Tag Archives: Angry Autistic Speaking Out

Being Punished For The Right To Live

It’s getting harder and harder for me, a full-on neuroqueer, neurodivergent Autistic adult, to handle going to in center dialysis anymore because the blowups just keep happening.

Four hours a day tethered to a machine, 3 times every week, I do this just to keep on living.

Even after educating them about autism and meltdowns, what they are and aren’t, they still revert back to calling it “behavior” and want to treat me with traumatizing ABA-style “behaviorism” that simply Does. Not. And. Will. Not. work with autistic people.

One cannot pray or behaviorize our autism away because we are hardwired autistic from birth to our final breath.

Autism is a Developmental Disability. It cannot be fixed and cured.

It is always when my nurse and or tech are hectic-busy with other patients and I happen to need help right smack dab in the middle of it all, that tempers tend to flare on all sides.

No one is being bad, no one’s to blame, only that dialysis clinics are often far too hectic paced in nature, and oftentimes fuses just get short on all sides.

I had a meltdown so bad today because

1) Nurse W was there—right in plain sight of me today,

and

2) my room acoustics were not there for me to sing to and enjoy.

(I love to sing to the tune of the room acoustics and call them my “chestnuts” because of how they resonate in my ears and calm me down to hear them—all rooms have room tones, this is why people like singing in the shower)

They were flattened out due to the computer station being moved, changed them so I could not hear them anymore

—my nurse got impatient with me, and I melted down—

—-and because I melted down, they had to take me off the machine and send me home after just 30 minutes on the machine, because I was hitting my head and hitting my chest area.

This is why I keep writing to educate all of you who do not know, how much we are disabled, not by our autism itself, but by the ignorance and impatience that we still get from non-autistics.

So you all will know what to do and say to keep a meltdown from happening in the first place.

I don’t fault my nurse. I fault the fact that there needs to be four nurses per side instead of two, and even more techs than there are per patient. When a dialysis clinic is short-staffed,. even the best angel can lose their patience.

How about just letting dialysis patients all have private rooms with each of us having a dedicated nurse and tech, instead of just lumping us all in side by side by side??? Like some clinics in Europe do?

But still—I have educated this clinic till I am blue in the face, and I still encounter these blow ups. These same and very preventable blow-ups.

Nurse W was abusive. She was all levels of abusive and gaslighty. But she still works there, so I still have to see her from time to time.

But my current nurse does not seem to have even one mean bone in her body.

She happened to be dealing with a new patient today, and because I had flat room acoustics, my anxiety went sky high, and I kept pushing my call button. She finally lost her patience, and scolded me. This led to me blowing up right into a meltdown, complete with hitting myself—I was mainly shocked that my usually mild-mannered laid back nurse was scolding me, when I know she knows how pervasively deeply that affects me.

Below is the poem I wrote to my social worker and to my nurse and nephrologist:

I am sorry, I apologize

I was not feeling well enough today

To be able to remain calm and controlled

In my dialysis chair

In the past two weeks I have discovered

that my chestnut noises are more resonant

and full-sounding

when the computer station is set a certain way

straight, against the wall

I am sorry I couldn’t wait

I am sorry I kept pushing the call button

when you were all busy

I am sorry

That I cannot get along with you all like I would like to

I do happen to love and care about you all

I am not there to cause any of you hell

I am in hell

because this clinic is not made for autistics like me

I do those chestnut noises all during my treatment

to keep myself from having anxiety and then meltdowns

Please understand that

I was upset because all of you kept pushing the computer away

and when you do that

I lose my noises

I am sorry that is so important to me

I like and wish to God In Heaven

that all of you would all like me

and get me

that is all I ask

That you all will learn to get me, please

Please listen to me,

see me,

hear me

I have to have these treatments

so I can live

So that I do not die

Please stop scolding me when I have a meltdown

I cannot help those

I can promise you

They are not a thing I choose to do

If you scold and judge me during a meltdown

It will escalate it and make it go to me hitting myself

I am trying

to educate you on what autism IS so you know

Because of Today I really want to quit dialysis

Not because it’s self pity

but because I cannot always be what you expect me to be

I have bad days

I have days when I have zero spoons

I am tired of going there

because sometimes you are too busy to give me what I need

Tired of making you all angry at me

for what I cannot help

I just am so tired…………

My Latest Medical Nightmare, Because This Review May Get Deleted Altogether By My Local Hospital–Yet Another Example Of Medical Ableism

CW: Detailed discussion of medical ableism in an emergency room hospital setting.

The following is a review I wrote on my local hospital’s Facebook page last night which got hidden for some unknown reason, so I am posting this in my blog so it does not get lost.

Although they do happen to shine in most other departments, and even their ER can be an awesome experience, I do not recommend going to Marian Regional Medical Center Santa Maria’s ER due to the awesome-turned-horrific experience I endured last Thursday, 2/17 to have my chest catheter exchanged for dialysis because I was unable to get an appointment for the cath lab to do it. And it needed to be done ASAP so I could continue my dialysis without interruption.

I went without eating or drinking a full 18 hours so I could get this procedure done.

In the cath lab, I am well taken care of, listened to, and they always remember me. They treat me like the valid human being I am. They take the time to even warm up my blankets before giving them to me. And when I come out of surgery, they make sure I have delicious food to drink and either a Sprite or Coke with ice to go with my sandwich.

In the ER Thursday, I had an almost 4 hour long wait, was even triaged promptly, and when I finally got a room, room 6, everyone was super friendly and I was treated very well, that is, up until the last, after my procedure was done and I came back from my surgery. And they saw that my friend had left for a break.

The nurses I had this ER visit were Melissa, who was consistently sweet, and Makayla and her trainee, Caitlyn. There was also a tall young man, also sweet, and my ER Doctor was Dr. Harmon.

When my friend who I asked to accompany me, left to take a break after my cath surgery, your nurses, both Caitlyn and Makayla, got downright rude….refusing to answer my call button—and on my end I saw NO evidence they were looking for food and something I could drink after surgery. Not even a warm blanket.

They wanted me to stay another long two hours without food or drink to get antibiotics via IV—yet no one seemed concerned that I was suffering from acute thirst and hunger and that me, a Type-2 pre-diabetic, was experiencing low blood sugar.

They were very unconcerned about my comfort and well-being.

I kept pressing my call button because I really needed to eat and drink something. And I got ignored……and then after a long wait while they literally sat outside my door giggling and gossiping—they would finally come in.

But still no move to secure me even a damn cup of water.

My experience in the OR that afternoon went great, and the surgical team all even remembered me and had my alternative rock playing.

