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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.

 

 

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ABI week 2016. Heather, a caregivers story

Life is a journey, not a destination – Ralph Waldo Emerson

Today I bring you a brain injury story from a caregivers perspective. Heather cares for her husband who had a motorcycle accident in 2007. Heather talks about how family and relationships can change and fracture but that there is a way to find your new normal as a family unit. I’d like to thank Heather for sharing this on the blog, it’s much appreciated.

In 2006, the morning of 7th June I received a telephone call from the Police to tell me my husband had been taken to the hospital after having a motorbike accident. The female officer appeared sympathetic but fairly positive that my husband had received only ‘minor’ injuries including a broken collarbone. He had been assessed by primary care in accident and emergency and could come home. I arranged child care for my 33 month old daughter and went to the hospital to collect him. The doctors said he was ‘lucky’.

If someone had stopped me at the door and told me that for the next year I would experience the worst year to that point in my life I wouldn’t have believed them – after all it was only a broken collarbone. It wasn’t, of course, I am writing for a Traumatic Brain Injury blog so it can’t be!

I’ll cut a very long and often traumatic story short to tell you where we are today in our journey. My husband experienced a traumatic brain injury, broke his collarbone, broke every single one of his ribs (some multiple), fractured his hip bone, chipped his pelvic bone, fractured two vertebrae, lacerated his side and damaged a kidney (which is now dying). Only the collarbone and laceration were picked up in A&E despite his motorbike helmet being cracked in two. The trauma clinic were thankfully more efficient. My husband’s TBI was diagnosed after his Post Traumatic Stress Disorder (PTSD) had eased; unveiling some behaviour that could not be readily contributed to regular PTSD. It was though, some nine months after his accident. He had received TBI through acceleration-deceleration associated trauma; the force of hitting the van that pulled across his path and caused him to be thrown into the air and career up the tarmac caused his brain to be shaken around forcefully in his head.

Despite all of this we are lucky he survived; he jumped a fraction of a second from his motorbike before impact, we are lucky he was an experienced rider. It is funny how we measure luck; it is usually against the experience of (what has to be conversely) bad luck. What would have been lucky that day was to have left the house 5 minutes later.

It is nearly 10 years since the accident. What a journey! We have a very good neurological unit in Edinburgh and he was under their care for some time – even still if he needs it. The neuro-rehab unit also considers not only the individual but their families too, although it’s limited. This is important because from a carer and mother (of our child) point of view it is not all about how the accident impacted upon my husband. It took a long time for me to appreciate my needs; if you can imagine it was my daughter, my husband, sometimes the cat then me! We all needed to adjust, get to know the husband, friend, lover, partner and father again. We have some lovely friends who have endured us ebbing in and out of their lives, my husband avoids social gatherings at all costs now. Most of those that matter to us understand and some exceptional family members such as my nephew and my dear late Mother. We did employ the services of a childminder for longer than most but it helped with constancy of care; my daughter is amazing at 12 she is empathic, usually understanding (pre-teen style) and has a wicked sense of humour that commands sarcasm to its full (which sometimes escapes her father’s grasp). We as a family have come to understand that we sometimes cannot be that family on the telly or next to us on holiday; especially on short breaks – it’s just me and my daughter as going away for a few days upsets my husband’s routine too much. But that’s okay as we all get a bit of a break to recharge our batteries and we can plan longer breaks together.

Well…. I can plan the longer breaks; it’s one area that my husband finds the most frustrating thing about having a TBI is the impaired organisation and planning, others are rigidity in thinking and implications of decisions – the higher functioning of the brain. Although, there has been an improvement in ten years it is still pretty affected.

This is how we measure luck though – my husband, who has been my ‘other half’ since we were teenagers is still here, he has developed a grounded approach to life and often keeps me grounded too with his alternative viewpoint when I am being all task-focused. He got the opportunity to develop a beautiful relationship with my mother several months before she died – understanding her in ways I didn’t. He has developed a creativity envied by so many in his wood-turning where that attention to detail of his really pays off and he creates the most beautiful wooden work at Tooth Fairy Pots (link blow). My husband also has the challenge of living with three demanding women (I’m including the cat again) and copes better than some men I have known – including those without a TBI.

I have learned to live with the house being untidy, needing tradesmen to do things my hubby once did and listening to myself when I need some ‘me’ time and when we all need ‘we’ time. I haven’t lost sight of everyone’s needs, including my own and this year although I work pretty full-time I also managed to become self-employed to do a bit more of what I enjoy doing. Life is full on but if your foundations are strong then you can build. It has taken ten years, but I guess, we as a family, are just lucky like that.

You can find the amazing woodwork that Heathers husband does by going to Tooth Fairy Pots

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Action for Brain Injury week. 9th-15th May 2016

“Awareness is like the sun. When it shines on things, they are transformed.”

― Thich Nhat Hanh

Today heralds the start of Action for Brain Injury week (ABI week) in the UK. I’m aiming to post a blog a day for the whole week to commemorate it.

The idea of ABI week is to spread awareness with a big focused effort. A lot of the brain injury organisations and charities will be doing something this week, whether it’s looking at one particular aspect of brain injury in depth, getting in local press or just making their presence a little louder on social networks.

I’m not a charity or an organisation so my little contribution will be to push myself by writing or sharing something daily. I will be posting some of my own work but I am also extremely excited to have contributions from care givers of people with brain injuries. People who are strong and brave in their own right and will give the perspective from the other side of brain injury. I’m completely grateful to them for letting me share their stories with you all.

I’ll also be taking you on a little journey into the dark side of my injury and sharing with you some extremely personal and private extracts from my notebooks that I have been writing in since the early days of my accident. I hope they will show you what a brain injury feels like or as close to without actually having one yourself.

I hope you enjoy the week and stay with me through it. I normally only post once a month so please forgive my extra presence on your social media, I do try not to spam but this year I wanted to mark ABI week properly. As usual please comment and most importantly share what you read, it’s the best way of spreading awareness and knowledge.

With all that in mind and this little intro done, tomorrow’s post will be a story from Heather, a care givers perspective.

Thank you for reading and I hope you have an interesting week.

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