First there is a mountain

Well fellow travellers, we’re here. I made it.

It’s anniversary day and if we are to pay attention to conventional timelines it’s been 4 years since my accident and my brain injury. I say conventional timelines because after brain injury time becomes somewhat irrelevant, it’s all wibbly and wobbly and can stretch and contract at will.

Firstly I wish myself a


I couldn’t forget this date even if I wanted to, my body reminds me. In the lead up to today over the past few weeks I’ve experienced the anniversary effect, a strange remembering by the cells in my body of some distant thing that happened that was traumatic and life changing. Trauma is a somatic experience and It’s not something I consciously switch on, it just happens. The past few weeks I’ve been exhausted and crying and extremely sensitive but these things aren’t something to fight they are simply what is. 

I have found this past 6 months that acceptance is a lot more present than it used to be, there are still days (such as yesterday) where I want to scream and shout and pull it all out of my body, where I get angry and feel sorry for myself and grieve for what once was or could have been. This is especially present when doing something that I would have just got on with in the past that now gives me a pay off in days of sludgey, treacle-like, emotionally painful fatigue. An example being I started college at the beginning of September (studying Horticulture, so I can deepen my love of plants and nature), just 3 hours a week on a Thursday but by jingo for 3 days after I’m a mess. The difference being now, more often than not, I ALLOW myself to be a mess. Isn’t the messiness from where the beauty germinates and begins to grow?

As I sit here and write this and take a deep breath and try to think about what I want to say to encapsulate the past four years, there is so much contained within me that I don’t know where to begin. I suppose I just want myself and others to know that I’m still here. I still dance with the injury but after 4 years of lessons my rhythm is improving. I also want to give thanks, to my husband, my family and my brain injury community for being understanding, supportive and full of strength and love. I’m lucky. I know this. To have people around me who let me be, who let me expand and shrink and ebb and flow as I need to without looking at their watches or tapping their feet. For those of you who don’t have this support, I’m sorry and know that from the confines of the Internet I am holding the space for you should you need it.

I know there’s a part of me that’s lost forever, a reminder of that part, on occasion can break my heart into pieces, suddenly and swiftly, but I’ve also (mostly) said goodbye to her and let her disappear off into the sunset, her time here with me, for now, is done. I want to no longer talk of ‘battles’ and ‘fights’ regarding my trauma because if I’m fighting who am I fighting? Who am I hurting? Usually myself. There is no need to fight if I let my suffering go. A battle only becomes a battle if I make it so.

There’s still so much growing for me to do,  I need to build trust again, in my body and the world. All of this was stripped away by trauma. I’ve not got my energy expenditure balanced yet, there’s still a lot of famine and feast in my cycles of energy. There’s a huge part of me resisting this because just existing isn’t good enough for me, I want to LIVE. But as with everything throughout this ride, everything evolves and has a lifecycle of its own, I’m letting resistance run its course until it morphs into what comes next. In brain injury terms I’m STILL young, there’s plenty more healing and shifting to come, a fact that both frightens and excites me. There’s also a potential official PTSD diagnosis to come, though giving me a label only helps when dealing with infuriating red tape but not so much on a personal level. Doesn’t really matter to me what this ‘thing’ I have is called, its impact and subsequent learning is dealt with the same way regardless.

As always I’ve chosen a song for this post and I’ve chosen ‘There is a mountain’ by Donovan mostly because it’s a cheery little number but also because with brain injury “first there is a mountain, then there is no mountain, then there is” this song speaks to me about perception and how magic can be found if we look at things differently. 4 years ago my mountain appeared, but through love, compassion, determination, hibernating, sitting with myself and searching and changing my view, the mountain is something that undulates gorgeously, something that becomes a beautiful part of the landscape instead of an obstacle to tackle.

(if an advert pops up at the start of the video, I do apologise. YouTube meh)


You look so tired, unhappy

This is my June post, very late in the month and not what I intended it to be. I had an outline of a script written for a video but I’ve been defeated by fatigue. I wanted to get something out there though so I’m just writing where I’m at today.

I’m fed up today, I’ve been fed up for the past three weeks. I’ve been fatigued for the past three weeks. Minimal activity, days and days of sitting in bed in my pyjamas staring at a screen watching reruns of tv shows that won’t tax my brain. I’ll not lie I’m demotivated, overwhelmed, sad and really really f****d off.

