Category Archives: Uncategorized

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

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!

My Ode To 4th Of July

I used to love 4th of July

Until I learned

We live on land that is not ours

I used to love the 4th of July

Until I learned

That this country was built by the blood sweat and tears

of Black People forced to leave their home country on boats

to come here to become slaves.

Black People beaten, raped, and forced into

a life of literal misery and hell

I used to love 4th of July

Until I learned how Indigenous People were raped,

fires set to their villages, and millions were

murdered, slaughtered,

and those who weren’t, were forced to give up their spirituality,

languages, and customs.

I’ve learned so much in these past 13 years

And now the rights that have been granted

to women, trans, queer and non-binary folks with uteruses

Have been taken back away again

And more of our rights are on the chopping block

How can I celebrate a day

when in Florida now it is Don’t Say Gay

and banned abortions

when Black, Brown and Indigenous People are still being

mercilessly slaughtered by racist power hungry cops?

A country that puts the love of guns over human lives?

A country that rewards the rich and wealthy and corrupt

But crushes the rest of us, including Disabled and Elderly People?

A country that allowed evil Trump to sit in the Oval Office?

A country that has not learned to confront its many sins and atone

for those sins?

A country that has allowed a great new divide to happen between

Red and Blue and literal cruel authoritarian Trumpism?

I used to love 4th of July

Until I learned the ugly truth.

Holding Space

Thirty Days of Autism

As adults we must hold space for young people, and nurture their sense of identity and caring for the world, so that there is room and opportunity for all their wild and wonderful imaginings… and so they can make the world their own.

The future is not really ours to be imagined – it belongs to our children…

Stay grounded
Take the one next step
take it firmly and with confidence
this is the part we can control…
with deliberation

Deliberately
liberatingly
with trust
in our capacity
as we hold close
our understanding
of possibility

It is the path of our children
that we are laying down
A holding of space
on a borrowed path
Shared praxis
deliberate space
and pace
to accept them as they are
a liberating place
for our children
to be their authentic selves

Gloriously
joyously
at the helm
self-determining
living their lives
stepping into their…

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Behavior Plan For Parents of Newly Diagnosed Autistic Children

A vitally important read from 30 Days Of Autism By Leah Kelley, for those who want to understand and be a true ally and friend to autistic people. This goes for both autistic children and adults alike.

Do not exploit us and share videos and blogs about our most vulnerable moments, when we are having meltdowns, when we are in any kind of distress. You would not want your most vulnerable times to be broadcast to the world.

It is about seeing our neurology, and our humanity, full-stop.

Thirty Days of Autism

Behavior Plan For Parents of Newly Diagnosed Autistic Children:
  by Lei Wiley-Mydske

Your feelings about autism are constructed by living in a world that fears and stigmatizes disabled lives.  Your distress about an autism diagnosis are most certainly because of these unhealthy messages.  Please remember that your behavior in regards to your child’s diagnosis is a choice.  Signing this behavior plan means that you will always put the dignity, autonomy, and love for your child above buying into the dominant narrative of tragedy or the belief that autism is something that the Autistic person is doing to you.

  • I promise to never use my child’s most vulnerable moments for sympathy or to “raise awareness”.   I recognize that I am my child’s safety net against an often hostile world.  When I feel like sharing, I will ask myself if this is something that I would want others to share about…

View original post 553 more words

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.