Thank You, Aunt Bee

Why do I keep having dreams of my aunt,

my late father’s sister,

when the woman literally hates me

and has refused to ever help me

to where I could

actually make

the huge moves forward in life

that I have literally

needed to make my entire

flipping adult life????

She has always known

since I began writing to appeal for her help

in Nov. 1988

that I am multiply-disabled

that I could have lost my SSI/Social Security

F O R E V E R

If I tried to better myself without her help

and I failed because of my disabilities

and needed to go back on my monthly benefits

She refused to help me get

the dental care I needed

So I wouldn’t start losing my teeth

which has happened

She refused to understand

How my disabilities

could keep me from working

She wanted me to suffer

and

just do without instead

And that is exactly what has happened

When one cannot work

their entire adult life

because of deep painful sensory issues,

executive functioning

and sensory processing

and sensory triggers

that are real and serious enough

to affect my job performance

and me keeping any job

she instead expected me to

somehow

magically

come up with

a set of

bootstraps

to pull myself up by

when I could not come up with

any kind of fucking bootstraps

She has always treated me like Ima criminal

Instead of disabled and unable to work

and even ridiculed me when I

finally got a diagnosis of autism.

Hateful people

whose hatred

and bigoted cruelty

can

literally

dismantle

and

ruin

a disabled person’s entire existence

by their cold hearted cruelty

I would hope that if I had riches

Like she does

that

I would never

deliberately turn my back

On my own niece

when she reached out to me.

And flat out refuse to help her

Like my aunt has done to me.

Thank you “Aunt Bee”

thank you so very much

for throwing me in the literal trash.

And now It is too late

I have end stage kidney disease now

which IS a terminal illness.

I hope I do have riches someday soon

So I can make this right by helping

another hurting **me** out there who has

also

like me

fallen through the cracks

and

who lives her life today

in a state of constant

daily

hopelessness,

distress

and

utter

despair.

An Appeal, To Be Seen, Heard, Befriended, & Given Real Hope For My Future, Please, Before It’s Too Late

I am writing this appeal now, folks, because my life as a multiply-disabled 62 year old adult cannot go on like this. I am writing this in the fervent hope I can find a few local friends, and maybe get the attention of those in higher places who can help me to finally find my place of happy and secure in life.

While I am still somewhat able to enjoy it.

My current situation, being that I am multiply-disabled now, continues to be a daily hell of me feeling like horrible black walls of doom are closing in on me fast with no visible real way OUT….and I am drowning with nowhere to go but horribly

//U N D E R//.

Can someone who has the financial means, compassion and understanding of my autistic existence, please take me under your wing and adopt me? Just to give me a bearable quality of life, and a sense of real family and belonging that I never had with my biological family?

I am now officially a senior citizen. As stated above, I am autistic, lonelier than lonely, in deep financial debt, and have deep anxiety, depression, C-PTSD trauma, numerous nightmares, trouble sleeping and staying asleep,— because I am worried to death of becoming totally homeless and destitute when my mother passes away.

Because of my disability of Autism, I have never been able to work my entire adult life, and have instead, existed all these years on SSI, then Social Security Survivor’s benefits, Medicare and Medicaid. And Section 8 Housing Assistance.

Except for my mother and two sisters who all live out of state, and my two awesome sweet angel caregivers, I have no physical and emotional support. None.

My mom and two sisters care, but they cannot help me financially beyond paying for my TV, internet and my landline and cell phone. My mom also pays for my city trash, recycle, green waste, water, and sewer services.

I am partially living off my credit cards, and am in over $12,000 dollars of debt now. Because I get very little to live on through Social Security. Even though I budget and pay all of my bills—my electricity, natural gas and three credit card payments—on time each and every month.

And it has gotten worse to make ends meet since COVID.

And well, as for my family, the rest of them— my 3 other siblings, and all of my nieces and nephews, sadly have //nothing// to do with me.

Some even have me blocked.

Because they all view me as a problem and burden because of my meltdowns and sensory issues….and this greatly hurts and breaks my heart into a million pieces.

In addition, the states where my mom and two sisters live are way too hot for me climate-wise, and too rural and isolated, with even less services than I have here in CA, so I am unable to handle relocating to those states so I can be physically near them.