But afterwards? Makayla and Caitlyn treated me like I was a mere sack of potatoes.

Also, when I got out of surgery, Melissa was nowhere to be found, even though I kept requesting her.

Both me and my friend kept reminding them I had gone without ZERO anything to eat or drink since the night before.

But I was still beyond hungry and parched from thirst.

I am Autistic, which is a Disability that also comes with accommodations under the Americans With Disabilities Act due to sensory issues, triggers, plus CPTSD, and it cannot be treated with behaviorism, fixed and scolded away.

I made it very clear to every staff member I encountered there of this fact. I always do this for my self-protection. They all seemed to get it, and me. Until my friend took a small break.

The sudden ignoring, giggling at me and giving me dirty looks from right outside of my door., taking their time to answer my call button, their sudden snottiness and snippiness and ableistic remarks…..caused me to become afraid to stay in that room any longer.

When I was starting to become upset due to not eating and acute thirst, and suddenly being treated as Less-Than I was dismissed and told cruelly…Makayla’s exact words:

“I think you need to spend some time thinking really hard about growing up, really, you should try it. It’ll make life better for you, otherwise, you are going to just fail in life.”

Judging others when you don’t know them is all levels of wrong and unacceptable. Maybe I’m not the one who needs to grow up.

It was at this point, I was like “Fine! I’m done!” I asked to have them call my friend back in. I requested to sign an AMA so I could just get the hecky damn outta there.

I only got a bit over an hour of my two hour antibiotic regimen.

Caitlyn then proceeded to throw the barest minimum of discharge papers at me, plus my AMA, without a clipboard, I had to ask for a clipboard—all I got was just my post-op instructions, with no paper record of who my doctors were on this visit, and what meds I was given—like I always get when in the cath lab.

Makayla then went onto told my friend when she came back that she did go all over the hospital to try to find me a good ham sandwich, like the ones I got at my last cath lab visit that were so delicious—- because I cannot handle turkey—yet, I saw no evidence or indication that this was being done.

I am afraid to ever use your ER again. Next time, I will have my cell phone with me.

Thank you for the added trauma. you have added to my already traumatized life.

You need to once and for all fix your still pathetic ER. Or take “Humankindness” out of your name and motto.

Y’all can see my full review on Marian’s Yelp page, as I tried to re-edit the one I wrote to MMRC’s Facebook page, and FB glitched on me and wouldn’t let me re-do it at all.

The above post was hidden, however MRMC did comment, so here is my response to their comment:

I need to know why my post was hidden from your page, please.

In addition, I definitely plan to follow up on this because my ER experience gone *no good horribly bad*, only added to a 62 years long lifetime of real C-PTSD trauma for me that I am unfortunately still processing. Today.

I had to do the AMA because I was frightened to stay any longer after your nurses began being rude and neglectful. This caused me to not receive hour two of my two hour antibiotic regimen that was prescribed me post-surgery.

I have responded to your Messenger message. In addition, I did complete and submit my survey on my phone where it was considerably harder for me to write out the comments I wanted to write. So I kept referring to my Yelp post, as I found this above post to be hidden from your page.

The removal of my valid post silences my valid complaint as a human being who was gravely wronged by staff of your public medical facility. I was not even allowed to post this in a review on your page, so I had no choice but to to post this in your Community tab.

I am an Autistic / Disability Activist Writer / Blogger, so I do happen to write about ALL matters related to our rights and dignity as human beings who just want the same equal freedoms / accessibilities in life just like non-disabled folks enjoy.

That’s not a huge ask.

So many of us with hidden disabilities are treated this way, Othered, gaslit, and treated as Less Than, and by my speaking out, I am helping not just myself, but my fellow Disabled friends in the Autistic /Disability Community here on Facebook, Twitter, Instagram, etc.

You CAN fix this, Marian. It needs to be fixed.


How I felt In 2013, How I Feel Now About My Family

This post is derived from a post from November 2013 that came up in my Facebook memories this morning about the biological family I was borne into.

Because the holiday season always brings old family memories to the surface. Whether good or bad.

Some of us are blessed to have supportive accepting families.

Some of us…are not..so we create chosen families where we do fit in and belong. I now have a wonderful chosen family made up of my two current caregivers, and a handful of close Facebook friends.

And it is even worse when you were born fully neurodivergent instead of neurotypical. And you grow up feeling like you are an outsider, like you are never good enough, and you don’t fit in or belong anywhere. Because you’re thought of as too weird and too different. And yes, even the dreaded R word.

Othered. Less-than. It. Retarded. Please know why that word is a bad word and don’t use it anymore, even as slang, because it is a Disability slur. It is every bit as bad as the N word is to Black People.

I do want to say this: Part of my family do accept and support me—my mom, and two of my sisters: my second eldest one who lives with my mom, and my eldest one who lives in Arizona.

The one who live in AZ, I was very, very close to as a child, but then when I entered high school, she and I grew apart, and did not become close again until 1994 when, at the encouragement of my then psychologist I was seeing at the time, I wrote a long open letter to my whole family to let them know how much they have hurt me, and my eldest sister was one of the only ones who took my words to heart, and she was able to call me and fully acknowledge and deeply apologize for her part in all of my hurts from my time of growing up in the Fields Family.

The following is a post I wrote from November 2013 that came up in my Facebook memories this morning. It was written on Thanksgiving Day 2013, or rather what I now refer to as Indigenous People’s Day Of Mourning. Because even though I still celebrate it to give thanks for my many blessings, and to eat good food, and hang out with my chosen family, I now know the true, and sadly, very ugly history behind this holiday, and you should Google it too, just Google #WeLiveOnStolenLand, Indigenous Day Of Mourning, and what you need to know about what really happened on Thanksgiving Day.

But that is for another day for me to blog about. And I will.

My post, re-edited, from November 2013:

I am still seriously sorry I was born into my particular biological family….and wish I could just divorce most of them.

Today, trying to talk to my mom, she reaffirmed just how much my middle sister who has me blocked on Facebook still holds me responsible for her suffering all of her life. This sister thinks that I “act” the way I do on purpose, and seems to feel as if I am a burden to be ridiculed, shamed, shunned and ignored by my family.

They just seem to want me to go away silently.

I am not going to do that.

I still to this DAY, wish to God I could be adopted by a nice family who will help me by being here for me and helping me to finally get the help I need so I can work to salvage what is left of my health, life, and joy.

My middle sister never has liked me. But it’s totally on her. I did nothing to hurt her, except to be born the completely neurodivergent goofy silly Autistic me I have always been. Growing up, I was merely reacting always to the way she always beat me down with her words and her intolerance of me, all of my life.

