Tag Archives: Autistic Acceptance

I’m In Hell & Need Real Help To Get Out, Please!!!

When you were born autistic and your family all think of you as too weird, too different, a problem and an embarrassment, and tell you, over and over and over again that you will never ever succeed in life, this is what happens…..

Another episode in the life of a lifelong autistic adult who got born into the wrong family. And whose whole life has been utterly ruined because of being born into a hateful bigoted family who hated me for my being too different and weird for their tidy narrow shallow lives.

This morning I am deeply depressed, have an anxiety-induced upset tummy, and am also hella worried my house won’t pass its inspection on Monday.

I’m worried my life is going to get worse, not better, and that I will be thrown into a hell even worse than I am in now, where I will never be able to get out of financially, and well, on all levels.

I want so badly to pack my bags ad run away—today.

If I win the lottery tonight, I will get $15,409,000 million net, after taxes.

I do not plan to live in my family’s cottage anymore if I win tonight. My mom has made it clear I am the third class citizen here, that this is the Family’s home, not mine anymore like it was in her old will, and that my family (3 of my siblings) all hate me and want to sell these two cottages where I live, and have me thrown into a nursing home.

On Thursday, “that holiday day”, I was all excited about the good food I was going to get that night…but that was not to be…..my mother got me all riled up again about the damn inspection that is happening on Monday….insisting it is actually scheduled for between the hours of 2 and 5 PM, not the 12 and 2 PM that they told me themselves in a text that is very much on my phone.

When I got overwhelmed after her calling me a second time over moss on the rooves of our front porches, she angrily mocked my very sanity, calling me mentally “off”…..

then my sister got on the phone to lecture me….

I messaged Connie to vent and got her all upset too, when she was in the middle of preparing a lavish Thanksgiving meal for all of us to partake in, and using this meal—and day—as a tribute to her late parents.

Yeah….my mother ruined the day for all of us on Thurs. Why she picked a holiday to stir me up, knowing full well how I would react, I don’t know or understand, and I am still reeling / hurting from her cruelty and insensitivity of me that day.

I love my mother, but I forget that yes, she can be mean sometimes too, very mean in fact, and even play her little head games with me.

That is exactly where I get my deep-seated trust and abandonment issues….I get it from my E N T I R E family…..yes, even my mother and two nice sisters who are mostly nice to me, but then can go into moods where I get literally lectured, proselytized at to go back to my very unpleasant Catholic faith, gaslit, mind-fucked, and thrown under the bus.

Which is why I am so dark in my writings all the time.

I play the Powerball lottery because I am unable to work….as a way to break free from the control of this family who hate me and who think of me as a problem, embarrassment and a monster,

It overflows into every single aspect of my day, and I write to reach out and educate that not all of us who are autistic have nice accepting families who go to the moon and back for us so we have a secure safety net for our lives.

I write in hopes someone with the means will read my story and take me under their wing to help get me from this endless dark abyss, to a place of happy and secure.

Because I hurt 24 / 7. I am lonely, and housebound, unable to drive anymore, and I now need personal caregivers to function and be able to remain in my own home.

It doesn’t matter that I now have end stage kidney disease.

These days, I am painfully reminded—daily now—that this cottage I live in is not my own home anymore. It is always loudly implied that I’m just a useless eater and squatter in homes that belong to The Family. This tiny cottage and the cottage next door, belongs to my mom and the three siblings in my family who all hate my literal guts. Who are bugging my mom to sell these and have me put into a rest home.

Each time I lose the lottery, I get deeply depressed, discouraged and despondent, because I cannot work due to the way my disabilities manifest…I have never *been* able to work my entire adult life because of my disabilities.

And my whole family throws THAT in my face too…accusing me of faking my disabilities because I am actually “just lazy” in *their* eyes.

I also have daily soo-eee ideations because every time I think there’s a real light of hope at the end of this dark long 62 year old tunnel…..that light gets shut off or put even farther away out of my reach.

