Quite a few months ago, I set out to raise awareness of encephalitis (e) & acquired brain injury (ABI) via my participation to two all women adventure races in New Zealand. Being a self motivated and determined individual have always been strong aspects of my personality. Prior to the first race, in spite of slow traction with the media I persisted and kept finding ways to stay motivated. The tides eventually started shifting. Along with those breakthroughs came joy, proud moments and that feeling that all my hard work had not been done in vain. That feeling that knowledge shared amongst a greater audience may even trigger some sort of change, for me and for those affected. I know, it almost sounds like I was either that full of myself or being completely foolish. I still haven’t quite decided which it is as I’m writing this.
Since I’ve completed the first race, I have REALLY struggled to keep my spirit up and it feels as though all motivation to keep going on this mission to raise awareness has vanished. The race came at a huge cost to my brain health and just as I was starting to bounce back, another blow came in the form of the flu. As a result, my energy levels were back to an all time low, I felt so weak, my mind visited way too many dark places and it made me question why it is that I’m trying so hard...all the time. Why am I trying to be brave all the time, why am I trying to put a smile on so much, why am I trying to push forward, what am I really pushing forward to, why (even when I’m down in the gutter) do I keep putting others before myself? And the list of “whys” truly kept going on and on. I felt so alone, so sad, so misunderstood and so unmotivated to attempt anything.
I tried to reach out on various occasions, but it felt as though my very troubled state of mind was not really seen or heard...silence and absence often remained. Now, I was in a very bad mind frame and I tried (really hard) to be mindful of that. I knew my mind frame altered my own perception, I knew people were busy, I know people all have their own shit to deal with, but it also felt as though people didn’t really want to be confronted with the hard truth.
So I ended up isolating myself, even more than my post e & brain injury isolation mode...and I HATE feeling isolated! Isolation is the complete opposite of the ME before e and I don't think I’ve gotten used to it yet.
I would have thought that the intense joy that came along with all those little successes experienced pre-race would have been enough to inject some motivation and strength back following the race, but the end result is that the payback, sickness, disillusion and disappointment experienced tipped the balance in the wrong direction. It was really heavy to carry & I was pretty heavy to lift back up this time around too.
I have given myself lots of pep talks in the last 4-5 days and it feels as though I am slowly starting to get some of my motivation, strength and energy back. Me finding the energy and will to write about this rather unpleasant last few weeks is an indication that my head is slowly getting back on track, that my mental health balance is slowly equalizing again. I am still feeling pretty fragile though and given all the struggles experienced since the first race, I am going into the second race (which is just a few days away) with a lot of fears - also the complete opposite of the ME before e. I’ve paid a harsh price over the last 3 weeks and I’m not sure that I can trust my physical and mental abilities this time around. I am unsure whether enough time has passed to potentially put myself through this horrible roller-coaster once more.
We’ve all heard the saying “what doesn’t kill us makes us stronger” and I tend to agree with this saying...most of the time. However, I’ve come across the following the other day and I feel it sums up exactly what I’d like everyone to UNDERSTAND as part of my mission to raise awareness of e, ABI and, why not, mental health: “what doesn’t kill us makes us stronger” (yep I agree and it sounds really nice in theory too), ”but it can also make us more vulnerable, susceptible to further injury, perhaps - dare I say it - weaker.”[1] Not admitting and recognising that e and ABI has made me weaker in lots of ways would also be mistake. The articles & the radio interviews don’t mention that aspect. There is so much to say and do to raise awareness that you can’t cover it all in one go. In my personal experience, the second part of the quote also matches my reality and it is no doubt shared by many with health challenges. Being left “weaker” is a reality I wish more health professionals, colleagues, friends and family members would understand and acknowledge. I wish more support was offered to those who try so hard all the time.
When someone tells you it’s been pretty though lately, it’s simply because it’s been though. It’s them being brave enough to speak up and most likely their attempt to seek help. If they are precious to you in any way, please just take a few minutes to listen, really listen. Not everyone may have been given the tools to manage this sort of situation or be able to find that last little bit inner strength to slowly come out of the shadows again. In a fast paced world remember to BE KIND.
[1]: Lance Burdett, Dark Side of the Brain