Tag Archives: Autistic Adult

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.

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.

I Don’t Want To Be Alone Anymore

From two Facebook posts i made just now……

Post One

I had a VERY weird dream while i slept. it was a nightmare, in fact.

I dreamed that i was alone here. Connie had gone home. It was night, but strangely still light outside, and it was overcast, misty, and wet outside. In fact, the outside had the blue tint of dusk settling in when it’s cloudy and overcast.

Suddenly i saw a group of cars crowd outside where the appliance shop used to be, and all over the street. Then i heard a gunshot, followed by someone yelling in pain. Then another gunshot, followed by another yell from that person, who had a male voice.

I got scared, frightened, but couldn’t move out of my chair where i was sleeping. I was literally paralyzed in fear.

I finally managed to get out of my chair and use my computer chair to block my view so no one from outside could see me, and i tried my best to call 911. I got a male presenting dispatcher, but could not hear them.

Suddenly, one of the bad men came into my carport and began to banshee yell and kick the outer security door on the door to my middle room. He kept kicking the door and yelling. Then more of them came right into my yard.

I tried again to get 911 on the phone and couldn’t even get my words out.

I awoke from this dream at 11:32 PM, to find that my small alarm clock was blinking. Which meant i must of had a power glitch while i was asleep. My clock on my answering machine was fine, and my DR showed no interruptions in the recording of the two newscasts i record every night to watch when i wake from my after dinner sleeptime.

I have come to the conclusion that i don’t want to live alone anymore.

ESPECIALLY NOT HERE in this neighborhood where i do have neighbors who do NOT have my back at all….but neighbors who are mostly all either the type to not get involved, or they are the mean ones who torment and bully me.

I at least want to live where i have nice neighbors surrounding me who are the kind who will adapt me and actually look out for me, while i still live in my own house. Then it won’t be so bad living in my own house by myself.

I am ALL alone tonight, and yes, i am scared right now.

Post Two

I am really having a bad night tonight. My TV reception began cutting out, searching for satellite signal was coming on, TV screen pixelating and freezing,—-and it isn’t even stormy here—-AT ALL!!!!

It’s fine now, not doing it anymore—– but yeah—after the nightmare i just had, and discovering that my power had glitched while i was sleeping, well, everything is spooking me right now and yes, i AM all alone here, isolated with no one nearby in this neighborhood to call if i have problems—yes, i could call Connie if i have real problems, but i don’t want to ruin her sleep just because tonight i happen to be scared and need someone here to be with me because i am just scared.

I just don’t like how i am feeling tonight.

I want to cry.

I really do want to move where i have nice neighbors around me day and night who will care and look out for me. I don’t want to live in this aluminum hot rod and mean bully alley anymore.

An Open Letter To The US House Of Representatives

Sunday, December 3, 2017

Dear US House and Senate both,

Re: Tax Reform Bill

My name is Melissa Fields. I live in Santa Maria CA. This is my story.

I am 57 years old, and #Disabled. I am Autistic and also physically disabled due to debilitating hip, back, and knee pain, plus chronic lymhedema on both of my legs. In addition, I have a large lymphedema lump on the inside of my left thigh that is literally larger than the size of a basketball. It is every bit as firm as a basketball too. This greatly limits my mobility.

I am disabled by many Autistic sensory issues, to certain types of noise, touching certain things/foods, harsh lighting, certain music, and being around people when they are rude and unfriendly. I am also disabled because I can barely walk and badly need more than just my quad cane and walker to get around. I also have issues with executive functioning.

I have never been able to work at a job my entire life because my above disabilities have prevented me from being able to secure and keep a job.

I have lived on SSI, then Social Security Survivor’s benefits my entire adult life. In addition, I also depend on both Medicare and Medicaid for my healthcare, and in home caregiver that comes to help me six days a week.