My current living situation is so small and confined, is very noisy, is like a tight hot wooden box to me, and I //need// to be in a bigger place. Where I can see pretty flowers, trees, and the sky.

In addition, my cottage that I live in, and the cottage next door, are owned in part by my mom, and the very 3 siblings who ignore me and have me blocked.

I am told repeatedly that these 3 siblings—-no, NOT my mom, just them— want to sell my cottage and the one next door and have me just thrown into a rest home to vegetate and rot all alone for the rest of my life….and this adds greatly to my distress, fear and worry.

I feel like life is passing me by, literally. The fact that the home I live in is not my own, but belongs to those who are trying to edge me out and into one of those “homes”….terrifies me to a literally utterly horrible degree.

All I have to look at here are mostly awful ugly yellow tin buildings and hard ugly hot glaringly sunny asphalt and concrete.

In addition, I have been on in center hemo dialysis for 4 years now, and although my labs are always great, it greatly weighs on me that I now have what *IS* a terminal illness now.

I long to visit the ocean again, to hear and see it again. I long for local friends who will get me and not try to change me to what they want. Who will take me to the ocean and other places and just sit and hang out with me. Without judgment.

I would also love to be able to attend a liberal progressive church, and cannot do that either, because I have no way to get there either.

I am only semi-mobile now, due to lymphedema on both of my legs and lower abdomen areas. And a large lymphedema lump that is the size of a football on my inner left thigh. My legs and lower abdominal areas are badly disfigured by the lymphedema.

I can barely walk, as my back, hips and knees and legs all lock up on me in excruciating pain if I walk or stand too long— and I have to use a cane, walker, and wheelchair to get around. I can no longer drive…and can only ride in the front passenger seat of sedans or vans and SUV’s that are low enough for me to be easily able to enter and exit these vehicles.

This leaves me feeling stuck and cooped up like 24/7.

I live in a constant state of distress, fear and worry because of finances and my living situation. I wish I could just find a support network of those who understand my autism…who won’t become angry at me and give up on me when I have sensory overload and meltdowns.

Who will be here for me.

My main life goals have always been to be able to see the whole Northeastern US including New York City, plus Northern Michigan.

I long to tell my life story as an autistic growing up totally misunderstood and alone. I also long to draw again and to sell my artwork.

My home—and my life—has become an unbearable never-ending jail.

I need help before it is too late, please. Because I am seriously drowning.

Dialysis Hell, Here We Go Again…!

I am finding myself once again wishing to God I did not have to do dialysis anymore because of the toll it is taking on my mental, emotional and physical health. I cannot sleep at night, and am in a consistent state of mental chaos having to continue to deal with the ableism and refusal to accommodate my support needs at my lifesaving vital dialysis treatments that I am forced to go to if I care to live.

Each time I have a bad experience at dialysis, my poor caregivers suffer, because the meltdowns I have at Davita do not stop after I leave your clinic after one of my bad days there.

Bad days that **can** be mitigated. I repeat: bad days that **can** be mitigated.

I have told all y’all how to mitigate these meltdowns, and shit just keeps happening that sends me home in full-blown mental emotional sensory hell. Which gets straight on projected onto my caregivers. Because I am unable to hold my state of sheer sensory upheaval and distress IN.

Yesterday could have been mitigated. Just by Angel letting Nurse Jenni K. go ahead and put me on the damn machine. But no, She forced me to work with a nurse I had never worked with before in my life. It was early morning for me, and that early in the morning, I am not gonna have the spoons (energy) it takes for me to get to know a strange new nurse and tell them all about my put on routine.

Again—my autism is a disability. A disability that comes with meltdowns if I am forced to march to all y’all’s neurotypical beat when I am unable to do so.

I am asking you all to once and for all take my autism seriously, as accommodating me will make me be able to continue on with my hemo dialysis therapy. Otherwise, I am seriously contemplating quitting and having Hospice come into care for me.

Angel, you always tell me you love me, that I am beautiful and that you have my back. But you did not have my back yesterday. And the results were a spectacular fail—for all of us involved. There’s a good reason for my trust issues, and If I cannot trust my care team at dialysis, this won’t work for me.

