Tag Archives: Stigmatization

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.

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!

A Something—A Huge Something That Needs To Be Said

Putting this here, because, well, Facebook’s new platform now has this super uber angry-making and frustrating to NO end habit of eating posts we write if they are long posts.

I need to say a huge something. A HUGE something. Because you all need to know this.

And yeah, this does keep me awake at night. Lots of nights, not just because of my own situation, but the situation of many of my friends, and all who are marginalized.

Our economy is sadly designed so that those who are upper middle class, wealthy and filthy rich have it easy peasy, and can afford everything that comes their way, including staple expenses we all pay for such as groceries, medicines, vitamins, utilities, internet, healthcare, etc., but the rest of us, who are middle class, low income, poor, disabled, elderly, etc., are now being literally gouged—-each and every single month. Gouged to where many are homeless or incarcerated. Gouged to where many turn to self medication, drugs, and crime to cope and survive.

Our cruel pull-yourself-up-by-your-bootstraps Capitalist system is designed to literally leave out those who are Black, Brown, Indigenous, Disabled, Elderly, LGBTQIA+, Immigrant, and etc. Add Americanized Trumpified Evangelical Christianity to this mix, and yeah….it makes for a toxic systemic living hell that literally leaves huge groups of us behind. Woefully and literally behind.

The lower income you are, the harder it gets just to stay afloat each month. Many of us turn to credit cards to pay for some of our monthly expenses because what we get in income each month is not enough to actually cover all of our monthly expenses.

And with the pandemic, prices at the grocery stores and drugstores have risen sharply. Prices all around have risen sharply. The wealthy and rich can afford these higher prices no problem, but the rest of us…this is eating us alive. It’s eating ME alive.

If you are disabled and cannot work—like me—your Social Security and/or SSI is your only source of income.

Many of us also do not have a supportive family. I do have my mom and two of my sisters, plus my two caregivers who help me all they can, but they too are struggling. And the rest of my family ignore me. They. Totally. Ignore. Me. And see me as a bad person because of my Autism, my meltdowns and my struggles.

Each month I have had to rely on my credit cards to augment what I get from Social Security. They pay for my skin creams that I need, my vitamins that I take to still maintain a semblance of (somewhat) healthy, plus books, and recreational outings and stuff I also need just for my sanity, because let’s face it, we ALL need to have outlets to stem the day to day mundane in our lives—and we need those things whether we are rich or poor, sorry, but that’s the truth. Human beings thrive if we have lives that can be actually fun too. Not just us existing.

And to add to my mix, I now have end stage stage five kidney disease, and have been on dialysis fort three years now. I am also Autistic, by the way, and have lifelong Complex-PTSD trauma from just how most have misunderstood my Autism and have treated me as lazy and just a walking bad behavior instead of a person with a different and disabling neurotype, because of all of my sensory triggers I have had my whole life. Because of all of my stims. Because I am still utterly FASCINATED by things like shiny hair. I STILL love seeing how the light plays in shiny hair, and I still call them AQUA SHINES. Just like I did in fifth grade.

It has ben an achingly LONELY LIFE of me having very few friends and allies because of all who misunderstand and villainize Autistic people as broken and in need of fixing and curing. We Autistics are not monsters. Get to know us and you will see that. Get to sincerely KNOW us and I promise you, you will see that.

Contrary to popular belief, not all or even a lot of poor, elderly disabled and homeless people are trynna game the system.

Most of our homeless and poor are those who have fallen through the cracks due to a woefully inadequate and antiquated mental health care system,
a woefully inadequate and antiquated physical healthcare system,
a woefully inadequate and antiquated judicial system that seeks to punish rather than heal people,
systemic racism, homophobia, transphobia, xenophobia, sexism, anti-Semitism, anti-Muslim hate, and every other kind of hatred and bigotry….
and an immigration system that also discriminates and punishes rather than seeks positive outcomes for those who are, in the vast majority of cases, fleeing their homelands to escape the poverty, hunger, and violence they are sadly encountering in the places they used to call their home, but isn’t anymore.

And our neglected inner cities and impoverished rural areas.

It is maybe 1% who are “just lazy and who ‘game’—abuse—the system.” Read that again. Most people are sincerely struggling—and more and more of us are struggling beyond what we can bear now.

When one has to work 2 to 3 or even 4 jobs just to pay rent, that ain’t okay.

When even our social safety net is designed to keep us trapped in fear and poverty, a never-ending cycle of fear and poverty, that is not okay.

