages where I live.
That are owned by my mother and a trust
Well, I need a safety net too when my mom passes away,
And she cannot see that.
And neither can the rest of my family
who already totally ignore me and just think
of me as a BOTHER.
A fucking BOTHER.

I’m not in a good place today mentally.

Because I was told when my mom passes away, that these two cottages are going to be sold….And the proceeds from this sale will be used to be shared amongst my five living siblings.

Where does this leave me? With only my Social Security to have to learn to survive on
Because until yesterday
I was under the assumption I would inherit these two cottages as my safety net for my future.
I will end up either homeless
Or forced into a nursing home.
Which my mother keeps telling me that is where I belong
In a nursing home
where I won’t be free at all.

This is why I play the Powerball lottery, so I CAN be free.
It is for me the ONLY way out I see for myself

Winning the Powerball jackpot
Will Free me of the fear that those in my family
who think of me as a bother,
will sell the two cottages where I live
and I will be forced into a nursing home when my mom dies.
Free of the more grave poverty I will be in also when she dies.

This is why I am for universal healthcare.
This is why I am for the freedom to live
and work in our communities
that the Olmstead Law has given us disabled people
And I am also for a basic universal monthly income in the amount of $2,000 a month,
so that I can still live a decent life after my mom is gone.

But I have learned the painful, hard, heartbreaking way
That even my own mother can forget just what my life has been like
and be cruel and take the only safety net I have away from me
That we cannot count on our biological families to have our backs

They were the ones who told me time and again
As I was growing up,
as I was a developing human being
My family all told me
Over and over and OVER again
That I was never enough
That would never date
That I would never have boyfriends
Never have friends
Never have a car
Never kiss
Never have sex
Never have a job
Never drive
Never learn to think for myself
They told me time and again
I was Less-Than
Broken
Wrong
Too weird
Too ODD
Too crazy
That I would never succeed at life
And yeah….they called me the R word
Called me a dog
Said I didn’t have brains in my head
That no one would ever like me
That I’d be spending my life running running running
Till I’d run out of places to run to.

The above that I am describing
Is sadly, the treatment that so many,
far too many children who happen to be born Autistic
get from their families
My family is no exception.

Yes, the two angels in my life,
my two sweet caregivers
did talk to my mom yesterday afternoon
and get her to listen and understand
and she said she would talk to my brother and sister
and tell them my plight
and that she would go and change her will
to make sure I am taken care of when she passes away
that I will have life tenancy in my home till I die.

But I am still terrified
of what my brothers and sisters may still
do to me when my mom passes away.

I hope to God
That if my eldest brother
who is now in Heaven
Because he passed away in May of 2018
That he sees, from Above,
what my family may be trying to do to me today
And he watches over me and prays for me
like I know he does
And prays that God will soften their hearts to finally know,
Get,
And understand my plight.
Otherwise, I will be homeless when my mom passes away
Or else put into a home.
And that will be the end of me.

Thank You, TC, You Are The Second Caregiver In One Year To Leave Me Without Breakfast & A Way To Get To Dialysis

Yes, folks, last month, a part time weekend caregiver who i was paying out of pocket because they did not do IHSS, decided to come to my house in one of her shitty moods, on the morning of Thursday July 9, 2020, and give me a morning from hell that caused me to not get my breakfast, or a way for me to get to dialysis.

Yes…she is the second caregiver in one year to leave me with nothing to eat, and no way to get to dialysis.

This happened a month ago, and now i have a new weekend and backup caregiver who I love….she is Connie’s daughter, and she like TC, takes me places, only she doesn’t come with the mean sarcastic snarkastic moods, and the constant complaining and whining the other weekend and backup caregiver came with. And she is IHSS certified, like Connie, my main caregiver.

That caregiver’s name who came in a bitchy mood, and who yelled at me in my own home, just like the brother sister caregiver did a year ago, was TC.

Here, one month later, is the post i wrote the morning i discovered she had blocked me on Facebook and Facebook Messenger, so that i could not write to her and thank her profusely for how she re-traumatized me that Thursday morning, for no fucking reason other than to just be a mean bitch. No shit. She just wanted to be a mean bitch.

She knew my story…because i told all to her….all about me being an autistic child who grew up misunderstood, yelled at, yelled down, scolded and discarded, and made to always feel so broken and defective. Then the string of horrific friendships, and then caregivers i had…she knew about it all. She said she was an empath who really cared….and that she would never ever do to me what those others did.

