A New General About Me, Because These Things Need To Be Addressed Again

A general about me:

I am autistic and I am almost 64 years old. I am going to be autistic till the day I leave Planet Earth.

My autism is what makes me the me I am, and I am proud of the me I am, and the me that I have become today.

My autism comes with numerous sensory sensitivities, not because I am trying to be difficult or extra, it is because certain noises or environments are things I literally am unable to handle because they represent for me, actual pain.

I’m not saying don’t paly your nice bass-y sound systems during a car show, just don’t have it so loud it vibrates my inner organs from even 100-200 feet away, in my own living room!

Being around for almost 64 years has been long enough for me to learn to know my body, which includes my mind and how I process, react, and deal with the world outside of me.

When I say a something is an issue, it really is. Please don’t belittle that! Or me!

I KNOW what I CAN and what I CANNOT handle. I do NOT choose to be any given way that I present myself to be, it just goes with being both autistic and quite traumatized, thank you.

I have never liked noises that overpower my body.

I have never liked being left all alone for too long.

I have never liked being relegated and confined and cooped up.

I have never liked being told one thing and then things go differently without there being any notification of these changes.

Abrupt changes send me into hell.

Rude, harsh, abrupt people send me into hell.

People rushing me sends me into hell.

People jumping to the wrong conclusions about me sends me into hell.

Especially when they won’t let me explain before they pronounce harsh judgments on me.

People giving me the “Just think positive! For every negative thought, think of two or three positives in your life,” I ALSO cannot handle. It is dismissive, so dismissive, and just reinforces how wrong my family always thought I was growing up.

People labeling me or judging me, or talking over me, and not listening to me, sends me into hell.

People giving up on me sends me into holy hell.

People expecting me to do their normal sends me into hell.

I have a heart so big that when I see others hurting, it overwhelms me to a degree where I do not know what to say, how to comfort them and be there for them.

Others’ Big Moods and Big Feelings, I feel so hard and so deeply it often scares me, and I will run and hide from you. It’s because I don’t know what to do for you in the moment.

It ain’t because I don’t care.

Patience comes hard for me. So does compromise. I try, even so, to have patience and to compromise, but I can only go so far with that, until I can’t anymore because I have reached an actual wall where I can’t go any further with that.

I DO meet y’all halfway, and I do so every day I live and breathe.

I often come across as self centered or even selfish, and that is NOT who I am, but many who don’t know or don’t want to know about what makes me this way, will just assume I am this, and walk away and throw me in the trash.

I have deep-seated abandonment and Rejection Sensitive Dysphoria because of how I have been treated most of my life.

I have loads and loads of anxiety along with those abandonment issues, so when I don’t know what is going on, and, say, for example, people are late getting to me, this anxiety will automatically spike, and build and build up to a point, leaving me wide open to having a meltdown.

I had recent caregivers who made it their daily mission to purposely come late, and they would turn off their phones and leave me here hanging wondering when I was going to get my breakfast, or when I would get to eat dinner, and then, at the very last minute when I would turn into a screaming mess —- suddenly they would turn their phones back on and they would communicate, and then come —- always after I had gone straight into a screaming panicky meltdown.

My lived experiences growing up in a family who on the regular, lectured, and punished me for not being what they expected of me, always being picked on, scolded, corrected, and made to feel like I couldn’t think for myself, and that I was so many levels of wrong, broken and damaged, has done a real deep number on me……

A real deep number that I am still dealing with today. It’s called Complex PTSD trauma, and no, it often does not heal.

Not when it involved me being rejected and scolded to d3@th my whole life, both at home and at school, and then bullied and mind fucked by several mean past friends and past caregivers too, some of which were real living walking
N I G H T M A R E S for me to have to live through.

My autism is not a thing you too experience, because I literally experience

E V E R Y T H I N G on a heightened level.

My autism is as different as Mac is from Windows.

I am hyper sensitive to being thrown under the bus, dismissed, muzzled, and made to feel belittled and like I choose to be the way I am.

In my living room, it is My Sanctuary. I have my TV sound on in front of me and my music playing on my computer at the same time to the right of where I sit in my comfy lift chair recliner —— because this is my security blanket!!!!

I NEED that, because total silence in my home is a thing that literally terrifies me.