She would never let me touch her hair, which was long reddish-copper-auburn and silky shiny. Shiny hair has always fascinated me to a level of excitement that only an Autistic person would understand. Shiny hair has always been one of my main go-to Autistic stims, and she hated me for it. Hated me for all of my goofyness. Hated me because of how I drew all the time, and how I was always drawing pictures of my imaginary friends. Imaginary friends I have always turned to to cope with a fully ableistic world that still to this day does not get autistic people.

All of my life I have felt I was the cause of my family’s stomach aches, headaches, and anything negative that happened to them. I was always told that too. My mother would often refer to me as her penance. Yes, there were often times when my own mom would turn against me. Which only added to my hurt and trauma.

I always felt like I had to apologize for just being me. My mom, whom I love dearly, and who, for the most part, IS in my corner, even was always very embarrassed by me. Because I have always had a loud voice, and have always been a very forward and outspoken person. Like, no filter outspoken.

My father? Was a monster who I both feared and hated, because he never accepted me. I was beaten, thrown in my room, screamed at, roared at, even for my likes, quirks, and opinions because they always differed from his narrow conservative intolerant ones.

Yes, he put a roof over our heads, fed and clothed us. But if he didn’t like you, he came down HARD on you with hellfire and brimstone and death. That is how I always felt around my father. Like I was always <thisclose> to death itself.

I was never allowed to talk at the dinner table, other than to say “Please pass the salt, please pass the potatoes” type of thing. I would get sent to my room, and / or spanked. Worse yet, he would pull hard on my ears, or my hair really hard to get me to mind him. He would also hit me on my face and head. If I didn’t do as he said, he would beat me and throw me in my room. I couldn’t even joke with him. Or show him a drawing at the dinner table. That would get me beaten and thrown into my bedroom with the door locked—from the outside.

He hated it when I would walk in front of the TV when his football and baseball games were on, even though the bathroom was in the path of the family TV.

In sixth grade, through the end of my Freshman year in high school, I went through a long period of time where I was quieter, and more afraid to talk and be myself because I was tired of being chastised and told how weird and different I was.

This was from 6th through 9th grade, then in 10th grade, I began running away and having explosive temper spells, and meltdowns. I would regularly break chairs and kick holes in doors and walls…..because I was never being heard and listened to.

It was unbearable frustration for me to be in a family with so many hierarchies, so many unwritten rules, and do’s and don’ts, that it caused a great volcano of anger in me. Anger that stemmed from all of the hurt and rejection of me as the person I was.

I ran away four times that year, because I longed to find a family who would see me as a human being and take me in. I felt in a new family, I would finally be loved, finally be accepted and that I would finally be popular at school too.

Also when I was a sophomore, right when school began for all of us kids, my little brother suddenly without explanation or reason, became a literal angry demon towards me and began glaring at me every night at the dinner table.

He would growl diabolically at me, and say things like “Huuuumphaaaaaa!” and call me names like “Pig-aaat!” And say, over and over again, that I was not a part of my own family.

His whole face would contort into such hate it frightened me to pieces. It got so bad, I began to eat my dinner every night in my room. I had to literally beg my mom to talk to him to make him stop this. And he wouldn’t. He was eleven. I was a Sophomore in high school.

I couldn’t even watch TV with the family at night anymore because of how he began treating me. I had to miss shows I loved, like the new “One Day At A Time” show that came out that year on CBS, that had Mackenzie Phillips and Valerie Bertinelli who starred as two teenagers of a single mom who lived in Indianapolis, Indiana.

At Christmas that year, I did participate with the family, but my eldest sister, the one who now lives in AZ, who I was NOT getting along with at the time, placed a huge box right in front of me, cutting me totally off from the others when we were all talking at our dinner table after dinner and the opening of our presents.

Deeply hurt, I went into my room, in huge heartbroken tears, and my middle sister who has mostly blamed me for all of her suffering, the one who today has me blocked on her Facebook, actually saw my eldest sister do this, noticed how I immediately got up from the table to go in my bedroom, and she came into my bedroom along with my mom, actually FULL of compassion for me, and promised me from then on, she was going to be kinder to me, and not do things to make me feel left out anymore.

I got along very well with my middle sister from then on, until 1991, when she moved to Idaho. From then on, she has slowly turned against me again. No, it didn’t happen all at once, but as I kept calling her to complain about the bullies next door, and across the street, it seemed to sour her on all things me again.

The majority of my Sophomore year of high school, I continued to have to spend most of my time in my bedroom after school, and still could not even watch TV with the family because of my little brother and how mean he got towards me, with the awful looks and awful remarks he would make.

To this day, I am fully estranged from him. Even though he did realize how mean he was being the summer after my Soph year, and he stopped for awhile, when he got married to his second wife in 1989, he began to shun me, and began telling my mom, his new wife and his two kids even, that he was afraid of me because of how I began to pick on him after he got mean to me. He says that I was mean to him.

It was my reaction to how he was suddenly treating me, because I literally couldn’t handle it. It was too much for me to bear being in the same room as him when he was in demon mode.

Remember, he was eleven when this happened, old enough, I felt, to know right from wrong, and he chose to literally cause me to have to self isolate for one whole year of high school and then again, the first semester of my Senior year, when he again went into demon mode on me. When I was a senior, he already knew what it did to me when he would go demon on me. He already knew how it literally sent me into a full mental tailspin. He was thirteen then, and he knew.

This time it wasn’t just me, but he also went full-on demon on my sweet angel of a friend Kathy who would have never hurt a fly,….and treated her mean too, when she came to stay with me to go to a family reunion with us.

In 1999 when I drove all by myself to visit my family who most of them had already moved to Idaho, my brother avoided me completely.

In 2005 when my mom was here visiting me from Idaho (she moved there too in 1996), she was talking to him on my kitchen phone one afternoon, and him just hearing me in the background, yes, I was having a meltdown that afternoon because of a thing my mom had done to my bedroom drawer–she had gone in and rearranged it without my consent, and him hearing me upset, he literally told my mom that if I moved to Idaho, he would have to stop having the family barbecues. Because, as he told my mom that afternoon, my being there would ruin the family BBQ’s for him. In other words, even in 2005, he still did not consider me to be a part of my own family.

The ONLY things I am guilty of with my baby brother, is becoming hypervigilant with him after he suddenly turned on me my Soph year of high school–meaning, yes, I did begin picking on him to make sure he would not be mean to me ever again, and when he would get mean behind my mom’s back then lie to my mom about it–well, that made it all the worse for me. Because my mom would believe him.

