Will I… (Trigger Warning)

 

I have been trying to hold back my level of suffering from the world. The various support groups for autism, Ehlers Danlos Syndrome, PTSD… every single one this is a reoccuring theme. I know why. Not only is being in this level of pain dangerous but it makes you vulnerable and often this is when people abandon you, attack you, or they cannot comprehend what you are trying to tell them. I do not as a rule cry when I feel so much pain but I silently sit and try to find the cause to fix it or I just learn that this is my new life. I must always be prepared for the permanence of my agony. There are people who are lucky enough that this is not the case.  I cannot stop hiding this, even when I try sometimes. There is the element of fear. If everyone knows that I can barely breathe for pain, then even the predators know. (Oh hello predators. Yes I will tazer you even when I hurt.)

This song is from rent, it is called Will I… thus the title of the post. I could die from the on going issues I have at any time. My heart could fall to pieces, a literal broken heart. I could have a heart attack from my stress and high cholesterol. I am bleeding internally somewhere, I could run out of blood. I could kill myself. That is why I am writing this post. You see, that is the whisper in the depths of what might be my soul. If I die it is over. I do not live out of some doubt about an afterlife. I do wonder but that is not a consideration in any of my choices. I do not stay alive for other people or the cats. I love many people deeply, so deeply there is an ache of joy. I guess a mental pressure sore from all the goodness. I stay alive because I want to.

I am afraid of dying and missing people. I am afraid of lingering in pain without dignity. I am terrified of being tormented by doctors as Ihave been lately. The nightmare is not the diseases or the pain. In fact some of that is better. I officially no longer am diagnosed with epilepsy but still have a seizure disorder of some sort. The some sort is not defined by science. Yet NOT having epilepsy is a miraculous thing.  It is a wonder to me.

I spend a lot of time advocating, and passionately burning for the world. Now I am just burning. The pain is in every nerve, even though some of them should not be communicating with the brain. My blood pressure is up, my heart is racing, and this is omnipresent. I have had to fight around government shut downs for my needs, but I did this. Yet all I want is to have someone hold me. Something no one can do at all. Maybe ever again. I just want to be held in a soft space of beautiful harmonics without actual sensory input. This dark space has no reality. I often find this song in the undercurrent of my psyche because it holds most of those things. Yet I do not have to wonder. No, my life will never get better. I will always have some agonizing wrong. Yes people care. I have never known how much people care, I think I do then it seems to grow. Maybe I grow. Maybe not.

I am terrified. I feel the race of time, not just because bleeding internally is very bad but I need this resolved for my mental health before november. My PTSD is at a peak height and I am not sure what I will be enduring medically but I know I will survive it if I can. Will I be allowed dignity is the true question. I am afraid to die and leave people I love, this is new to me. I never cared before. I always lived for things like spite, revenge. My revenge has been to build my life up into something I was told I could never have. I look around this space I live in and every corner has a marker of love. Every doll I own someone else gifted me, the Gothmas tree that needs its decorations and makes Sylvani happy, the pile of scarves I know will be useful and necessary that are clean, the myriad of tiny touches. My life has been a life of grief and loss. Now that I have things I want to hold on to I am afraid I cannot survive this. It is not a lack of will to live, it is a lack of trust in my doctors. I have no faith in even the best of them. Why should I with the ineptitude I have fought against for so long?

So I am left to wonder. Yes, I am in pain. No I do not know if I can survive this. I will try.

One more thing: The man who wrote Rent? He died from a condition similar to EDS called Marfan. That runs in my family too but I lack the features that mark it. That is LUCKY for me. I sometimes wonder if the pain he felt and held too close contributed to his dying, if that is why Rent hits the notes I sometimes NEED. Just a little tidbit for people who may not have known.  I do not reach for the anthems of survival that are broad and direct, they ring hollow. “I will survive” does not match my spirit. Even when that is indeed the attitude that I display as I emulate the bronco and buck for my life.

 

I am jagged glass

shattered now

pick me up

fear the cuts

I do not intend

Yet I broke

can you lift me up?

