Today

 I am going to say it again

I wish to the highest God

that I had been born

into a family where I was celebrated

Instead of a family who has always thought of me

as their “embarrassment”.

I am still here

Today

at age 62

only because

of this set in my head fear

that I could go straight to this

awful eternal place of burning fire

called hell when I die

if I were to take my own life

Even so, I find myself thinking about dying

every single day.

Because

I have a family

who thinks I embarrass them

Because my family thinks of me

as a shame

and a walking talking Problem

Most of them all moved out of state

during the 90’s and early 2000’s

Now I have none of them

even my mother thinks of me

as a Problem, a monster

and an embarrassment

because I am loud

goofy silly about shiny hair

and I make goofy noises

All I have ever longed for is to be loved

for who I am

that is all

I am autistic

I was born autistic

why oh why

can’t you all get that once and for all????

Today

is a day where, in America

where

we celebrate a day called Thanksgiving

but I recently learned

our Thanksgiving is

actually a white-washed account

of

what was truly a horrific evil

genocide

of

the Indigenous People who lived here first

who lived here peacefully until

white European Christians

decided to

invade and convert them

via violence

against their will

to

narrow-minded

bigoted

white Christianity

because well,

white Christianity

does not respect

other people’s

belief

and

faith

systems

So I no longer celebrate this day

however I am still hyper-aware that families

all across America use this day to

still get together

under one roof and

give thanks for their blessings

and they enjoy

loud rowdy football games on TV

and enjoy lots of good food

and what should be warm close fellowship

with one another

so I still feel the ache of loneliness today

on a day

when we should all be actually mourning

so many millions of Indigenous human lives lost

because of bigoted hateful Europeans who

just couldn’t and wouldn’t

stay in their lane

and let Turtle Island and its People alone

to live in peace

and harmony with nature.

Today

I sit here alone and sad

for them

but also for me

because I feel as though

I have nobody

in my family who truly accepts me

for who I am.

And that, my friends,

is the worst feeling of all.

How Did We Get Here?

 How did we get here? To a world with so much division, hate and violence in it?

I am terrified of this year’s Election Day.

We actually need to just start totally over, and get rid of all of the cruel corrupt capitalist colonizer garbage.

We start by

Land Back!

and

Full reparations to all Black, Asian, AAPI, LatinX, Hispanic, Indigenous, Muslim, Middle Eastern folks who we have harmed, traumatized, squelched, r*ped, and murdered.

Full LGBTQIA+, trans and queer rights, and full reproductive rights and freedom. Codify Roe as law of the land!

An end to the bogus Nixon-era war on drugs and legalization of weed nationwide. And we need to expunge and pardon all who were convicted on all non-violent drug offenses.

A brand new Constitution that has full civil rights, accessibility and freedom…. for all of us.

A new government who actually will work FOR the people…all of us.

A just and fair tax code that forces those who have ample wealth and riches, to pay their fair share.

Break up every single mega merger. AT&T, Comcast, Amazon, etc., have too much power.

I loved it when DirecTV was just…DirecTV. One could buy brand name satellite boxes then like RCA, Sony, Philips, and Hughes, that didn’t break down.

When I could enjoy just XM Radio in my car. And there were stations like Ethel, Lucy, and Fred I could listen to. That were just like the FM radio of my teen years.

I am really upset and terrified though….we need to vote….

This isn’t just about radio stations and TV….the bigger and most important picture is that our very humanity and quality of life itself….

depends on this election.

So we need to vote like it’s our life and death that’s at stake…..because it is. Literally. At stake.

Another Broke & Lonely Saturday Cooped Up In My Tiny Wooden Box

 I feel so utterly powerless today at the age of 62 years….and our upcoming election has me terrified, for all of us.

If I was a billionaire right now, I know I would not hesitate to help to make other people’s lives better. As well as mine.

I can’t stand to see others suffer and do without.

If I was a billionaire and I knew that my lifelong disabled niece who was never able to work their entire adult lives was suffering undue hardship because of that, I could not go to bed and have a restful sleep until I actively set them up with the help they need so that they would not have to continue to suffer undue hardship.

