Updated: May 26
Christmas Day has been one of the hardest day of the year for me in 2020. Although gatherings are always hard since encephalitis and acquired brain injury, I was really looking forward to “celebrating” with my partners’ family and the kids. However, my Weird Wonderful Brain had other plans in mind for me.
Within what felt like the space of a few minutes, my brain went into near complete shutdown. My speech disappeared, the few words I could utter were no more than whispers and required an insane amount of effort. My coordination went and it felt as though I couldn’t walk unaided. I felt SO SO weak and shaky, it was absolutely insane. My vision stopped being able to keep up with what was unveiling right in front of my eyes, the nausea kicked in BIG TIME and it felt as though I couldn’t process anything anymore. Half way to our Christmas gathering destination, we made the very wise decision to turn around and head back home. It felt as though I was barely conscious...or perhaps I was dosing in and out of sleep? Once we got home, I curled up into bed and apart from waking up for an hour or so, I slept from 2:30pm until 6am the following morning. I couldn’t think, I couldn’t try to reason what had just happened, it was just too much to even contemplate finding a reason for this near complete shutdown.
When the next morning came, I was a bit better, but I was still in a much reduced operational mode. My Weird Wonderful Brain was definitely still trying to reboot itself. I had however recovered enough to grasp the enormity of "whatever" had happened the preceding day. But what did happen exactly? The thing is that we actually don’t know what triggered this near complete shutdown. The not knowing is scary because if I can't find a reason for it, how can I stop it from happening again? I know my brain does lots of Weird and Wonderful and most of the time I can justify them, but looking back on the events of the 25th and the few days preceding it, I truly cannot pinpoint anything that would justify such a drastic shutdown. Anyone who has had a brain event, let it be a stroke, a viral illness, an aneurysm, TBI, etc. would tell you that surviving those traumatic events leave you with baggage that you carry around constantly. When events like the one of the 25th occur, you simply can’t help thinking that something quite obscure happened. The not knowing feeds this feeling and it is frightening.
So I survived the 25th, the 26th and the days following, but whatever happened left me in a very altered state of mind and with a certain level of fear too. Most days since that happened, what I’d like to do and what I can realistically achieve sits miles apart...so it plays with my mind further. I have been working hard to shift my moods, to kick that fear out if the picture and experience moments of happiness, but it’s been easier said than done. Christmas away from my Canadian family is always hard, but this year, with all that happened on the 25th and the aftermath it left behind, I have missed them more than ever. All those sad moments have combined in a bit of a rough mountain to climb and chasing the dark thoughts have been by far much harder than working on getting physically stronger again.
It’s a mind game all right! You feel very misunderstood and isolated in this battle. I try to be mindful of not pushing people further away, I try to live in the moment, I try to take things as they come and to manage my energy the best I can until I feel stronger physically and most importantly mentally. The additional challenges of living with a brain injury are relentless. The constant back and forwards, the uncertainty and the speed at which a situation can alter how you feel is simply indescribable to those who haven’t been in a similar situation. I know I’ll eventually bounce back from the events of the 25th and I know that I’ll eventually find the strength to make peace with my somewhat dark mind frame. I am strong, I am determined, I will sing along to happy melodies once again. Until then, I’ll wrap my heart and my Weird Wonderful Brain in a velvet bubble wrap...just in case!