Below is the post I wrote on Facebook last night, because guess what? I was unable to get to sleep until after 2 AM this morning.

Please, for the love of God, take my autism disability seriously, once and for ALL. PLEASE!!!!!

My post:

I usually watch General Hospital at about this time. (I began writing this post at 10:00 PM tonight and it is now 12:14 AM).

I am not doing so tonight.

Instead, I am still wide awake, binge eating bomb popsicles and playing over and over again today’s—now yesterday’s—horrible tapes of all of the hell I was forced to endure at dialysis today / yesterday.

I STILL can’t calm down. I am hot, so I have the A/C on, and this stress is also affecting the vision in my left eye. Lately when I get highly upset, my left eye gets blurry / double vision in it.

What’s it going to take for all y’all non-autistic folks to realize that autism is a D I S A B I L I T Y and not a B R A T T Y B E H A V I O R? I can’t take my autism off wherever I go. It goes _with_ me. My autism is a part of _all_ that I am and do and say and think and experience.

My autism requires certain accommodations. I’m 62 years old, and old enough to K N O W what works and does not work for me and the way my entire body is wired neurologically.

I went to this day’s treatment and **everything** was changed. For one, I found out the tech I loved, Bre, no longer works there. I didn’t have the other tech that I usually have, either–his name is Robert, and they had him working on Side B today—-and I also had a new nurse, a traveler, who //only just met me// the last time I was there.

He was working my side on my last visit, but was not my nurse that day.

I don’t do well with abrupt and sudden changes, and this threw me literally for a loop. Right off the bat.

I got to my machine and found no call button and one of the big blood pressure cuffs instead of the small teal-colored one I use that is comfortable, that goes just above my right wrist area.

That upset me.

Then this new nurse turned around and very curtly introduced himself to me, and I just _froze up_. I couldn’t do my treatment if I had to go through and have to use spoons I really didn’t have this morning, to explain to him how to tape down my shirt and then do my catheter and machine and blood pressure cuff and etc.

I began to panic. And then panic and panic. AND panic.

My old nurse, Jenni K., seeing how distressed I was, came over, offering to put me on the machine. That made me happy! I calmed down, ready to get put on the machine so I could dialyze and get it over with.

But then the head nurse, who is usually very sweet and understanding with me, seeing that Jenni was going to put me on, even though she could see how happy it made me, shooed her away, saying curtly that I would _have_ to deal with the unfriendly strange new nurse today.

I said “Oh HELL no, no, no, no, no!” and went back in my wheelchair and called Connie to come pick me up, that I was not going to do my treatment today under these circumstances.

I went on and on pleading with them to get my social worker to come help me.

Oh well—I missed Friday because of severe stress and anxiety due to last Wednesday’s shitty dialysis day and that same afternoon’s doctor appointment, so what’s me missing today too? /s

When the new nurse heard me talking to Connie on my cell phone, he suddenly softened, and said he wanted to work _with_ me and said I could tell him how I wanted everything to be done and he would do everything as I directed him to do.

Well—that_didn’t_happen.

I called for my social worker to be there at chairside for me. He was unable to come at first. So I was a hot mess trying to tell / explain to this new person how I like everything done.

Things did not go well at all. He lifted my leg rest up to get my feet and legs up in the reclining chair, but he only lifted my legs up by the addition part, not the actual leg rest that is underneath the leg rest add-on, and that set me off into a whole new meltdown.

Then he entered my prescription in wrong. I had told both him and the tech who brought me back, I only wanted them to remove _1_ kilo_of_fluid because my body cannot handle them taking off too much fluid at a time—and he went and put in _1.4 kilos_!. I said in sheer alarm: “NO, I do NOT DO that much!”, and he began to argue with me that the 1.4 was the norm.

I snapped and told him I knew my own fucking body–that I’ve been going there for 4 years now, and I knew how much I could handle and to fix it.

It did get fixed.

But then there was no heparin in the machine. I played hell trying to tell him to set my heparin at 0.7.

He finally did, and then when he went to tape my shirt, he began to tape the tape right onto my skin! Another no-no-no-no-no-no-nooooo!!!!

The blood pressure cuff the same thing, he kept putting it on my arm wrong with the lead of it stuck in my chair, which I HATE, because it makes me feel even more stuck in my chair to not be able to freely move while I am on the machine.