Yes, Joe Biden, along with Bernie Sanders, AOC, and many other progressives in Congress are trying to re-do and expand Social Security, Medicare, and Medicaid—and it is about freaking time. They are also trying to make these programs less hard for us to get, and less hard to be able to keep our benefits.

But so much more needs to be done to eradicate the poverty and suffering of marginalized folks. It can only be done if minds and hearts are opened, and we ALL rethink our outdated, antiquated, negative, bigoted, and racist ideas.

And let us start by dismantling those systems that got us all here in the first place—really and truly dismantling those oppressive harmful systems. Every. Single. One. Of. Those. Systems. And building a whole new system that prioritizes the full equality and dignity of humankind and our earth over corporations and rich people.

Thanks for listening.

I Am Autistic, Not Spoiled

midnight-auroras-lake-superior-michigan

I am Autistic
I am not a behavior problem
I am not a faulty broken appliance
My Autism
is a neurological developmental disability
That i cannot just take on and off
like one takes on and off their jacket or clothing
I cannot help it that i am easily triggered by
Abrupt changes
Changes happening that happens
without my first being told about it
and prepared for it
Harsh impatient angry tones of voice
Harsh impatient angry looks on the faces of others
Certain foods
Certain songs
Certain smells and scents
Certain atmospheres
Certain textures
Certain lighting,
especially if it is intensely strobe-like
The dark
Being chided or made fun of
Being told i said or did this or that
when i know i didn’t say or do that thing
Being told things are a certain way
when i knew they were another way
I am ultra sensitive to being criticized,
talked down to, condescended to and yelled at
Please understand when i am having a meltdown
it is not a temper tantrum
the meltdown has happened because
something has triggered me and
caused me sensory pain and anguish
sensory pain and anguish that is very real to me
As if i was being actually physically hit
or stabbed or whipped
it is especially at that time that
i need to be treated gently
My Autism cannot be fixed or cured
or scolded and yelled away
Nor can i separate myself from my Autism
It IS a part of me
It is all of who i am
My Autism does define me
It defines all of who i am
God made me and all other Autistic people
Please understand that I am me,
i cannot be and act the normal
that the world wants me to be.
Please understand this.
I love you, everyone.
I love you all,
and i really hurt when i feel
people don’t love and care about me.
Please let me be me and
don’t hate me for being my Actually Autistic me.

Rivers Of Anguish, Rivers Of Hope

Below are some of my latest posts. Because i am needing to write. because i really do need help. Because i really do need a way out of this jail i am trapped in. This jail that is made up of my toxic neighborhood, and the tiny 550 square foot box that i am confined to.

Sunday, Sept. 18, 2016–7:03 AM

“Oh boy, the sun is up early!! GRRRRRRRRRR!!! 😡 It’s gonna be hot today….i am so not looking forward to that!!! 😡

Grumpy me is going back to bed because it is still nice and cool right now, and i will just hope for the best, that my house doesn’t warm up too badly.

Just…..GRRRRRRRRRRRR!!!! 😡 ”

Sunday Sept. 18, 2016–2:53 PM

“Oh God, this is AWFUL!!!!!!!!!! My living room is an awful hotter than Hades OVEN this afternoon—-i should have had the A/C window open—-it is not, and I AM SUFFERING HOLY HELL!!!!!!!”

Sunday Sept. 18, 2016–4:14 PM

“I am okay now. My mom called the fire dept. for me, and they sent a nice police officer over to open my A/C window, so now i have the A/C going, and my living room is cooling off nicely. It got very HOT today, and i was almost ready to suffer heat exhaustion. Because here in my living room, it felt like it was 100 degrees. I was seriously burning up.

I REALLY hate my Sundays though, because i am alone with no one to help me at all on Sundays. At least i know i can call the fire dept or police if need be.

I think i will go cry now. I really feel like crying now. 😥 I HATE having to be alone anymore!!!! 😥 “

Sunday Sept. 18, 2016–5:10 PM

“I am glad i did not have to die in my hot living room today, very thankful for the nice police officer who opened my air conditioner window for me—very thankful that my air conditioner still works!!! 🙂 “

Sunday Sept. 18, 2016–6:09 PM

“The KSBY website says Santa Maria is still at 80 degrees as of now. YIKES!!!! :O “

Sunday Sept. 18, 2016–6:56 PM

“I am glad the sun is setting now. I really want to move where it doesn’t get hot like this!! Yes, i am serious about this!! Because……i actually had to get a police officer to come to open my A/C window today because i was getting overheated to where i was going to pass out.