And, also, when we were kids, I loved my baby brother. He was my playmate, my best childhood friend. And yes, when I began going through puberty, I did start pushing him away…..because, well, puberty was happening, and I wanted to be like all the OLDER kids in my family, not him anymore. If only I could go back and undo me pushing my baby brother away, when all he wanted to do was play with his kid sister. Because he had been so used to me playing with him all the time….when we both were children.

So yes, I am guilty, of pushing him away, when he wanted to play, and then of picking on him after his demon mode began manifesting.

And to my baby brother, I am so, so sorry for pushing you away, when you still thought of me as your kid sister. Can you ever forgive me for my cruelty, for shutting you out of my life the way I did?

My sister, the one who has me blocked on her Facebook? Has reverted back to hating and blaming me for all of her suffering. To my middle sister, whatever it is I did to cause you so much agony…I still don’t know or understand to this day, but If I ever did do or say anything to hurt you in our times together as a family, I am also sorry and ask for your forgiveness.

I’m not writing this, nor writing my life story, to maliciously bad-mouth my family. It was NEVER my purpose in going online first on Tricia Kenney’s BlogTalk Radio Embrace Autism Show, and then in blogs, and more radio shows and YouTube videos. My reasons for telling my particular life story, have always been, and are, purely to educate you who read and listen, on how it is to be Autistic, and also so my bio family finally gets why I was the way I was, and will finally stop hating and shunning me for it!

I didn’t find out I’m Autistic until a week before I turned 39 years old, in May of 1999. Back then, I got labeled as having Asperger’s, and now I hate that term and reject it as the one who invented the term, Hans Asperger, was a Nazi who hated Disabled people.

I am also non-binary, and queer. I have always felt sexual attraction to all genders, not just cis hetero male.

Today, I also have end stage stage five kidney disease, and have been on in center hemo dialysis for three and a half years now.

As I have grown, I have had many more traumatic experiences with past caregivers, and past friends, who either could no longer handle being friends with me or just were total douchebags. Many of these experiences were very scary, and they have also contributed to the C-PTSD trauma that I walk with today. I have deep trust and abandonment issues today and am ultra sensitive and hypervigilant because of how so many still don’t get Autism or Autistic people.

So, this is why I write. Because my pain, this pain I carry, is so deep, pervasive, and never-ending.

I am not a monster. I am Autistic. I was born Autistic. I am going to die Autistic. There is no cure or fix for my Autism…and no one should try to cure and fix us.

Every holiday season I mourn for what I could have had with my biological family all those years and seasons—for what I still could have—if only we could sit down and have the hard conversations that it’s going to take, and not walk away, but face it all, once and for all, what was done, what was said, what we all felt, just get it out in the open.

I am willing. I don’t know how much time I have left on Mother Earth, and I want to make the effort to try to heal what happened between me and my middle sister and the two brothers I have left on Mother Earth. I now that my eldest brother who is now in Heaven now knows, because I know he comes to visit me now that he is on the other side. I think he has become one of my Guardian Angels.

I feel my late brother Ed’s presence quite often ever since his passing in May 2018, especially when I am in distress, when I’m sad, hurting and depressed and I just feel like I want to give up on everything.

It is because of him, my mom, my two sisters, my two caregivers, my one caregiver’s son, and the friends I have made through Facebook’s Autistic / Disability Community, that I have not yet given up.

Thank you, and Happy Holidays.

Full Documentation Of My Past 10 Months At Dialysis

#MedicalAbleism #MedicalAbuse #Gaslighting

Folks, medical ableism is very real, and this is what I have been having to endure at dialysis for over a year now…..and my clinic still won’t actually address this nurse who is still continuing to make my life a literal living waking hell.

I know this is a long read. But please read this and share this widely. People need to know what it is like to continually to be treated like I am a bad behavior when my autism is a disability, and how utterly isolating this is—to need dialysis to stay alive in a clinic that is not at all built for accessibility for autistic people.

#MedicalAbleism#UnseenUnheard

When, even after I have bent over backwards to educate my dialysis nurse about my autism and neurodivergence, my dialysis nurse still:

*One Saturday in December of 2020, repeatedly slammed shut the ISO room door on me when I kept melting down because she kept yelling at me and scolding me, and saying I needed tough love and ABA for my “disruptive behaviors”, then months later when this is again brought up, tells me: “Oh, but I didn’t slam your door! I wasn’t the one who slammed your door! It was the tech who did! You’re remembering things wrong!”

That is what gaslighting is, folks. And gaslighting is abuse.

*On that same Saturday, what started my Saturday afternoon long meltdowns, was when she was prepping me to get me put on the machine, I asked her if she had read my list of autistic resources, she said to me: “Oh, well, okay, I did read ‘some’ of it, but I’m not going to follow much of it, because I also saw these ‘other’ videos that tell me I am to treat you with tough love, and not give in to your ‘behavior’.”

When I tried to tell her why ABA is not the way to treat ANY autistic person, she replied with: “I am a professionally, medically- trained nurse, so I am going to go with what is ‘evidence-based’.”

THAT, exactly, was why I was having so many meltdowns that Saturday! The Saturday that started all of my problems with Nurse W! It threw me into a panic because she wanted to treat me with literal ABA therapy! Because she went right to the pro-ABA videos. That I had asked her not to watch. And believed those over actually autistic people who have BEEN through ABA therapy HELL.

This was how my family treated me when I was growing up, and none of them knew I was autistic, just that I had childhood schizophrenia, and a “perceptual handicap”….the terminology of the ’60’s.

I was treated this way all through school. By most police officers. Because yes, I have had to deal with alot of police. I was also treated this way by most people who tried to befriend me. And by a long string of abusive caregivers when my physical health began going downhill.

And it traumatized me, over and over again, and gave me lifelong deep-seated trust and abandonment issues, lifelong self esteem issues and lifelong Complex PTSD—on top of my autism.

*On that same Saturday in December of 2020, also yells at me because a kind tech turned the horrible bright lights off for me because they were literally hurting my eyes, and she, the nurse comes in and angrily snaps them right back on, yelling at me for having them turned off.

(I get that it is state law to have a VERY well-lit dialysis clinic,, but why keep yelling at me and scolding me like I’m a little child being punished, because the damn bright LED lights are literally HURTING MY EYES????)

*Calls me paranoid and says it is all in my head when I tell her
my heparin is not running in the machine
or I am having weird heart palpitations,
or my machine has been set to take off much more fluid than I KNOW my body can handle at one time.