This is the thing with brain injury, initially it defines you completely, you are each other. You lose who you are and become one with the TBI. This then subsides into a more cooperative existence, you know each other are sharing the same space and some of the time can rub along together quite well.


This descent into fatigue, this life stopping, mood changing and all round annoying aspect of my brain injury. I said on my support group the other day of all the things that my brain injury took, I miss my energy the most. This is true, without energy EVERYTHING becomes difficult. It’s also a time when you realise that to some degree you are still defined by the trauma. What happened to me over three and a half years ago still runs the show, it’s not as strong as it used to be but overnight it can firmly and stubbornly put the brakes on.

There’s been a few triggers; hospital appointments, general busyness and then the current political state of the UK. I don’t want to talk about it too much here but the recent vote in the Uk triggered my Post Traumatic Stress. The feeling of being vulnerable and unsafe combined with the catastrophising on social media and the terrible rise in racist incidents sent my brain into an exhausting and fear filled panic spiral. I can’t stop this happening, it does it all by itself. What I CAN do is accept that’s how I feel right now.

I KNOW it’s part of recovery, I KNOW it will pass, I KNOW it’s for my own good but can I just say right here right now in this moment I hate every stingy, mean, exhausting and boring minute of it. I hate being stuck and trapped, I hate feeling my brain literally shut down after ten minutes of any concentrated effort. I HATE IT, I HATE IT.

There’s a certain expectation to be used to this by now, to just go with the flow. Well, I am used to it but I still hate it. I do go with the flow, but ‘going with the flow’ doesn’t mean denying my anger and frustration. As I sit here with my ears constantly clanging with tinnitus, my eyes leaking and my brain just refusing to connect up, this is TBI nearly 4 years on. This is my reality. This is the time to rage against what’s happened.

So I’m resting, switching off, avoiding social media as much as possible, eating well, drinking water, trying to connect both sides of my brain up and waiting this out.

And then, one morning soon, I’ll wake up and be able to get out of bed. I’ll have energy and joy. I’ll be able to read a book or have a conversation without feeling like my body wants to shut down. I’m telling you this because each subsequent episode of fatigue is a launching pad, it’s the hibernation period before you take off into your next chunk of recovery and this is what’s waiting for me at the end of this tunnel and this is what keeps me going, I hope it keeps you going too.


ABI week 2016. The end.


The deeper that sorrow carves into your being the more joy you can contain. Is not the cup that holds your wine the very cup that was burned in the potter’s oven?” — Kahlil Gibran

So here we are, the end. Massive thanks to those who endured my constant posting, those who read, shared and commented and the guest writers who entrusted me with their stories. It’s been a busy week for me and I know why I don’t blog more often than once a month! I’ve enjoyed bringing you different voices this week and showing you some of the different ways that brain injury can be sustained and dealt with.

The overall theme of all the posts is one of hope and strength. I’ve met people that have really been through some devastating situations but they are all brave, strong, caring and incredibly empathic. The role that community plays in recovery must never be underestimated. I run a support group on Facebook (that includes thrivers and care givers) and whilst we have never met each other in person we hold each other up when needed, swap information and ideas and generally get to take off our shoes and be ourselves in a little corner of the Internet. Having a group of non judgemental people who are ready to encourage and help when needed is a great boost. No one questions what you’re feeling or doing they just accept. This has helped my recovery very much and I know it’s helped theirs too.

I want you the brain injured to take away from this week that you are never alone and there is hope, I want the care givers to understand their loved ones a little better but to also know they have a voice too and I’d love the general public to have come away with more awareness of brain injury and it’s invisible nature but to also be a little more careful with their one and only brain.

Brain Injury is many things, it’s sad, frustrating, the biggest loss, fatigue, pain, change, fear and anger inducing but it can also be heart and mind opening, rebirth, compassion, love and kinship. I truly hope yours eventually becomes more of the latter than the former.

If you’d like to connect more here’s some links for you

My braingirl Facebook page is here

The closed Facebook support group (for survivors and care givers) I run UK and Ireland brain injury support is here

I look forward to meeting you

thank you


ABI week 2016. A care givers story. ‘He survived’


Today’s post is written by @poorlittlenell (her Twitter handle) she is sharing her experience of her sons Acquired Brain Injury that he sustained at birth. This really captures the fear, the frustration and then the blossoming that occurs. I’d like to thank poorlittlenell for sharing such a beautiful story with me.

Trigger warning: contains a distressing description of the birth.