In addition, the Olmstead Law has allowed me to be able to enjoy living in my own small cottage. My Section 8 Public Housing Assistance helps me so I can actually afford to pay my rent each month. A CARE discount that I get each month also allows me to be able to afford to pay my monthly utilities. I am proud that I have been able to live on my own without much undue hardship for the past 30 years of my life. Before my lymphedema got bad, I even drove and had a car from 1990 till 2012.

I am writing this on behalf of myself and all of my friends in the Disability Community who, like me, either cannot work, or who are going to school or through Vocational Rehabilitation, in an effort to gain employment.

I am writing on behalf of my Disabled friends who already are working, but still need help with healthcare, necessary medications, mobility equipment and personal care so they can keep their jobs.

I am writing this on behalf of all veterans who have fought for this country who need services.

I am writing on behalf of senior citizens who depend on Social Security, Medicare, Medicaid, Housing, and other vital programs that help with their quality of life. And yes, I fall into this category now.

Please don’t let this tax bill become law the way it is written. If it does, you will be forcing all of us who are poor, Disabled, elderly, etc. into grave undue hardship, homelessness, and death. Many will have to drop out of school, and stop working, and those of us who cannot work, who depend on our social safety net for our very survival, will be plunged into utter devastation and despair. Many of us, like myself, have no family to help us if this should happen.

If i don’t have personal in home care, I will cease to live.

Please. I urge you to think of the millions of real human beings this tax bill will be hurting. Please don’t cut Medicare and Medicaid. or Housing. Or tax those of us who can least afford it.

I am all for tax reform—but only the kind of tax reform that is truly just and fair for ALL of us.Me on September 27, 2014-2

Trapped

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CW: This is not a fat shaming post. This is a Melissa health post, because i am perishing.

I slept all day today, and had nothing but nice travel dreams where i was traveling, by airplane, to the East Coast, and in the latest dream before waking up at 4 PM, i was traveling to Bloomington Indiana, a place i did once visit back in July 1983.

I so wish i still weighed at least 175 lbs again, with no leg problems, and could get another car and drive again—-and even fly places to go see my FB friends. I don’t need to be reed thin, just at least back down to between 175-200 pounds. That would get me back to a better place physically- functionality wise, to where i could do all of those things again. I know it would help the lymphedema in my legs too.

I want to repeat again: I am not fat shaming by saying what i am saying. My body is shutting down. I am shutting down. I can no longer function like i need and want to because i weight about 350 lbs now, and i have bad back, knee, and hip problems, as well as the lymphedema on both legs—-AND the huge lymphedema ROCK on the inside of my left thigh.

The lymhedema was caused by me not being able to sleep laying down anymore, but sleeping for 8 years, from 2004 to 2012, on a badly broken down living room sofa that bore into my left leg and thigh, especially. I would sleep sitting up, with my feet on the floor, which is bad for leg circulation.

In addition, i have always been, and sill am addicted to junk food to help keep me calm because of this hellish street i live on, stuck day in and day out, inside this house, because i never feel well enough to get in the shower so i can get out and about and get my hair colored anymore.

Having so few people actually care about me in real life—-(i do have my mom, one nice sister, Connie, and my Facebook friends, but no in real life local friends or family support other than my mom and one nice sister)—-has worn me, and my body completely down.

In addition—i have to endure day in and out, unbearable loud hot rodding and thunder bass noise right in front of my house on a street where the speed limit is 25 MPH.

I never get to go anywhere anymore because of my physical circumstances. It is even now hard for me to keep doctor’s appointments. It is getting harder and harder for me to even want to get out of my soft comfortable life chair anymore.

I am depressed all the time now, and don’t have the will to live anymore, so i am praying daily that either God lets me win the lottery so i can escape this toxic neighborhood, or for God to please take me—-because i cannot bear the way things are any longer.

I am an Autistic adult and i feel trapped with no way out of these circumstances.

My Night Of Lamentations

I have no hope whatsoever for a decent existence now. No more will the police help me, and the mean bully across the street knows this, and is giving me the night from HELL. I do not know if i will make it now. I am sick, having one meltdown after another.

