I am out on a self-discovery journey. And I end up not really knowing where what I experience belong. Is all that I experience due to severe and recurring childhood trauma complicated by attachment issues? Or is there a genetic component of neurodivergence?

I have gone to therapy. And I have tried to “explain myself”. But I understand that it is not easy to understand me, I have not understood me.

I want to try to explain what I experience with sensory input. And how that relates to other things with me and how I function.

I am extremely sensitive to sound, light, smell and touch and taste. As I am to balance, orientation in time and space. I am very easily overwhelmed in different ways. My startle response is huge. I often feel like I carry my nervous system on the outside of my body. It makes me feel naked and vulnerable. Easy to read and easy to manipulate. I do know I do not always give an appropriate, an accurate rection to stimuli. I can cry, laugh, freeze, run (mentally and physically) etc in the “wrong places”. I also know I am good at social masking and or I just go blank – that is – I give no response at all. I often miss out on parts of the conversation, but dare not ask for information, so I guess. When people suggest what goes on for me, I often just say yes to whatever they say. Rather that, than give away what really goes on for me. And I do know that when I have tried to be honest, people in general do not believe me. In that way it is actually quite sad. When I am genuinely me and show my weaknesses, I get accused of pretending. But when I pretend, socially mask, adapt, give people what they want, no one picks up on the “pretending”, then I am fully believed.

I feel like I have no filters. I need to manually block out sensory input. Which I do. I can do that to a certain point, but when I have no more energy, I get an emotional melt-down, often it looks like a shut-down, but it can also look like a tails-spin or a panic attack. Often the shut-down eventually always come.

So while I feel extremely easily overwhelmed, I also feel the opposite. I often look very closely at people, especially their faces. I try to see who they are, but I think I get stuck in the details. But also, I feel like I look and look, but I cannot grasp what I see? I feel like I am blind, and want to touch their faces, to know more. But then I am so easily overwhelmed that just the thought of that is super scary too, and also because that is not an appropriate thing to ask for.

I often fall in love with the details in people’s faces. I can’t really remember what they look like, if I try to picture their faces, but I remember the details. Yet again I do put it together into some essence of them, that is, if I get to know them. I do recognize people when I see them, so I am not face blind.

There are more to this – and I will keep on exploring and investigating this. But what struck me is how this has been part of how I experience life. It is as if I am stuck between sensory overwhelm and a lack of sensory input.

It makes me end up in no-mans land. Wanting, but not coping with it. It is as if I have no borders. I am one with the world and the world is always at least partly in me.

It is as if I lack skin, or that my skin is not functioning properly. And the more tired, stressed or triggered I am – the worse this become.

Yet one of my greatest pleasures in life is sensory input… so this is yet a seemingly contradictory way I experience the world by. Some sounds I love, same with light – I love taking photos and playing with the light and its reflections. Some tastes and smells I love too – and I do very much love touch – I love touching things, experiencing different surfaces. I also do like to touch and being touched by humans, occasionally. By those I dearly and deeply care for. I have loved the mutual cuddling, and still do, with my children. There are a few other people I apricate hugging. Not many. Most human touch, I would rather be without.

I remember meeting someone whom I came to care about and feeling this awkward need to touch their face. I could not tell why it was important. And it was seen as my need to know the person really existed. Perhaps that was part of it, but it was also a deeper need to “know” and experience the person. Like my fingers have vision? Better vision than my eyes? Which again goes really badly with my general touch aversion (with humans).

Hugs are an interesting chapter. Sometimes I do appreciate a hug (from the right person). Sometimes as a help to define me. Like it helps me to know where I end. And also in a way to assemble myself. Put myself back together. Partly, that can be reached by laying on the ground, or pushing against a wall, with my body. At times I ask horses if it is okay to lean against them. My cat at times gladly offers to come and lay on top of my chest, then it is like I need the squeezing, or the pressure per se. To find my borders.

I know I experimented with this as a child. My parents basically never hugged me, and when they did touch me, it was not a nice experience (except occasional holding hands with my stepfather). As a kid, despite having also problems with being in small areas (some sort of claustrophobia) – I also squeezed myself into small cupboards, to feel the walls against my body. I actively pretended the cupboard were hugging me. To make it a better “hug”, I stuffed the space with cushions, to make it more firm. But then too much firmness sends me into a panic. To be held without being able to get out of the holding is as bad as the too light touch. Just bad in a different way.

