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Beyond the Physical Impacts of Encephalitis and Acquired Brain Injury

We recently have had a few days away as a family at our Nana’s place in the Bay of Islands, NZ. She’s got a fabulous place and is always so welcoming. During our stay, one of her daughter was there with her family as well. We have big catch ups once or twice a year with the whole family, but life being so busy, we don’t get to catch up nearly as often as we’d like to. It was lovely to have a slice of the family while at Nana’s. Lots of chatting happened, lots of playing outside with the kids and in my case, lots of catch up sleeps or rests.

When we organise to see the family, we always know well in advance so I generally plan for it quite carefully since I’ve had encephalitis (e) and acquired brain injury (ABI) as they are quite taxing events on my health. I want to put my best foot forward and I want to partake to the best of my abilities as much as possible too. Planning ahead for family gatherings means lots of early nights in a row, trying not to miss out on my afternoon rests and limiting social and physical activities to ensure that my brain energy is well optimised. Lucky them, they often get to see me under the best light. But let’s face it, limiting things to this extent is far from the usual norm or reality when you have a young family. Therefore the portrait that they get to see is quite biased.

So over the few days we spent at Nana’s, many got to see a truer picture of what our family life has been like over the last few years. They got to see how greatly and how quickly things can vary within a day, how if affects my whole functioning as well as our family dynamic. I don’t think they had realised the toll "e" had taken on all of us and I’m not sure they had realised how much we have to adapt and re-adjust to the daily reality as it unravels in front of us...often with little warning.

While I was sleeping here and there to try to recharge my Weird Wonderful Brain, many important and very valid questions were asked. I don’t mind people asking questions, it shows they care and that they have a vested interest in my health. They proposed options for us to look into only to realise that we had already invested time, money and energy down that rabbit hole with very little success. They got to see the aftermath and the daily grind that they don’t get to see at the family gatherings. It’s nothing new for us, but I think it’s fair to say that our stay at Nana’s has been eye opening for them to a certain extent. We are a young family faced with additional challenges and unless you get to see them first hand, I think it is just hard to fully grasp.

Having our struggles acknowledged was in some ways very reassuring and comforting for me. I always try to put my bravest face on, but one can only remain brave for so long. Seeing the physical effects that "e" and ABI have during a busy family gathering is one thing, but seeing their effects three years into recovery on the back of some of the most routine & daily tasks is another. There are the physical effects which can be pretty obvious (fatigue, slurred speech, loss of balance, etc.), but there are also the less obvious effects that "e" and ABI have had on my mental health. I doubt that many realise how deep those can run.

I often address in my posts that recovering from "e" and ABI is the hardest mental game that I’ve ever had to play. Describing the struggle to stay strong and positive even when you get knocked down over and over again is not an easy task. You don’t want to come across as melodramatic, but I believe that not recognising the effects it has had on my mental health would also be a mistake. To make an analogy with an ice hockey game, maintaining your mental health when you’ve played the official 3 periods of a game, played in overtime, came out unsuccessful during the shootout period and carried on playing in sudden death, makes for a very long and exhausting game. No matter how good of a player you are, an ongoing sudden death status can have for result to make or break you.

From my own experience, I’ve found that when the odds are at their worst, I’ve always found strength I didn’t think I had. Out of nowhere, I manage to pick myself back up and start all over again...which is good I suppose. It’s the grey areas that I struggle with. Those daily reminders that things aren’t quite right. No matter how hard I work to keep them at bay or try to manage them, I keep going round and round that infinite loop. Those daily reminders are mind defeating. They slowly grind away at my mind and soul...stealing a little bit of that usual sparkle in my eyes. That’s why I always try to make the most of my good days to try to shift the balance once again or at least try to level it up. I like my sparkle and my plan is to keep holding on to it, finding it in the most unusual places or create my new version of them if I must.

Having the mental health chat with people we love is rarely easy but letting people in is also somewhat liberating. While at Nana's, I have found some comfort in shedding some light on the truer picture of the struggles we are experiencing...physical and psychological. I felt more “normal” and understood and that in itself enabled me to get some of my sparkle back.

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