Will you laeve

I am broken

Never repaired

yet I was beautiful

I am beautiful

Shattered glass

so many sharp edges

yet it is true

I am beautiful

The Right to Remain Silent (Trigger Warning)

I have so much going on that I have been silent, because writing hurts. Typing sends sheets of agony down my spine.  My belly is swollen and lopsided and no one knows why. I might have a brain tumor or a billion other things making my testosterone levels skyrocket. (Meaning if you think testosterone makes you a man I am more man than you, if you are indeed a dude.) I have been fighting for access to the same care a non disabled woman would have gynecologically, while being torn for a pap by the speculum because the doctor decided that I did not have the right to a less painful exam. THAT has never happened to me before medical fragility or not.I have been struggling. I have also seen every day in the news a murder, maiming, medically questionable treatment usually reserved for animals., continued institution and many other horrible things being done to autistics.  This is true of other disabilities but not to the degree that autistic children and adults have been deprived of the empathy that their victimization should have.  Here is where I should link you to a few brilliant pieces I read but I cannot handle the triggers to read the truths again.

Two nights ago before bed, due to a technical glitch I had a talk with another autistic advocate and we both acknowledged that as children we were taught to be compliant, pliable and to NEVER say no. We were taught that certain abuses, things taught to even children with good parents who are taking the advice that is being given in the form of ABA and other wretched training methods that use violence and pain as therapy, have been used to silence us. Every autistic advocate I know has PTSD from treatment, abuse, and some of that abuse was preventable if they had known that NO was an option. I am not always the most vocal advocate, especially when things are as bad as they are medically, I focus more on staying alive since that is very helpful with the whole fighting for your rights thing. So I am always relieved when I know that other advocates ARE out there. They are persistent, present and even if one of us takes a small step back for our own needs others are there to help with the event horizon of advocacy. Autistics are not seen by most people as people. We are not seen to have pain, rights, or needs. We are seen as a burden, an imposition and a chore.

This shouting anthem should be read with as much loud punk music as your brain can conjure.  It is as close to stating how I feel about all of this as I can manage. My words skim the surface like a waterbug. I want to scream. I want people to HEAR it. To feel it. Take the punch in the gut, take the flag, rise up and listen. No one knows more about autism than we, the autistics. Not the parents of autistics, even the ones who DO listen to us. No one can speak for me. No one. Now if people just listened when I do speak we’d be golden.

The Right To Remain Silent

You have the right to remain silent
That is what they say to the criminals anyway
but being born with an autistic brain
doesn’t make you a bad person
Not unless you maybe rob a bank.
So I am writing this out in the hopes
That you will hear the song behind the words
Flap your hands, look away from their eyes
Defy their toxic works.

You have the right to shout
You have the right to rock
you have the right to sing
you have the right to be
You have the right to no
You have the right to live
You have the right to no
You have the right to remain…

Don’t take their word for what you are
You have value even if they can’t see
Our words are taken through violence every day
but being born autistic doesn’t mean it has to be that way
Trained from birth to take abuse
We are people
Gonna rise and shout
Scream it
Say it
flap it
rock it
paint it
feel it
breath it
SHOUT IT OUT

All the people we see and hear
don’t seem to think we should speak and say
I am not a doll
I am not a toy
I am not a dog
I am a human
I am a human

Raised to say anything but what I really feel
Taught that my words cannot be valued
Do they rape me?
Do they break me?
Do they beat me?
It’s just therapy
Do they drug me?
Make it hard to think?
Make me want to scream?
Do they cause me pain?
It’s just therapy
Silent hands
quiet hands
eye contact
scrubbed skin
Get used to it
Cause it’s just therapy
Don’t say no
Don’t say pain
Don’t say truth
It scares them
Less than them
That’s a lie
Its the lie
Fed to us

So shout it out
tell the truth
Since when does the abuser get to say
What is right
For their victims
We’re the survivors and we’re going to stand to say

I am not a doll
I am not a toy
I am not a dog
I am human
Where’s my equal rights?
Fuck the ADA
I’ll take the social equality the hard way.
I may not stand
I may not speak
I may just breath
I may sing out
I may write out
I may say it too
I have the right to expression
I have the right to truth
I have the right to bodily autonomy
I have the right to … everything you do.