Being on my own moving around out in the world seems to make this much worse. The risk for overwhelm then increases. What helps me the best, distracts me the best, is to move around with someone else, a trusted someone else. It is as if when I focus on them and their needs and perceptions, I can forget my own. Having small children helped me with this and altered me. Their touch was never too much. Never felt threatening, never felt anything but natural and good. It did not upset or scare me. I received as willingly as I gave. I could also focus on them and move around in the world. Then the rest of the world became rather irrelevant to me or at least the people in it. I wasn’t helicopter parenting them or hoovering over them. They just had these very natural and simplistic ways of asking for what they wanted. I felt totally calm and competent in giving them that. I navigated relating to small children, even bigger children, with ease, as I do with most animals.

Grown-ups – not so much ☹  - I still feel relaxed around my now older kids (two of them have entered into adulthood) – what we built when they grew up is still there. I can easily find my way back to it – when we meet.

I do have friends I function very well with (at least that is what I perceive). I love to travel. I do feel bad for travelling easier with them, than on my own. In a way they do serve as a shield between me and the world. It makes me feel bad. But of course, this is not the only reasons I like to travel with them – or in general work together with them. But the world is a pretty overwhelming place for me. To move around in it with someone – is taking away some of the overwhelm. I have learned to travel on my own, and I can even appreciate it, espcially if it is between places, I already know. Where I know what to expect coming there. Coming to new places on my own and navigating that still feels too overwhelming. (Yet I love to explore new places.) If it includes me putting myself in a cab of some sort, that does not work at all. (Cars are one of my major triggers). I can learn to navigate public transport, but it costs me a lot. Still I love to travel…

I wonder about the common denominator in all of this. And I think it is about uncontrollability. I cannot control incoming stimuli. I can just adapt to it. And without filters, this easily becomes too much. So it is not that I don’t like sensory stimulation, I am just hypersensitive to it.  When I can control it – it makes it better. When I can make choices. But being exposed to things, without having any control over it – it either takes me into hyper and panic – or into hypo mode. It is extremely exhausting.

I am very fond of a theory in cognitive science that is called the "Re-Use Theory". It helps me understand that how I biologically function, I also emotionally, cognitively, and socially function. My psychology is re—using how my biology works. There are no differences – I am not a body and a mind – I am a whole being.

There is a part of the autism research that explains autism with the “Intense World Theory”. I have cited this paper before, “The Intense World Theory – a unifying theory of the neurobiology of autism” (Makram & Makram, 2010)

“The proposed neuropathology is hyper-functioning of local neural microcircuits, best characterized by hyper-reactivity and hyper-plasticity. Such hyper-functional microcircuits are speculated to become autonomous and memory trapped leading to the core cognitive consequences of hyper-perception, hyper-attention, hyper-memory and hyper-emotionality.”

“The progression of the disorder is proposed to be driven by overly strong reactions to experiences that drive the brain to a hyper-preference and overly selective state, which becomes more extreme with each new experience and may be particularly accelerated by emotionally charged experiences and trauma. This may lead to obsessively detailed information processing of fragments of the world and an involuntarily and systematic decoupling of the autist from what becomes a painfully intense world. The autistic is proposed to become trapped in a limited, but highly secure internal world with minimal extremes and surprises.”

When I read those sentences – I feel they very accurately describe me. Not that I really want to be found in that description, but it for sure aligns very well with how I perceive myself.

I think this has shaped me into becoming who I am and how I function, adding the defense mechanisms that came out of this way of being. I do fragmentize the world, and I do use dissociation as my primary way of coping.  I think my way of being was made much worse by the traumas I have experienced. I also think it helped me cope with them.

But, it also tells me, this is me. I cannot be cured from me. My way of being cannot be trained away (at least not in the way I so far have been exposed to).

I have carried so much shame over how I function, over my inability to stay with, to work through, to not go into a hyper state (that ultimately will provoke a hypo state and lead to the next hyper state). I came to resent myself. How come could I not do what I was supposed to do?

I am a very intense person (until I hypo). The intensity is my curse and my blessing. I love when my brain goes into full speed. I have fun when we explore all the fragments, pieces of information that we find. In my head – I can put them together into intricate systems. I SEE how it all is connected. Unfortunately, the rest of me cannot keep up with this intensity – and the output never comes close to what I have in my brain. I have no idea how to structure and put the masses of what moves around in my head, down, onto a paper. Talking is easier, but then that is not how society works, I need to “produce”. Papers, books, research. My brain just wants to take in more, expand on things, deepen them, build internal trees and structures, not find methods and organize how to make it become someting in an external world. My output capacity is like 1% of my input capacity. I see connections and structures in my head, I am a visual thinker, but the painstaking job to put those pictures into words, or illustrations – stops me, and my brain is already moving to some new angle of something. I seriously do not know what to with this. Using the re-use theory, I can see how I take in too much detail and information, without filtering it, and then it becomes impossible to present it in a cohesive and structured way. It is like having 20 written books and a couple of hugely complex theories in my head, at the same time – and somehow get them out of there and into the world. I feel like am too much for myself and I constantly disappoint myself. Yet I am having fun while being in it.