I had my mom call the fire dept. to do this, but instead, a nice police officer showed up to open the window for me.

Like i say—i’m glad i had this help. Otherwise i would have had to call an ambulance.

I am going to go eat dinner now.”

Sunday Sept. 18, 2016–8:44 PM

“Here are the places i would go if i could still drive and still had a car—but i had someone who would go with me so i am not having to go all alone:
*The San Luis Obispo Farmer’s Market
*Avila Beach/Harford Pier/Pismo Beach/Shell Beach
*Avila Valley Barn
*The movies
*Panera Bread
*Solvang/Los Alamos
*Downtown Friday Nights farmer’s Market
*Applebee’s
*Cool Hand Luke’s for ribs
*San Luis Obispo downtown/the mission
*Morro Bay/Cambria/San Simeon
*Crumbles Restaurant
*F. McKlintock’s for ribs
*Woodstock’s Pizza
*Waller Park
*a nice laid back church that accepts Neurodiverse, LGBTQ, and all marginalized people
I wish i had local friends who would take me to these places. I wish i was not all alone. I wish my family cared about me. I wish i was not in this trap, this cage i am in.”

9:43 PM

“I just watched the news as it was on after the Sunday night NFL football game, and found out that today’s temp in Santa Maria got up to 96 sizzling hot degrees. No wonder i was having heart palpitations, and feeling hot, flushed, and like i was going to pass out!!

If i had not of had my mom call to get someone over here—-a nice police officer came—-to open my air conditioner window, i could have died today. I am still feeling very rattled, and am now afraid to turn off the air conditioner for fear i will feel like passing out again.

96 degrees is way too hot for someone like me to have to sit in a living room that has turned into a hot oven; because of my leg condition, and i am also 3x to 4x plus-sized, with a new problem: low kidney function….i cannot get by without the air conditioner.

I am going to have potato chips dipped in ketchup now. Because that is what i am craving. I am also craving soft and doughy homemade sugar cookies. But i don’t have those, so….yeah…..

I hate my Sundays on desert island!! 😥 “

9:44 PM

“Yes, 96 degrees is way too hot for me!!! 😦 “

I then posted memes about Autumn, because i love that season, when the leaves all turn such beautiful colors, and the days are just warm enough to be comfortable, and the nights are nice and cool. I also posted a meme about all of the soft and doughy looking Christmas cookies i would love to have this Christmas.

I really am alone, and so lonely for local friends.
I am lonely to have more caring people in my life.
I am sad because most of my family coldly ignore me.
I am in pain all the time because of my legs, and this leg tumor makes it so hard to even sit and enjoy my computer.
This Spring and every Spring now when the hills are bright green from our winter rains, i always miss getting to get out on drives to see them and take pictures of them.
I long to live where i can see beauty outside—not these ugly yellow tin buildings all day long.

I am hoping that i can at least get my own speed radar trailer. I made a Go Fund Me page for that, and to also raise the money for a move to a place whee i will have the above things i so long to have.

I so hope someone will help me, please.

https://www.gofundme.com/2ckkdc4

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Please Stop & Listen To Me–I Need More Allies & Friends