I can literally HEAR the silence in my home, and it scares me shitless.

I always keep my TV and music low enough for me to be able to still hear it, but it allows me to be able to converse with whomever comes into my sanctuary, which is usually my two caregivers. But I do turn them up when I want to enjoy them, and also when I watch my daily soap opera, General Hospital, or movies, which I love to watch.

I cannot turn them off, sorry, not sorry, because again, these are my security blanket and I need my music and TV sound ON so I can function sitting in my living room with nowhere to ever go.

I am also a part time wheelchair user. I use my wheelchair to get around outside, and a cane for inside of my house.

I know I live in a world that is still, even in the 2020’s, not made for me.

But it can change —- just as a Mac computer can work with a Windows computer, when certain codes are created so they can work together.

I keep speaking about my autism and how it affects my ability to handle daily shit, in the hopes people will see and understand and get it that this is a neurological disability, and our autism is who we ARE.

I speak about it so the non-autistic world can someday soon be changed to become sensory friendly and accessible for us, and not just that, but accessible for ALL disabled people.

Some GOOD News!

Yesterday’s dialysis ended up going very well …. after a real clusterf*ck of a start that is.

Yes, it’s dialysis story time again!

It started out with me having to deal with Johann the same exact mean tech who was very rough with me last Weds. Who caused all of my meltdowns last Weds.

So yesterday, she was ….. just AS rough …. just as loud and aggressive …. just as unwilling to listen to me …. and even kept touching my BRAND NEW wheelchair after I REPEATEDLY TOLD HER NOT TO TOUCH IT UNTIL I GAVE THE GO-AHEAD.

She went ahead and reached down to undo the brakes on it for me, when I explicitly told her NOT to.

We got to my seat, and she started in scolding me each and every time I opened my mouth.

Everything I said to her was an invitation for her to scold me like I was a school kid. Everything. Literally E V E R Y T H I N G I said earned me an immediate loud harsh scolding from her.

And at my seat, there was no TV headphone cord, no call button cord, and the huge blood pressure cuff was there instead of the small one I use.

It went sharply downhill from there, with her yelling at me that she had no choice but to work with me.

I turned myself right around and said NO….I am NOT going to treat today either if SHE has to be my tech again.

My nurse, Cheryl, was standing right there, saying absolutely nothing as I rolled myself back to where the weight machines are in the foyer.

Fortunately, my main social worker was back yesterday, so he came and rolled me into the conference room where we talked, and I tearfully pled with him to get her switched out of my pod.

He did. Johann got put down at the very end of Side A, away from me, and I got Elizabeth as my tech, who I DO get along well with.

My entire treatment went great from there. I spent my treatment watching YouTube videos on my tablet. Then General Hospital.

And at the end when I was weighing myself for my end of treatment weigh-in, Head Nurse Angel came up to me with a warm smile and apologized for how she scolded me on Weds, and we talked things out and even hugged tightly.

It turns out she does get me. That Weds was a bad day for her. And she said she does have my back.

I called Larry, my social worker, when I got home, and told him I am done working with Johann and he and Angel both will make sure I don’t work with her anymore.

THANK you, DaVita Kidney Care, for yesterday.

And, Here’s More About My Latest Dialysis HELL DAY That Happened On Wednesday

POST ONE

My open letter to DaVita Kidney Care, again,

Wednesday, March 20, 2024

How loudly do I have to shout it to the world already that I am AUTISTIC and this clinic is

still, after 6 years, inaccessible and sensorially UNSAFE for me to continue

treating there.

I AM AUTISTIC!!!!!! I AM NOT A BAD BEHAVIOR, SO PLEASE STOP THE ABA STYLE

BEHAVIORISM!!!!!!!

STOP SCOLDING ME AND ARGUING WITH ME WHEN I AM IN SENSORY DISTRESS

MODE!!!!!!!

PLEASE, I AM BEGGING YOU ALL!!!!!!!!!!!

Today, some of my team even shut me down and would not let me talk to them

for support when I didn’t have Larry or Kristen there today to support me during

the meltdowns I was having.

Nurse Cheryl and Tech Johann were very unhelpful with me today. And instead of letting me

explain and them being patient with me and willing to fix the things that were upsetting me,

they both argued with me and teased me. That was sensory NO-NO #1.