The weather that week was unseasonably cold for Sydney in November but as I looked out of the hospital window, sunshine broke through the clouds. I watched a man in Chris Evans glasses make his way purposefully across the car park. Beyond him, vehicles whizzed by on their morning commute.
“Don’t they realise,” I thought, “that the world has changed?”

My son had been born half an hour before. He was not with me on the recovery ward. Only thirty minutes previously, after a nightmarish birth, I had watched him die. Then medical staff poured into the delivery suite. A nurse tore the small alabaster body away from me. Slumped on the delivery table, all I could see was an emergency doctor holding up a pair of heart-starting paddles, the kind they use in medical dramas.
“Clear!” someone instructed.
“This isn’t happening,” I thought. “This type of thing doesn’t happen to me.”
I asked the nurse beside me if my baby was OK but her eyes were fixed ahead, her expression filled with horror. She did not reply.
“Why shouldn’t it happen?” I realised. “What makes me immune from losing a child?”
Ten minutes later, fitting, eyes rolling, my son was rushed to Intensive Care.
They had brought him back from death. He had survived.

Eight years later, on a dazzling October morning in Scotland, I faced my son’s paediatric key worker at the day programme he was attending for his anger issues.
“He has Acquired Brain Injury,” she explained to me, “caused by his oxygen deprivation at birth.”
Mystified, I asked: “What’s Acquired Brain Injury?”

My son’s diagnosis should not have come as a shock to me. From the moment of his traumatic birth, his medical problems had been numerous. As soon as his fits were under control, his high muscle tone and favouring of his left side led to him spending a year in physiotherapy. A skull x-ray for suspected craniosynostosis had come back clear but an MRI scan had revealed him to have enlarged ventricles and possible other brain abnormalities. On top of this, until he was almost four, he was hospitalised at least once a month with his severe asthma. At the same time, he diagnosed with multiple life-threatening allergies. Once these were addressed, his asthma began to improve but by then we had left Australia for a new start in UK, leaving his medical files to take the slow boat after us.
On the day my son was born, I was told there was no guarantee he would ever walk or talk. Later, when he showed the doctors he was bouncing back from death with astonishing aplomb, they reassured me I had cause for cautious optimism. This prediction, at first, seemed to play out beyond my most fervent hopes. While physically slower to develop, my son had vast energy and, apparently, uncanny mental sharpness. When he was a week old, he would follow me around the room with his eyes. At three weeks old, he was smiling, laughing and verbalising. After that, he was never, ever quiet or docile. He was always “on”, every dial in his personality turned to the max. The out-of-control tantrums began at six months old and from eighteen months old he stopped sleeping.

At this point I began to realise that his level of activity, intensity and emotion was beyond a range that could be described as “normal”. But, due in part to us moving house five times, his age and the severity of his other medical needs, the doctors were reluctant to give a concrete diagnosis.

I spent every available moment reading about paediatric conditions, desperate to find an answer for his concerning behaviour. With his hyperactivity, he could have had ADHD but this was not the full picture for him. His intense obsessions, rigidity, heightened anxiety and “ticking” with certain words and phrases, made me suspect he was on the Autistic Spectrum. Yet despite having many social blind spots, he was extremely sociable and capable of strong empathy. Being so intensely curious, he even seemed to match the profile of a Gifted Child. Except that he had never been able to memorise nursery rhymes or learn the simplest of songs. He would forget basic instructions the moment they had been given.
Eventually, it was his aggression that drove me back to the doctors and to Child and Adult Mental Health Services. His frustration had reached such unbearable levels that he would lash out, kicking and punching me up to sixty times a day. He pulled the bathroom door off its hinges and flew into rages where he would smash his toys and throw the contents of his bedroom down the stairs. My journey to have his behaviour addressed led us to the day programme and to his diagnosis of Acquired Brain Injury.

Nowadays I give a wry smile, thinking about my years in the dark over my son’s Brain Injury. When I see a checklist of the symptoms, he ticks every box. He is the Poster Child for ABI, a walking description. His impaired working memory, his processing delays and concentration problems seriously affect his day-to-day life. They mean that although he is currently attending mainstream school, he is nowhere close to receiving an adequate education. He has Executive Dysfunction – the brakes are off on his emotions and anxiety. While he is aware of certain “norms” of behaviour, when he is swept onto the emotional rollercoaster he cannot simply step off. These and his other symptoms are invisible. The outward signs, spotted by those around us, look like weirdness, naughtiness, even delinquency.
“I’m just wondering why you do that?” a small girl asked us the other day, pointing to the ragged sleeves of my son’s school jumper, where he had gnawed the cuffs completely away.
At Legoland, a father with teenage children frowned at us when my son, frustrated by a long wait in a queue, began repeating an inappropriate word at the top of his voice.