The first chorus has risen, the second chorus too
Remember that you don’t have to be silent
They threaten to cage us
They threaten to maim us
Sometimes that is where our lives begin

I am not a doll
I am not a toy
I am not a subhuman
I am not a monster
I am not a freak
I am probably a geek
I decide my identity

Say No
Scream NO
Live NO
Fight
Fight
FIght
Advocacy
Freedom
Equal rights

You have the right to not remain silent
You have the right to bodily autonomy
You have the right to medical care without fear of being

silenced.
You have the rights everyone else does
We are people
We have thoughts
We have feelings
Fuck you’re empathy excuses for infringing on our CIVIL

RIGHTS

Don’t tell me to be silent
That isn’t very civil
Don’t tell me to keep my hands still
That is an act of aggression
Don’t tell me my anger is invalid because it isn’t yours.
Who fails to see
The human in me?
You are the nightmare monster underneath the bed
The shadows in the closets in every autistic child’s fears
You are the screams without answer when we have no words
You are abuser. You are wrong.

So listen, hear this. Read it. See it. Tactile paintings were

just not enough. I am going to keep shouting because it is ME

who I love. Selfish? fuck yes! Survival! I did it.

Say No
Scream No
Shout No
Live No
Fight
Fight
Fight
Advocacy
Freedom
Equal Rights
This is LIFE

 

Scissors in the Hair (poem)

The crinkling sound of my hair against my ears

The familiar tickle as the air plays with fingers over it

Dancing on shoulders

I sit quiet and still

I wait for that first sound

The hiss through the air as the blade lowers down

The scraping of metal over metal

The click the moment each hair is severed

Weight falls away

Air moves to my throat

A gentle embrace

I shake my head free

My hair is shorter

The ends look clean

There they lay on the floor

Red strands saying goodbye to me

I feel free

I feel pretty.

 

(In otherwords, I had a hair cut today!)

All The Things (Poem)

All the little things you have yet to do
I see them laid out before you
Just one step forward and then there’s hope
Just one step forward and then there’s more

I see the shining future
I see your greatness now
I see what worlds you can change
I see what worlds you have

I see the friends you have made
I see the friends still waiting
I see the love that you do offer
and I accept it willingly

So don’t mind my tears
They are for the future
They are for me
For no matter where you go
No matter what you do
You are always going to be shining and sweet

All the things you have yet to do will wait
For the things you do now matter
The love you share
The minds you open
The laughter you cause
The warm unbroken

All the things I want for you
They are here in your heart
I love you
So no matter what
You are in my heart.

Connection

I feel the spider webs of life
I see the glimmer of dew
Illuminating
I see sister
I see brother
I see rainbows in their flesh
I am one they are another
Together we are life.
Connections
Whispers in the wind
Knowledge lost for centuries
Soon shall be known again
I see the dawn
I see the evening star
The Moon and Sun can share the sky
Connected, so we are.

I have been reading, thinking, struggling, breathing, existing, and praying today. It’s not a pain day but it’s not a good day. Somewhere in between the moments of fog I felt a spark. I felt a connection. I am reading about Kola Boof, I am reading her words and I feel that connection. Her words resonate down in my soul. I cannot claim sisterhood with her but I can claim she is human. She is a person. In reading her words I see someone who has known pain, hate, anger and also great love. I see something I can aspire for. I do not have to aspire for pain that makes people question the reality of your life but I can aspire to instead use my own healing to teach and grow.

I feel inspired, even as my body reaches for the shut down. Even as I have to put everything aside to rest. When I wake can I feel the spark of the story that I lost? Can I find the path again? I believe I can. When I wake I will resume doing as I have been, and fighting to cast off ignorance and to find the truth. Truths of the world and truths of who I am. Truth of music, Truth of light. I am drawn to the power of Kola’s words and to the truth that they bear.

I am drawn to the ideas, the whispers, and the shouting of victory, freedom, and I am drawn to the things that the media hides. I am drawn out, and I find myself with the spark. Soon the spark will flame, and I will write again and again, each word sharper than a sword to seek out the lies and purge them from my mind.

Scream

This poem is dedicated to everyone who has ever been anything at all.

My brain is screaming
You don’t listen
My brain is shouting
You won’t know.
I make my words soft
So you can’t them away with lies of anger and rage
Stop silencing me
Stop denying me
I have rights
I have existence
I am here
I live
I am screaming
Silent screams
Patronizing me does not make me go away
I will not fade
I scream louder
HEAR ME
I have value
I am enraged
I am joyful
I am woman
I am man
I am neither
I am alive
I am minority

Copyrighted to me, written just now.

