So, I’ve had a little hiatus from posting since before Christmas, not that the thoughts haven’t been swirling and brewing… The notion of sitting down and writing them out has just felt like this giant invisible brick wall. I’ve set the task to update, write something new for 3 weeks running, and I’m genuinely thrilled about the prospect of doing so. Until it comes to the moment of taking time to implement. If I have had more than one task that day I can’t. I just can’t muster the strength to open my laptop and type, even though I know [with my whole heart I know] that it will be cathartic, and I’ll enjoy every moment of sharing. That’s the hardest part of an invisible injury, invisible boundaries. You can’t see them, logically they make no sense – just open your laptop and type for goodness sake! But there it is non-the less. So here I am finally stealing 20 mins to sit in Chai Baba whilst waiting for filming to begin, in between appointments [I finally made it back to see my favourite chiro and massage team at The Core, 7 months later…]. You see the thing that I am starting to recognize is that I need to be kinder to myself. We’ve established I am beyond an over achiever, but it’s not realistic right now. That to refine my goals and focus on one at a time doesn’t make them any less.
In the past two weeks since new years I have pushed and pushed, to get things set up and moving for the new studio space. My passion, I have implemented so many new goals and set the wheels in motion for others – goals that make my heart sing. That resonate with my core values – but goals that I must recognize will take time beyond the fact that all things of quality do, but because I’m not at full capacity to do my best at each of them yet. There I said it. I’m not fully functioning. I refuse to say it’s a disability, it’s a diversability! A new aspect of my being that I’m just getting to know, some parts I don’t care for but others aren’t so bad.
My proudest progress is that I am finally able to identify when it’s my symptoms and when it’s me – that line is a huge deal. It’s not an over night journey and it takes every ounce of mental strength but I’m getting there. I think that’s key in the [now I’m trying to find the word I know I want to use here and rather than wait and come back I’m going to let you, the reader know exactly how it feels]. I know there’s a word that is perfect for this sentence, that it means speed up but those aren’t the words I want. I’m wracking my brains trying to find it, but now the frustration sets in and the sounds around me are much louder than before and my head hurts. All because I can’t find a word. So many people share how “that totally happens to them all the time and I don’t even have a concussion”. I appreciate the sentiment, as humans we find it easier to offer support or empathy if we feel like we can somehow share in the pain being felt by the person we are comforting. I am for sure guilty of doing the same, but we must stop. It’s the most irritating thing to hear “I’m always like that/experiencing that” or better yet “that’s my normal life! I must have an undiagnosed concussion hahaha…” sigh. The challenge here is that we don’t typically have a base line reading of our “normal” functions prior to an incident resulting in a brain injury. But what I can say wholeheartedly is THIS IS NOT MY NORMAL. I didn’t use to forget things all the time, or struggle to stay focused or on task. I definitely did not struggle to find the right words or lose my temper for no apparent reason. I never had experienced anxiety like this or that feeling of overwhelming [something – I can’t find that word either]. I’m figuring it out, but you telling me that you didn’t hurt your brain and have the same symptoms, isn’t the same. That’s just how you are – wonderful you! I’m still getting to know this new version of me, and fighting back the frustration of no longer being capable of all the tasks I once was.
I’m hopeful, I can see the improvements. My biggest breakthrough moment was just a couple of weeks ago actually. I was exhausted, over stimulated to the point that even after sleeping I woke up still overwhelmed – I say overwhelmed, this is what I call it when my brain is fried and my face leaks. I feel it’s the best word that people are able to understand that kind of touches on what I’m experiencing in that moment. This particular Saturday I had been so excited to have time off with my husband, I had bought vegan doughnuts and pizza the night before from Ratio in Vernon and had all these plans that we would have this lazy fun day together just hanging out and going for a walk somewhere. But I woke up and he was already up and doing housework, for no logical explanation that idea that I hadn’t gotten up earlier that I was “lazy” somehow just kick started the spiral. When I say a spiral, I don’t mean I was toddler upset and stomping my feet. Rather, I couldn’t speak, my face was leaking, and I felt this tremendous sense of failure. That I was a failure. How absurd is that?! I was curled up on the sofa sobbing, no appetite. My husband, my hero in this journey, consoling me with words only your best friend could know how to choose, but I could see the concern on his face and the loss as to how to make me feel better.
Here’s the strangest element of this experience, in those moments of tears – the anxiety or loss you’re still logically present. It’s like being wrapped in layers of emotion that don’t seem to belong to you but at the same time they’re all consuming. You can identify that these aren’t the emotions that make sense to your circumstances, typically way out of proportion to the event at hand [if there even was an event to instigate such feelings]. The challenge is stopping them in their tracks, I know typically if you need to cry you need to cry or be present in a moment of feeling. The key to that though is that the “feeling” you are experiencing is necessary to your growth and development. These concussion symptoms are not. It’s like your brain is misfiring and the emotions are part of the firework display.
So back to that Saturday, I made a choice that I didn’t want to ruin my day let alone someone else’s. I got up and went and put on my make up and found my game face [that’s my I’m dying inside but you won’t know about it face] and told my husband I wanted to get out of the house. I needed to change the environment, I needed to not be in this moment any longer. My tears were still falling as I applied my make up and I couldn’t make conversation or contribute to the decision making of where we might head, but my husband let me sit in silence and we made our journey to Peachland. The distraction in the change of circumstances, and my choosing to put myself in a situation where I knew I would have to interact with others helped me push through that moment. Don’t get me wrong, I wasn’t exactly a ray of sunshine, but I was able to mentally push past the walls and to a place where I was more comfortable.
Here’s the thing though, the amount of strength it took me to get to that point was exhausting, I could only focus on one task of getting out of the house. Not making conversation that had substance and definitely not being active. This notion that people should just “be better” or “get on with it” when they have brain injuries is truly absurd. I get it, you can’t see my injury – I wish I could. It doesn’t make it not real though. I struggle on the daily when I am not able to perform, what seem like minor tasks. Again, it seems absurd to me that I physically have no restrictions to speak of, intellectually I should be capable but in that moment “I can’t”. It’s truly not all doom and gloom, I promise, I laugh and have fun and am trying to dance more whenever possible as that makes my heart happy. But right now, I want to share the struggles of this journey to help educate us all and offer inspiration to others like me. I have a hard time admitting I can’t or that it’s not a good head day, especially when my logical brain identifies that everything is wonderful, and I have so much to be happy and energized about, but my concussion brain wants to sleep and can’t focus on anything. I hope that my sharing will continue the conversation that is beginning about brain injuries and will allow others the confidence to speak out about their journeys also. We’re in this together after all, and people really will try and understand and help if you just let them.
Until next time, rest when you need to – it’s ok to say you’re not ok and always ok to ask for help.