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

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