I did not get put on the machine until 10:25, and I came at 9 AM for my normal put on time of 9:15. I was not even taken back to my chair until 9:25.

At 10 AM, my assigned tech came…it was Cheryl, another young lady who I like, so that calmed me down somewhat.

I got to finally talk to my social worker, who said he would have a talk with the head nurse about how my get on went this morning. He said he would also find out what I would be in for when I come for treatment on Wednesday.

On Wednesday, I will start with Nurse Sadat, another nurse I have worked with who I like, and then my regular nurse Lauren will be on at 10. I will again have Cheryl also at 10 AM— but he was unable to find out what tech I would have before Cheryl’s clock-in time.

Larry, my social worker sat with me and I also got to talk to the head nurse and tell her how much I want to quit dialysis, because I can’t handle all of these changes. Her sweet side was back.

I still wish she_had_just_let_Jenni K._put me on. if she had of let Jenni put me on, I would have gotten put on at about 9:30 instead of 10:25.

I got 3 hours and 35 minutes of my treatment done, but ended up having Sadat take me off the machine. Because during my treatment, I noticed the new nurse, who had a runny nose, which he kept pulling his mask down to wipe—with his hand—and he never bothered to use hand sanitizer or wash his hands afterwards, and went onto handle other patients’ access ports and machines. With his germy hands.

Another HUGE pile of no. I was not about to have him touch me again after witnessing his poor hand hygiene. And then end up in the hospital with sepsis again—on my chest port which goes straight into my heart! Which could kill me!

I told the front office that I am requesting to never have this man as my nurse again.

And well, it’s past midnight now, and I still just can’t fucking calm down.

This clinic needs to hire more people who are actually caring, patient and compassionate human beings, because I am sick of having to go do a lifesaving treatment when I never know what kind of land mine I will be walking into when I go there.

Thanx to all who took the time to listen.

Sincerely,

Melissa Fields

An Update And New About Me

Hi, it’s me again! Sorry I haven’t blogged in awhile. I have mostly been posting on my Facebook and Twitter…..doing lots of writing via those two platforms. I mostly write about ableism, what it’s like being an autistic adult in a world that is still not built for autistics, and I also write about social justice / political things relating to disability rights, racism, bigotry, homophobia, transphobia, marginalized people, gun and police violence, and how our governmental leadership is seeking to roll back people’s rights to the 19th century Dark Ages again.

So..first an update on how I’m doing.

I identify today, as Queer, Bi-Sexual, and Non-Binary. Contrary to what some may believe, this isn’t a choice, but the way I have felt since I was a child playing with my little brother and his Tonka trucks, and making huge mud holes in our backyard, just as much as I played with my Barbie dolls.

Just as much as my Autism is a huge part of all that I am, so is my sexual and gender identity. Take all the time you need to sit with this. It ain’t changin’, because this is me, full-on.

I’m still doing dialysis, but have still been having a rough time due to Nurse W, and two other impatient and rude ableistic techs. But they have now put me back out on the main floor, Side A, and Nurse W is now gone daddy gone, as in she has a new job somewhere else that’s away from my dialysis clinic, so I no longer have to be “graced” with her presence when I dialyze.

I am much happier on Side A, as I still have my customized chair with the specially-built leg rest for my legs, and I am once again working with the kidney center staff members with whom I have always gotten along with very well. I have a wonderful social worker there, too, who truly has my back.

Connie and her daughter Natalie are still my caregivers. I am slowly losing weight, for the sake of my mobility and health only.

And now, I want to address some things, mainly some misconceptions that keep cropping up about me.

To my eldest sister, whom I love with all of my being, of course I forgive you! I forgave you long ago when I wrote that open letter to all of my family members back in 1994, and you called me one afternoon and we talked things out. I also forgive my second eldest nice sister, who I have also gotten to talk to—she and I talked after my mom took a fall on New Year’s eve 2019, two month’s before COVID happened. (No worries, my mom is fine now.)

I also forgive my eldest brother who passed away, who prayed for me daily when he was alive. And now, he is one of my guardian angels.

I also consider my mother to still be my best friend and ally. And to this day, I still call her at least once a day.

