Author Archives: melissaautisticfields

About melissaautisticfields

Hi, i am a middle-aged autistic lady who lives on the Central Coast of CA. I love to draw, write, read, and also love all kinds of rock and alternative music. I love to travel, but haven't gotten to in a long time..would love to be able to see NYC, the East Coast and the Great Lakes states someday. I am writing a book about my life as an autistic, and i hope to get it published. I am not perfect, but i do have a deep faith and feel that without God, i am nothing.

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.

Why Social Skills Training Does Not Help Autistic People

For the love of God, all of this!!

If you really want to understand autistic people, meet us where we are at. Stop tryna change us. Listen to us. Believe our stories and lived experiences.

Being our neurodivergent selves Is. Perfectly. Okay.

We aren’t broken.

Tryna change who we are will just give us unneeded depression, trauma, and lead to us wanting to just give up.

Autistic Science Person

To explain why most general social skills training taught to autistic people is not helpful, I will show a simple example and give a critique. I will be referring this worksheet by Social Thinking which is public.

If after you read this post, you want more information about what you can do to help and understand autistic people, here are some ways to help.

An Example and Critique

This worksheet created by Social Thinking is titled “Social Behavior Mapping.”

There are two conditions in the worksheet. The top condition is titled Expected and the bottom row is Unexpected. Each condition has the same 4 columns listed from left to right:

1. Behavior(s) that are expected given the situation and people
2. How others might feel about the behavior(s)
3. How others act or react based on how they feel about the behavior(s)
4. How one might think or feel based…

View original post 861 more words

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.

An Update On Dialysis

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

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

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

I will keep y’all posted.

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

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

Hello everyone. Plus, it is illegal AF.

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

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

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

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

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

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

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

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

Dialysis, Part Two

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

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

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

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

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

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

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

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

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

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

My Autistic Dialysis Hell

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And I was spot-on.

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

RUH-ROH!!

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

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

Already, my head was spinning.

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

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

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

I’m a godsdammed human being with feelings.

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

The dam broke.

My response was to finally yell at him in frustration:

“Aren’t you going to say HI to me???”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Be seen, not heard.

Seen, not heard.

Over and over again.

Seen, not heard.

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

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

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

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

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