Today marks my 5th year anniversary since a virus named meningo encephalitis scrambled my brain really good. During the last five years I’ve realised a few things, one of which being how little I knew about the brain…how little I knew about my own brain.
Prior to my acquired brain injury, I think that a part of me took that beautiful brain of mine for granted. It was ticking along like clockwork, effortlessly doing all the things that it should be doing, and unbeknownst to all the marvel that it was doing, I was ripping all the benefits.
Then, a virus came along, found its way across the blood/brain barrier, inflamed my brain beyond belief and started disrupting and damaging neurones and neuronal pathways. The very important gearing of my then immaculate clockwork mechanism started having dents here and there and to miss parts altogether. In seeing pieces disappear from my clockwork mechanism, it felt as though my brain started going wonky...like REALLY wonky. The smooth running of this intricate machine was no more and it came along with a wave of fears.
In the absence of explanation following this turn of event, I was unaware about how each dent, each missing piece of this intricate mechanism could have such a huge flow on effect on my overall body and mind.
With the lack of knowledge, I started doubting myself, “it must be all in my head”, “I must be making this all up”.
I saw myself ignoring and minimising all the signs that my injured brain sent me to slow down, all its requests to give it room to heal. My downfall...I was JUST so determined to make my brain run like clockwork again. It’s not until much later that I realised that the missing gears meant that I had to find new ways, that I had to build a new clockwork mechanism altogether.
Personal learnings
I the past five years, I have learnt a lot about myself. I have grieved over many things...my old self, past abilities, friends, aspirations and dreams too. I have been tossed around on a roller coaster ride that I'd never wish to embark in first place. But there I was, sometimes sitting at the front seat of this terrifying ride and other times watching it come to an abrupt stop from afar. I've felt lost, I've been scared, I've been sad, confused, frustrated, angry and down some pretty dark paths too.
However, it turns out that you learn a great deal from navigating unconventional paths too. I've learnt that, one way or another, I can get through tough times. I've found myself to be extremely resourceful, I've found ways to slowly rebuild a new self, I've learnt to let go of what no longer serves me, I've found ways to turn all the negative that I was experiencing into something positive. I've learnt to REALLY appreciate the little things in life. I've learnt that strength can hold different shapes and sizes. It hasn't always been easy and it still isn't, but I'm finding ways to move forward. I'm finding ways to feel accomplished again and that is a great feeling!
Brain learnings
In the past five years, I’ve learnt a huge amount about the brain. Throughout my recovery journey there was a desire to understand that WEIRD yet still WONDERFUL brain of mine. I’ve read a lot and I’ve researched a lot because along the way, I realised that I needed to be my own advocate. In advocating for my physical and mental health in an array of situations, gaps became obvious. Gaps within my family and friends' network, within my greater community and within the health system too. I desperately wanted to improve and make the right decisions in looking after my overall health, but I also began to want to do my part to see how I could help implement changes when it came to brain health.
That's when I started sharing my humble personal experience. In sharing my thoughts and some of the knowledge that I had gained along the way, I noticed that I could help others. That was extremely gratifying. After walking around aimlessly for a few years, I had finally found a new focus. This soon led me to exploring how raising awareness could translate into potential changes in the way brain injury is addressed, treated and cared for. There is so much to do, but I remind myself that small actions can lead to great changes.
About those brain injury anniversaries
On this 5th year anniversary, I finally find myself not reminiscing so much about the person that was before encephalitis and brain injury, but looking forward and avid of discovering where the next chapter of my life will take me. My brain definitely still isn't running like clockwork, but I don't let it stop me or scare me from attempting new, and not so new things.
Perhaps it isn't the path that I was heading on or the path that I would have chosen for myself, but it is one that I've grown to love and that I'm feeling very proud about. So five years on, encephalitis remains a life changing event, but it isn't resonating with the absence of a bright future anymore. It's provided a ton of learnings, new friends, new dreams, new achievements and I can honestly say that I know that I'll be ok...whatever comes my way!
Food for thought?
How do you approach your brain injury anniversaries? Have you seen a progression each year? Are they a sad moment or an opportunity to look at life from a new perspective...or perhaps a bit of both? What do you wish you knew on your first brain injury anniversary that you know now?
I can't wait to read your thoughts on this as I know that my perspective has changed heaps over the years.