+++

I don’t care about whether it rains or not anymore
I don’t care anymore because nobody cares about me
I don’t care because i evidently do not matter to most ppl
I don’t care anymore if they haul me off
I don’t care if they kill me
I just want out of my misery and hell.

+++

I have lost all faith in humankind and in God now.

+++

I am so upset and discouraged at the way my police dept has decided to blow my problems off that i left several of the Santa Maria groups i was in. As soon as i am able to move, and know i can move somewhere decent, it is not going to be anywhere else in Santa Maria. I can promise you all that!! I am DONE with this town and the way its police dept has let me down!!! Done, done, and done!!!

+++

I needed someone to physically talk to right now, so i called the national crisis hotline. I wish i could say it made me feel better.

+++

What would make me feel better right now is to win enough money in tonight’s (Weds) night’s lottery, so i can move away from this pit of hell as fast as i can. To a place where i know i won’t face bullies who torment me right outside of my house day and even night. Like i have here. Where i also won’t have to call the police anymore either.

+++

I no longer consider police my friends. At all.

+++

This night is lasting way too long. And then i know my daytime will be more of the same of what i had yesterday. And now i have no more police to help me. This feels like one long dark tunnel that i cannot seem to climb out of.

+++

I am an Autistic adult in peril, and i need help, please!! I need for my community to see me as the human being i am, to see my plight as the very real nightmare it is, and to not force me to have to endure it any longer. I no longer feel like i am at home here. I no longer feel safe. I no longer feel like i am going to make it. Because my police dept has given up on me.

I Am Autistic, Not Spoiled

midnight-auroras-lake-superior-michigan

I am Autistic
I am not a behavior problem
I am not a faulty broken appliance
My Autism
is a neurological developmental disability
That i cannot just take on and off
like one takes on and off their jacket or clothing
I cannot help it that i am easily triggered by
Abrupt changes
Changes happening that happens
without my first being told about it
and prepared for it
Harsh impatient angry tones of voice
Harsh impatient angry looks on the faces of others
Certain foods
Certain songs
Certain smells and scents
Certain atmospheres
Certain textures
Certain lighting,
especially if it is intensely strobe-like
The dark
Being chided or made fun of
Being told i said or did this or that
when i know i didn’t say or do that thing
Being told things are a certain way
when i knew they were another way
I am ultra sensitive to being criticized,
talked down to, condescended to and yelled at
Please understand when i am having a meltdown
it is not a temper tantrum
the meltdown has happened because
something has triggered me and
caused me sensory pain and anguish
sensory pain and anguish that is very real to me
As if i was being actually physically hit
or stabbed or whipped
it is especially at that time that
i need to be treated gently
My Autism cannot be fixed or cured
or scolded and yelled away
Nor can i separate myself from my Autism
It IS a part of me
It is all of who i am
My Autism does define me
It defines all of who i am
God made me and all other Autistic people
Please understand that I am me,
i cannot be and act the normal
that the world wants me to be.
Please understand this.
I love you, everyone.
I love you all,
and i really hurt when i feel
people don’t love and care about me.
Please let me be me and
don’t hate me for being my Actually Autistic me.

Rivers Of Anguish, Rivers Of Hope

Below are some of my latest posts. Because i am needing to write. because i really do need help. Because i really do need a way out of this jail i am trapped in. This jail that is made up of my toxic neighborhood, and the tiny 550 square foot box that i am confined to.

Sunday, Sept. 18, 2016–7:03 AM

“Oh boy, the sun is up early!! GRRRRRRRRRR!!! 😡 It’s gonna be hot today….i am so not looking forward to that!!! 😡

Grumpy me is going back to bed because it is still nice and cool right now, and i will just hope for the best, that my house doesn’t warm up too badly.

Just…..GRRRRRRRRRRRR!!!! 😡 ”

Sunday Sept. 18, 2016–2:53 PM

“Oh God, this is AWFUL!!!!!!!!!! My living room is an awful hotter than Hades OVEN this afternoon—-i should have had the A/C window open—-it is not, and I AM SUFFERING HOLY HELL!!!!!!!”