This all started 1 hour and 35 minutes into my 3 hour and 45 minute treatment, when I

urgently needed to use the bathroom because my stomach was exploding.

My machine took my blood pressure during this time, so there was NO need for Johann

to make me —- with my exploding stomach —- have to sit through yet another blood pressure

right on top of it just taking!

When my shoulder clamp that holds my lines secure to the left shoulder of my shirt

got loose, instead of fixing it, Johann made me sit there with it dangling loosely, which was another

sensory NO-NO, and proceeded to argue with me over it being moved off of me.

This caused me to yell more in frustration, because my stomach was cramping and I was being

argued with

instead of listened to and accommodated and taken to use the bathroom!!!!

Then —- even though I have great trouble getting my blood pressure to take on

the new machines, Johann forced me to sit through yet another one.

I refused the second blood pressure in a row — because I was exploding, needed to use the bathroom

NOW, and Johaan sat there arguing with me!!!!

This was too much for me, and I melted down.

Angel, head nurse, came over, not to help me, but to scold me, which only escalated my meltdown

to a screaming stage.

Angel who is supposed to have my back, couldn’t bring herself to just

come up to me ans ask what was wrong, and how she

could fix it, —- no, she chose to deliberately scold me, which she knows will escalate my meltdowns.

Johann kept moving the machine monitor without asking me first, which added to my distress.

All of the clinic noises and staff arguing with me was too much for me to take.

Then Johann proceeded to very roughly yank my blood pressure cuff off of my right arm,

did it very roughly,

and this too escalated my meltdown.

When I finally got to the men’s bathroom

—————————————————————————-

(I use the men’s bathroom because it is wide enough for me to

navigate in and out with my transport wheelchair. The women’ bathroom isn’t as wide and easy for me

to get in and out of, so I prefer to use the men’s bathroom.)

—————————————————————————-

the toilet was dirty, and instead of Nurse Cheryl

offering to let me use the women’s bathroom, which I have done before, she proceeded to unnecessarily

argue with me, telling me she doesn’t clean toilets.

I NEVER ASKED HER TO CLEAN THE TOILET FOR ME!!!!!!! STILL, SHE ARGUED AS IF I HAD ASKED

HER TO CLEAN IT!!!!!!!!

She was not thinking that she could have just simply said to me “Let’s use the ladies restroom, okay?” No,

she argued

that she was not going to clean the toilet for me. I exploded again, yelling, because I still needed to

fecking relieve

myself —— and ANGEL came up in my face again to heap yet another cruel ableistic generous

heaping helping

of grade school

scolding and judging of my “behavior”. Yet another NO-NO.

I have educated this clinic till I’m blue in the face on how to handle me when I am having a meltdown,

yet some of you continue to insist on treating my meltdowns as a behavior to scold, judge and admonish

instead of being compassionate and LISTENING TO ME AS TO WHY I AM IN DISTRESS IN THE FIRST

FRECKING PLACE!!!!!

I can’t handle dialysis anymore.

I cannot handle the early time I am forced to go in,

and I can no longer

handle the abrupt changes and the ABLEISM that I still get from

ANGEL, JOHANN, ELIZABETH, and CHERYL.

I still have a laminated list of bullet points of the DO’S AND DON’T’S of how to handle and treat me. It is still in

the drawer to the immediate right of where Nurse Cheryl sits. PLEASE take it out and READ it again.

And read it OVER AND OVER till y’all understand and get it.

I AM AUTISTIC….I AM NOT A BAD BEHAVIOR!!!!!!!!

I GO TO DIALYSIS FOR A LIFESAVING TREATMENT,

NOT TO RELIVE ELEMENTARY SCHOOL AGAIN!!!!!!!!