I can’t go on this way much longer. I need a way out, or my only recourse is to stop dialysis and just let nature take over my body.

Please…is there someone who has the means who can get me out of this hell scape on earth I am in???

Today

CW: Sui, self harm. This is just a poem about how broken my heart is right now, today. I will never harm myself though because of the friends and chosen family I *DO* happen to have.

Y’all know who y’all are.

I’m just really emotional right now because I said mean things to my mom this morning that I shouldn’t have said, and well, I am really in a bad place right now.

Because I don’t like to hurt anyone.

I am not here to hurt any person or creature…..ever…ever….ever.

——–

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.

To All Of The Mary White Karens Who Think I Should Smile, Be Happy & Just “Get Over It”

I was born Autistic. And learning disabilities.

Autism is a Disability, full-on. It is not a bad behavior.

Neither are learning disabilities.

I happened to grow up in the wrong environment where I had a family who did not get my autism or me.

I was not supported and accepted.

I was given a steady diet of harsh Hellfire and damnation

criticism and hatred.

I was thought of as just a spoiled, selfish lazy brat—and treated as such.

I was rarely listened to, rarely seen nor heard— and punished.

I was held back and told I would never

Learn how to drive

Have friends, partners, or dates.

Get a job or go to college.

I got Othered.

I got treated as Less Than.

I got isolated and separated.

I was too loud, too outspoken,

and an utter

embarrassment

to my family.

I got squelched. At every turn.

At every fucking turn.

I got spanked, beaten and thrown into my room. All the time.

For shit that was not wrong.

My family still think of me this way.

They want to just throw me into a nursing home or mental institution.

I have every right to be the angry I am today,

and I have every right to write about it till it goes viral.

It needs to go viral.

It is my story and my never-ending pain.

I was abused.

I have spent my life as an autistic

Misunderstood

Misread

then punished

and

thrown away.

I have missed out on

getting married and having children of my own

Having a career in graphic design,

acting

and

being and FM rock radio deejay

Because

I got held back and told time and again

I was a loser,

a mistake

and damaged goods

My whole LIFE has been ruined

I’m 62 now

And I have nothing to show for that.

I cannot go anywhere or do anything

See if that doesn’t make YOU angry

I am on kidney dialysis

I have a large lymphedema lump on my left inner thigh

I could die at any time now

Because I have end stage kidney disease

I do believe in Jesus Christ and I do pray every single day

I do forgive when people are sorry, truly sorry

Forgiveness is for those who are truly sorry,

not for those who are not

You, Mary White Karen, do not know me, so sit down and shut up.

I blocked you

And I will block anyone else who comes at me with that kind of

cruel judgmental

condescending

ableism.

Thank you

and have a nice day! 🙂

A 5:19 AM POEM BECAUSE I CANNOT SLEEP ANYMORE THIS MORNING

I cannot go on this way.

Feeling like I am a

third class

wrong

sub-human

all the time.

Feeling like I still

constantly

have to

apologize,

for just being me.