A neighbour was concerned and baffled recently that my son, out of my sight for less than five minutes, had failed to warn some younger children away from a dangerous activity. “He’s ten. He should have known they could have been hurt.”
When a person has Acquired Brain Injury, there is a hesitation to explain. I live in dread of his schoolmates discovering the name of his condition and adding “brain-damaged” to their list of insults. On the other hand, when I have been pushed to inform outsiders that he has a neurological disability, I have been met with scorn: “He’s not disabled!” or “Looks fine to me!” Acquired Brain Injury opens the door to a new level of complexity in understanding disability. To have a barely-functioning short-term memory is, of course, different to having barely-functioning legs – yet is, in its own way, as debilitating.

The insulting and dismissive reactions to Acquired Brain Injury are in the minority. The most common response is the one I feel the biggest need to challenge.
“He has a Brain Injury?” The listener’s expression becomes bereft. “But how awful. How sad. How terrible.”
No. My son survived. He is with us and he is so much more than the sum of his brain cells. He has huge energy and enthusiasm, boundless creativity, a sense of humour that has me laughing every time we are together no matter how challenging the day might be. I am frequently left in awe at his tenacity and determination. He has worked unbelievably hard to learn ways to handle his frustration, to the extent that he is no longer aggressive towards me. Yes, the child who would pull doors off their hinges in fits of rage no longer shows violence towards me. I find little incomprehensible notes scattered everywhere that he has written to himself as reminders of Important Things – Important, to him, almost always means Minecraft. School is difficult but despite the stress he is under every day, he keeps soldiering on, with the work, with finding friends, with his allergies, with everything.

I remember the brilliance of the sun on the day he was born and on the day of his diagnosis, a tactless contrast to the darkness of our circumstances. But in my memory, the sunshine has come to symbolise hope. Not a day goes by when I don’t give thanks for my son’s life. To see your baby die in front of you then be resuscitated, to learn he has irreversible brain damage – that is traumatic. The shock will stay with me forever. But the alternative for him was death.
In the ten years since he suffered the brain trauma, one grief has stood out in my mind: “What was he meant to be like? What did the brain damage take away?”
Last week, my son answered this question himself when we were talking about the Science of the Future. I had heard a proposal for a computerised implant for people with brain injuries that could repair the damaged part of their brain.
“If that technology ever came about,” I asked my son, “would you use it?”
“No,” he replied without hesitation. “Because if I did, I wouldn’t be myself.”
I realised then that he is a whole and complete person. My son with Acquired Brain Injury is who he is meant to be.


…and then the sun came out


“In the depth of winter, I finally learned that within me there lay an invincible summer.”
― Albert Camus

As you saw in Wednesday’s post (which if you haven’t read is here) things got very bleak at points after my TBI. I’ve documented many times through my writing and videos the loss that occurred that day. I think it is important not to hide and dismiss this aspect of injury, loss, ourselves but I also want to show that if like me you are or have been in those depths following a brain injury, there is hope.

Hope is a funny thing, it was at times just about the only thing I had to cling onto. Where that reserve of hope comes from when all seems lost, I’ve no idea. But for me, the thought that maybe just maybe in 5 minutes, or 5 days or 5 weeks I’d start to have some lightness or joy was enough to keep me going. Sometimes all it took was someone to whisper ‘you’ll be ok’ and I clung onto that like a steroid addled limpet.

This is me, telling you, that you are safe and you will get there.

There was no one defining moment when everything just clicked, it’s been a gradual unveiling that still continues to this day but I notice in my private writing things stated looking more optimistic


I became more aware of my ‘wholeness’ the fact I could contain all of what was happening inside of me without trying to favour one over the other and fighting myself to push the ‘sad’ away. This is a regular occurrence I see within brain injury survivors in those initial years, the exhaustion we put on ourselves by fighting ourselves constantly. Even the language we use like ‘battle’ ‘war’ and ‘struggle’ do us no favours. I try not to use these terms now (they do slip out occasionally but that’s ok).

So once I’d started to learn to lean into myself, to just let things be, it became easier. It didn’t go away, of course not, but sadness and all those associated ‘negative’ emotions become part of ‘what is’if you just remove the label. This took time for me, it meant a lot of unraveling of learnt thoughts and behaviours around my emotions but I’m getting there.