*Every single fear, question and concern I have as a patient is dismissed as me just imagining things, it’s all in my head, I’m being paranoid, or “I’m the nurse, I know what I’m doing, so be quiet”—and my questions and concerns go unanswered.

*Turns the machine monitor away from me suddenly, when she knows that is also a trigger, to not be able to see my machine’s monitor, then yells at me like I’m an unwanted dog to “get out of here, go to the bathroom now!” in a scary mean yell voice, when I protest about my machine monitor being moved so I can no longer see what is going on.

*Won’t let me write what I want to write on my Against Medical Advice form and gets angry about it telling me:

“Okay, you need to stop! Oh…that’s it! I no longer trust you. Our whole friendship is going to be much different now. You’re not going to get any of the perks and goodies I’ve been giving you anymore, things are going to be much different now, you have lost all of my trust in you!”

That is a literal threat, folks.

When Nurse W presented me with the AMA to sign she had written “refusal to let closing nurse do her take-off” on it, so I crossed that out, and went to write a less accusatory and judgmental version.

That pissed Nurse W off, and she began saying the horrible things she said to me above.

*Still orders me in a loud strict yelling voice that she knows upsets me: “Put your mask on!” when I genuinely forget to put it on.

*Keeps labeling me as a refusal this, a refusal that, and then throws in non-compliant and high maintenance when I have asked her NUMEROUS TIMES to stop labeling me those things!

I am autistic,
I am wired differently

and this whole dialysis clinic is a daily sensory NIGHTMARE for me to have to sit in for four hours a day 3 times a week.

*Tells me, with glee, like she is threatening me with punishment, that she is a mandated reporter and has to report what I have just told her, to the authorities, when I tell her I feel like I want to die, instead of talking TO me COMPASSIONALTELY to find out why I am feeling like I want to die—or getting the social worker so I can talk to them about why I reach the point of such overwhelm that I want to die—and I am left feeling totally unheard and invalidated yet again by my nurse.

*When one day I say out of my desperation I wish I would just crash on the machine today, and she uses this to threaten me that she cannot dialyze me when I tell her things like that—-instead of talking TO me and finding out why I feel this way.

*Repeatedly calls me paranoid, repeatedly tells me I am imagining things, repeatedly orders me around in a stern voice like I am still in grade school—and does this—over and over and over again till I just want to scream.

*On yet another Saturday, Saturday 9/11, she threatens to call the police when I am having a meltdown for being punished yet again by her, when I am just trying to show her how to wrap the ends of my catheter because she is doing it literally all crooked like she knows how I hate it done.

*On that same Saturday, tells the nice tech to not ask my permission anymore to take my temp, when it has been written in my plan that all of them are to ask before they just do things to my body. Using my boundaries, my right to my bodily autonomy, and my very sensory needs as weapons to punish me when I am “acting out”—her words.

That, also is emotional blackmail, and is all levels of abuse.

On Saturday 9/11, she and I were both on edge. I came in already upset. Because my house had a million nats in it that morning.

What made her take me off of my machine a whole hour early that day? It was not that I was scaring one of her new patients with my meltdown——it was actually because I made the statement out of sheer frustration at being barked at by her to “Put your mask up!”—instead of her asking me gently——when she came into see why I was melting down in the first place. Which was because I could not get my backpack off of its tray table. My backpack was stuck. I could not get it off the tray table.

I made the statement: “I am done.” That was her MAIN cause to yank me off of my machine and totally disregard my sensory boundaries and face.

She keeps on treating me like I am a bad behavior instead of an autistic 61 year old struggling to cope with a clinic that is NOT AT ALL set UP for autistic folks.

It is literally as if she looks for reasons to yell at me, scold me, and shorten my treatments.

For four whole months—from December 2020 to April 2021—she would put me on late, and then I would have to leave early, often 1 to 2 hours early, because she would sit at her computer and wait until 1:30 to put me on.

She as well as two other techs all huddle together, and it is like they look for ways to antagonize me into a meltdown, just so that they can then punish me. And then laugh and gloat about it.

This happens mostly on Saturdays when management and social workers are not there, but has also happened on Tuesdays and Thursdays as well.

So. After reading all of this….please try to put yourself in my shoes.

Would these things not make you feel like you can no longer trust this woman, this nurse, to take care of your dialysis treatments?

Would these things not make you terrified to have this nurse take care of you anymore? Especially since you are away from everyone else in the isolation room so you can still do your vocal stims that help keep you calm enough to get through 4 hours of being literally tied to a dialysis machine, and, because you are in the ISO room, you don’t have to have your mask on when people aren’t in the room with you?

I would have put my mask up, but please, for the love of God, ask me nicely.

She can be nice…very, very nice and sweet, but then these trainwrecks happen and actually ruins all of the nice times with her.

But, tell me, please…..Would this not make you feel like you do not matter as a human being to this nurse???
Would this not make you terrified to ever be alone in the room ever again with this nurse???
Would this not make you feel vulnerable???
Would this not make you cringe when you now have to even hear this nurse’s voice????

Does all of this not go against the patients’ rights, of which your clinic gave me a copy of when I first signed up for dialysis treatments at this clinic?

I am Autistic.
I was born Autistic.
It IS a whole different way of being,
processing,
and experiencing life
for those of us who are Autistic.
And we will be Autistic till the day we die. You cannot yell, scold, fix, problem solve and cure our autism.

When you yell, it literally is like we are DYING. Your yelling tells us we are wrong and broken. Shameful. And Less Than.

Autism is a disability. A disability that is protected under the ADA.

Ask yourself again, would YOU want this nurse to continue to work on you if YOU were autistic, and she kept treating you like you were a fucking criminal instead of the Autistic adult human being you are????

She may be a new nurse.
She may be human.
She may have a problem with anxiety when under stress.

But guess what? So am I….
Still a new patient
I am human.
I have a problem with anxiety when I am under stress.

I don’t like having meltdowns. I know it frightens the other patients. I try my best to handle having to be strapped to a machine in those uncomfortable chairs for 4 hours.

I try my best to always be considerate and kind to everyone there.

I bend over backwards to meet you all halfway there at this clinic.

Because I DO care.
I DO have compassion.
And great empathy for others besides just me.

I GET it that that one Saturday was 9/11. The 20th anniversary of a horrific event that I also saw happen before my eyes on live TV. Many of you lost loved ones and friends on that awful day.

God, I GET that so hard!!!!!!!!!!

But that was still no reason for Nurse W to yell at me, and scold me, and then yank me away from my lifesaving dialysis—-just for me saying “I am done.”???? Her words, again.