Sunday Sept. 18, 2016–4:14 PM

“I am okay now. My mom called the fire dept. for me, and they sent a nice police officer over to open my A/C window, so now i have the A/C going, and my living room is cooling off nicely. It got very HOT today, and i was almost ready to suffer heat exhaustion. Because here in my living room, it felt like it was 100 degrees. I was seriously burning up.

I REALLY hate my Sundays though, because i am alone with no one to help me at all on Sundays. At least i know i can call the fire dept or police if need be.

I think i will go cry now. I really feel like crying now. 😥 I HATE having to be alone anymore!!!! 😥 “

Sunday Sept. 18, 2016–5:10 PM

“I am glad i did not have to die in my hot living room today, very thankful for the nice police officer who opened my air conditioner window for me—very thankful that my air conditioner still works!!! 🙂 “

Sunday Sept. 18, 2016–6:09 PM

“The KSBY website says Santa Maria is still at 80 degrees as of now. YIKES!!!! :O “

Sunday Sept. 18, 2016–6:56 PM

“I am glad the sun is setting now. I really want to move where it doesn’t get hot like this!! Yes, i am serious about this!! Because……i actually had to get a police officer to come to open my A/C window today because i was getting overheated to where i was going to pass out.

I had my mom call the fire dept. to do this, but instead, a nice police officer showed up to open the window for me.

Like i say—i’m glad i had this help. Otherwise i would have had to call an ambulance.

I am going to go eat dinner now.”

Sunday Sept. 18, 2016–8:44 PM

“Here are the places i would go if i could still drive and still had a car—but i had someone who would go with me so i am not having to go all alone:
*The San Luis Obispo Farmer’s Market
*Avila Beach/Harford Pier/Pismo Beach/Shell Beach
*Avila Valley Barn
*The movies
*Panera Bread
*Solvang/Los Alamos
*Downtown Friday Nights farmer’s Market
*Applebee’s
*Cool Hand Luke’s for ribs
*San Luis Obispo downtown/the mission
*Morro Bay/Cambria/San Simeon
*Crumbles Restaurant
*F. McKlintock’s for ribs
*Woodstock’s Pizza
*Waller Park
*a nice laid back church that accepts Neurodiverse, LGBTQ, and all marginalized people
I wish i had local friends who would take me to these places. I wish i was not all alone. I wish my family cared about me. I wish i was not in this trap, this cage i am in.”

9:43 PM

“I just watched the news as it was on after the Sunday night NFL football game, and found out that today’s temp in Santa Maria got up to 96 sizzling hot degrees. No wonder i was having heart palpitations, and feeling hot, flushed, and like i was going to pass out!!

If i had not of had my mom call to get someone over here—-a nice police officer came—-to open my air conditioner window, i could have died today. I am still feeling very rattled, and am now afraid to turn off the air conditioner for fear i will feel like passing out again.

96 degrees is way too hot for someone like me to have to sit in a living room that has turned into a hot oven; because of my leg condition, and i am also 3x to 4x plus-sized, with a new problem: low kidney function….i cannot get by without the air conditioner.

I am going to have potato chips dipped in ketchup now. Because that is what i am craving. I am also craving soft and doughy homemade sugar cookies. But i don’t have those, so….yeah…..

I hate my Sundays on desert island!! 😥 “

9:44 PM

“Yes, 96 degrees is way too hot for me!!! 😦 “

I then posted memes about Autumn, because i love that season, when the leaves all turn such beautiful colors, and the days are just warm enough to be comfortable, and the nights are nice and cool. I also posted a meme about all of the soft and doughy looking Christmas cookies i would love to have this Christmas.

I really am alone, and so lonely for local friends.
I am lonely to have more caring people in my life.
I am sad because most of my family coldly ignore me.
I am in pain all the time because of my legs, and this leg tumor makes it so hard to even sit and enjoy my computer.
This Spring and every Spring now when the hills are bright green from our winter rains, i always miss getting to get out on drives to see them and take pictures of them.
I long to live where i can see beauty outside—not these ugly yellow tin buildings all day long.