Enough with bootstraps. People do not come with them.

I don’t. I never did.

Yes, I am vaguebook taking to you, Aunt “Bee”. And to my family who hate me simply because I am loud, outspoken and hate racism, injustice and hate itself.

I was groomed to fail by a family my entire life who never accepted me or wanted me to even exist. Because they refused to understand my autism and get it—and me.

So they hated on me and kept telling me all of the things I would never ever do or accomplish or be in life.

This kind of talk sets kids up for failure and poverty, even jail and prison.

No. I never have been in jail or prison. But my life has been an entire life of a looooong list of lost dreams and opportunities because of my family holding me back and hating who I was.

I was never lazy, folks. I did happen to do a lot of hard work growing up…housecleaning, dishes, cleaning kitchen counters and sinks, cleaning bathrooms, I even raked leaves and watered plants. I even picked up the tree branches of the apple trees my dad had pruned one year to make extra money when I was kicked off of my SSI for four long winter months.

But my family always were on me when I would do my chores telling me always, I wasn’t doing my work good enough for their perfect standards.

So I learned early on to give up and withdraw into my bedroom. To not even try…..

Just so I could avoid the harsh criticism I got.

Never good enough.

Too loud.

Too weird.

Too….too….”different’.

In my family, “different” was bad and wrong.

And if they wanted me to write nice thigs about them, they should have, and could have done better.

#AngryAutistic

#YeahImAngry

#AngryAtAllIveLostOutOn

Image ID: A desk with an old classic typewriter on it. Text reads:

“You own everything that happened to you.

Tell your stories.

If people wanted you to write warmly about them, they should have behaved better”~~Anne Lamott

I Need Help So I Can Have A Secure Future When My Mother Passes Away

 I made this Go Fund Me page specifically because lifelong disabled me has literally zero family support when my mother passes away….

When my mother passes away, I will definitely face losing my home, and my internet, TV service, and phones….my entire connection to the outside world….and my way to make my monthly bill payments.

As in I will for the first time in my entire life be homeless and destitute.

Three of my siblings are thirsting to have me locked up forever to rot the rest of my days away in a nursing home or rest home where I will have no more independence and risk being abused even more than I have been by past caregivers.

Can someone please help me??????

Having legit panic attacks right now because I cannot get my mom on the phone at all.

And my mean sister still refuses to take ANY of my calls…I have done nothing to make my family hate me…..except just to hate me for being my fully autistic and outspoken self.

Update: My mom just called me and she is fine. But she is 93 years old, and although she is still in good health, I still worry myself sick because of her age and my circumstances.

I hope someone can help me.

https://www.gofundme.com/…/im-disabled-alone-need-real…

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!

Being Punished For The Right To Live

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

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

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

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

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

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

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

I had a meltdown so bad today because

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

and

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I am sorry, I apologize

I was not feeling well enough today

To be able to remain calm and controlled

In my dialysis chair

In the past two weeks I have discovered

that my chestnut noises are more resonant

and full-sounding

when the computer station is set a certain way

straight, against the wall

I am sorry I couldn’t wait

I am sorry I kept pushing the call button

when you were all busy

I am sorry

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

I do happen to love and care about you all

I am not there to cause any of you hell

I am in hell

because this clinic is not made for autistics like me

I do those chestnut noises all during my treatment

to keep myself from having anxiety and then meltdowns

Please understand that

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

and when you do that

I lose my noises

I am sorry that is so important to me

I like and wish to God In Heaven

that all of you would all like me

and get me

that is all I ask

That you all will learn to get me, please

Please listen to me,

see me,

hear me

I have to have these treatments

so I can live

So that I do not die

Please stop scolding me when I have a meltdown

I cannot help those

I can promise you

They are not a thing I choose to do

If you scold and judge me during a meltdown

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

I am trying

to educate you on what autism IS so you know

Because of Today I really want to quit dialysis

Not because it’s self pity

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

I have bad days

I have days when I have zero spoons

I am tired of going there

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

Tired of making you all angry at me

for what I cannot help

I just am so tired…………

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But I was still beyond hungry and parched from thirst.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That’s not a huge ask.

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

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