Tell me why, please, should there be any valid reason to repeatedly keep punishing me for what I cannot help as an autistic who has to undergo this dialysis just to live. In a building that is not set up for autistic people?

Why does this give nurses like W the right to continue to treat me like I’m a bad criminal, instead of an autistic adult who is more often than not, in a consistent state of sensory overwhelm when I have to go there to do my lifesaving dialysis.

Especially after I have educated this nurse over and over and over and over and OVER again???

Tell me. Please. I am waiting and I am listening.

A post script: They have, temporarily given me the head nurses as my nurses, and Nurse W was gone last week, but yesterday she was back on, even though she didn’t take care of me, one of the head nurses did—-even so, I still had to se and hear Nurse w’s voice, and it killed me to be in that room still having to see and hear her.

I am still waiting in suspense as to how this is going to be handled.

And another post script:

I am done with my piece of crap dialysis center.

They are moving me to Mondays Wednesdays and Fridays in the mornings beginning the week of Oct. 6th. Exact time to still be worked out, but hopefully a 9:30 AM arrival time, and a 9:45 AM put on time…this way I still have my afternoons to get all of my appointments, errands, grocery shopping, banking, showers, etc., done.

I will still be in the ISO room. But with a different nurse, and different techs. Meaning I have to be up earlier, there earlier, nd no more of me having to be there on Saturdays in the ISO room with Nurse Whitney…at Nurse W’s mercy.

It appears nothing is being done to address Nurse W’s abusive treatment of me.

I have warned them that if Nurse W can treat me the way she did, she will do this to the person who goes in the ISO room in my place.

Nurse W seems to love being the boss of me, well, now she got her damn way.

My Autistic Dialysis Hell, Part Two, And A Monday Afternoon Update

Saturday morning started with me battling multiple nats in my living room and kitchen. And my bathroom too. The nats have been all over for days now.I was already on sensory edge about the nats flying all over my house yesterday.

I went to dialysis on edge.

I had meltdowns at dialysis because I had yet another different tech in my pod. And my nurse Whitney was also on edge. When Nurse Whitney is in a bad mood or stressed out, I always pay. Because I have multiple vocal stims, I do my dialysis in the isolation room, and Nurse Whitney feels she can get away with mistreating me because she feels no one will hear. Because I am in the ISO room.

When I am already high anxiety, it has a rippling effect.

At dialysis my lines were unruly, and had to be adjusted alot. I finally had them lay them across my lower abdomen, because to keep them clamped to my left shoulder, made the white line cap for lab draws cut into my shoulder, and it was painful.

Nurse Whitney was impatient with me about having to readjust my lines so I could be comfortable in my dialysis chair.

Dialysis was me having alot more meltdowns.

I have begged them to assign another nurse to my side of Side B, one who would have patience and understanding and who would work with me and really listen to, see, and hear me.

Instead, I am stuck having to work with a nurse who lets me know consistently that she has problems with me because of all of my ISMS. I have been having problems with Nurse Whitney since December 2020.Towards the end of my treatment, with one hour and five minutes to go of treatment, I went to get my backpack from the tray table on the left side of my chair so I could call my caregiver to discuss my dinner meal plans, and the strap stuck on the side of the tray table. Before I had a chance to think to just press my call button for help, I began yelling in my frustration, plus profanity along with my yelling.

When having meltdowns, I cannot control what comes out of my mouth.

Please. Read that again.

What ensued, instead of Nurse Whitney coming to help me with my bag, was Nurse Whitney becoming impatient and yanking me off of my dialysis machine ONE FULL HOUR before my finish time. As a result, I got 2 hours and 59 minutes exactly of my prescribed four hour treatment, and when I fought to be kept on the machine, and she kept touching me without my permission, HER response was to threaten to call the police on me. Just like I was a criminal.

She kept putting her hands and arms close to my face as well, which she is WELL AWARE is a huge sensory trigger. Yesterday, she didn’t care. She even told the kind tech who came and asked me if she could take my temperature, to not bother to ask my permission for that, that she didn’t have to ask my permission, to just go ahead and do it…take my temp.

For the love of God, neurrotypicals, I need you to understand and GET that we as autistics are wired totally different than you. Our sensory needs are important for you to accommodate, because if you don’t, we are triggered into literal painful agony. Our sensory systems are wired much differently than yours are.

I have bent over backwards to try and educate you all, both through Facebook, and at my dialysis clinic for the past 3 years I have been going there to get dialysis, and still some do not get it that autism is a disability because of sensory needs not being taken seriously.

I need to get my story out there, friends. This is already ruining my weekend, because, and listen, really listen to when I say this, one does not just get over being manhandled and then threatened with the police who can escalate things even more to the point where we run the risk of being injured or even killed by the officers who come to supposedly diffuse my meltdown.

Calling police on us when we are IN DISTRESS, is the last thing one should ever do. There are ways to de-escalate meltdowns that do not and should never involve restraint, scolding, seclusion, any kind of threat or punishment.

I feel so utterly alone today. Like this is only going to get worse, until someone takes seriously that my nurse is abusive, and she needs to actually be fired.

In addition, she forgot to give me my hepogen and hectoral, and my heparin lock for both the veinous and arterial sides of my catheter at the end, and when I went to the bathroom during my treatment, failed to put the machine in bypass mode.

This is not the first time I have caught Nurse Whitney making mistakes with my care. I once caught her setting my machine to pull a full two kilos of fluid, knowing full well this would land me half dead in the hospital. One reason why I request to always have my machine facing me is, so I can watch everything, to make sure it is all correct.

My story of yesterday is all up and down my Timeline. It is all set to public and is very shareable.

I am asking all of you to please share this and put my story in your blogs if you have a blog. #MedicalAbleism is real, and it is happening to me, just trying to stay alive because some do happen to love and care about me…..my mom, my two sisters, Connie, Natalie, and my Facebook autistic disabled community friends.

Below is a post I made to an advocacy org that apparently is no longer in service…..so here it is, here:

” I am a 61 year old autistic adult who has been on in center hemo dialysis since June 2018, and a DaVita patient since July 5, 2018.

Although I have spent the past 3 years breaking my back to educate all staff and nurses there, plus the facility admins, I have been having serious issues for the past two years of my 3 years there, mainly due to impatient insensitive nurses, including the one that has been assigned to my pod for the past year.

For the past year, they have had me assigned to a nurse who for 11 of these months beginning in December 2020, she will sometimes be very curt with me, forget my sensory needs, and cause me to have meltdowns.