I am hoping that i can at least get my own speed radar trailer. I made a Go Fund Me page for that, and to also raise the money for a move to a place whee i will have the above things i so long to have.

I so hope someone will help me, please.

https://www.gofundme.com/2ckkdc4

078

103

Please Stop & Listen To Me–I Need More Allies & Friends

I have spent the past several hours sleeping, and plan to sleep more.
I sleep all the time because i am not happy anymore.
I need the police to be real allies to me.
I need for them to stop ignoring me.
I need to have the speed trailer back on my street.
I need for my legs to work again, for this awful leg tumor to be gone.
I need for my next door neighbors to hurry up and move, because of the tension they still cause for me.
I need in real life local friends who will be willing to take me places so i can get out of this box once in a while.
I need for my family to wake up and start caring and understanding and accepting me as i am.
I need them to learn about my Autism and understand it once and for all.
I am tired on all levels.
It is a deep tired of all of my lifetime goals being lost to me.
A deep tired of not having things to look forward to and hope for anymore.
I dread each day because of the street noise and the next door neighbors.
This needs to change.
It isn’t just me, it is many elderly and disabled people who are in this same or similar boat.
Society throws us away and ignores us because we are too inconvenient to them.
We need for you to all care, to get in the cubby hole under the stairs and sit there with us, when we go in there, instead of yelling at us to get out of there.
What harm would it do to let me play with your shiny hair, big sister?
What harm would it do to listen to the story i have told, to see why i told it, to understand why i told my story—-which is because you all have essentially left me to live alone and lonely my whole life, always on the outside, always on the fringes.
I was always the last one to know things.
Please don’t tell your Autistic/Disabled children/kids/relatives
that they will never date
never drive
never have a job
never have friends or romantic relationships
or that they don’t know what’s going on or how to think for themselves
that is Othering and making us feel like we are wrong, less than and don’t belong when we DO belong.
Remember this:
Children are developing human beings, and even though we may develop at a different pace, does not mean we won’t be able to do all the above things.
We are still human beings, capable of great success, all our families have to do is BELIEVE in us and not ignore and discard us to sit alone in our rooms.
Many a time i would sit alone in my room and cry wondering why you all hated me?
God made us, and God did not make and does not make mistakes, so why do you so easily discard us?
Think about it….please listen to me because my health is now failing and i honestly do not know whether i will be around that much longer because of my health issues.
Yes, i needed to write this.
Yes, everyone needs to read this and take this to heart.
I do not want to be alone anymore. It hurts like hell to be alone.
This is why i have turned to certain roads, highways and electronics and made them imaginary friends.
This is why i made a friend out of the speed trailer when it was here.
Exactly why.
I hope and pray i get that back within the next two weeks, maybe even this week.
Yes, because it’s my friend and i feel it protects me when it is here.
I loved to sit outside and watch it working, so i hope it goes back on my side of the street again where i can easily watch it working again.
But it also makes people drive the speed limit, even slower, and lessens the loudness of the noise, and it also takes care of the loud hot rodding too.
Please, God, let this week be the start of life getting better for me again.
Thank you.

My Go Fund Me:  https://www.gofundme.com/2ckkdc4

103

Alone, & So Lonely I May As Well Live In An 8ft by 10ft Jail Cell

103

I, Melissa Fields, an Autistic adult—-yes, we exist, and yes, there are lots and lots and LOTS of us out there if people would just take the time to see, hear, look, listen to us and treat and respect us as the human beings we are—- had to stop driving in April of 2012 for three reasons——-

because i was becoming too afraid of going places—-anywhere—- by myself, because of all of the meltdowns i was having in public whenever i was faced with ableism from people—people who did not get my Autism and sensory issues, who would get angry with me and escalate an often ugly scene with me instead of understanding and learning why i was upset, and why i was asking for certain accomodations—–

because i had just gone through the very ugly and deeply traumatic break up of a friendship with a person who had become like a family member to me, who suddenly turned against me with full on inexplicable fury that year——

and because by that time, i had already developed a huge leg tumor the size of a basketball on my left inside thigh area, which made it hard to get in and out of the driver’s side of ANY vehicle. I began to develop lymphedema in both legs in 2005, due to having to spend years of not being able to sleep anymore in my bed but instead, sleeping sitting up on my already delapitated living room sofa with my legs and feet down.