For you folks who don’t know me, i am Autistic. I was born Autistic..and i am going to die an Autistic. We Autistics are wired differently than you. That’s not bad or wrong. All i want is for people to understand and get this, get me, and be patient, and listen to me, and hear me and see me. And truly show up for me. It’s all i have ever wanted in life. To be free to be the ME that i am.

In 2012, my physical, emotional and mental health declined so much that i needed in home care…and that is when my problems began….but you can read my older blogs, to get the full story of all of that. I started this WordPress blog in March 2014.

Today, I am now in end stage kidney disease, and have been on in center hemo dialysis for two years.

And no, i’m not sorry i have an attitude as i write this. I am fed up with being treated like a third class citizen. I am still greatly hurt and pissed AF that yet another human being came into my life, and thought it was okay to come into my fucking home and fucking yell and scream at me and slam every thing under the sun in my kitchen right on my dialysis day, all because her home life wasn’t going how she liked it to be.

So…without further ado, below is the post, which i wrote on the morning of Saturday July 11, 2020 at 9:14 AM. And, for this blog, i have added to this post:

“Well, great…my now ex weekend and backup caregiver has me blocked.

So, okay, T, now you can enjoy sleeping until 3 or 4 everyday, but you can now also enjoy life without the money you made working as my carer. You will not be able to afford your nice SUV, with the nice XM radio in it, and you will miss our Sunday outings, with all of the delicious food you got from me, all the trips we took to the ocean and Santa Barbara, and my unique silly goofy company. You won’t be able to buy new clothes. Or afford your car payments. You will be miserable.

But you earned this by coming to my house LATE AF, with a shitty attitude AGAIN, and yelling at me on Thursday. Causing me to go hungry until i was able to get my neighbors to help me with food, AT 1:00 PM IN THE AFTERNOON—TWO HOURS AFTER I, A BORDERLINE TYPE 2 DIABETIC, EAT MY BREAKFAST—- and I MISSED ANOTHER ENTIRE DIALYSIS TREATMENT because you had to come to my house late, and in your hateful full on Princess Bitch Diva mode. Complete with the raised eyebrows above your eyeglasses, and the loud harsh sarcasm that did not have ANY mercy on me. Even when you saw and heard me sobbing and begging you to please stop yelling at me. You would not stop yelling. You kept it up, and kept at it, and kept at it.

You always seemed to be sick, or have this and that thing happen on my dialysis days; you complained about shopping for my groceries; you seemed to have a complaint about everything under the sun. You made me feel rushed so that i could never finish my dialysis treatments. Yes…i was always cutting my dialysis treatments short so i could get out before 6 PM, or i would risk cutting into my hours with you, because you did not like staying past 7:30. You made awful mouth noises that triggered me. Yes, that, you would sing to the music in such a way that i could not enjoy listening to it. You snarked at me when i asked you to stop shaking my wheelchair so i could get decent pictures at the ocean. You also would order gobs and gobs of food when we would go eat, then take half of it home….when you knew i could ill afford it, as i was already paying you out of pocket. And i was paying you for gas, and to stay extra at dialysis when i was having problems with J and M.

I could also mention the other things that were triggers for me, but that would just be me being a cruel person. I’ll just stick to the pertinent stuff.

You had NO fucking RIGHT to come into my home and yell at me and give me the ugly attitude you gave me Thursday. NO right. Then to slam my things around in my kitchen. Then refuse to leave when i kept asking you to leave. Guess what? The neighbors are witness to the whole scene that transpired between you and i that morning. So is Shari. Yes, you left evidence for Shari to also see. (Shari is my kidney center social worker.)

It is people like this who make life fucking hell for an autistic adult who needs care in order to function in life. I didn’t deserve your bullshit.

You are the reason why i have the deep pervasive trust and abandonment issues i have today.

You are why i now fear every new person that comes into my life, that they will do the same to me that you, and all the others, who don’t get, or want to get Autistic people, have done.

In the end, you were a complete fake, and your care and compassion for me was, sorry, fake as fuck.

I don’t usually do posts like this, but today, i am pissed AF, and i am fed the fuck UP with people like you thinking it is perfectly okay to take any and all of your own shittiness straight out on me because you think you can.

So, enjoy your new life, “Princess Diva”. It’s been real.”

