Ding Dong Brain Gong

Once again, I shuffle back looking chagrined and bearing apologies. We’ve done this before. Sorry.
Lots and lots of things have been happening, many of them only interesting to me and a bag of pumice, so I don’t shares those so much (though, if you are a small bag of pumice, let me know, I’ll keep you updated).
There’s been sort of a great big development in the ongoing pseudo-drama that is my head and the cordyceptic style infection that runs through it.
My therapist and her supervisor were going over my case and the supervisor started to see a pattern. At first glance it looked like all the markers for aspergers or autism (depending on if you think they are the same or different, I have no opinion on the matter). But I’m not autistic. We did a couple assessments and I was very clearly not autistic. I get on well with people, I understand nuance and body language, I have empathy and can match photos of faces to emotions (except for the picture of the Papuan guy, he was making a face that meant “ew gross” but I just thought he was angry). So, what was the deal? I was having the same sorts of sensory issues that one would find in an autistic person, aversions to over-stimulation, rocking, finding it harder and harder to leave the house or even to leave the bedroom some days. I would do very focused extra-stimulations that allowed my senses to focus on something specific in a bid to quiet the rest of the world. All I wanted to do was quiet the world.
I would go to the grocery store and as I was going down the aisles all the packages just turned into colored shapes. I would try to read the labels, I would see the letters but the letters were just shapes, the picture on the packages were just blobs. I could clearly see these things but I could not understand them. I would have to move myself to an aisle that was not busy and try to wait it out. I would pretend to be looking at the labels, and inside I would be willing myself to not cry…please do not cry…if I cry then I have to leave…do not cry! Most times I didn’t cry, sometimes I did. This was happening more and more frequently, my senses were becoming overloaded and I was powerless to sort through it or make it stop. Everything was too loud or too bright or too overwhelming and I just kept shutting down. I’d never had this before. Certainly, I’ve always been introverted and would need time alone in order to sort of re-charge, but this was different, this was out of my control.
What to do? What the hell did all of this mean? Exactly how crazy was I? We knew that the brain goes through another developmental bump in the mid-thirties and this was right on target, but what was causing this particular issue? Why now?
We did more assessments, then I found an occupational therapist and she did her assessments. All these assessments! Do you like cheese? Can you dance? Are you afraid of heights? And on and on and on. I tried to be very careful, I didn’t look up sensory integration dysfunction or sensory processing disorder. It’s too easy to see yourself in any list of symptoms, it’s too easy to color your responses without even realizing it.
But, there it was, a sensory integration dysfunction.
We talked about it, the various professionals and I. I learned that it can happen as a result of traumatic experiences in the first 5-7 years. That didn’t surprise me at all. I do not really talk about my biological family here as they have no business in my life and I refuse to even let the ideas of them get in my way. Considering how fucked up my biological parents were, it was no surprise to find a connection between goofy brain issues and their actions. Mostly, I was looking at it in sort of a “I was born sort of goofy and my parents exacerbated the issue with traumatic experienced.
When I heard ‘traumatic experiences’ I sort of pictured something like, ‘whoa, that was traumatic, lets not do that again!’ like a car accident or your dog dying. Talking with my therapist and her supervisor (who is going to become my new therapist next week) I learned I was wrong. By ‘traumatic experience’ they don’t mean ‘yelling at you when you puke on the rug’, what they really mean is ‘traumatic injury to the brain’. It’s the kind of thing you find in kids that were shaken or concussed very early in their brain development. Traumatic brain injuries that happen when your brain is trying to integrate your senses and make all the things work together.
You know when you’re a kid and you learn to ride a bike? You don’t just learn how to ride a bike, your brain learns about balance and motion and coordinating your vestibular system and proprioceptive system. You have to fall of your bike a few times so that your brain can learn how to understand what it feels like to fall and what it feels like to avoid falling again.
That sort of stuff is happening all the time in babies and toddlers and little kids. When you interrupt the process with concussions and brain injuries you have a lasting and profound effect on that kid’s development.
In many ways I was very lucky to have gotten through that with so few problems. I could have turned out profoundly handicapped or worse. On the other hand, I do carry irreversible long term problems.
The signs were always there, all throughout my childhood and adolescence there are very obvious markers, but mostly you would have to know what to look for.
It took 37 years for anyone to notice. It took 37 years for someone to say, “this isn’t just depression, this isn’t just rebellion or laziness!” 37 years.
In many ways this is a relief for me. I spent so much of my life hating myself for not being able to do the things other people could do. Why couldn’t I do my homework or clean my bedroom? I would be right there, it’s easy, just pick up the fucking dirty clothes! just clean your room! just turn in one complete homework assignment! Stop being so stupid and lazy!! Stop it!! STOP BEING SO STUPID AND LAZY!!
I loathed myself, I hated myself. It made no sense to me! All the adults telling me I was so smart, I had so much potential that I was wasting! They told me I could easily get better grades, I just had to apply myself. I wanted to! I truly and sincerely wanted to. I would pray so hard, begging a deaf god to bring me the motivation that I was lacking.
Occam’s Razor exists for a reason. You can’t just test for every single possibility, you have to figure out the most obvious answer. Since I did not carry the very profound and obvious disabilities, there was no reason to even think there was something wrong in my brain.
Learning this now is an amazingly huge relief. I wasn’t just some stupid and lazy kid who didn’t want to do her homework or clean her room. I wasn’t just a lazy ass who couldn’t do her job. I had a problem, my brain froze when I tried to do things, panic would set in and a feedback loop was formed. The more I stressed about doing even the simplest of tasks would make it harder to start them and cause more stress and make it even harder. Over and over and over this loop would grind me down to the ground and I did not even recognize it.
It’s a huge relief and hopefully I can use it to learn to not hate myself so much, but 20 or 25 years of loathing is a hard thing to erase. Even now, knowing what I know, I still get furious at myself for not remembering a password or for not understanding how to prioritize a simple task like cleaning my kitchen. Those things that are so easy for others to do, so easy they don’t even think about it, they cripple me and I stand there, in my kitchen, swearing at myself, crying in frustration over my obvious stupid laziness. The depths of my anger at my own self knows no bounds some days.
I am working on this, I am learning about how my brain works and how to accommodate the problem areas. I am learning to be kind to myself, to remember that I deserve love and compassion as well.
But it’s fucking hard, it’s hard to erase a couple of decades of thoughts and opinions.
It’s hard to know that the signs were there all along but no one noticed because I had somehow managed to hold on to my intelligence. I didn’t have a cognitive disability, I was smart, so it must just be laziness.
I am stuck dwelling on the ‘what ifs’ now. What if someone noticed earlier? What if I had some intervention earlier?
What if I had better parents in the first place? What if I hadn’t been shaken or thrown across the room for getting my clothes dirty? What if my brain had not been injured? Could I have been smarter or nicer or better? Would I love myself?
How much different my life would be if I had loved myself throughout.