My life since then has plummeted into a spiral of failing health and isolation and loneliness. All of the bullying i had taken by that time from neighbors all around me where i live, was starting to erode my physical health and strength. Today, i am a hot mess of heart palpitations, anxiety, PTSD, and insomnia, along with my leg issues.

Today, after going through a string of several abusive caregivers, i finally have Connie as a caregiver—and she is a friend and ally to me. She has been my caregiver for almost 3 years now. It was due to her,—-on her days off,—-and a kind beat coordinator officer at my city’s local police department, that i finally got some resolve to many of my issues. Most of the bullying has now stopped, except for when one neighbor who knows my situation and who knows how to best upset me, goes to talk to them and stir them all back up against me again. Those neighbors today are still a bad problem. The street noise is still a huge sensory issue that causes me daily meltdowns. Because people drive my street like it is a raceway/highway—and it is loud. I am “blessed” with tin buildings all around, which further amplifies this noise. Cars with thunder bass systems are the topping on this nice hellish cake.

But now i am at the point where i feel nothing but depression and despair anymore. I am 56 years old and life has literally passed me by. I have never known the joy of having long lasting close warm friendships, nor been able to experience a romantic relationship. I love people, and i am a people person, but i now have a great fear—–i always have—but today it is even greater—of being abandoned—-of having people turn on me and be mean to me—-so i hide——then i latch onto certain things like certain roads, highways, and electronics—- and make them my friends. I sometimes latch onto these things with my all. Because the loneliness hurts that much sometimes.

I am too young to feel like this. I am too young to die. But i feel as if i am living on a sort of death row, because each and every day is the same damn thing, over and over again till i want to scream. I wake up, do the same things every day, and then repeat the next day over and over. I only feel happiness when Connie is here. But iam now way too afraid to venture out and do anything alone—-for fear of being misunderstood, and for fear of people getting angry and saying mean things because they don’t understand and don’t want to understand. For fear of being rejected, shunned, ignored.

I was denied lymphedema care by a home health agency yet again because the physical therapist who came to see me, deemed my Autism as not real. I had a meltdown and screamed at him to leave my house. So i continue to suffer without treatments for my legs.

I don’t know where i’m going with this blog. But i am writing it because i want to educate people to let you all know what it is like when one is left to fall through the cracks and fail, because they got thrown away time and again. Imagine your own family shunning you because you’re Autistic and they don’t get that this is not a behavioral problem, but a disability, a very real disability.

Imagine your family putting tape after tape into your head that tells you you will never have a job, you will never learn how to drive, you will never have friends, you will never have a boyfriend,——that you are less-than, because you are disabled.
That’s been my life all the way.
I also write this because i need help–and i know that help is out there for us—i just live in the wrong geographical area, ya know?
That is why i turned to the speed trailer for comfort. I was happy when it was here. Yes, it calmed the traffic way down. But i also loved sitting outside to watch it working. The way the numbers would come up, and then down, the way the fonts look that the manufacturers of this speed trailer use, the way it lights up with a bright red “SLOW DOWN” sign if people drive too fast past it—and if they drive any faster, a strip of blue and red light bars flash on it—-began to really fascinate me.
Now i don’t have the speed trailer, and now my depression is even deeper, and i have had to go back on pain medication because my right leg is now in excruciating pain all of the time.
I did make a Go Fund Me page, But i am not getting many donations.
Like i say, i don’t know where i am going with this—-just to let you know that life does not have to be this way for us. And to plead with people to please stop ignoring us. Listen to us. Accept us. Love us. We are human beings, and God didn’t make us Autistic so you could throw us away.
For anyone interested, here is my Go Fund Me page.