It's been over a year since I last blogged. It's been over a year since I felt like me (again) though I am starting to feel back in the world, understanding what I am doing, where I'm going and sort of 'getting it'. Though who ever really gets it?! If you do though, I take my hat off to you. I'm not wearing a hat, I'm not really a hat person...
I don't quite know how to begin this anymore, I don't know how to get across what I want to say. I have the words but I think a lot of the time my words are the 'wrong' words. The words quite a lot of the time, no one really wants to hear. Most of the time, they aren't nice words, but what I experience in life isn't nice. You can't say brain injury in a positive way, you could say it out loud in a nice voice, a french accent even. It's still not nice. There isn't anything nice about brain injury. This is the problem with the brain, it's really just far too complicated for any human to understand. It's a massive pain in the ass and it's always an uphill run in an inflatable Sumo costume. In the last year I was starting to lose my way again, like it just got really foggy or my terrible real life lack of sense of direction is also in my head! Half the time I feel like I've no idea what's going on, what I'm fighting for or why the bloody triangle won't fit in the circle hole! I mean for crying out loud, how dare you triangle, how dare you have 3 corners and not fit in to a 4 cornered box.......aah, the want to fit in a box, the want to be generic, the want for the removal of all the dodgy bits that don't work. What a luxury that would be. You see when you don't fit in a box (I know this is controversial, I'm aware most 'normal' people want out the box, not me!), you want nothing more. I suppose you always want what you can't have...and just to be clear I would LOVE a fully working brain.
Normally I find writing easy, like I just start and before I know it I've written pages and pages. This isn't happening at the minute. My head is heavy and my heart feels heavy too. Whilst I know how lucky I am, I certainly don't feel it. Especially not when I've been awake half the night and have had to take the strong painkillers. I don't feel lucky in the slightest. In fact I feel sad and pissed off. I'm not even sure I should publish this, I probably won't, but maybe that's why I should....
Some days are harder than others, most of all the days when I've had to take max painkillers. I try not to think of the future anymore, just one day to the next. That's enough for me to think about. Don't get me wrong, I would so love to have plans for the future but having plans means they can get cancelled when something goes wrong and the disappointment of that is far worse than not having a life plan!
I'm beginning to get used to not working, though it's an awful thing. Luckily there are things I can do and I am doing as much of them as possible. I'm singing more than I have in a long time which is great. I am sure I have mentioned in the past what being in a choir can do for a person. We've moved on from a choir, we're a family so to speak. There are several members of the choir whom I am now lucky enough to call good friends. In fact a couple of them I kind of feel I was destined to be mates with! Eeeuugh, yes, I just said destined! A bit gushy but so very true! This year, as a choir, we will be doing our first festival gig. I imagine our friendships will grow after that, festival fields do that sort of thing. It will also be the first time I've performed at a festival which will be a different experience for me. I'm sure it'll be fun to say the least! If you want to catch our festival debut, we will be at Lindisfarne Festie, the main stage, Friday 31st August at 3.30pm. I'm sure we will be amazingly wonderful, we're all pretty excited....
I want to finish this today with the reason why I felt I had to write today....a nice reason! So my Wednesday evenings are always filled with choir excitement. Yesterday was a lovely day, we sang outside and everyone seemed bright, strong and positive. Even me to some extent! I even ended up with a daisy crown - a bravery award from a fellow SHE (when I say SHE, I'm referring to a choir matey - we are Newcastle SHE Choir) as she had just found out about (briefly - we're supposed to be there to sing for an hour and a half, not enough time to go through my medical history! Mind you, is there ever a good/pleasant time to discuss the ins and outs of neurosurgery? I think not!!) my health problems! Then as I was leaving I somehow got in a conversation with another SHE about my head and one of the conditions I have, Hydrocephalus. She suggested if I have water on the brain, I should plant flowers there. As soon as she said it, I thought, 'ah man, bloody hell, wish I'd thought of that'! What a wonderful illness this would be if they could get rid of this excess CSF (brain juice) by planting a few flowers up there. How lovely. If only. Flowers for hair.....a constant flower crown....I can't wait to tell my surgeon that....
Life is hard, there are so many struggles. The worries that live inside you are some of the worst. I am full of worry gremlins, they never really go away but as an analogy, sometimes they're not the ones that got went and went evil. You have to keep fighting (or perhaps carry a hair dryer around so you can dry said wet gremlins) and trying to live. It's not going to be the ride you wanted but it's the one we have and so we must be brave and carry on (and not keep calm!).
Destiny always sounds like such a glamorous word to me and I'm sure to some of you it is. Me?! Well I'm just happy that I've gotten out of bed, done something (whatever that something maybe) and there's a massive high 5 each day I haven't needed a strong painkiller!
Be brave, be strong and be you.....
Until next time...or maybe I will see you in a field...x