My comfort and feeling welcome and supported while I am there are my top priority, and the onus is on ALL OF YOU

to make sure these bullet points are adhered to!!!! Please, once and for all!!!!!

~~~~

POST TWO

Friday, March 22, 2024

5:05 AM wide awake,

scared,

with stress hives all over, and worried as hell about dialysis

so I cannot sleep again and my stomach is upset precisely because of how I got scolded and argued with on Wednesday March 20, 2024, instead of very neurodivergent autistic me being listened to, supported and them fixing the things that got me upset in the first place…..

Head Nurse Angel showed no empathy at all for me, just scolded me, and she made me cut my treatment short due to my “bad behavior” She cruelly and falsely accused me of being abusive towards Nurse Cheryl when I was having a damn meltdown!

I am scared shitless to go back to that center, because I KNOW there are staff there who hate my guts, and ANGEL, NANCY, CHERYL  AND JOHANN are some of the staff who hate me and think of me as a behavior to scold and judge harshly.

I NO LONGER TRUST ANGEL TO TALK TO, BECAUSE SHE DOES NOT HAVE MY BACK, AND NEITHER DO CHERYL OR JOHANN. NONE OF THESE PEOPLE GET MY AUTISM AND MY SENSORY ISSUES AND NEEDS. NOR DO THEY SEEM TO WANT TO GET ME AND WORK WITH ME ANYMORE.

I was fully unsupported when things went downhill on Wednesday and then was forced to cut my treatment waaaaaaaaaaaay short, which if my treatments keep being cut short like this, and I keep missing my treatments because I am too afraid to go there for fear I will be scolded and treated with behaviorism, this could ruin what progress I have made. This could even cut my life way short!!!!My ending blood pressure was 191 / 127 with a heart rate of 96.

My next phone call is going to be to DISABILITY RIGHTS CALIFORNIA to get legal assistance because what is happening to me in your clinic is medical abuse, medical neglect, and medical malpractice.

Sincerely,

Melissa Fields

POST THREE

Again, I will not be coming in today, out of fear there will be a repeat of what happened on Wednesday.

PLEASE show Dr. Poonia both of these above emails.

The cruel ableism I am still being treated with at your clinic is KILLING me!!!!!I AM TOO FRIGHTENED TO COME IN TODAY BECAUSE OF HOW I WAS TREATED ON WEDNESDAY.

AGAIN, I AM AUTISTIC…..I AM NOT A BAD BEHAVIOR!!!!

And some of your staff do not give a rat’s ass about me.

Sincerely,

Melissa Fields

And Yeah, My Dialysis Nightmare Continues Because They Can’t Stop With The ABA Style Behaviorism

So, I’m missing another dialysis treatment today because I am too frightened to go there for my lifesaving treatment and get argued with when I have a need, and instead I get scolded and judged when their unwillingness to accommodate me results in me having a meltdown.

I am AUTISTIC….I am NOT a bad behavior, so stop giving me ABA style behaviorism when it is your staff who causes me to have those meltdowns.

I’m sick this morning because I’m still upset and hurt because of how some of your staff treated me on Wednesday. I really want to quit dialysis because I feel every level of miserable, alone and unsupported while I am there.

I have emailed this clinic hundreds of times to educate them about my autism. I’ve been going to this clinic for the past almost six years. They should all know by now that to scold and lecture me when I’m in the middle of a meltdown — or any autistic person who is having a meltdown —- is like pouring literal gasoline on a fire.

#DisabledNotLessThan

#MedicalAbleism

#AmericansWithDisabilitiesAct

#MedicalAbuse

#ItsAMeltdownNotATantrum

News Channel 3-12

DaVita Kidney Care

Disability Rights California

The Arc of California

Dear Family

Really feeling like I have never truly gotten to live my life the way I have wanted it to be.

I feel it soooooo deep in my bones, and it hurts.

I have so many regrets and what ifs always going through my head, till it hurts, and the rivers of tears won’t stop.

I am depressed and dejected that none of my siblings, nieces, nephews, cousins or aunt, with the exception of two of my sisters and my mother, see me as the human being I am, nor have they ever cared about me or wanted to accept me.

It hella sucks that they all shun me as if I’m a bad plague.

(Yes, folks, I did make peace with my eldest sister this week, so I have her back in my life again.)

But I have so many siblings, nieces, nephews, cousins, and an aunt who are like literal S T R A N G E R S to me, and it shouldn’t be like this!