She has threatened to withhold nice treatment, her “friendship”, and in Dec., she made it her mission to keep shutting my door on me so that no one could hear my machine if it alarmed. If I have concerns or questions, it is met with “I am your nurse, I know what I’m doing!” and “You just don’t concern yourself” and gaslighting “I did put the machine in bypass mode” or “I did do that, didn’t you see?”

My story is on my Facebook. My local ESRD has been of precious little help.

You can contact me via my email. I would give you my contact phone number, but do not know if that is allowed via email.

Thank you, and I fervently hope you will help me. “


I probably won’t be alive by Halloween of this year, if my kidney center has its way in shoving me out the door. I may be dead within weeks. I don’t trust corporate healthcare. Or my kidney center.

I Have A Right To Exist
And Be Seen And Heard
As My Full On Autistic Self
And I Have A Right
To
My Lifesaving
Kidney Dialysis
All Four Hours of It.
Stop Taking That Away From Me
For Meltdowns
That Are Being Caused
By
Your
DELIBERATE
Inability And Refusal
To See, Hear, Embrace,
And Respect Me
As I Am.~~~Melissa Fields

And an update from today, Monday, September 13, 2021:

Update on my dialysis center / nurse issues:

I have a 12 PM noon meeting between me, my caregiver Connie, my kidney center social worker, the kidney center facility admin, and my nephrologist, tomorrow before dialysis.

I pinned my social worker down when I talked to her just now as to if they are planning to involuntarily discharge me?

Thankfully the answer on that score, is NO.

Social worker says they are doing this meeting so we can all as a team, come up with a plan so that both staff and I can feel safe during my time there getting treatment., moving forward.

I was also adamant that I can no longer work with Nurse Whitney. I’ve worked with Nurse W for a year now, and still my issues with her keep happening because she basically does not care.

Whitney and a few others seem to believe fully in the adage that “When the cat’s away, the mice will play.”

Stay tuned, everyone.

My Dialysis Hell Continues

I had several meltdowns today at dialysis.

My lines that transport my blood to and from the machine were unruly, and kept bothering me. I had to have them routed differently.

Nurse Whitney, the nurse who is still assigned to me, lost her cool, saying that this was putting her behind to accommodate me on where to have my lines placed.

With one hour and 5 minutes left to go on my treatment, I tried to get my backpack off the chair’s tray table so I could message my caregiver to see what we were going to do for dinner tonight.

The long strap caught on the tray table, and so meltdown #2 happened. A lady, a patient on my side began to yell at me repeatedly to shut up.

It only escalated my meltdown to where I was yelling, cussing, and saying “I am done!” over and over.

Nurse Whitney marched in and proceeded to terminate my treatment against my will, stating that I was a safety risk.

I was unable to calm down. Next thing I know, Whitney warned me that she would have to call the cops if I did not stop, that my “temperament” was causing the entire staff and patients to feel unsafe.

I had no choice but to leave, and have my caregiver pick me up earlier than normal. I only got 2 hours and 59 minutes of my prescribed 4 hour treatment today as a result of what I know In my heart of hearts could have been handled much differently, by Nurse WHITNEY.

I keep having these kinds of problems with Whitney….yet they keep assigning her as my nurse….even though she keeps dressing my catheter all crooked, and with crinkles and creases, and gaps in the dressing, and she, along with Tech named BELEN, are always the ones that causes my meltdowns there. It IS intentional.

I have been having problem after problem like this since August 2019 with impatient ableistic nurses and techs who keep moving my machine, touching me too near my face, and ordering me like I’m an unwanted animal.

I am unable to adapt to that hellhole anymore than I am able to. I literally cannot take having to go there another day.

This is where I am at tonight.

I need a miracle or I am going to BREAK INTO A MILLION LITERAL PIECES.

I need my community’s help, friends.

In addition, I wrote a review of my kidney center on Yelp. Here it is below, copied and pasted.

—-

I wish I could give this place a zero, but the option was 1, so here it is.

I’m an autistic adult, yes, hello, there are hundreds of thousands (Actually, more than a million) of us autistic neurodivergent folks out there, and the past two of my three years of me having to get a vital lifesaving treatment that I am entitled to so I can stay alive for those who love me, at this center, have been sheer sensory hell….with only a small bit of accommodation for my sensory needs because they keep forcing me to deal with techs and a nurse who all have very little tolerance and patience for the challenges I experience as an autistic person.

I love my social worker, as well as many of the staff there. However, even though I have spent my 3 years educating them, some of the staff and the current nurse who is assigned to me, keep treating me as if the meltdowns—that some of them cause—is a behavior that I can control.

They do not get it—and don’t want to get it—that they continue to keep doing what I have told them thousands of times triggers me and then when I meltdown, I am yelled at, scolded, then thrown off of my machine early before the end of my 4 hour prescribed time, sent home, and today, my nurse even threatened to call the police on me, when I fought to finish my treatment.

After yet another meltdown that she and another staff member caused.

Today, I was upset, first about my lines being too uncomfortable for me, and then again because when I went to get my backpack to get my phone out to make a phone call, the large strap on it caught on the side table of my chair, and in frustration, I yelled. Because I yelled, I got sent home one full hour early. By threat and force.

Certain protocols have already been put in place at this center to mitigate my sensory hell, even so, my nurse still seems to enjoy causing me to get upset, so she can “make an example” out of me.

I hope Fresenius is reading this, because Santa Maria needs more kidney center choice, and I also hope Davita headquarters is also reading this, because this is cruel treatment of a person who has bent over backwards to educate them on my triggers, meltdowns, and how to handle me when I am in distress. So this kind of incident does not happen.

As per the Americans With Disabilities Act.

In closing, Autism is not a disease or behavior. It is a neurotype, and a disability. Me and the hundreds of thousand other autistic need for the medical community to finally GET this and stop treating us like we are animals and like the human beings we are.

#MedicalAbleism is real. Google it.

A Something—A Huge Something That Needs To Be Said

Putting this here, because, well, Facebook’s new platform now has this super uber angry-making and frustrating to NO end habit of eating posts we write if they are long posts.

I need to say a huge something. A HUGE something. Because you all need to know this.

And yeah, this does keep me awake at night. Lots of nights, not just because of my own situation, but the situation of many of my friends, and all who are marginalized.

Our economy is sadly designed so that those who are upper middle class, wealthy and filthy rich have it easy peasy, and can afford everything that comes their way, including staple expenses we all pay for such as groceries, medicines, vitamins, utilities, internet, healthcare, etc., but the rest of us, who are middle class, low income, poor, disabled, elderly, etc., are now being literally gouged—-each and every single month. Gouged to where many are homeless or incarcerated. Gouged to where many turn to self medication, drugs, and crime to cope and survive.