I am even finally starting to have positive dreams about my father now….and am beginning to forgive him for not getting and accepting me as I was when I was growing up.

It is the rest of my living family who to this day, my other 3 siblings, nieces, nephews, and in laws, who still don’t get how much or how deeply they have hurt me, and who still think of me as their “batshit” sibling/relative who always had too many “problems” and meltdowns. They refuse to believe I was born Autistic, that I was born with a whole different wiring system, and that my Autism does not make me Less Than, broken, and wrong, nor did it ever make me their personal punching bag/scapegoat for all that they say has gone wrong in their lives, “because of me”.

They still think of me as too weird and that I am an effing burden, who should just be shunned and shoved away in a nursing home, so I can risk being abused, neglected, and further isolated from the outside world and life.

I don’t “hold grudges” from my past. I am greatly traumatized by my past. There’s a difference.

Because that’s just how C-PTSD trauma, which I have, works.

When things happen that hurts one’s vey spirit and being/core of who they are,

that one has had no closure with,

and these things happen repeatedly, over and over and over again throughout one’s entire lifetime because they happen to have a disability they never got to, or refused to understand,

it causes deep and pervasive long term whole body affects: everything from nightmares, to flashbacks, (viscerally real flashbacks) to Rejection Sensitive Dysphoria, to deep trust and abandonment issues, to constant hypervigilence, and startle responses, to fight or flight mode, to eating binges, and gastro-intestinal effects, plus other fun tings like sleeping disruptions/insomnia, a weak immune system, headaches, and lots of other physical health issues. Including things like kidney disease. Yes, kidney disease.

Trauma, being made to feel unwanted and unwelcome, and unloved…. affects us from head to toe.

And yes, this is shit I experience on an almost daily basis today. It breaks my heart that 3 of my siblings, and nieces and nephews, still won’t even try to have the hard conversations we need to have in order to make peace with one another.

The hard conversations that me and my eldest sister did have from 1994 on to where she now does get me.

I do happen to have a deep faith. But I channel my personal faith by speaking out on the things that have actually always mattered to me: injustice, racism, bigotry, anti-LGBTQIA hate, disability rights and justice, people’s reproductive rights being upheld, the Separation Of Church And State being upheld, us having voting rights, and clean air, healthy trees, flowers and plants, and clean water.

In 7th grade, Angela Davis was one of my heroes for how she spoke out on racism. She still is one of my heroes today.

I did not vote for Donald Trump, because he is an extremely evil soul….and the very antithesis of what Jesus was all about. You can take all the time you want with this too, but I am not a Trump supporter, never will I be, nor am I a Republican. I stopped being a Republican when they morphed into the Tea Party, and then cruel Trumpism came along.

I stopped being a Republican when I became informed.

Today, after reading America’s true history, and seeing way too many Black, Brown and Indigenous People still being appressed and murdered by police, and racist citizens, I am Left of Left, because I care to my very core about humanity, and I also do not believe it is my place to tell others what they can or cannot do with their own bodies.

I had many of these beliefs even when I was a moderate non-conservative Republican, and only was a GOP’er because it was what my family’s political party was.

I believe in a world that is just and fair and equal for all of humanity, not just those who share my same skin color.

I believe in Matthew 25 where Jesus says for us to welcome the immigrants and refugees, not cruelly separate their children from their parents and throw them into crowded filthy cages.

To those in my family who support Trump and Trumpism, big shame on you. You were raised to know better than to stoop to that level of low.

To my dear eldest sibling, I hate that I cannot sit down and pen you letters. I miss the days when you had internet and we emailed.

I seriously cannot handle handwriting letters anymore because of the executive functioning it takes, when I make mistakes or want to re-phrase something the whole page gets ripped up and I have to start over again, plus, sometimes my right hand shakes and same thing–I will rip the page up and start over.

And since COVID happened I no longer go in stores myself so I can pick out a nice birthday card for you anymore. Or you would have a nice birthday card each year from me. By the way, I hope you have a happy birthday this year. ❤ ❤ ❤

And in closing, it is my fervent hope that before I leave this earth, I will get to finally achieve my lifelong dreams and goals, and that I will also be able to help others find their happy in life.

Peace!