I can’t help it that I was born autistic. But I was, and my autism is very much a part of who I still am, and will be till the day I leave Planet Earth. I am actually proud of my autism. Why not? It is what makes me the unique, creative, funny, goofy soul I am today.

I still long to visit New York City, all five boroughs, Long Island, the Hudson River Valley, the New England states, Philadelphia, Washington DC, Michigan and Eastern Canada.

I want to win big in the lottery, big enough to set myself up comfortably, and still have lots left over to be able to help others who are in similar situations as I am in.

I cannot go out and get a job because of my sensory issues with noise and changes, bright lights, and harsh rude people. And because of my lymphedema and kidney disease. So I hope on the lottery as my ticket out.

Yesterday I learned that one of my cousins passed away. In May 2018, I also lost my eldest brother. The d3@ths of my eldest brother and now my cousin, has made me think alot more about how I am still shunned by most of my family and relatives.

It seriously shouldn’t have to be this way.

Dear family, my door is wide open if any of you want to call me, message me or come visit me, and we can talk. I want to talk and heal from my past….I need that closure, and I need all of you to freaking C A R E about me as the authentic, unique autistic human being I am.

Y’all sadly have always thought of me as a “problem” and a burden and penance my entire life. Y’all never gave me a fighting chance to get to know me, because your hatred and prejudice towards me always got in the way.

I pray this prayer this very night, that this post will get to all of you, dear family, and this will finally soften your hearts towards your sister / aunt / cousin / niece….and you will finally open your hearts to me.

Please…I need y’all.

I Love My Family, Believe It or Not…And What’s Made Me Not Be The Fun Me Y’all Thought I Was?

It’s been almost one year since I got a nasty, hateful, and hurtful mean Easter letter from my eldest sister….and it still hurts. Those harsh words can never be taken back.

I wish I had kept that letter for my records. As proof of what I had to endure growing up….and as proof of how my eldest sister seemed to still feel about me after all last year.

Those cruel words that she penned to me ….. can never be taken back.

To my eldest sister, I got your newest letter today. Thank you for the Masses you are having said for me, thank you for the beautiful card, and for your kind words.

And yes, I so remember when you lived here, when you would come to Santa Maria and we would go out to eat at a restaurant of my chosing. I enjoyed our visits, and I especially enjoyed the time I drove to Buellton an met you at AJ Spurs for my 40th birthday. That is one of the few happy memories I cherish in my almost 64 years on Planet Earth.

I still love you, my dear eldest sister. I love you, and I love all of my siblings, nieces, nephews, cousins, and even the aunt who also has nothing to do with me.

It hurt so much and so deeply when you penned me that letter full of hate last year. That is why I foolishly ripped it up. I didn’t want those words to stay in my house.

If you have to ask why I’m not that “fun” Melissa anymore, you haven’t read my blogs that closely.

My downfall happened in increments, first with me moving over to live in one of my family’s cottages, where two mean girls began to taunt and torment me. And then, when you would come take me out to eat, I was still in decent enough health.

My full downfall began when the lymphedema started on both of my legs (2005), and then when my professed Born Again Christian ex-neighbor who was supposed to have my back, suddenly turned on me (March 2012), which caused me to shut down so much, I had to give up driving, and give up my little car that I loved.

With all of that, went what little freedom Disabled Autistic me once had. I began needing in home caregivers, who have sadly all been nightmares, —- except for Connie and her daughter Natalie. Before C and N came into my life, and when C went back to work for a doctor, I went through more literal hell due to a long string of abusive caregivers …… which has effectively taken all of the fun out of my life.

Why so many mean caregivers, you may ask? Is because I’m autistic, and most people still look at us through stigmatized eyes that only see us as burdens, too needy, too complex, and Less Than.

These caregivers yelled at me, mind fucked me, stole thousands of dollars I had saved all up in a rainy day kittie, as well as most of my books, music CD’s, DVD’s, clothing, and lots of other personal possessions that all mattered to me. This is why my credit cards are still maxxed out, today.

