Without Words

I’m ill. Due to my diseases, I see my kid, my partner, my assistant and my doctor face to face, but that’s it. I interact with my friends online, because seeing people and having a face to face verbal conversations is too demanding. A lot of people seem to think that this is terribly tragic, but I don’t think it is. A conversation online is still valuble even though it’s online. Kind words from friends are just as valid online as face to face.

However, there are a number of things I don’t have words for and it’s getting more and more complicated by each day. I’m pulling away from my friends because I’m consumed by some stuff that I can’t talk about, because I have no words for it. Since all of my friendships are so much based on words, I don’t know how to interact when I don’t have any words for issues that are so major to me that I’m caught up in them.

Ever since I started this blog I’ve been mourning and I thought that by now I would be done, but honestly, I’ve just started. There are so many things that need to be untangled and unboxed. So many things that I experience but that I can’t parse or understand. So many things that I never talk to anyone about, because I don’t now how.

I experienced not being safe as a kid and it’s haunting me, but the experiences are so frightening and clash so hard with what I’ve been taught about the world that I can’t comprehend them. I relate very differently to other people, my feelings and thoughts have patterns and there are definitely logics that probably could be understood involved, but it’s all so very different from what I’ve been told human experiences are supposed to look like.

I’m autistic, but I’m a closeted autistic who rarely gets any validation of myself as an autistic person. I have to deal with my pain alone because I have no words for it but at the same time I’m constantly reminded of it because I’m parenting an autistic kid. I’m confronted with the allistic world over and over and most of the times, it’s like reliving a childhood trauma.

 

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Precocious

The other day my kid talked about an idea they had, that they thought was clever. I agreed, it was this kind of idea that was unconventional but solved a problem really well, so yes, very clever. The word my kid used for clever was a term that in our first language sounded… yeah, what? How should I describe it?

It was the kind of word that I used a lot as a kid too. The kind of word that made adults call me “precocious”. And at this moment, I realized that the burden of being called precocious is something that my kid will carry, just like I did. I want to protect my kid from this but I really have no idea how.

Why is it a problem to be called precocious? To me, it was humiliating because it pointed out that I was different and didn’t fit in. I didn’t personally care that much about fitting in, but adults made it very clear that you have to make an effort to fit in, because otherwise your life is ruined. This word also pointed out that adults saw me as inappropriate and that my intuitive communication might in a way be advanced but socially so very wrong.

The other day I found myself using this word, but in my first language, and it made me so sad. I don’t know if “precocious” carries the same connotations in english as in my first language, but in my first language, it’s an allistic interpretation of autistic communication. I feel ashamed. I will never, ever use this word about my kid or any other person again, because I don’t want anybody to grow up feeling so ashamed of themselves as I did.

 

I need to put all my autistic fragments together to a whole me

I’m searching for my autistic self.

I can feel myself as autistic fragments. Many, many autistic fragments.

These fragments don’t match the narrative of myself that I learned growing up.

As a kid, I never new the narrative of the autistic adult.

I need unity, I need to feel whole.

I need to put all my autistic fragments together to a whole me.

 

I’m not a puzzle to solve.

Not a riddle, not an enigma, not a conundrum.

I’m an autistic person. I’m an oppressed person.

The elusive image of myself as autistic comes from your oppression.

I need unity, I need to feel whole.

I need to put all my autistic fragments together to a whole me.

A first step towards getting help to deal with my trauma

Content: trauma

 

The other day I started to listen to Come as You Are by Emily Nagoski. When I came to the part about trauma I was thrown into  a very specific emotional space that I have no words to describe. I fall into something dark and scary and the level of fear is horrible.

Because of this reaction, and because of a couple of other things that has happened recently, I did what I have avoided for so long. I took a first step towards getting help to deal with my traumas. I contacted a psychologist and asked a couple of questions in order to find out if she is the right person to help me.

Ever since I did this, I’ve been feeling so ashamed and one minute I hope that the answer will be no because I just want to burry this deep down again. This is followed by me checking my email over and over for a while and hoping that I will get the opposite answer.

One thing that I hadn’t really thought about is that now when I’ve started to put this emotional mess into words in a conversation with somebody else, it feels like I can’t go back. I’ve been craving comfort and safety for a very long time but since I’ve never really talked about it with anybody, it’s been possible to push it back under the surface.

Now, I don’t know what to do.

I do know that if I’m ever again going to try any kind of counseling or therapy, it has to be with someone who understand power and opression. It has to be with someone who understands LGBTQI and disability. It has to be with someone who understands autism, Myalgic Encephalomyelitis and harm caused by healthcare.

I suspect that I’m asking for something that doesn’t exist.

Dear Life, Dear Pride

Dear life,

I’m so sorry. I’m sorry about everything that could have been, but never happened. I’m so sorry that I fooled myself so hard.

It’s summer now, meaning that I’m reminded of the LGBTQIA community that I’m not a part of anymore, because I got too ill and too disabled. Not that being ill and disabled is something that makes me less queer, not at all. But being the way I am, needing what I need, means that it isn’t possible to be a part of neither Pride nor an LGBTQIA community.

I can’t physically be at a Pride festival, because I can’t leave my home. I don’t participate in community discussions online, because the little energy I have, I need to spend on other things. Most of all I can’t openly identify with my queer self, my past, my desires, because I have to stick to the straight narrative to survive. Yes, it’s about survival. I’m in a place in my life where my existence is depending on me putting up a straight show.

This means that every summer, I cry when I see pictures from different Pride celebrations on social media. I cry because I’m reminded of that what I thought was my space, somewhere were I belonged, has turned out to be something else. Something that isn’t for me.

Dear Life, I’m so sorry that I failed you. Dear Pride, I’m so sorry that I’m not proud.