I began to write less about how awful everything was and started to make lists of things I’d like to achieve, things I’d like to have in my life, an unheard of idea in the first 2 1/2 years post injury. Also, I know it’s a cliché but time, wonderful time has been an ally. Now I’m not talking a few weeks here, you need more patience than you ever thought existed in the entire world, but time has carried me further away from that place towards one that looks more comfortable. I found looking through my notebooks I was writing less now, the need to find solace on the page was lessening and I found a phrase that just was a complete lightbulb moment for me


POST TRAUMATIC GROWTH. I had never even considered such a simple concept, I was stuck in the trauma and as far as I was concerned that was it.

I can only speak for myself and how things unfolded for me but there is growth after trauma, it takes time and effort but it’s possible. You fall over many times but that’s part of it. I fell and still do but I get up again and keep going, I don’t want to sound like one of those ‘pull your socks up’ types, I’d never say that to anyone. I know how it feels to give up, I know how it feels to be exhausted and empty, so give that part of you a little space to do its thing then try again. It’s not a race, if you aren’t feeling it for a week then have a week off. I had months (yes months) of complete inaction, berating myself for being useless. If I’d have known then to just be ok with that I’d have been less distressed and tired. We humans are funny creatures we are perfectionists, we like things done as quickly as possible, the concept of drifting and letting things unfold fills us with terror. Good! Let if fill you  with terror then once it’s gone, slow down, breathe and grow from your trauma.



ABI week 2016. Chris and Annie. All change.


This is a guest post from Chris, a caregiver for his wife of 39 years, Annie. Annie had a Subarachnoid Haemorrhage in 2014. This is his story about finding a new normal after such a devastating event. Thanks to Chris for sharing this with us to help raise awareness.


Gone are the days when a visit to my local Pharmacy saw me walk away with a small white bag with Annie and my medication in. When I visit the Pharmacy now it’s generally a large box or two filled not only with Annie’s medication but also various types of much needed equipment and items that have become an every day item.

When I walk through our apartment I am faced with changes to our lifestyle, home and routine. The hall is now a car park or I should say Wheelchair Park, complete with large charger and other accessories. The changes to the bedroom are obvious, Annie’s bed (you hear it before you see it) My single bed. One thing I have always said to Annie is no matter what we will never have single beds, now here we are forced to apart although side by side. Then there is the other equipment, hoist, Annie’s armchair and shower chair. Annie’s armchair lives in our bedroom at night and transfers to the sitting room by day. The bathroom is full of bottles of lotions and potions for beauty, bathing showering, cleansing, moisturising and other things that chivalry prevents me from disclosing. like any other bathroom I hear you say not this one. Then there are the bags, yellow, orange and black and lastly white ones. Then there is the sitting room with one real change and that’s Annie’s pride of place. I remember as a child my fathers chair it had his smell and it had his hand marks on the arms and it sat at the side of the fireplace, when he was home no one dared to sit in it. Annie’s chair as I said moves from bedroom to sitting room and has pride of place, a focal point in the sitting room. Then there is the spare room/second bedroom the bedroom tax room. It’s a store room for the nurses and the carers, it also houses Annie and my wardrobes. Finally the kitchen, the kitchen that we would have shared, the kitchen where Annie would have spent so much time. Its funny it seems that with all the change throughout our little home it’s the kitchen that reduces me to a blubbering wreck, so simple but so poignant. It’s not that the kitchen is where I cradled Annie when she had her SAH but where we would chat, sing, laugh and share life. The kitchen is now my domain, yes I cooked more than in the past, but the kitchen was like out meeting place.

Then there is Annie. These changes are huge and don’t become easy to swallow even two years following her SAH. Annie is quadriplegic and every aspect of her life is supported, however, since her Stoma and Suprapubic Catheter the personal care issues are less stressful for her. Annie tolerates me having to feed her and meal times are quiet. Any distractions can cause Annie to loose concentration and swallowing becomes an issue.