I have spent the past several hours sleeping, and plan to sleep more.
I sleep all the time because i am not happy anymore.
I need the police to be real allies to me.
I need for them to stop ignoring me.
I need to have the speed trailer back on my street.
I need for my legs to work again, for this awful leg tumor to be gone.
I need for my next door neighbors to hurry up and move, because of the tension they still cause for me.
I need in real life local friends who will be willing to take me places so i can get out of this box once in a while.
I need for my family to wake up and start caring and understanding and accepting me as i am.
I need them to learn about my Autism and understand it once and for all.
I am tired on all levels.
It is a deep tired of all of my lifetime goals being lost to me.
A deep tired of not having things to look forward to and hope for anymore.
I dread each day because of the street noise and the next door neighbors.
This needs to change.
It isn’t just me, it is many elderly and disabled people who are in this same or similar boat.
Society throws us away and ignores us because we are too inconvenient to them.
We need for you to all care, to get in the cubby hole under the stairs and sit there with us, when we go in there, instead of yelling at us to get out of there.
What harm would it do to let me play with your shiny hair, big sister?
What harm would it do to listen to the story i have told, to see why i told it, to understand why i told my story—-which is because you all have essentially left me to live alone and lonely my whole life, always on the outside, always on the fringes.
I was always the last one to know things.
Please don’t tell your Autistic/Disabled children/kids/relatives
that they will never date
never drive
never have a job
never have friends or romantic relationships
or that they don’t know what’s going on or how to think for themselves
that is Othering and making us feel like we are wrong, less than and don’t belong when we DO belong.
Remember this:
Children are developing human beings, and even though we may develop at a different pace, does not mean we won’t be able to do all the above things.
We are still human beings, capable of great success, all our families have to do is BELIEVE in us and not ignore and discard us to sit alone in our rooms.
Many a time i would sit alone in my room and cry wondering why you all hated me?
God made us, and God did not make and does not make mistakes, so why do you so easily discard us?
Think about it….please listen to me because my health is now failing and i honestly do not know whether i will be around that much longer because of my health issues.
Yes, i needed to write this.
Yes, everyone needs to read this and take this to heart.
I do not want to be alone anymore. It hurts like hell to be alone.
This is why i have turned to certain roads, highways and electronics and made them imaginary friends.
This is why i made a friend out of the speed trailer when it was here.
Exactly why.
I hope and pray i get that back within the next two weeks, maybe even this week.
Yes, because it’s my friend and i feel it protects me when it is here.
I loved to sit outside and watch it working, so i hope it goes back on my side of the street again where i can easily watch it working again.
But it also makes people drive the speed limit, even slower, and lessens the loudness of the noise, and it also takes care of the loud hot rodding too.
Please, God, let this week be the start of life getting better for me again.
Thank you.

My Go Fund Me:  https://www.gofundme.com/2ckkdc4

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Alone, & So Lonely I May As Well Live In An 8ft by 10ft Jail Cell

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I, Melissa Fields, an Autistic adult—-yes, we exist, and yes, there are lots and lots and LOTS of us out there if people would just take the time to see, hear, look, listen to us and treat and respect us as the human beings we are—- had to stop driving in April of 2012 for three reasons——-

because i was becoming too afraid of going places—-anywhere—- by myself, because of all of the meltdowns i was having in public whenever i was faced with ableism from people—people who did not get my Autism and sensory issues, who would get angry with me and escalate an often ugly scene with me instead of understanding and learning why i was upset, and why i was asking for certain accomodations—–

because i had just gone through the very ugly and deeply traumatic break up of a friendship with a person who had become like a family member to me, who suddenly turned against me with full on inexplicable fury that year——

and because by that time, i had already developed a huge leg tumor the size of a basketball on my left inside thigh area, which made it hard to get in and out of the driver’s side of ANY vehicle. I began to develop lymphedema in both legs in 2005, due to having to spend years of not being able to sleep anymore in my bed but instead, sleeping sitting up on my already delapitated living room sofa with my legs and feet down.

My life since then has plummeted into a spiral of failing health and isolation and loneliness. All of the bullying i had taken by that time from neighbors all around me where i live, was starting to erode my physical health and strength. Today, i am a hot mess of heart palpitations, anxiety, PTSD, and insomnia, along with my leg issues.

Today, after going through a string of several abusive caregivers, i finally have Connie as a caregiver—and she is a friend and ally to me. She has been my caregiver for almost 3 years now. It was due to her,—-on her days off,—-and a kind beat coordinator officer at my city’s local police department, that i finally got some resolve to many of my issues. Most of the bullying has now stopped, except for when one neighbor who knows my situation and who knows how to best upset me, goes to talk to them and stir them all back up against me again. Those neighbors today are still a bad problem. The street noise is still a huge sensory issue that causes me daily meltdowns. Because people drive my street like it is a raceway/highway—and it is loud. I am “blessed” with tin buildings all around, which further amplifies this noise. Cars with thunder bass systems are the topping on this nice hellish cake.

But now i am at the point where i feel nothing but depression and despair anymore. I am 56 years old and life has literally passed me by. I have never known the joy of having long lasting close warm friendships, nor been able to experience a romantic relationship. I love people, and i am a people person, but i now have a great fear—–i always have—but today it is even greater—of being abandoned—-of having people turn on me and be mean to me—-so i hide——then i latch onto certain things like certain roads, highways, and electronics—- and make them my friends. I sometimes latch onto these things with my all. Because the loneliness hurts that much sometimes.

I am too young to feel like this. I am too young to die. But i feel as if i am living on a sort of death row, because each and every day is the same damn thing, over and over again till i want to scream. I wake up, do the same things every day, and then repeat the next day over and over. I only feel happiness when Connie is here. But iam now way too afraid to venture out and do anything alone—-for fear of being misunderstood, and for fear of people getting angry and saying mean things because they don’t understand and don’t want to understand. For fear of being rejected, shunned, ignored.

