Holy crap! Two posts in two days, y’all might start thinking there’s crazy afoot!
So, I write a post about my brain and the swirligig dance party it is and I get a lot of feedback. People asking for clarifications because they might also have some similar issues, mostly, but also messages of support and love, thanking me for sharing this info.
First, thank you for the emails of love and support. Depression can put you in a really dark place sometimes. You often feel like you are so very alone. Hearing from other people helps enormously. Another thing that helps is being able to read that you are not alone, that you aren’t singular in your brokenness but that there are others fighting the same fight.
That’s why I write about this. It’s very hard to sit down and write, to find the motivations and the correct words and the concentration to put them together. That why there are so few posts in the last 18 months. I write these words because I can and I do it to let other people know they are not alone. The messages that I get, the ones sharing love and support, the ones that let me know I am not alone, those are the messages that remind me to keep writing so that I, too, can let people know they are not alone.
Like I said, I got a lot of messages from people wanting to share their experiences with similar situations and others asking for more details as they might be dealing with something similar. I want to share a few scenarios that can hopefully shed some light on what it’s like to be in my head.
I talked about the grocery store, how it overwhelms me and suddenly I can’t read or comprehend what I am seeing. Just walking into the store can trigger this, grocery stores are jam packed full of stimulation. There are all the products, the ‘HOORAY 32 for $1’ signs, there are people everywhere and they are moving, I need to get a cart, I need to get my list out, I need to navigate. I almost never go to unfamiliar grocery stores anymore. I have the few that I know well and I stick to them. Most grocery stores have the produce right up front, so the first thing I do when I get inside and start losing direction is to find the oranges in the produce section. Oranges are bright and easy to find, they are stacked high and often in the middle. Carrots are also orange but they don’t work, there are too few carrots and they are in the middle of the green wall (the green wall is that wall of green leafy veggies, I avoid that until I can get my bearings.). Oranges! I find them, I spend a few seconds waiting for the gears in my head to start catching again.
The gears in my head. Oh how I love the gears in my head! I’m there in the grocery store, things are going well, I’m finding the things on my list. I’m not getting lost. I’m doing pretty good! My list says ‘canned beans’, let’s go get some beans! I love beans! I get to the bean section and I’m looking at my options, but…hm…my list says ‘beans’…what kind of beans? Let’s do black beans, that’s something we eat a lot, right? Black beans…looking…shit! SHIT!! What brand! What brand of black beans do we buy? Do we even have a brand?
And all the gears in my head slip at once. Now I can’t see anything but shapes and colors. I see letters but they are meaningless, the pictures on the cans are nothing. Up and down the aisle I only see shapes and colors, no words, no objects, the lights are suddenly too bright, the music is so loud. The more I try to pull it together the faster the gears spin. The faster they spin, the greater the panic. I can not understand anything that I am seeing and I can’t make it better. Inside my head things are flying, I’m panicking and that leads to a rain of self castigation falling all over me. “Goddammit, pull it together! Why can’t you just do this? It’s not hard! Stop being stupid and just do this! WHY AREN’T YOU DOING THIS?? People are staring at you, they know you’re crazy!”
I’ve been learning ways to slow things down again, to regain control so that I don’t have to abandon my cart and leave the store (because abandoning my cart is a shitty thing to do to the employee that has to put everything away and if I act shitty like that then I also get to deal with that guilt). I stop everything in my head, even the insults. Stop. I close my eyes and take a long, slow breath and I tell myself that taking a long slow breath with my eyes closed will NOT make people think I am crazy. Just breathe. Open my eyes, breathe again. I reach up and I grab at a shape, I know it will be a can because that’s what I saw. I bring the can closer and look at it, I know that people will stand for a few seconds and read labels. I pretend to do that. Focus on the can and slowly there are words and a can and a picture of beans on the front. Deep breath. Quiet the head again, deep breath. Remember that the world will not end if I buy the wrong beans. In fact, I remember that there are no wrong beans, we eat a lot of different kinds of beans.
I read the labels, my mind is quiet. I can compare prices and types and can get on with my shopping.
And what about cleaning my kitchen? That’s something that trips me up all the time.
I walk into the kitchen and look around. I know I have to clean it. I can see dirty dishes and pans, jars and bottles and things that need to be put away, counters that need to be washed, trash that needs to be taken out.
The panic starts almost immediately. I ask myself, ‘what do I do first?’ and blammo the gears slip. All of the things are there, I know they have to be done, but I can NOT figure out how to start. I look all around, all I can see is the mess and all I can feel is the shame for having this mess and then the panic! Why can’t I just keep my house clean? Other people do this, they don’t have these problems. What do I do?? There are so many dishes everywhere and I don’t know where to start. Why am I so stupid? Why am I so lazy?
I crying as I write this.
I will stand in the middle of my kitchen crying and panicking because I just cannot figure out how to do this. I will punch myself in the legs because I am so disgusted with myself.
This is why I lost my job. I knew I had to do things, but if I missed something or fell behind on a task, that thing would spiral out of control in my head and then I just could not do it. I had all kinds of little tricks to help keep me mostly up to date, but things kept slipping and I would leave my desk and go to the bathroom and cry and hate myself.
And people say, “well, you just DO IT. You pick a thing and you start and you just do it.”
But I can’t. Trying to pick a thing to start with is what triggers the issue. It’s the most amazing spiral you will ever experience. I need to do something, but in order to do something I have to pick the something to do and I can’t pick something because all the gears in my head are slipping and that’s making me panic and the more I panic the worse it gets. Then the self loathing happens and it’s fucked from there.
Most people cannot imagine this. They can’t even envision a scenario where they would act like this. It makes no sense to them at all. I could describe it until I exhausted all the words in the world and still it would not make sense. You just pick a thing a do it! That is what they can imagine, picking a thing and doing it. Nothing else makes sense.
This is what is in my head. It beats me down and I am powerless. It fills me with shame and anger most of the time. Learning that there is a real, physical explanation for this does bring relief. Soon I will learn to stop calling myself names, to stop being angry with myself.
And for those who wrote to me today, I hope that this can help you find a way out of this quagmire.
I am not the only one and neither are you.

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.