A blog by an Autistic adult.
And i don’t know how i am going to get myself back out of this now, because i feel as though the hole i am in now, is way too deep for me to climb out of by myself.
I feel an onslaught of fear and anxiety all the time now, and cannot rest. When i do rest, i want to stay asleep, and not wake up.
I am fearful that my caregiver is going to get fed up with me and quit me. She has become like a close sister to me, and i admit, i cling to her more than ever now, because when she is not here, i literally have nobody to turn to, to talk to, to bounce my ideas off of, to share my thoughts with. When she is here, i love to share my thoughts with her, and love it when she and i can talk, and when she gets me to laugh and giggle. I love it when she wears her hair down, and she lets me play in it and look at the colorful shines in her hair. (Yes, for those who don’t know, i love shiny hair. And she has beautiful long brunette-dark red shiny hair.) Whenever i feel that i may have displeased her in any way, it bothers me so much that my entire night gets ruined by my worrying and anxiety over whether i have made her angry or burnt out?
Today, i am once again way beyond tired. It has been like this every single day now, ever since the police last took the speed trailer away from me…the nice speed trailer i had from June 2nd through July 19th of last summer. When it was here, it became my friend too….because all of my life, to cope with a world that still mostly does not get Autistic people, i have made imaginary friends out of certain roads, highways, and certain electronics. It is hard to explain to those who don’t understand how my Autistic mind works, how profoundly traumatic that was for me to lose the speed trailer a second time. Lately, i seem to never get enough sleep each day, and i feel like going back to sleep when i wake up. This is a combination of the worry and stress about my still-festering, still-bad living situation,still not being able to have the speed trailer put back here, and my worry and anxiety over the way things have been since the orange tanned dicktator got inaugurated.
All i want to do these days, is to curl up into a ball and sleep…..and not wake up till this is all over. Till we have a nice President again. Till i have a way to be able to move from here.
I have changed in the past 6 years.
In 2010, i still was learning about my Autism, and ableism, and neurodiversity. In 2010, i still was a moderate Republican, even.
In January of 2012, i still had a deep Christian faith. And lots of hopes and dreams and goals for myself.
Today, yes, i still believe, but i no longer wear it on my sleeve like i used to. Nor do i like to preach about my faith anymore on my wall. Why, you may ask? Life happened between then and now; by 2012, i had gotten so badly hurt by one too many churches, and by some so-called Christian “friends”—–and i turned very cynical and bitter and angry. All of these life experiences, plus meeting all of you wonderful people on Facebook, has woken my mind up, and turned me into a flaming proud liberal progressive.
I also finally felt comfortable coming out as bi-sexual due to being on Facebook and meeting all of you awesome friends. I have always felt attracted to both women and men, and i did come out to two of my sisters and my mother, in the past.
In March of 2012, i went through a violent verbal and emotional separation of a friendship between me and a man who also professed a deep Christian faith, but he was a man who used me financially, and who would get in terrible mean moods with me every other month. In March 2012, he turned against me one final time, this time for good, and tried to get me kicked off of both YouTube and Facebook both. This was a trauma that i still have not healed from. His cruelty towards me, still causes me to have bad nightmares even today, of him. One cannot put a time limit on PTSD.
And then right on the heels of that, came a long string of very abusive caregivers…..from May 2012 to March 2014. Yes, i blogged about it all in a six part blog series. Those added to my trauma and PTSD.
Even though i now have a good caregiver, and she has been my caregiver now for 3 years, i fear that she too will turn on me and leave. (I wrote alittle bit about that fear at the beginning of this blog.) That fear is a great fear still, because so many people have done that to me in my life. I KNOW i am not easy to get along with. I have a great any rituals, routines, am set in my ways, phobias, fears, sensory issues, triggers, that go along with being Autistic. Most people cannot understand that, and even the ones who do, soon grow tired of me and leave me. This is because most people think of my meltdowns as a behavior issue and they yell at me to get me to stop—and that only ends up making my meltdowns even worse…..and longer-lasting.
I no longer drive. I had to stop driving in April of 2012, due to a growing lymphedema leg tumor on my left inner thigh, and due to me growing more and more fearful of going places by myself anymore.
Since then, i have been mostly housebound, and have been relying on caregivers to come to my home to help me, so that i can remain living in my own home.
To be honest, I am depressed now….and am living only as long as God keeps me here. But to be brutally honest, life has gotten to be an unbearable daily hell for me. On all levels. And it is getting worse. Especially now that we seem to have a whole new regime in Washington DC. A new regime that seems to be all levels of authoritarian—and honestly quite terrifying.
Today, i plan not to watch MSNBC at all until tonight when i can watch Rachel Maddow, Lawrence O’Donnell, and Chris Hayes.
I will not be watching the inauguration. I repeat: I WILL NOT BE WATCHING THE INAUGURATION.
Because i do not support him nor do i call him my president.
He was not supposed to be elected.
Yes, i AM going to dwell on this, because again,
he was NOT supposed to be elected.
It is clear that Hillary Clinton had the popular vote, and clear as the hand in front of our faces that DJT is a
hot tempered, mean,
vindictive, malicious ruthless monster
who goes back on his word,
who makes fun of women for their looks,
who body shames,
who pokes fun at Disabled people,
who thinks Muslims are all terrorists,
who plans to defund Planned Parenthood and ban abortions,
who plans to go right along with all of the Republicans who plan to make deep cuts to our social safety net and healthcare system that will end up ruining the lives of real human beings, and killing us….
who plans to ban the press from the White House
who seems to have a real love for, and connection to, Russia,
who also has a very authoritarian personality,
who has said he wants to strengthen our nuclear arsenal,
who has already managed to anger several nations,
who plans to do away with the climate change agreement,
who plans to do away with everything that protects women and all marginalized groups from hate and discrimination
who plans to take away the rights of LGBTQIA people
and turn our country back to the bad Dark Ages before FDR, Lyndon Baines Johnson, and the Civil Rights Movement……
who plans to cut access to the lifesaving medicine for those with HIV/AIDS, who are now able to live because of those meds…..the list goes on and on.
………and our electoral college was supposed to be there to PROTECT us from demagogues like him!!
Didn’t happen, did it?
I am not a faulty broken appliance
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
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 smells and scents
especially if it is intensely strobe-like
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.
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
*Downtown Friday Nights farmer’s Market
*Cool Hand Luke’s for ribs
*San Luis Obispo downtown/the mission
*Morro Bay/Cambria/San Simeon
*F. McKlintock’s for ribs
*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.”
“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!! 😥 “
“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.
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 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.
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.
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.
My Go Fund Me: https://www.gofundme.com/2ckkdc4
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.