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 1987

when 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.

My Thoughts On The Current State Of Country

The following are my thoughts, written as Facebook posts, on the current state of our country, as we head towards a dark period of God knows what.

With this dark cloud of uncertainty hanging over my head that the new government could now actually get away with gutting the benefits for elderly and disabled people, me included, i am finding it increasingly harder to enjoy or even handle everyday life.

I cannot sleep. I am getting more frequent sick stomach spells. I was so afraid this would happen.

Why do the republicans seem to hate us so much?

There has to be a way, please, to keep trump and the republicans from hurting us like this.

I do not have the spoons to get on the phone and call my state senators. It is hard for me to talk on the phone. Very hard. Especially if people talk too fast and are rude and impatient with me.

God, if you are still on the throne, please don’t let them take our only safety net we have away. I don’t want to be forced to live either on the streets or in a nursing home where i could get abused again. I love my IHSS and the in home caregiver i have. I love being able to live in my own home. Don’t i have that right? Do they not realize we are human beings??? That they are hurting real human beings????

I have just begun to fight. I can’t make phone calls, but as i have the spoons, i can write and post on the pages of our senators and representatives, and get the message out there that WE ARE HERE, we are real human beings, and we have a voice—-and it is LOUD!!!

They will NOT take our safety net away!!!!

I am for a single payer Medicare for all, if it includes the ability for Disabled people to be able to have in home support services, like we now do on Medicaid.

They can call the new program Medicaid if they want—-either way, it should be all inclusive to cover, all medical care, vision care, dental care, in home support services, prescriptions, all of it. They can call it anything they want, just make it a single payer healthcare for all.

Note to all in our House Of Congress:

If you run for the Office of congress to work for us, this means LISTENING to us, NOT SHUTTING US OUT AND SHUTTING AND LOCKING YOUR DOOR TO US!!!!

I sincerely feel our country needs a whole new system of governance. The current two-party system and capitalism has failed us, miserably.

I also feel our country should be divided into provinces, like Canada is.

Rich people should be required to pay the most taxes, because they can afford it. This will provide money for infrastructure, education, college education, healthcare for all, decent, affordable housing for all, and a secure and expanded living safety net for all of those who are elderly, disabled, and veterans who fought for our country in wars that should not ever have been.