I was denied lymphedema care by a home health agency yet again because the physical therapist who came to see me, deemed my Autism as not real. I had a meltdown and screamed at him to leave my house. So i continue to suffer without treatments for my legs.

I don’t know where i’m going with this blog. But i am writing it because i want to educate people to let you all know what it is like when one is left to fall through the cracks and fail, because they got thrown away time and again. Imagine your own family shunning you because you’re Autistic and they don’t get that this is not a behavioral problem, but a disability, a very real disability.

Imagine your family putting tape after tape into your head that tells you you will never have a job, you will never learn how to drive, you will never have friends, you will never have a boyfriend,——that you are less-than, because you are disabled.
That’s been my life all the way.
I also write this because i need help–and i know that help is out there for us—i just live in the wrong geographical area, ya know?
That is why i turned to the speed trailer for comfort. I was happy when it was here. Yes, it calmed the traffic way down. But i also loved sitting outside to watch it working. The way the numbers would come up, and then down, the way the fonts look that the manufacturers of this speed trailer use, the way it lights up with a bright red “SLOW DOWN” sign if people drive too fast past it—and if they drive any faster, a strip of blue and red light bars flash on it—-began to really fascinate me.
Now i don’t have the speed trailer, and now my depression is even deeper, and i have had to go back on pain medication because my right leg is now in excruciating pain all of the time.
I did make a Go Fund Me page, But i am not getting many donations.
Like i say, i don’t know where i am going with this—-just to let you know that life does not have to be this way for us. And to plead with people to please stop ignoring us. Listen to us. Accept us. Love us. We are human beings, and God didn’t make us Autistic so you could throw us away.
For anyone interested, here is my Go Fund Me page.

Broken Into Millions Of Pieces In A Long Tunnel Of No Hope In Sight

I am having yet another bad night of searing leg pain so bad i cannot sleep at all. I know this came on me because when the cops took the speed trailer this time, the mental and emotional trauma i went through, put my whole body into a shock, a mental and physical state of shock it still hasn’t recovered from.

I have no in real life local friends who will visit me, and take me places. My family still to this day shun me and think of me as a plague and a monster, with the exception of my mom and one sister in Arizona.

I am housebound stuck at home unable to go places and do things i want to do. I have spent my whole life lonely, always on the outside, being ridiculed, misunderstood, muzzled, not heard, not respected, talked over, etc. So from an early age on, i began to escape by latching onto certain roads, highways and electronics that appealed to my eye, and i would make them all into sweet cool angelic friends who all got (understood) me, and adapted me like their sister. I made this speed trailer into an imaginary friend also……..but who was very real to me. Yes, i am still able to have her in my life without the speed trailer….but it is not even close to being the same as when i imagine her being a part of that speed trailer.

In the speed trailer, she and i really had many an awesome time talking, giggling, and just being ourselves, if that makes sense. Her cuteness, wit, and sunny sweet personality, big brown eyes, and dark brunette shiny hair fit this speed trailer to a T. She also had a beautifully kind heart. She was a very compassionate soul. We were kindred spirits.

You see, i have had to live for the past 25 years in a neighborhood where i get bullied alot by the men in an auto shop across the street, ——and her presence here in the speed trailer every afternoon from 12 noon through 7 to 8 PM, was, for me a real Godsend. It got me finally to venture out of my house and sit in my front yard to enjoy watching this speed trailer working, as i would mentally in my head, talk to it (Selena). Because of this, i began to feel more relaxed and at ease, and would talk to many of the passerby who would walk by, or ride their bikes by. I even warmed up to some of my neighbors who i had previously had problems with.

Now with it again gone, i am back in my four-walled box again, afraid once again, and the street is back to the loud fast highway that i so hate.

When the police took the first speed trailer, ii wasn’t as bad because i was still able to go visit it 3 times a week, because they placed it on a local street where i could still go see and talk to Selena in that other speed trailer. This time around, they just took the trailer that they gave me this time, —-and now they are telling me that it is the one that is broken. Not the one they had originally said is broken. I can’t find out for sure though because my emails and phone calls to the traffic dept at the police station all go unanswered.