Feeling like I am always just

fit in to other people’s

very tight schedules

No one wants

to be around me for too long

Because I am so wrong

I’m tooo much of

a bummer

and Debbie Downer

in their world

I’m a mistake

A fucking

M I S T A K E

God should have never created me

I am Never able to

see the ocean or Pismo waterfront

anymore

the beautiful sunsets, clouds and rainbows

or even the 101 freeway

Today I have no extra money

to turn around with

or

to even save up for a rainy day

I am deep in debt because

what I get from

my late father’s

Social Security Survivor’s benefits

is not enough at all

for me to thrive on or even live on

I have never been able to work

due to my

mental disabilities

the lymphedema I developed in 2005

my autism

the

large

lymphedema lump

on my left inner thigh

and now end stage kidney disease

most in my family

have even thrown me away

My life has been

One long string of

Disappointment,

rejection

and

trauma after trauma after trauma

due to being

always misunderstood as a Behavior

and also thousands upon thousands

of unmet, unachieved

dreams and goals

I have had for my whole life

of being able to see New York City

and the whole Northeastern US

As for people

People still

Harshly

take their moods out on me

talk snotty to me and

any old way they want

and expect me

to smile, take it, and go away quietly

some still even hate it

that I make my noises

and

that I still get hyper-excited over shiny hair

many people get to know me

and then I am taken advantage of

and when I present too many problems

they cruelly

yell at me

and then they

throw me away in the garbage

I feel as if I am never going to be okay

that I will never be good enough

in other people’s eyes

that I will always live a life of poverty

till the day I die

I’m just a burden

And a problem

and

I cause

too many problems

for others

My meltdowns are inconvenient

I am all wrong

Broken

Faulty

Just the fact that I

even breathe the air

is wrong

and a sin

I tell them I’m autistic

which I am

very much autistic

and that I

am hyper-sensitive

and

have very real sensory issues

with

changes

and even having people

just walk out of the room abruptly

without letting me know why

they are leaving my space

and it doesn’t matter

they still cruelly tell me

I am

using my autism as an excuse

or worse yet

that I am faking it

None of you

who expect normal from me

know

how much or

how deeply this hurts me!

Well…..

I am not able to do your normal

I do not have the filters to do

the normal

at all

that y’all want from me

I am unable to stop repeating myself

I am unable to stop dwelling

on all of this neurotypical

unpleasant shit that comes at me

24 fucking 7

I am tired

of all the unfulfilled dreams

still going unfulfilled

and I am

Fucking tired

of all y’all

wanting me to be any different

than the unique goofy silly

traumatized me

I know how to be.

If I cannot find people in my life

who will

not only accept me,

but embrace my all

both the good,

bad, and ugly

and goofy silly too

I have no more business being here

No, I will not ever harm myself

However, I am in a constant state of

feeling like packing my blue Davita bag

and running far away

precisely because

of the glaringly apparent

major disappointment I seem to be

to everyone around me.

Picture is of a cloudy stormy late afternoon at the Port San Luis Avila Pier. There are mountains, clouds, sky, and ocean.

Another Open Letter To My Family

I am not proud of many things I did when I was younger growing up in my family.

I apologize to everyone in my family who I have ever hurt.

It was reactionary.

And some of the things I did were awful.

I had to survive. I didn’t have the tools to do it how my family wanted me to. I only had the tools I had and knew how to use.

In an environment where I felt ganged up on 24/7, where everything I did, said and was, was wrong and then picked on, judged, yelled at and punished.

I was seen as not mattering much at all to most of my family.

I had to survive in that environment somehow.

I would do things to lash out to try to get them to stop, let up on me.

And

It hurt. It hurt to grow up a Fields.

The hurt turned into so much unresolved anger.

And oceans of unresolved Complex-PTSD trauma.

Today I am ostrasized from most of my family who never got it that I am autistic. Who still don’t get it.

Even so….I am deeply deeply sorry for all of the things I did in that place of systemic hurt that hurt members of my family as we were all growing up.

I am not sorry for being me though.

I am not sorry for how fascinated I still get over shiny hair and rainbows.

I am not sorry for the goofy weird noises I make. I love the “chestnut” noises I make and my bull moose noise.

I am not sorry for all of the long letters I wrote to my aunt. That were all ignored.

I didn’t just need her financial help, I wanted her love and support. She is my aunt, and there’s a part of me that still wishes she would just ….care.

And I am not sorry for going online to tell my life story for the purpose of support and education.

And for the purpose of hopefully finally reaching those in my family who have never accepted me, to finally see, hear, understand, and accept the me that I have always tried to be, and that I am today.