Limiting myself is not my thing. I know there is a saying, in e.g. art, that there needs to be limits, frames, rules – that decides what you can do. I do understand the thinking behind it, but it takes me 5 minutes (or 5 seconds) to immediately wonder what I would find beyond the frames, limits, and rules (those are all man made anyhow and supehard for me to comprehend). This is often called disrespect. I do not intend to be disrespectful. But my brain does not obey orders that tells it to contain itself. I fully understand the need for systems – but I can’t operate in them. I pick apart the systems themselves, and it always annoys the ones being in them. I am told my focus is wrong. I don’t know how to be different, without not abandoning myself.

There are a lot of other struggles and problems involved. I clearly suffer form a huge lack of knowing how to fit in. Follow. Stay put. Do as I am told.

There has been one thing that has made me do that – and that is the fear of rejection.

I do need people. I feel so odd and alien it becomes even more important perhaps to hold on to the ones that stops by.

My traumas and the constant rootlessness, the isolation that came from the abuse and neglect I experienced and the constant moving when I grew up have, I am sure made it all worse.

My parent’s inability to care for, love and protect me did not make it better. Other rejections throughout my life have only added to injury and strengthened my fears.

This seems to be an unfortunate combination of genes, abuse, neglect – and outer circumstances that has not worked in my favor. And I have been too scared to insists it is okay to be me. When I had to choose between being me – and having those persons in my life. I constantly choose the persons.

Now, having experienced more recent rejections of who I am, of me – at the same time as I feel I have a deeper understanding of myself – (not done – but knowing I am on the right path here) – I feel I have to follow who I am, and give myself what I need. If I fail to do that, I will at least have tried.

I have no idea of how to do this. The tension between letting myself lose and grow into me – and my fear of the world, my ways of becoming overwhelmed, my need to feel safe – are in constant conflict.

I need to go out and stay home. I need to challenge myself and rest. I need more routines and more freedom. I need more collaborations and to follow my own path. I need more self-discipline and to just immerse myself in experiences and joyful moments. I need more sleep and more working hours. I need fewer social activities and more social activities. I need to delegate and to do more on my own.  All at the same time. All while having the smallest and the widest window of tolerance. I am super expansive and super constricted.

… and you get the picture.

And in that I cannot but conclude. I totally get why people tend to move away from me. The difference for me now, is that I will keep reminding myself of – I am me. What it is in me that they cannot, will not, cope with – is not for me to get stuck on. I need other people. I think I even perhaps more than others need people I can depend on. Yet it seems by being me – I make that impossible. That too has been a constant tension in my life. But the conclusion holds. I need to stick with being me, exploring more of what that means.

I do see what I write can be read as I am trying to say I am some brilliant genius. That is not my intention. I describe my struggles and my perception of what it is to be me. With the difficulties I have, it seems highly unlikely I will contribute to the world with anything close to being brilliant. But what I want to do – is to give myself a decent chance to continue to explore me – and see what then comes out of that. It would make me very happy if I manage to put some of my thoughts and ideas, writings and pictures into books. I want to share what I have on my mind, share my perspectives. Not because of some self-claimed brilliance – but because along with two of my favorite things to do – think – and experience, the third one is – sharing in conversations. I love deep conversations, conversation that dares to go in all directions, that does not stop for and avoid the hard parts. And my way of inviting into having them, is by sharing me and what is on my mind (in my heart and soul).

I simply just want to be me. Realizing that me – is a pretty awkward and still insecure me. But never the less, it feels like as a “must”. I must be me. And then everything else have to come second.  

And I know I keep writing about that. And I have already started. Each day, I take little steps on this self-actualization journey. It is slow. It has to be. It is full of repetition and obstacles.

I will keep on carrying on. I am really not heading anywhere with it, there is no specific goal, no specific destination to reach. Just more self-knowledge to have and by that, a better understanding of humanity at large. That is, what is different with me, what is similar? What do I need? What do others need? How do we meet – as humans, to support each other in the best possible ways?

Text and pictures are copyright protected © Katarina Lundgren 2021

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Saturday, 20 April 2024