life in the darkness

In order to start this post, we have to travel slightly back in time.

2011 and I was at a college in Hereford. So far, I’d been reported for doing stuff that society considered to be unacceptable. Not adjusting to change, for example when my friends wanted to do something else, I would get frustrated and annoyed, doing everything I could to sabotage their plans. I had had enough of being summoned to the office almost every single week. For one reason or another. What was going on? I can remember a few examples. But vaguely. I was brought in for many a strange thing, listening outside doors? Using the key in my corridor to enable me to get to my friend who was upstairs to talk to her. Speaking out of turn. But… What was out of turn? Not understanding why people did not like my views. Trying desperately to protect my friends when they were going into potentially bad situations. But what was protective and what was too far? Why did I protect her? Was it fear or was it the fact I could tell it wouldn’t be good for her? Or was it simply my experiences alone making me want to protect her.

I was having CBT with a counsellor, to try and figure these things out, but they were struggling. They were trying everything in their power to help me understand. I simply wasn’t understanding. I would agree with her on the techniques we tried, trying to remember how to do things better, or not to say things that would incriminate me or perhaps get me into trouble.. But there was just no getting through. Not there anyway. It was about the 10th time of being summoned. I walked in, knowing already that I was in for it. For starters, the manager did not like me and the feeling was mutual there. I did not like her either. Not at all. The usual start of the conversation was the whole spiel about doing what ever it was I’d been reported for. Then they’d ask me did I know that was wrong or did I know how that person would feel. I would say yes, but cry at the same time, perhaps because I felt some sort of remorse or because it was possible that I couldn’t understand but could not verbalise this? Or express it? A lot of the time, now looking back, perhaps I did not understand how what I was doing could have hurt people or how it was wrong. I thought people were getting at me, always on the attack. This time at college was about to change things. They assessed me for Aspergers, now known as high functioning autism. It turned out I did not have this, but was there something else? It would take almost a decade of sheer hell and trauma to find out the mystery to my behaviour and one that would be a shock to many, but a huge relief to me.

Again, we have to move slightly back and turn the hour glass just a few months before that meeting in late 2011. Summer of that year, and my friend had started to notice changes in me. He was on vacation and doing Russian homework at the same time. My brain perceived it as, if you are on holiday, why work? You should relax. My friend was not one for relaxing. His studies were important. Likewise are mine. This day would turn into a nightmare. One of many that would test our long-standing friendship to its very limit and push it over the edge, potentially breaking it for ever;This day I flew into a rage, shouting at him, at the top of my voice, just because he was doing his homework. It culminated in his grandmother telling him to end the call. It took a while for me to calm. We didn’t think anything of it, but the rages and mood swings kept on coming. With ever more virulence.

Something was wrong, but we had no idea. No idea that a superstorm of electricity was building in strength in my brain; and when it came, it came with catastrophic consequences. That storm was epilepsy.

Now we return to late 2011 when the first seizure struck. It was a few months later, into 2012 when things were more noticeable. My behaviour was more destructive, my ability to understand the bigger picture as some call it, to empathise and reason, were impaired. The seizures were not frequent, but more came in 2012, 2014, 2017 and 2018. My impulsiveness was stronger and at times, destructive. The anger was worse, with violence. The relationship with my friend was strained. We were being tested to the limit, something was going to give somehow.. But what was all this? Why had this all happened? There was a cause. But what was the cause? At the moment people did not know.

In 2018, I had a neurologist appointment. Looking at my records, as previously mentioned in a post, he mentioned about a haemorrhage in my right hemisphere. I did not think I had one, until I was told by the GP that I had indeed, had a haemorrhage in my right hemisphere. This was also where my epilepsy originated. Before generalising.

I started then to wonder myself, was there a connection?

Then this year came, with lockdown. This year was also when the friendship with my friend was pushed over the edge. It was then that we made the connection between my brain injury and my epilepsy. Yes, my MRI scans are normal and show no evidence of the haemorrhage, but my GP informed me that it has left invisible damage to neural pathways and cognitive ability. The epilepsy has in fact, changed my personality and slightly affected my ability to empathise and reason. Now we know, what caused these rages and unexplainable moods. From the highs, to the severe lows. The lows that would make me feel suicidal. The lows that would make me not even realise I was feeling suicidal. Now my counselling has taught me to become more self aware of things, to employ more strategies, as well as joining some groups for people with brain injury. I am now very relieved as I understand my little quirks and how I can somewhat rectify them. I have a better support network of people around me, who remind me of my techniques and help me. Explain when I may be wrong and how that will impact others. It may take a while for me to understand but I am getting there. I am also going back to my studies of psychology with the OU. Open University. I have decided I would like to help others with ABI (Acquired brain injury) like myself and potentially go into the neurorehabilitation area of things. I have finally accepted it is my ABI with the epilepsy that has changed me. I can fix some of it, but not all. It’s the acceptance now that has to come from others, but it will come. Eventually. I will still be curious. I will still ask questions about my own brain, because I’ve always been curious about it, ever since my epilepsy developed. Hopefully now, this means my life will have changed for the better and I can move on, onto pastures new. As they say. To help others, not just myself. I do hope you enjoy reading my posts. I apologise for the lack of updates. May you all find something informative in my posts. Even though it may be hidden.