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Brain injury, the hidden struggles

Updated: Oct 21, 2020

Was it as easy as you made it look?

Every now and then I get this comment...”You make it look easy” or “Was it as easy as you made it look from the outside looking in?”.

I realise that people intend well, I know that it’s their way of showing support, I understand that they are trying to acknowledge the heart ache and be complimentary about how the whole thing has been handled, my perseverance and so on. I really do try my best to take it as a compliment and will often say thank you and give them a smile. It feels like the appropriate answer to give, as I doubt most really want to hear my take on things. However, deep down I just want to shout....’HELL NO’ - it wasn’t and is still far from being easy. Have you noticed how much life as it was has changed for me and my family? Have you had the pleasure to deal with the tears, the emotional/physical roller coaster and the limitations that come with encephalitis and brain injury? It feels like you have to be kidding me to be saying such a thing. Thankfully, self control prevails so you will rarely hear that answer.

Fact is that most people struggle to approach others with an illness or disability...I know, those sort of things used to make me feel very uncomfortable too. What we know very little about is always pretty scary and avoiding it is often much easier than confronting our deepest fears or sorrows. So I can relate when I hear those words, but a part of me is also somewhat disappointed. I feel like if all my ongoing efforts are being minimised, as if having someone stand tall again and again, day after day is to be expected. It pinches my heart for a split second but I try not to get too caught up in it. After all, we all have our share of problems in life and who I am to think that mine is worse than yours?

The uncomfortable truth

So why people assume it’s been easy then? The story that I tell myself is heck of a multi-choice one with outcomes that will vary greatly on any given day:

- Maybe they only got to see me on a good day?

- Maybe they do not understand the challenges?

- Maybe they haven’t had to pick up the pieces left by a set back or by a not so great day?

- Maybe it’s easier to pretend that these limitations don’t exist?

- Maybe they can’t be bothered finding out?

- Maybe they fear feeling vulnerable by a truthful answer?

- Maybe it’s a lack of knowledge of encephalitis/brain injury residual effects?

- Maybe they are simply too busy with their own lives?

- Maybe they just truthfully admire how far one has come?

- Maybe it’s a reflection of their own insecurities?

- Maybe they see something in me that I can’t see for myself? - Maybe people are happy to live life blinkered to others struggles?

I mean the list of possible storylines could potentially go on forever. Realistically though, do you truthfully know of anyone in life who succeeded at something, whatever that might be, without any effort?

Challenging the uncomfortable truth

I’ve got a lot of time to think these days and I often wish I could myself go back in time to change how I may have approached some things in life. Knowledge is power regardless of the topic. People who go through hardship already feel misunderstood/isolated enough as it is therefore, asking questions and getting a better understanding is useful for all parties involved. Whether you get to gain or share insight on a situation, I can bet you my bottom dollar that both parties come out winners.

In the last few years, I’ve learned that not everyone is able to take that extra step and it’s absolutely ok.

For every person who struggles to do so I’ve come across one who is willing to jump aboard my weird and wonderful roller coaster ride...often when I least expected it.

In no particular order, a hug, a chat, a laugh, a bit of a cry, a listening ear, a cup of tea (or glass of wine), a text message, a walk, a home visit, an invitation, a helping hand, a tap on the back, a special delivery, someone else acknowledging that the situation utterly sucks, being reminded of the good within the bad and of the little wins is sometimes all you need to help you rise and stand tall once again.

There is a core group of people that have been real pillars, that have seen heaps of the daily ups and downs, but around this core group of people, there has been so many more people who have helped more than they can ever imagine.

How easy has it really been?

This whole situation and getting used to a new normal following “e” is freaking hard...not at any point in time since the beginning of the recovery phase has there been a part that has been easy. It require constant effort, discipline, good decision making, pacing, fatigue management, learning/re-learning skills, acceptance, grieving, building your strength back up, courage and, by far, it’s been the hardest mental game I’ve ever had to play. It is very much of a 3 steps forwards, 2 steps back experience. Inner demons have had to be faced, hard decision have had to be made, energy not readily available has had to be spent - so although it may come with the best of intentions, please know that: “No, it isn’t hasn't been as easy as it may have looked.”

It’s like the whole iceberg metaphor, what you may have got to see is the tip of the iceberg, the core of the whole story is hidden beyond the surface. Hopefully blogs like this one helps shed some light on what lays beyond the surface, help raise some awareness for people dealing hidden disabilities.

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