Our cruel pull-yourself-up-by-your-bootstraps Capitalist system is designed to literally leave out those who are Black, Brown, Indigenous, Disabled, Elderly, LGBTQIA+, Immigrant, and etc. Add Americanized Trumpified Evangelical Christianity to this mix, and yeah….it makes for a toxic systemic living hell that literally leaves huge groups of us behind. Woefully and literally behind.

The lower income you are, the harder it gets just to stay afloat each month. Many of us turn to credit cards to pay for some of our monthly expenses because what we get in income each month is not enough to actually cover all of our monthly expenses.

And with the pandemic, prices at the grocery stores and drugstores have risen sharply. Prices all around have risen sharply. The wealthy and rich can afford these higher prices no problem, but the rest of us…this is eating us alive. It’s eating ME alive.

If you are disabled and cannot work—like me—your Social Security and/or SSI is your only source of income.

Many of us also do not have a supportive family. I do have my mom and two of my sisters, plus my two caregivers who help me all they can, but they too are struggling. And the rest of my family ignore me. They. Totally. Ignore. Me. And see me as a bad person because of my Autism, my meltdowns and my struggles.

Each month I have had to rely on my credit cards to augment what I get from Social Security. They pay for my skin creams that I need, my vitamins that I take to still maintain a semblance of (somewhat) healthy, plus books, and recreational outings and stuff I also need just for my sanity, because let’s face it, we ALL need to have outlets to stem the day to day mundane in our lives—and we need those things whether we are rich or poor, sorry, but that’s the truth. Human beings thrive if we have lives that can be actually fun too. Not just us existing.

And to add to my mix, I now have end stage stage five kidney disease, and have been on dialysis fort three years now. I am also Autistic, by the way, and have lifelong Complex-PTSD trauma from just how most have misunderstood my Autism and have treated me as lazy and just a walking bad behavior instead of a person with a different and disabling neurotype, because of all of my sensory triggers I have had my whole life. Because of all of my stims. Because I am still utterly FASCINATED by things like shiny hair. I STILL love seeing how the light plays in shiny hair, and I still call them AQUA SHINES. Just like I did in fifth grade.

It has ben an achingly LONELY LIFE of me having very few friends and allies because of all who misunderstand and villainize Autistic people as broken and in need of fixing and curing. We Autistics are not monsters. Get to know us and you will see that. Get to sincerely KNOW us and I promise you, you will see that.

Contrary to popular belief, not all or even a lot of poor, elderly disabled and homeless people are trynna game the system.

Most of our homeless and poor are those who have fallen through the cracks due to a woefully inadequate and antiquated mental health care system,
a woefully inadequate and antiquated physical healthcare system,
a woefully inadequate and antiquated judicial system that seeks to punish rather than heal people,
systemic racism, homophobia, transphobia, xenophobia, sexism, anti-Semitism, anti-Muslim hate, and every other kind of hatred and bigotry….
and an immigration system that also discriminates and punishes rather than seeks positive outcomes for those who are, in the vast majority of cases, fleeing their homelands to escape the poverty, hunger, and violence they are sadly encountering in the places they used to call their home, but isn’t anymore.

And our neglected inner cities and impoverished rural areas.

It is maybe 1% who are “just lazy and who ‘game’—abuse—the system.” Read that again. Most people are sincerely struggling—and more and more of us are struggling beyond what we can bear now.

When one has to work 2 to 3 or even 4 jobs just to pay rent, that ain’t okay.

When even our social safety net is designed to keep us trapped in fear and poverty, a never-ending cycle of fear and poverty, that is not okay.

Yes, Joe Biden, along with Bernie Sanders, AOC, and many other progressives in Congress are trying to re-do and expand Social Security, Medicare, and Medicaid—and it is about freaking time. They are also trying to make these programs less hard for us to get, and less hard to be able to keep our benefits.

But so much more needs to be done to eradicate the poverty and suffering of marginalized folks. It can only be done if minds and hearts are opened, and we ALL rethink our outdated, antiquated, negative, bigoted, and racist ideas.

And let us start by dismantling those systems that got us all here in the first place—really and truly dismantling those oppressive harmful systems. Every. Single. One. Of. Those. Systems. And building a whole new system that prioritizes the full equality and dignity of humankind and our earth over corporations and rich people.

Thanks for listening.

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.

How. Dare. You.

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

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

My Backstory First

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

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

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

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

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

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

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

Like i was not supposed to exist.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And so here is my letter to them.

Dear Brother and Sister,

How dare you?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You refused to understand my need for accomodations.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You never got the Cadillac back.

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

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

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

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

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

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

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

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

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

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

How dare you.

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

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

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

Sincerely,

Melissa Fields

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

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

Things The Brother Broke 

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

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

*One large office-sized stapler

*One purple electronic rechargeable Swifferjet mop

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

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

Things The Brother AND Sister Both Took/Stole/Misplaced

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

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

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

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

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

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

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

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

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

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

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

*A 17″ HP computer monitor

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

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

*Most of my multi-colored Sharpies

*All of my highlighter pens

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

*All of my multi-colored file folders

*Two pairs of my good scissors

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

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

*Four tubes of Remedy Olovamine Anti-Fungal Cream

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

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

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

*Other candy from my candy dish in living room

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

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

*My red Solo cups

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

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

*several flourescent curly cue light bulbs,

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

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

*electronic wipes

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

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

*8 large bath towels

*10 washcloths

*two kitchen towels

*My birth certificate

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

*One long wand Swiffer duster

*Two brooms

*Two dustpans

*One 12 pack of soft white crew socks

*One 60-ounce blue Correlle or Pyrex mixing bowl

*Two white plastic coffee mugs

*3 small steak knives

*Several carving and cutting knives

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

*My measuring spoons are also all gone

*Two kettles/pots

*Two cooking skillets

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

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

*Four dark blue money pouches

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

*3 packs of large manila envelopes

*2 packs of medium sized manila envelopes

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

*2 boxes of small Mead white envelopes

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

*10 large white poster boards

Things They Took That They Did Return

*A small crystal cross

*My desk drawers

*My artwork and art portfolio

*Three of my four heavy duty beige folding chairs

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

*My green Living Bible

*Some of my colored file folders

*Some of my Sharpies

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

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

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

Every single thing that they took and stole from me.

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

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

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

When i was asking them to accomodate my disabilities.

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

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

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

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

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

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

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

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

This is not okay.

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

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

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