Selfselfself: Brain Injury etc

DISCLAIMERS: This is intended as the first of series of posts talking about B.I. and PTSD (I hope to release one a week), but I am not good at writing about myself, I’m not comfortable with it, therefore they may come across as cold or clumsy, I’m sorry about that.

I am only writing from my own personal experience, which may be narrow and/or inaccurate. I welcome any addition or dispute in the comments.

Something happened a decade ago and it keeps pestering my head, oozing itself into mundane moments, when I’m working, when I’m cooking dinner. The thoughts are always there, ready to seep and I think maybe it’s because I never did what I swore I would do – share what I learned to help other people in the same situation. So, here in a lumpen fashion, is my beginning, hopefully it will get smoother as time goes on…

Ten years ago I was in a bad accident. My heart stopped, the flow of blood to my brain stopped, organs ruptured and I got bashed up. The two enduring problems as a result of this were that I got PTSD and a brain injury. A year after the accident (from now on known as P.A. Post Accident) my IQ was tested and found to be below 80. Three years P.A. and I was still spending a lot of my time in bed, mostly unable to listen to music or read, often even unable to open my eyes, but with my mind never resting. Five years P.A. and I read my first book (I could read short things before this). It was a Mark Steel book, but I have no real memory of it now, except that it was an intensely difficult but beautiful joy. At that time, I also started working as a volunteer at a wood. A year later and I was working part time as a gardener. Eight years P.A. I got the full time job I have now, only one person there knows about the accident, although sometimes I get odd looks when my brain goes wonky.

Before the accident, I was always self-sufficient, somebody others thought of as capable in just about any situation. I loved throwing myself into danger, just to see if I could cope. This meant that I floundered and fucked up a lot, but I always found a way of looking after myself – somewhere to sleep, a job, food to eat. With the accident I lost all that, I became afraid of the dark, people, imaginary monsters. I relied on others for everything.

Before the accident I had never thought of myself as somebody in tune with my emotions or body, but I was. I knew how much effort it took to move, I knew what felt good, I knew how I would react in any given situation. I was familiar with the pattern of my own thoughts. I had emotional routines that I would follow without ever having to pay attention to what I was doing, I just felt, and connected with people. With a brain injury everything changed completely. I couldn’t eat what I used to, food made me feel ill. Everything smelt wrong and looked wrong. I couldn’t sleep. My body would do odd things, suddenly lurching to one side, contorting in bizarre ways or becoming completely paralyzed. My emotions became wild unpredictable animals that would leap out at me without reason. I would overreact to everyone and everything and then feel terrible for doing so. The inside of my brain felt wrong, the way my thoughts moved and connected was disturbingly unfamiliar. For a long time I believed utterly that I was an alien inhabiting this dead person’s body. I felt like an imposter with my friends and bored when looking at my old photographs. Plus I was in constant pain with no idea why.

That was all a lot to process, let alone to try and fix. Whenever I tried to focus on one aspect, to solve one problem, all the others mounted up. I was completely overwhelmed. I felt like I standing at the edge of the sea in a raging storm, just when I found my footing I would be picked up and thrown into the waves with no idea which way was up or how to grab a breath.

Working how to care for this new, bizarre, sensitive self took a lot of learning. Despite my crappy brain, I had to learn more about myself, life and the mind, than I had learned about anything previously. How to look after myself, how to act, what mattered. I found that all the doctors and psychologists I saw didn’t really understand my symptoms and I assumed that I was the one being weird. Having met other people with B.I. since, I’ve realized that while B.I. can affect people in an infinite number of ways, certain things I experienced are pretty common. I’m hoping that by passing on what I managed to learn, I can be helpful. I’m going to give it a go.

Some of the things I’m hoping to talk about in future blogs:

  • Understanding what the brain is and how it goes wrong
  • The basics of looking after yourself
  • The myth of getting better
  • True boredom and an ocean of time
  • Psychosis, paranoia and all that drama
  • How to talk to doctors
  • How to become a sick person, how to become a well person
  • Staying awake forever
  • Learning to do stuff again
  • The mechanics of belief