Updated: Apr 16
Encephalitis and Acquired Brain Injury recovery have been hell of a hard ride over the past few years, but I have to admit that I was never prepared for the roller coaster of emotions that was to come hand in hand with this type of recovery. I think that managing my mental health holds a very close second place to the constant management of my fatigue levels.
Over the last few months, I have been putting a tremendous amount of efforts into raising awareness of encephalitis and ABI in my country of adoption, NZ. It has, to say the least, been absolutely exhausting. Countless hours were invested in building my approach, tweaking my story, developing various angles, researching which media could be appropriate, working my contacts, finding out which journalists may find my story appealing, following up again and again and often with very little feedback or success. That feeling of failing and defeat started to invade my thoughts a bit too much last week to the point where I contemplated letting go of this passion of mine.
You have to understand that raising awareness of e and ABI is something that I hold very close to my heart being a survivor myself. This has been demonstrated time and time again by my actions, but I have now discovered that getting people interested in sharing my story with “e“ is just as much hard work as recovery itself. I get that it’s nothing personal and I’m assuming that this isn’t limited to encephalitis but to many more conditions that aren’t so mainstream…which made my heart bleed a little more. Last week, after many failed attempts, my positivism and determination took a HUGE FALL. I was frustrated, disappointed, sad, angry and so close to throwing the towel it’s not even funny. I had a wee cry and sat there vacant for a while. I had to make myself believe once more that encephalitis or not, I am capable of great things. I was not to let this media speed bump dictate my beliefs. As I usually tend to do when I hit rock bottom, I made the very conscious decision to roll my sleeves up “one more time” to prove to myself that all these efforts had not been done in vain.
Giving up has never been part of my make up, but I can now appreciate how other people, who would be just as passionate for their cause as I am of mine, would eventually turn the page on raising awareness as it is far from an easy task believe me. Anyhow, I pulled my head in, made a few more follow ups, reached out to a few more journalists/media and I kid you not, the tide started to shift. I can’t say that it happened “all of a sudden“ because this shift is no doubt the result of having invested many long hours, a tremendous amount of efforts and a direct result of being determined not to give up. Early this week, I started getting a few responses, I got a few calls here and there and at the moment, the ball seems to keep rolling and I decided to roll with it and enjoy the ride. A dear friend sent me a quote today that resonated so much with the emotional entanglement that I was experiencing. This quote couldn’t be any truer given the circumstances.
This brings me back to mental health. Challenges around maintaining a steady mind frame arise from all sorts of situations. You don’t need to suffer from some sort of trauma, to live with ill health, to endure strained relationships or to have absolute rotten luck for your mental health to waiver. Life is so busy nowadays that we all tend to put high expectations on ourselves and we all aim to be perfect at everything that we undertake to the point where we often overlook what is the most beneficial to our good functioning and happiness…our very own mental health. Luckily, giving up isn’t in my make up. This doesn’t mean that I’m not going through moments where I’m absolutely struggling, it might however mean that along the way I was presented with tools and opportunities that allow me to not give up on my mental health. This is where raising awareness of mental health and supporting those faced with challenges, regardless of their nature, counts. Let’s be real, let us recognise that this is an issue for many, let us try to normalise it by actually letting it be ok to say that we are not ok and let’s make the coping tools available to those who struggle. That is the reality of raising awareness.
For those who would like to help me raise awareness of encephalitis, please view our fundraiser page