Dear Eldest Sister, I think I might still have the two coffee table books you sent me on New England though. I would have to go through my bookshelf that’s in my bedroom to see for sure.

In addition, all of these lived experiences I’ve had, from birth to now, have made me wake up to the state of our world around us, and it has made me evaluate even my own gender and sexual identity. My lived experiences have made me even more empathetic to the plight of other Disabled, Black, BIPOC, elderly, LGBTQ+, and all who are marginalized.

I stopped voting Republican because of the Tea Party and how they all mistreated and disrespected our then POTUS Barack Obama, and when Donald Trump and MAGA came along, it permanently severed what ever ties I once had to the Republican party of my childhood. It hasn’t been my father’s Republican Party in at least 20 years.

From the Tea Party on, today’s GOP looks the other way as children and adults alike continue to get slaughtered by AR-15 style weapons of war — at school, at shopping malls, grocery stores, places of worship, you name it, no place is safe anymore, and in addition, they want to strip women, LGBTQ+ people and Disabled and elderly people of our rights and the social safety net we depend on.

That to me, ain’t fair at all…in fact, it’s cruel, and I cannot as a still devout Believer in God, Jesus and the Holy Spirit, support that kinda shit.

I have never been into racism and bigotry, even when I was growing up, I hated hearing my siblings denigrate others on the daily, just because their culture was different, or they had a different skin color, or they were Hippies. Or Disabled.

That was what I grew up on: a steady diet of bigotry and intolerance.

To my eldest sister, I am still fun, you just don’t get to see it anymore, because you don’t even call me, or email me anymore, and you don’t see how I interact with Natalie, Connie, and most people at dialysis who all love and adore my noises, my unique Melissa language, my unique warped sense of humor, and my shiny hair fetish.

My life has changed drastically. It changed when…..

In 1992 when the two Mean Girls next door to me suddenly ganged up on me and got mean with me, tormenting me with their bubblegum music and mean shrieking in my windows….

When that man who lived next door to me who was supposed to have my back, suddenly turned ugly mean in March 2012….

when the Brother Sister caregiver team were my caregivers from June 2018 to June 2019 and they began their daily habit of mind fucking me and stealing money and things from me…..

Add to this, abusive Nurse W at dialysis……

It’s called C-PTSD TRAUMA……

And since COVID, prices on electricity, natural gas, and groceries have skyrocketed ….. leaving me left behind, and in even deeper debt …. debt that I am now drowning in.

Again, I cannot just go out and get a job, because I cannot drive anymore, I’m on dialysis, am still disabled, and I am going to need some sort of security when my mother passes away so I can still stay connected and in touch with the outside world. I also need a roof over my head that I can’t get kicked out of.

If I don’t win a lottery, the only way out for my life is to have the family put these two cottages where I live, in my name, so I can collect the rent from next door. Out of that, I can pay my living expenses (including my TV, and phone) and the taxes and upkeep on these two homes.

In closing, I pray for all y’all, every day that I think about praying. But I am so physically and mentally tired these days, that praying has become harder for me. Writing and drawing have become harder. Everything has become harder, because I live with the thought every single day that I am an outsider in my own family, that I am a pariah, and none of you get it that I was born AUTISTIC ….. which is a disability I cannot and have never been able to help.

I live with the thought every day that I will probably die without ever realizing any of my lifelong dreams and goals.

Being alone, lonely, and without hope …. are what kills people well before their time ….. and it has already overtaken me ….. so please don’t lament on how unfun I now am and instead, see my plight and have mercy on me and find it in your hearts to finally stop turning your backs on me and help me.

Thank you. ❤ Melissa ❤

Thank you, Eldest Sister, for your kind letter too today. And again, for the Masses you are having said for me. ❤ ❤ ❤

More Poetry From Lonely Me, Hurting Because No One Really Cares

The sun wants to come out today

The sun really wants to come out today

But it is fighting the battle

Between darkness and gloom

And sunshine and Hope.

