I met a fabulous young lady recently at the start of her exploration into what may be suitable future career and got to chat to her about what neurological effects feels like from the perspective of someone who has witnessed a brain change. I explained to her that my curiosity throughout my experience has helped me so much to figure out what may be possible that day and when it's not thinking about alternatives is a good place to start. I also said It had adapted my view from 'all you need is love' to 'love lots and practise resilience'.
I have always felt thankful that the portion of my brain that allows me to be curious has been a constant trait even when things were very messed up and I think being curious helps build resilience especially when life changes suddenly or dramatically. So not accepting that today's limits will be tomorrow's and working out how that might be influenced started early on and continues today. That and just being a little less rigid and wanting to control too much.
Back when life hit reboot two successive brain surgeries meant a surgeons version of a pretty dreadful haircut and that combined with my obvious poor health, dramatic weight loss, leg wobbles and speech difficulties meant that people meeting me in the months post my brain haemorrhage realised that here was a woman who'd hit some pretty significant trouble and lumps in the road. Now over four years on you would never guess by looking at me that I can't take high intensity noise, that lots of chatting and sudden weather changes will put me to bed and to put it bluntly I have to make different choices to ones I would have previously. These days I move with a hidden heavy baggage I can't ever put down.
I have always wished and hoped that my SAH and resulting hydrocephalus would not become something that defines me but my everyday reality suggests that is slightly naive of me. I have to be considerate of my conditions and that means making allowance for them. The lasting effects and significance of the bleed and living with a VP shunt shapes daily what I can do these days and so is a big part of me and who I am now. Adjusting to this new state takes time though and whilst I strive for acceptance of my changes I will never stop pushing to see what's on offer today and what more I can do tomorrow.
Tough shit and trauma happens in life and you're never ready for it whatever shape or form it takes, it knocks you off your feet but 'it is what it is' and then we all have to find our new balance with any new state that comes after. This picture shows and reminds me that whilst I maybe could have done a warrior pose on that board easily pre SAH now I just know I can be that warrior and battle on and do what I can do today, in this moment.
Figuring out what you can 'deal' with today I think is important mental housekeeping for all of us and essential if I was going to be able to do some of the things I wanted to do. Some may call that mindful I call it pragmatic hopeful living.
Taking some gambles and risks was Important then as it is now but each decision has to be weighed up for the value that it may bring. My being able to stand on a paddle board, for my brain to cope with that demand to balance and physically movement is exhilarating and I know the memory of doing so and the thought of next time trying again will lift me with hope on the days when just swinging my legs round to get out of bed is hard or when I have to be completely still because the head hurts too much to do anything else.
People reading this with brain injuries will just get it but that doesn't mean people who haven't gone through that experience won't or can't understand, sure they don't have the same circumstance but many will have had time in their life when they have had their own mountain to climb and will know what effort it took or is taking to climb it. We all carry invisible scars and stories and those need just as much time and nurture to heal as the physical ones.
Having helping hands along the way to hold on to and that you can always reach to give you extra balance is what you need to really become strong to stand on your own two feet. That's what this picture doesn't show, all the hands from family,doctors and friends that have helped me do just that and to find my new balance however fragile it is and you know who you all are. Thank you all.
Let's just keep balancing and paddling as best we can together!