I now see how owning our story and loving ourselves through that process is the bravest thing that we will ever do.”
― Brené Brown
I got a tweet a few days ago telling me how positive I am throughout this trauma. It always surprises me when people see my blog as positive because there are times when I’m writing when I’m most certainly not feeling ‘positive’ and I try not to attach labels like positive and negative to what is effectively, an experience of life of some sort. I just write what’s in my head and it seems to be interpreted fairly ‘positively’.
There are however, times when the dark night ascends, times when funnily enough I’m told to stop being ‘negative’ and ‘think positively’. Let me tell you, this is all the language of shame, to label my darker days as negative serves to make them wrong somehow, serves to try to make me feel guilty for daring to step out of the misconception (that we ALL know is not true) that life is all rainbows and that ‘positive thinking’ is the only way to go. All this does is cause suffering, it shames your fellow human into believing they are broken for doing the ‘naughty’ thing of feeling the dark.
With this in mind I’m going to share with you some of the darkest moments of my injury. Things I kept hidden in notebooks over the past three and a half years. Beware this may be upsetting but is the closest thing I can offer you to explaining what it’s like when you are lost in your brain injury.
I started looking through my notebooks a few nights ago and started taking some photos of little phrases that captured my feelings at the time
There were times of questioning
And times of frustration, the second photo here makes me smile now because this was a phase I went through of finding some good in my day when everything was so bleak and the list for positives (there’s that word again!) in the day was simply ‘shower’. I’d managed to shower and sometimes that was and still can be as good as it gets.
There’s so much more in these books, valuable insights into my slow emergence, a reminder of where I started and where I am now. I want to finish on a piece of writing that was probably one of the lowest points in this post injury life. A time that unfortunately was not a one off and can still come calling even now. This was a hard choice to share something so personal but the understanding gained and pain shared is so helpful. This was how it felt, in that moment, it seemed to swallow me.
As I sit here, plunging further into this darkness, desperately trying to find a branch to hold onto. Downwards and downwards into despair and frustration. I feel invisible, lost, paper-thin.
2 years of this, 2 years of never really having a ‘good’ day, only varying degrees of crap and less crap. No sense of purpose, no point, no hope, just a black hole swirling around inside me sucking away all signs of life and humanity. I am a non person, a bag of flesh that carries around pain and apathy and emptiness. I look for myself but barely scratch the surface beyond where I’m hiding. I must be in there, somewhere, waving frantically and shouting trying to be found. But I just don’t see her, I don’t feel her, I don’t hear her and she is buried.
I keep being told it’s about acceptance of a new life, a new way of being. How? How am I supposed to accept this substandard, misery filled, exhausting life? A life devoid of joy and ease, a life that is now beyond my reach. I practice strategies, I educate myself, I do everything I’m supposed to do but it remains elusive. I can’t find the switch, the one that will switch me back on and flood me with glorious life and light.
I always say I’m ok, but I’m not. I’m slowly ebbing away, going further out to sea with each passing day. I’m not sure I’m strong enough anymore to wake up every morning and go through the aching loneliness and dependence and fear that every day brings. Days that roll into days that roll into days and I can’t see a way out. I want to reach into my brain and squeeze out this horror like water from a sponge but there’s nothing I can do, it is what it is, nothing I can do can change it. This impotence, this lack of control makes my heart ache and my head hurt. I cry tears that never seem to end and never cleanse me of the ugliness that has perched inside my once free soul.
I’m trapped, a prisoner not of my own making. Jailed by this taloned, all consuming beast. I feel like I have many doors in front of me but no matter which one I choose there’s no exit. I want to run and run but it can’t be outrun, it can’t be left behind.
Every time this curtain of despondency comes down over me, I feel like it takes another piece of me with it. I’ve become a human doll, sat on the pillows of my double bed dinghy, staring at walls and imagining the world out there and feeling jealous, jealous of the people who can get out of bed every morning, the ones who can accept invitations readily and easily, the ones who can smile and not be scared of everything.
I’m here in the dark and the quiet because my eyes and ears that used to once delight in beauty and music can no longer handle the burden of their task. My hair is wild and I don’t dress anymore. I stay in clothes that make me more invisible, clothes that don’t require zipping or buttoning or washing because I don’t care, because my energy is low. The tiredness makes my ears scream and my legs like useless leaden appendages that no longer know how to run or jump. I talk to myself in the silence asking questions that I’ll never get a response to. ‘What has happened to me?’ Where have I gone? When will I come back? What is wrong with me, I don’t understand? ‘What does it want from me?
My face and eyes burning with anger and sadness, I hate. I hate what has happened to me, I hate how cruel it is, how unfair it seems. I hate that it’s fingers creep insidiously over the people in my life. I hate how it gives a little then takes a lot. I hate how it isolates and divides. I hate my lack of love – for myself, for others. I hate how I’ve been rendered mute and frozen. I hate being told it could be worse. I hate being told I just have to accept it. Stand where I am and then you can see how fragile and worthless these platitudes are. I hate that I’m not allowed to express how truly awful this is without being talked over or through. I hate that ears listen to me but no longer HEAR. I hate that people’s tolerance is finite and has now gone. I hate those that jumped the sinking ship like rats and are relieved I’m someone else’s problem. I hate that I know life is glorious and short and that my one crack at it feels defunct, redundant, done.
The grief carves a hollow right through me, so sharp it takes my breath away. This is something I would never wish on anyone. The biting, spitting, snarling trauma that swept in and washed me out. A sea where the tide never returns. I’m stuck in purgatory, no courage to end things but no forward progress. As the sun sets on another day I’m not sure how much longer my shoulders can carry it, I feel too small to contain it anymore.
I died that day.
I am a zombie neither alive nor physically dead.
Just waiting. Always waiting.
This is what brain injury feels like inside, if you are going through this right now, please reach out, to me, to friends, to your doctor, anybody.
As dark as the night got I did see sunrise again and that will be another delve into my notebooks later this week.