2 thoughts on “Ding Dong Brain Gong

  1. before you were a couple of paragraphs in, I was thinking: this sounds like brain injury. I am 38. I had a serious stroke in 2010, which has left me with a number of problems, including the sensory processing issues you mention. Public transport, supermarkets, city streets – anywhere that one is bombarded with audio-visual stimuli are now a kind of hell for me. I can no longer enjoy an evening in a restaurant or pub, because I can’t focus on what people are saying through the fog of noise. What you said about the coloured blobs on supermarket shelves was so very damn familiar that I had to write and add a “me too”. I would also like to say that I really enjoy your writing (you write so very well) and appreciate your frank accounts of issues of mental health (also familiar to me). Does your care team include a neuropsychologist? I found mine useful. I would also reccommend the brain injury charity “Headway”, but they are in the UK…

  2. I wanted to write to you, as a so-called normal person without any issues of the kind you describe to tell you that I too sometimes get overwhelmed when faced with a seemingly easy task like cleaning the kitchen etc. It’s not easy for anyone to focus at times. Sometimes I walk into a room, look around for a full minute (it doesn’t sound like a long time but time it someday) then walk right back out again, exhausted and frustrated before ever starting a project. I wanted you to know that those of us who don’t face the challenges you do on a daily basis are much easier on ourselves when we react the way you’ve stated. I’m sure I don’t feel the panic or self loathing you do when I tell myself “Jeez, you lazy sod, get off your ass and clean, write that email, or organize that whatever” Take it a little easier on yourself if you are able. Don’t hate yourself for sometimes not “making the grade”. We “normals” flake out on a regular basis. We love you and don’t want you to feel this way about yourself.

Comments are closed.