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

May be an image of text that says '"You own everything that happened to you. Tell your stories. If people wanted you to write warmly about them, they should' ve behaved better. -Anne Lamott'

To My Family, & To All Who Have Made Me Feel Like I Simply Should Have Never Existed

To my aunt, and to my family and all of you who have wrongly dissed me as broken, a monster, and a mistake….

I follow the blog of a neurotypical—non-autistic—mother, Jess, who has a beautiful 19 year old autistic young daughter named Brooke. The blog’s name is Diary Of A Mom, and you can find their blog on Facebook. Below you will find a link to a post she wrote just this morning which really resonated with me….and yes, I am weeping, crying, heartbroken, because of how this could have been me when I was growing up in the Fields family…..

This mother and father—his name is Luau—as well as Brook’s older sister Kate—-all love—adore—their autistic daughter / sister….and have done all in their power to make Brooke feel unconditionally loved, welcome, to have a healthy self esteem, and to thrive as her authentic joyous bubbly autistic self. Never have they ever felt Brooke was an embarrassment or “too much” to handle.

Brooke was, and is, fully accepted in her family and her community.

To those in my family who I know reads my blog here on WordPress….if you do nothing else today, please read my words and the words posted by Jess from Facebook page Diary Of A Mom….

Firstly, this is what I wrote when I posted DOfAM’s blog post on my wall this morning:

“This, 2000%, to everyone who has dissed me, squelched me, bullied me and taunted me for being what I have come to know is the *VERY* cool different I am.

Yeah…I’m talking to those of you in my family who made my growing up years a living hell—-just for being me. What a life of hell, want, need, missed opportunities, financial security and loneliness I have lived hating myself so much I find myself always praying that God will take me in my sleep because you have all thought I was an embarrassment, wrong and broken…..and a literal mistake.

This includes three of my siblings, my aunt, my cousins, my sister in laws, nieces and nephews who also both look down on me and hate me for being who I am.

I am still battling all the internal ableism and self-hatred from my childhood in the Fields family.

I am literally shunned by my family. Even today.

To the school bullies I also had.

This, to all of you who have made me feel so little, so small, and like I took up way too much space just for existing as my authentic autistic self.

But to those of you who have made me feel seen, heard, valued and human, my mother, sisters P and R, Connie, Natalie, Cheryl Ackerman, Shari R., Dr. Clarke, Dr. Poonia, Angel, Lauren, my Facebook friends….thank you. I treasure each and every one of you. More than I can express.”

Here is the link, below, to today’s Facebook post written by Jess, Diary Of A Mom….please, I implore you, read it with an open mind and heart….

https://www.facebook.com/adiaryofamom/posts/pfbid05NWjbLV7H1DT8vbcGd4CpHNzAuNNSQLPMxHwnfNqKE7qFkWkBBCtnkyAvjHh1GBMl

In closing, I now have end stage kidney disease, and have been on in center hemo dialysis since July of 2018.. In June 2018, I was rushed to the hospital, weak, very dehydrated, with full-blown Type 2 diabetes and sepsis on my lymphedema leg lump.

I would have died had I not gone to the hospital. I spent three weeks in the hospital from June 16, 2018 to July 4, 2018, recovering from the sepsis and waiting for a chair at my local Davita kidney center.

Today, some of my kidney function has actually returned, so I don’t have the diet and fluid restrictions that many with CKD (chronic kidney disease) have. I never did have the diet and fluid restrictions—and I still pee like normal. I still take my vitamins daily, and now mostly eat home cooked meals, so I am feeling nearly healthy again.

I reached out to one of my sisters to try to make peace with her shortly after I got diagnosed with end stage CKD, and my mom has told all of my other family members about my CKD.

Other than a long letter from my sister—-who still has me blocked on Facebook as of today—-telling me that my being bi-sexual, queer, and nonbinary is a “choice” when I know it is not, plus the daily contact I have with my mom and the sister who lives with her, plus occasional letters I get from my other sister who lives in Arizona, I have not heard from any of my other family.

Any of them.