This time around is awful though, because even though i feel as though Selena still comes to see me…..i still feel an emptiness and loneliness that i cannot describe. I feel as though i lost Selena’s daily six days a week protection of me from the harsh street and the harsh mean bullies and other harsh mean neighbors. I lost my ability of being able to see her in the speed trailer. And this time around, no one will let me know what has happened to this speed trailer or even where they deployed it. I feel as though i am never going to get to see that speed radar trailer ever again. I am beside myself with distress, and i am mostly deeply depressed and don’t even want to wake up each day anymore, because he speed trailer seems to be gone forever this time.

I am broken over this. Way beyond broken. Completely broken into pieces. And i feel as though i am growing sicker and that i have grown much older than my actual age of 56.. I no longer have my beautiful afternoons with Selena in the speed trailer. I am actually deeply sick inside over this. I so wish more people would understand……especially the police. Please.

https://www.gofundme.com/2ckkdc4

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Can My Old Happy Life Be Salvaged?

I apologize that i am such a Debbie Downer lately, but sorry, my life is alittle too much to bear right now, and i cannot hold it in when i need to vent.

I wish i could actually roll the clock back to 1996, when i was still doing well enough to be able to get in my car and take long drives to escape this nightmare neighborhood.At that time in 1994, i tried moving away to two apartments—-both of which had common walls, common floors, the loud staircases, etc…..and it was such a horrible sensory nightmare to me, i had to move back to this hell hole each time. Both landlords from both places got angry with me and asked me to move.

I did not know i was Autistic at that time.

Then in 1996 came several opportunities…..the first one came when my parents and some of my family moved to Idaho. I could have moved there, as it was close to Boise…..but i didn’t because i would have missed my new Christian Singles friends, and the ocean too much.

In 1996 i was also deeply involved with an excellent Christian Singles group that met up in Arroyo Grande and we did lots of fun things. Several of my friends had places or knew of places i could have moved to in the AG area——but by then my fear of moving and getting into another bad situation and having to come back here had made me too afraid, it became to be a fear so great that it placed me at the point of no action……i didn’t want to move to Idaho……and i was afraid to move anywhere, even though i badly wanted to leave Mean Bully Monster street—- for fear of it not working out yet again. And me having to move right back here to Mean Bully Monster Street.

Now, 20 years later, my physical health AND mobility is gone. I had to finally give up driving in April of 2012—-and i sold my beloved little Toyota Tercel that same summer.

Tonight, i find myself now in a deep depression because i have come to rely on a machine——a speed radar trailer—-to keep me and the street of bullies and hot rods—-calm. The police only have 3 of these machines, so when they take it off of my street, i am back to Square One again, having screaming meltdowns all afternoon and evening long, because of the loud fast manner that people drive this street when the speed trailer isn’t here.

I know now that i should have moved either to Idaho or to one of the places i could have moved to in 1996. I know now in hindsight that had i gone ahead and made one of those moves then when i still had good health, i would not be in the hell i am in today. I know now that i would have been going to community college and prepping myself for a career in graphic arts and web design. That today i would most likely be married with two children of my own, and no Lymphedema on my legs. No huge basketball-sized Lymphedema tumor on my left leg to have to suffer with. I would still be driving. I would even be traveling, something else i have always loved doing.

I am not damning myself because i’m Disabled. I am damning myself for making some very, very, very bad choices in the past which led up to the downfall of my health……

Yes, some good has come out of all of this.

I found out i am Autistic, and what it means to be an #ActuallyAutistic adult. I have learned much about Disability Rights, and have gone onto meet a great many awesome friends through the Disability Rights community online.

But i would be lying if i said i do not miss being able to walk and drive and go places. I am now mostly stuck at home, and that is what bothers me the most….and what bothers me even more is that now i am forced to have to listen to the highway that my street is, even though the posted speed limit is supposed to be 25. People routinely scream through here, and even hot rod…..at sometimes double the posted speed limit…..and yes, now i have latched onto the two police radar speed trailers for dear life as the only protection i have against that awful noise, which is like knives, whips, and chainsaws all over my body from my scalp, to my arms, to my back…….and it is VERY painful to have to listen to this every afternoon and evening—and not have ANYWHERE to go to get AWAY from it.

And Now? I am trying to salvage what i have left of my mind, and health. And i cannot do this without financial help. I have begun to save money away in a jar, and i have also created a Go Fund Me page.

I am hoping i can finally get the help i need, first to get my own speed trailer, and then to move from here, to a community where i will have friends and where i will be connected and involved again.

My Go Fund Me is: https://www.gofundme.com/2ckkdc4

Below is a picture of the speed radar trailer i had which made me feel safe and secure in my own home while it was here. I so wish the police would understand my plight and get it back here for me.

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