Annie and I have been married for 39 years this year and the things that people in a loving partnership take for granted are lost. So what do I miss? I miss Annie holding my hand, I miss Annie’s cuddles, I miss our closeness and love. There are also things that people don’t understand because again it’s taken for granted that these issues remain constant in our marriage. Conversation and yes arguments are lost in the recesses of Annie’s brain. Annie has lost her ability to initiate, therefore she is unable to start a conversation or an argument in fact Annie can not initiate anything from talking to moving. I miss my friend, lover and Boss.
No one likes change especially a retired Social Worker. Sometimes change is important, lets say “for the better”. As a Social Worker I promoted change, made people change or face at times pretty harsh outcomes. I feel bitter about the forced change that we have witnessed. I resent its power and its ability to mess with Annie’s life and turn my world upside down. Now I must face it and use it to benefit us and not eat us away “Our New Normal” is the tool to make the changes more appealing and give us the encouragement to fight the inevitable changes and use them to our advantage and not get us down.


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


Just some of the pile by the bed

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.




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


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.



Unmade like a bed

Whilst thinking about this months post and what to write about I found myself in the midst of a bit of a deep funk (not like Bootsy Collins, the other kind). I was questioning myself and how I approach relationships (or my lack of them). Then out of nowhere articles kept popping up about loneliness and people in my support group began talking about it so it was making itself the very obvious candidate for a blog.

I’ve touched on the subject of loneliness a few times in other blogs but it was something I only ever really glossed over, I think that’s because admitting you’re lonely is hard. It’s another of those things like jealousy that we don’t talk about. There’s no place in this ultra connected society with lots to do for being lonely and if you are, well then there must be something wrong with you. What I’ve found is that we seem to be more lonely now than ever, there are reasons for this such as online connection replacing personal interaction, don’t get me wrong social networks can be a lifeline for me to be around others when I don’t have any energy; they help us connect with people from all around the world and that’s a wonderful thing BUT it’s very easy for it to become a crutch and replace physical connection. I fully admit I often kid myself that I don’t need people around me because I have the Internet. Trust me, being around other people is good for you.

So far, so logical right? Well this is where it gets complicated. Brain injury survivors and their caregivers (and other chronies too I’m sure) are stuck between the devil and the deep blue sea (no idea what that really means, but I like the sound of it). Firstly there’s the distinction between solitude and loneliness. Solitude is good, I choose solitude, it’s a recharging place, a place to be at peace and gather and fill up with good juju. Loneliness is its flip side, the naughty cousin, the place of sighs and sadness and frustration. Brain injury for me is an awkward dance between the two, as a brain injured earthling I need solitude often to help me heal. I can’t cope very well without it and this is how my problem started, it is at times an avoidant behaviour something that keeps me safe because ‘out there’ is mean and nasty. I use solitude like a shield to push away anything that might make me uncomfortable, I’m often telling myself ‘no I can’t do that thing today with that person because it will make me tired and I need my solitude to balance’ sometimes this is true and sometimes it’s the fear talking.

I’ve been quite happy to let the fear disguise itself as meaningful recovery because it’s suited me, it’s stopped me doing anything that ruins my equilibrium. As I have so often discovered throughout my healing, sometimes the equilibrium NEEDS ruining. I need it to be pushed so I can grow. So as you can see I’ve painted myself into a very lonely corner. I fully admit to you here and now I am terribly lonely and terribly frightened to do anything about it. I know I need to shake it up and that’s what I’m shakily walking towards over the coming months. But I’m not ashamed to confess the sadness that overwhelms me as I realise how isolated I am, how the tears fall easily and how unlovable it makes me feel (this I know isn’t a fact, I am lovable but it can FEEL that way after being alone for so long).  I know this a problem of my own making but it is also a feature of brain injury, it is not something that I can just ‘do’ sorry positivity junkies but brain injury life doesn’t always work that way. My brain and therefore my ‘self’ has changed, I became a very different person and finding my way back is rocky and tentative.

I know Mr Braingirl is the rock with the lighthouse to which I anchor and I’m very grateful he is here but he has his own life and I want my own life too. Aside from him and online friends I don’t really see much of anyone on a day to day basis. I crave belonging, I want to feel like part of a group, I miss having people to talk to and feeling connected enough to people to be vulnerable with them and laugh with them. Everything has to be so carefully done, I have to ration my energy but also ensure that the people I choose to spend time with are not energy drains. Authentic, realistic, good and upbeat, I can’t tolerate people who are excessively pessimistic not because I think I’m better than them but my energy just can’t absorb that kind of vibe anymore.  This is another new step for me and one I’m sure will do the inevitable brain injury shuffle, that special backwards/forwards dance that serves to drive you crazy. I hope to continue to have healing solitude but to also begin to mix with others again.

I always think of this quote by Thay whenever anything new has to be assimilated into my life, try it, it’s a great way to be.