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The dark side

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

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Just some of the pile by the bed

There were times of questioning

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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.

 

 

4

Shakes me, makes me lighter

It’s just past Midsummer now. The longest day has been and gone and there was lots of reflection on what has gone and what to bring forth into the remainder of the year. I approached this Solstice with a bit of a spring in my step, I was moving more freely through the sludge and I attribute some of this to something I did for myself earlier in June.

Whilst researching trauma some time ago I came accross a PDF of a booklet called ‘Sky before the storm’ it was an easy to read piece of writing about the effects of trauma and how to navigate it. After I read it I noticed it was published by a charity that existed in Northern Ireland called The Wider Circle and that they specialised in helping to heal trauma. On further investigation I found out that they run a weekend retreat that you can attend and try to start assimilating your trauma story into your life. The retreat is free to attend and includes food and a room for the weekend.

I tentatively telephoned the number to request an application for a place on a retreat that was coming up in Ballycastle in June. I ended up crying at the  very nice lady on the other end of the line and kind of realised that yes maybe I REALLY need to try this.

Forms were sent out, filled in and returned and after some time I found that I had secured a place on the retreat. Now this is where the doubts and fears started to rush in. ‘Do I really want to do this?’ What if I can’t handle it?’ ‘Am I too ill for this right now?’ This was something I had to do alone (no safety person allowed!), something that was going to stretch me. But hey, maybe I needed a little stretching!

As time drew closer I was sent a pack with directions, housekeeping type stuff and the itinerary for the weekend, THE ITINERARY FOR THE WEEKEND! This is where my brain, to put it bluntly, crapped itself. The days were long and went beyond my normal bedtime, the time I jealously guarded because it kept me safe from, heaven forbid, feeling tired and being scared about feeling tired. I was starting to doubt the whole endeavour and told myself off for having grandiose ideas about healing.

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As I know by now though, healing is tough work. It’s messy, it’s hard, it’s scary and for it to work I have to push myself. So the day arrived and I set off up to the North coast in my trusty car and decided to just go with it.

I won’t go into too much detail about the nuts and bolts of the weekend as it is not my place to discuss the method used by The Wider Circle, I don’t want to send anyone off half cocked into trying it themselves and getting all tangled up. I also will make no mention of any other participants, this is highly private and confidential stuff. Suffice to say though, it seemed to…. well it kind of…. it worked.

There was a brief meltdown on the Saturday due to only getting two hours sleep the previous night and it making the day seem like an extremely long road to go down. This my friends though was where the biggest learning  occurred. I attended every last minute of the sessions, even the ones that went past my bedtime, even the ones where I was bog-eyed with fatigue and guess what? I DIDN’T DROP DEAD! There was a time I wanted to run away, the Lauren from eight months ago may have done just that. But I stayed, I tested my very limits and realised that my limits went far above and beyond where I had set them nice and low, in my safe place.

It helped that the setting was beyond glorious. We were right on the coast overlooking Rathlin Island.

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Everytime I got nervous, I looked out at that view, took a deep breath and realised that I’m a speck in amongst the vastness and beauty of all that is out there. This made my heart fill with joy to think that my trauma isn’t even remotely the biggest thing in existence. Perspective that I am only just coming to realise and accept.

I came away from this retreat lighter. Something had lifted. It was a simple process but highly effective. I had some integrating of healing to do when I got home but even now three weeks later I’m somehow less consumed by my trauma, I don’t think about it as much, I have a renewed enthusiasm for life and the drops, when they come, which they do, are easier to scale out of. I’m not saying this is an instant cure, do this and you’ll be healed forever. We all know by now recovery doesn’t work that way. I am however uplifted, hopeful, excited and most importantly more at peace. Also ‘tired’ is much less of a threat than it used to be, I think tired has been the place where I needed to stretch and learn.

The Wider Circle are a registered Charity and rely on donations to provide the wonderful work they do. Please take a look at their website here and donate or buy publications if you so require. Also if you are in need of some trauma healing in Northern Ireland please be brave and get in touch with them.