Nightmares

I haven’t had nightmares since my father died. I didn’t notice they were gone at first, because I tend to only have nightmares when I am tired or when I am stressed. Yesterday I was tired and stressed. I curled up to sleep, taking the time to play some music for William so he would sleep and allowing Sprite to lay sprawled over my hips, which pins me in that position until she moves. This is comforting to me. I drifted off into the twilight that comes before sleep and felt the slight pang of fear, wondering what my dreams would bring.

I remember most of my dreams in vivid detail, and last night I simply dreamed of Super Heroes without villains. They had nothing to do and it was a strange mix of Batman and Hal Jordan from the DC universe sipping tea and staring at one another. There were no words, but it appears that the heroes who inhabited my dreams, fighting off the dark monsters have won. I think it was pomegranate tea.

I remember the smells, and as I crept through what my brain deemed Wayne Manor I found only happy things. It was strange, and when I woke, after a 12 hour dead to the world sleep my first thought was, “Huh… I wonder what that was about.” What does it mean when your heroes run out of villains?

After some rumination I decided my brain is well aware of my ability to fend for myself. The one threat that I could not cope with due to the fear, the flashbacks, and the training from infanthood, is gone. My brain embraced this. One of the truest tests of this is finding silence, nothing but happiness even with the Batman in my brain.

Yesterday I ran into people from the last four years, and I found myself frustrated by the repercussions of those roommates. The credit being taken for my work had an effect, and left me aching a bit. The happiness however, at the true friends that I still have was overreaching.

I went to an SCA event for the College of Blaiddwyn, and I pillaged. My medieval persona (who I dress up as) is a norse female who happens to love Pillaging. I start with a fellow viking, a specific individual and then pillage the rest in my own shallow representation of history. I told stories as well in a competition. It was beautiful, it was fun, and I came home with a sense of satisfaction that I only obtain in the SCA. I missed it.

I will upload videos of my stories and some pictures for you all to check out soon. You can appreciate the awesomeness of my hobby horse on the scooter, I named him Wilbur. I found bits of myself i thought were gone forever. Perhaps it was this wholeness that allowed Batman to take his tea. I wonder if he uses cream and sugar.

With fulfillment comes peace. I forgot who said that. Perhaps it was my Sensei, but, I was fulfilled in a thousand ways with in the last few weeks. A lot of that fulfillment is from writing this blog. Though I may become a more sporadic poster, I am alive.

I look forward to telling you of my adventures with the two young women who are marrying one another, with in the SCA, and as I begin to persue the only job I really know how to do in a classic profession (Public Speaking). I specify in a classic profession as I can do many things, and always have layered my life with the things that please me.

Now for the first time in my life all I choose to do is for myself, or my person. For the first time in my life it is mine and mine alone. Even with a commitment to share my life with people I love, it is my choice. When I started this blog a month and a half ago it was at the start of this adventure. It has just begun but in that short time I have come so far, and i am bringing you all with me.

I can’t do this alone, yet, it is for me that I act. I haven’t felt such power since I started dancing. Dance, sing, and find what gives you this strong sense of peace and joy. Change what needs to be changed for the better, and love yourself. A lot of the private correspondence from this blog comes from people in need of love. The best person to find that love with is yourself. I know it is a cliche, yet it is cliched because it is true.

I also offer you something that my neighbor and Sensei taught me. It comes from the Buddhist tradition. He said, “The strongest Love is Wishing love.” What is wishing love? “Wishing love is the love in your heart that comes with each breath. The joy you feel for life, and the love for anyone. I feel wishing love for you. I feel wishing love for my wife. Wishing love is the love for all people and living things. I even feel wishing love for the people who made me cry.” Why? Why love? “Love is powerful, Little Lotus. Love can help you survive anything. When you hurt in here.” His hand on my heart,”Remember that I love you.” He kissed my forehead and sent me home. I wondered then if I could feel wishing love.

I feel wishing love. Remember, when you are afraid, I love you. When you are alone, I love you. I love everyone in this world. I loved even my father with Wishing Love. I will never forget the pain, but I will also never forget the first moment of love. I will never forget the strange sensation in my heart. It felt as if I could do anything. It still does and I can. So can you.

Wishing Love-
I will cry for you
I will live for you
I will laugh with you
I will love you.
I wish you love
I give you love
Wishing Love
Potent Love.
I wish you life.
I wish you joy.
I wish you mercy.
I wish you peace.
I wish you guidance.
May you find those who can lead you in the path of life, until you can lead another.

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