My eldest brother died in late May of 2018, and even though he never called or wrote to me either, he did pray for me daily and had daily Catholic Masses said for me when he was alive. But his wife, who I once was very close with—- never calls me or sends me any Christmas and birthday cards now. None of my siblings ever call or wrote to me or send me cards of any kind. Ever.

My family has always thought of me as literally a burden, an embarrassment, wrong, bad, defective and a monster.

Three of my siblings legit want to throw me into a nursing home because of how different I am. They assume that I cannot live on my own, when I am able to, because I have the help of two wonderful caregivers, Connie and her daughter Natalie, who happen to take very good care of me.

At dialysis, the way I sing to the tone of the room acoustics and call those noises my “chestnuts” and how I make other unique noises too, plus how I love the “aqua shine” prisms in the nurses and techs shiny hair, and get so excited about their shiny hair….everyone there loves me and my unique noises and my love for shiny hair.

Everyone at my dialysis clinic with the exception of two techs and one patient, loves me. They see that I have a deep kind heart and compassion and empathy for others, and a fierce, deep love for social justice. And that I don’t hesitate to call out anyone’s bullshit.

Growing up though? I was always shushed and told I was bothering and embarrassing my family….most of my family never seemed to appreciate the full-on bubbling over with joy autistic me at all. I was never allowed to play in my sisters’ hair….and would even get yelled at and hit if I kept up the “abnormal admiration” of their shiny beautiful hair.

I was punished for admiring my own shiny hair. My father even threatened to give me the same buzz-cut he always gave two of my brothers if he caught me looking at my hair and playing with it.

I ran away several times when I was a sophomore in high school—-to try to get away from my tyrannical father and family, and find a family who would take me under their wing and give me the unconditional love I saw on TV shows like Brady Bunch. That I saw other kids at school had….

Years ago, I used to write to an aunt to try to get her to help me out because I have never been able to work and have instead lived my entire adult life on meager government benefits. I truly felt she would have a real heart for me. My letters were all ignored and thrown away or sent to my mother unopened, except for she did send me money twice: ($300) for car repairs, and then $10,000 at Christmas 2007.

I used the $10K to pay down credit cards and buy a personal home computer, which I badly needed.

I needed for my aunt to actually care though, really care—-about me.

I wish my siblings, aunt, cousins, in-laws, nieces and nephews who hate me for being who I am would read this and finally see how deeply and utterly cut off I feel because of how you have all literally shut me out….

Of my own family

I’m not a monster or a “problem”.

I’m a human being—who happened to be born autistic.

I have a nephew who is also autistic, and a grand nephew who is also autistic.

I’m going to say this too, and I don’t care if it upsets you, but I highly feel that my father was also autistic…and that some of my siblings are also autistic. (My father passed away on February 11, 2000.)

To those in my family who still shun me….you’ve really missed out. On getting to know and enjoy a unique human being.

That’s the sad thing.

I am still here. Alive and breathing. Fully cognizant.

Y’all know where I live and have my phone number.

It isn’t too late to give me a real chance to finally feel like I matter to all of you.

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/f/im-disabled-alone-need-real-hope-again?fbclid=IwAR29y0KqjsHtq53R4H8v-gC-1QkVNmRTbzToatpOk8kR87oTwGB2XzT0I2o

Another October, And Year of Unrealized Lifelong Dreams

A frank talk, okay?

For those new to my blog, I am Autistic and multiply-disabled, and am a semi-ambulatory wheelchair user. I’m also 62 years old now.

And my life today sucks unbearably.

I am not going to do the suicide route okay? But I’m not gonna lie…I am so many levels of hella tired of not living anymore.

I do have suicidal ideations every day because I am in a constant state of thick black depression, because my life is so bleak and lonely and utterly_fucking_boring.

That’s how I feel. I do not feel as though I am living anymore.

Every single month day, week, I just go to dialysis, and then home.