~~~

You thought of me as a burden

Yet when I died

You cried the hardest tears.

MORE LAMENTSTIONS FROM A DISABLED AUTISTIC ADULT WHO CAN’T TAKE THIS ANYMORE

I am tired AF as usual, and it is the kind of tired that is derived from too many can’ts and no’s to practically all I have ever wanted to do in life.

It is a kind of tired that is deeply intertwined with deep dark endless forests of depression, despair, panic, loneliness and hopelessness from almost 64 years on this earth of being excluded, isolated, belittled, shot down, mocked, treated as an Other, told no and being literally held back, oppressed and told I would never have any friends and any success in life.

I live in constant panic over my lack of enough money, and over the prospect of life after my mom passes away, because then my siblings all plan to sell these cottages where I have lived for the past 34 years, which will leave me literally homeless for the first time in my life.

I am in deep debt, and can barely afford to live each month anymore. I am miserable.

ALL of my siblings own their own homes. I do not. I rent one of two cottages that are in a family trust, which is currently unfunded.

Also, all of my siblings could always work too….and I never was able to work, so I have had to rely on very meager social safety net benefits my entire adult life, and have had to shelve every single one of the many dreams and goals I have had since I was a little child.

Dreams of being a rock radio deejay and an actor, and of being able to visit New York City, NY state, and the New England states.

And now….I have end stage kidney disease…..the cherry on top of my poison life sundae.

I wish my siblings cared about my daily nightmare plight and the hell I am in every single fucking agonizing DAY—–and that they would all help me…..because I. Am. Drowning.

Yes, We ARE Community & Family…& True Families Are Known For The Unconditional Love They Show For One Another

Ya wanna know what true families do?

They help each other out. Always. Without condition.

They love one another without condition and judgement.

They lift one another up when one is down.

They accept one another for who they are, not who one thinks they should be.

They show UP for members who are vulnerable and marginalized.

They don’t turn their backs on those who struggle and falter.

They don’t abandon those in their time of need.

They don’t exclude and block any members on basis of disability and “having too many problems.”

They don’t pick on their disabled sibling so much they truly wish they had never been born.

They don’t shoot their disabled sibling’s dreams and goals down so that they become deeply depressed and feel like it’s all hopeless.

They don’t tell their disabled sibling they will never have friends, never date, never learn how to drive, never marry, never have kids, and never have a successful life.

They don’t tell their disabled members “You are all alone when your mom d!3s.” “We won’t help pay for your cable TV and internet and cell phone when Mom d!3s.”

They do not take the ONLY home I have lived in for the past 33-plus years right out from under me when my mother d!3s to let me fend for myself, even if taking and selling said home causes me have to live in the streets from here on out.

They care enough about their disabled sibling to never let them have to ever fend for themselves in the lonely cold freezing wilderness, trapped with no way out, and never any hope of ever being able to finally fulfill dreams and goals they have had their entire lives to be able to visit and see New York City, New York state, and New England.

They realize that their disabled sibling never got the chance to go to college, get married, have children and buy their own homes, while the rest of them did get to marry, have children, go to college and find sustainable jobs to support themselves and their families.

They work to provide a way for their disabled sibling to not just survive, but to be able to thrive: in their own home, community, state, nation, and world.

True families care and are here for one another.

Hi family, from me, Melissa, your disabled sibling, cousin, aunt, and niece.

To my family, why won’t you finally

C A R E

A B O U T

M E ???????

Accept me as the Progressive, Creative, Artistic, Autistic, Neurodivergent, Queer and Non-binary human being that I am.

I am H U R T I N G.

I am D R O W N I N G.

The poverty, pain and anguish I live with daily…..is painfully

U N B E A R A B L E.

I am drowning and I need your help, support and love.

None of us was ever meant to go it all alone. We are our sibling’s keepers.

Matthew 25.

I Need Help Soon, Or I Won’t Make It

This is a series of posts I have written on my Facebook wall over the past few days, because my entire quality of life has gone from a flat consistent zero to a freezing -50 below zero, in just one month….and it’s still January.

Dialysis has become an unbearable hellhole again. And….I now feel as though I will die before I ever get to fulfill my lifelong goal of being able to see New York City, New York state, and New England.

POST ONE

No one knows what it is like

for autistic born me

to wake up each and every

agonizing fucking day in my skin

and be forced

to live and adapt to other people’s

harsh unreasonable neurotypical

world of IMPOSSIBLE.

POST TWO

The sun is brightly shining on a brand new year

and all I can feel is a horrible sick sinking feeling

in the pit of my stomach

that my life as a disabled autistic human being

is still going to be lived

in a never-ending loop of

poverty

hardship

loneliness

being talked over

not listened to and believed

more in the way of being

mocked

gaslit

and being forced to have to deal with

and adjust to

a harsh AF world that

still refuses to get me….my autism and my world

that is very, very real to ME.