I am still pissed and hurt. If you want to be a personal care provider, pro-tip: it isn’t okay to treat those you come alongside to care for like we are your personal punching bags and personal ATM machines. In fact, it’s a hard NO. If you don’t have patience, and are just in it for your own selfish gain, you do not need to be a caregiver….go find another line of work to do.

Kitchen Privileges

Rest in power, Mel!

Amelia Evelyn Voicy Baggs

Wandering through my kitchen at night
Is a freedom so breathtaking
It can’t be understood
Except by those who have been told
That if we behave
We may one day in the future
Get “kitchen privileges”
And are tied down
For being out of bed
After dark
Without permission
I can barely remember those days now
Not consciously
But every time I feel
A rush of joy and beauty
The taste of freedom
In being able to walk around my own house
Especially at night
Oh yes
Something inside me
Remembers

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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

This Needs To Be Said

I needed to put this into blog form because what i am writing about below, is a very real and frightening thing that our current nightmare in chief is actually proposing. He is basically proposing a new rule that will increase the frequency of Social Security evaluations for those of us who are disabled and already suffering at the hands of a very meager system that barely takes care of us as it is.
I have linked an article below which tells more about this proposed new law….a new law that cannot happen, as it will mean hundreds of thousands of us disabled folks will have NO way to survive…because this will cause many of us to lose our SSI and SSDI benefits.
Just the thought of this makes me sick to my stomach, and every other fight or flight emotional response imaginable.
I have been disabled and unable to work at gainful employment my entire adult life. I am now almost 60 years old, will turn 60 this coming May. On top of my mental disabilities and disability of autism, i now am physically disabled and have end stage kidney failure.
Losing my Social Security Survivor’s benefits will kill me.
The vast majority of disabled people receiving SSI and SSDI are not faking it, as i am not, and already, the re-evaluation process they put us through is more often than not an ordeal that is dehumanizing, cruel, and traumatic.

On top of that, they don’t allow us enough time to fill out the very detailed forms they give you, and eval appointments are made to where you cannot cancel them for ANY reason..not even for dialysis, like i have 3 times a week. And the forms themselves are huge books, literally.
This is like a nightmare come true for me. I have been on SSI, and then SSA for the past several decades, and whenever i have had to go through a re-evaluation, it sends me into an anxiety so high that i get literally sick over it…..and that is not because i have anything to hide, it is exactly because these re-evaluations are downright demeaning and terrifying. They often will send us to a psychiatrist, yes, a psychiatrist, who will yell at us and do all they can to antagonize us with the deliberate intent to cause a meltdown. The first time i saw a Social Security psychiatrist, he upset me so badly i ran out of his office screaming, shaking, and crying so hard i couldn’t hardly breathe. My grandmother and mother had to drive a whole mile to catch up to me, and then, even though he wrote saying i would never be able to work or function in the normal world, i lost my SSI for four months, and i went into a horrible depression where my hair fell out in huge clumps.
Me having to see two such psychiatrists in 1981, then again in 1990, traumatized me to the pint that ever since then, when i am met with a notice of evaluation from SSA, i literally go into a full on panic that i will get another mean psychiatrist, and lose my benefits again because of just this same type of Draconian program the then Reagan administration cooked up to weed out the “supposed fraud” in the system.

I had two more evaluations in 1999 and 2007, but luckily, this time i got a very nice lady to evaluate me, and i had friends go in with me who had my back.
But increasing the frequency of evaluations did not work then. And it will not work now.
When Reagan originally did this, this caused countless disabled people to literally become homeless and die. The same will happen if 45 is allowed to unleash this cruelty.
Thank you, Lydia X. Z. Brown for posting this and for being interviewed in this article.
Now you know why i hate 45.

Autism, Queerness, Masking & Meltdowns

Black NeuroQueer Punk

I always knew that something was different about me. I knew that I was different since I was about 5 years old. I just didn’t know how I was different.

It wasn’t until I was 6 when my mom told me that I was autistic—that explained why I often quoted from TV shows (which was caused by echolalia), didn’t understand verbal instruction, had difficulty communicating with others, and often had meltdowns.

However, the way my mom told me of my neurodivergence made it seem like being autistic was a bad thing, and at the time I was already punished a lot at school for having meltdowns.

Did I want these meltdowns to happen? No, I didn’t. I tried my hardest to calm down, but then the teachers would keep yelling at me while I was melting down, which only made things worse. As a result of these meltdowns, I would…

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