And dialysis is unbearable again because of a mean woman now who is seated two chairs down from me, who won’t stop yelling at me when I do my vocal stims during dialysis. They so far are refusing to move her away from me—and she keeps on harassing me during my treatments!!

I have been given full permission by my kidney doctor, as well as the clinic’s facility admin and the social worker there, to do my vocal stims full-on while at dialysis. Everyone there loves the melodic singing noises I make anyway, — all except for this one mean lady who seems to delight in making me upset.

I try to ignore her, but she is relentless, to the point where I cannot ignore her anymore.

Yesterday, her yelling was affecting my blood pressure. My systolic (the top one) was on the higher end of the chart while she was there doing her yelling at me to shut up my singing.

She’s a bully. They need to MOVE her from me.

My caregivers are gold, but because of the morning dialysis schedule I’m now forced to be on, I have a long stretch of time of several hours every single afternoon when I am not on dialysis, where I am in this house cooped up, and lonely AF for just one person to come sit and watch one movie with me and talk and visit with me.

I am thirsting to take some drives and go sit up at the beach and watch the ocean. And eat good pizza and torpedo subs from Gino’s Pizza in Pismo Beach!

I no longer am able to make ends meet financially anymore each month. Because of my monthly bills and the now sky high grocery prices.

My desktop computer is overheating sometimes now, and I need a desktop computer for my writing and blogging and disability activism. My disability community friends are all online. My tablet is also old now. So is my cell phone.

And I have no way to replace any of them if they conk out. Without these devices, I will be cut off. And even more alone and lonely than I already am.

I am laying awake most nights so worried I cannot calm down enough to get back to sleep.

I have frequent sick stomach spells because of the constant droning anxiety and worry over my circumstances.

I beg God every day to just take me in my sleep.

I need a way out that is going to not just sustain me, but lift me up out of this thick black stagnant trap I am in.

Before I pull every single hair out of my head.

Please!!!!

Edited to add: I have just made a new Go Fund Me page.

What I wrote on my GFM page:

Hi, my name is Melissa. I’m 62 years old, am Autistic, have lymphedema on both legs and end-stage kidney disease. I’ve lived a long life of far too many missed opportunities, isolation and loneliness and have never been able to work.

I spend my days cooped up in a tiny cottage, with no one to talk to and no way to get out to take drives and go to the nearby coast. I get so depressed because I have always loved the ocean, taking pictures of scenery, and watching sunrises and sunsets. I’m a semi-ambulatory wheelchair user, and I have two caregivers who are gold to me, but because of my dialysis schedule and their schedules, on non-dialysis days, I spend all afternoon alone for at least 4 to 5 hours each afternoon.

In addition, what I receive each month from Social Security Survivor’s benefits, is, and always has been, barely enough to live on. Because of rising grocery prices and higher utility bills, I am scarcely scraping by.

My desktop computer, which I use for my disability rights activism, is now four years old, and it overheats a lot. My fear is if my PC breaks down, I will not have any way to replace it, and I need it to continue my work and to be able to maintain my connection to my disability community friends.

My mother and two caregivers are my only support, but none of them can help me the way I need to be helped.

I am so depressed that I cry almost every day. I am often sick due to anxiety and worry, and I rarely have a restful sleep at night. In addition, having to do in-center hemodialysis is literal sensory hell because some of the nurses and staff are not patient with me, nor do they respect my disability accommodation asks.

I want to move to the Northeastern US because I have researched it and would have nearby friends and many community supports that I cannot get here. I would also have better options for in-center dialysis.

I plan to use these funds to pay off some bills so I can fulfill my lifelong dream of living in that part of the United States.

My Go Fund Me is linked here.

https://www.gofundme.com/f/im-disabled-alone-need-real-hope-again?fbclid=IwAR29y0KqjsHtq53R4H8v-gC-1QkVNmRTbzToatpOk8kR87oTwGB2XzT0I2o