POST THREE

Lately every time I talk to my mom, she and my sister both cruelly remind me of how there will be no one to pay my TV, internet and phone bills after she dies…..and how my other siblings plan to sell these two cottages where I live, which will effectively put me out on the streets for the first time ever.

And….I am expected to just smile and be happy about it????

I’m not exaggerating when I write about how cruel my family has treated me all my life, how I have been thrown under the bus and forced to ride the short bus my whole life because of them.

This is the same family who always —- always —- shot my dreams and goals down, saying I would never learn how to drive, never have dates, never have friends, never be able to work or be able to succeed in life.

And they want me to just smile and shut UP about it.

My life has always sucked because it has been nothing but dreams and goals I have never been able to attain.

I have no way out of this trap I live in day in and day out, and it is getting worse and worse by the day.

I need a miracle so I can live whatever time I have left in peace and security. Or I cannot handle it anymore.

POST FOUR

I can’t go on much longer like this without a way out. The worry, the anxiety, the panic attacks, are way too much.

No one should have to live lives like this.

POST FIVE

Do not, ever, tell me my interests are too silly, too childish, etc., or that I am obsessing too much over them.

Right now, I am watching endless YouTube videos on old classic console stereos, the ones that were made out of beautifully-crafted wooden cabinets, and that shine with all the chrome accents. I love to see that people are buying them and restoring them.

In 2016, my entire focus was on those speed radar trailers, those things that sit at the side of the road and record everyone’s speed.

As for Halloween, I still long to have a cool trick or treat candy haul that I never got to have as a kid, because my mom wouldn’t let me go with my siblings to the cool streets and houses. I only got their reject candy, and the shitty candy from my closest neighbors, while my siblings got all the cool candy of the time.

Our special interests are what often is the thread that literally keeps us breathing. Remember that when you are tempted to shut what brings us sheer joy down.

POST SIX

You wanna know what would make the disabled human experience better?

You can start by dismantling this broken mental healthcare system.

Then start treating us disabled folks like the human beings we are.

Stop forcing us to be relegated and trapped in lives of poverty and undue hardship just so we can utilize disability benefits.

Expand those disability benefits to where we can actually afford to live, and we can even enjoy our lives.

Stop demonizing us if we are unable to work at gainful employment.

Enforce accessibility requirements in all public spaces, medical buildings, parks, recreational spots, retail, entertainment and food spots, so we too can enjoy these things.

Stop being ableistic and talking over us.

POST SEVEN

Dear ABC News, ABC7 News, NBC News, NBC Bay Area, DaVita Kidney Care, U.S. Senate Democrats, Congressman Salud Carbajal,

This is an open letter to all of you who need to understand the plight of most who are disabled who have never been able to work at gainful employment who instead rely on a badly broken social safety net system that does not adequately support us and that relegates us to entire adult lives of poverty, hardship and lost dreams and goals.

My current situation? I need a way to have someone help me by paying off my 3 credit cards so I can afford to rent another place and not have to live under my mother’s roof anymore.

My mom often talks about selling these two cottage where I live and only giving me one share of the sale, which will barely even pay off my credit cards and I will become homeless for the first time in my life.

Each time she talks about this, it throws me into an utter panic.

My dear sister (sarcasm) who lives with her, just told her today, to tell me that when my mom passes away, she won’t be able to pay my cable TV, internet and phone bills anymore.

Things that are my only outlets because I am also a wheelchair user who cannot get out and go to places like my community library.

I will drown then. I won’t be able to survive when my mother passes away. It will mean the literal end for me.

I have never been able to work due to my autism and all of the deep seated trauma and sensory issues I have with people, lights, noises and the outside world.

I now have end stage kidney disease and lymphedema on both legs.

I have NO way to pull myself up by my bootstraps. My entire large Catholic family have abandoned me so I am unable to go to them either. This includes my rich aunt whose late husband was a famous sports figure.

My ONLY options are to either win the Powerball lottery jackpot, or quit dialysis and let nature take its course.

At dialysis there is also a mean tech who has suddenly turned against me too who is making my life there hell too.

I need help…I badly need help. I am so miserable and unhappy I can’t go on much longer like this.

Will somebody please care???????