4

I think that’s well understood

I didn’t want to write this, I didn’t have it in me. My brainiversary blog posts are normally fairly upbeat affairs with a nice message and a catchy poem or quote. But in all honesty since July I’ve been feeling anything but jaunty. I didn’t really want to start my next year of recovery on a bum note but here I am.

I then realised that it’s ok to not be ok and it’s even more ok to express that. There are loads of us who are not ok right now. To pretend I’m something that I am most definitely not right now does myself and others a disservice. I’m not entirely sure where this post will end up, so I’m just going to write and see what happens.

The duvet of safety has become my home once more as about 95% of my time since July has been spent underneath it, gestating or incubating or whatever else is boring and still. I’ve got up when I’ve needed to attend something such as my PIP tribunal (which incidentally, I won) but gone straight back to doing my best impression of a plank of wood as soon as I get home. Even the sweet victory at my tribunal got buried underneath the layers of bleurgh that currently hover around my atmosphere.

There are many reasons for the reappearance of my ennui and despair, some that I can put my finger on, others that are hidden within the folds of my temporal lobe (some brain lingo for you there). One of the obvious reasons is that my brain is damaged, mood change 101 right there. Other reasons are the upcoming anniversary that always chirps in, a longer than usual bout of fatigue and a pervasive feeling of stress that is hanging around. There are other reasons that are making me particularly vulnerable due to factors mentioned above. This is stuff that just makes me break inside and feel impotent because I can’t help. When I’m low like this my shell is fragile and I just can’t cope with anything, I know all the advice about worrying about things only within my realm of control but there are times such as now when my faith in myself and humanity goes missing.

I feel so trapped at the moment, trapped by my body that won’t do what I want it to do, trapped by the ignorance and stupidity of others, trapped by society, trapped by the benefit system, trapped, trapped, trapped. There just seems to have been a huge tidal wave of what I will call ‘shite’ that makes my heart hurt. Are you ready for the list of ‘what is currently making Braingirl angry and sad’? Ok, here goes; The selfish actions of farmers in Hurricane Florence territory who despite having 2 weeks warning about the flooding, decided to lock all their animals in cages and leave them to drown in the flood (current estimate is 3.4 million lives) all treated like commodities they can claim on the insurance because we think we own sentient creatures. Hambacher Forest, a 12,000 year old forest in Germany, home to 142 species regarded as important to conservation, casually being torn down right now by a company called RWE for coal mining. The badger cull being rolled out across the UK, where farmers are being offered money to catch and shoot badgers in the head for no concrete scientific reason. Kaporos festival in New York, basically a chicken slaughter festival where thousands of lives are taken and dumped on the streets all in the name of religion. Then finding out 5 species of bird have recently gone extinct in the Amazon due to clearance for animal grazing for an effing beef burger (I’m looking at you MuckDonalds and you can shove your new vegan burger up your golden arches). If this doesn’t make you angry then you’re not paying attention.

This my friends was all in the month of September. This stuff goes on and on and on and yet we still as a society do absolutely nothing (and those that do get the most hideous abuse on social media by people who think ‘bacon tho’ is a clever and intelligent response to a call for compassion). Well I’m fed up mateys, totally fed up. I want to join the Hunt sabs but I can’t, my brain won’t let me, I want to go to protests, but I can’t, my brain won’t let me. I want to liberate animals, but I can’t, my brain won’t let me. All I can do is the moral baseline of being vegan and supporting those that CAN do what I can’t. I can’t be silent anymore. If you’re on Instagram follow @thesavemovement @animalliberationfront @unoffensiveanimal @undergroundbadgersyndicate show them some love and support for being on the frontline.

I massively digressed there but after more than 2 months of inertia and frustration getting that out was very therapeutic! Where do I go from here? I try to reason with myself and give myself that pep talk about feeling what I feel and being kind to myself and all that jazz, so here I am, with you, feeling my feelings. Despite everything I am usually fairly upbeat and progressive, I usually have an inordinate amount of hope in the goodness of humans but right now I want to give everyone a bloody good rattle, WHAT IS WRONG WITH YOU!

I went to my homie (am I too old to say homie?) Rumi for some good talk, here’s what he told me.

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How appropriate for just after the Autumn Equinox, dead leaves a-dropping all over the place. I suppose for my 6 year brainiversary it’s time to let the dead leaves drop, time to drop toxic people, toxic mindsets, toxic habits, drop sitting in my own insecurities about how I’m received and if it offends people and start to speak my truth. I need it and my furry, feathered and scaled brethren REALLY need it. Face year 7 in its face, stop stirring your own stew Braingirl and rule your world from your bed if you have to.

P.s. A small candle of good news this month was that I passed my final Horticulture exams with a commendation. All that work was worth it.

This song has been percolating around my noggin for weeks, here, you have it.

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4

When things go right

Hello all,

It’s hard sometimes after a brain injury to remember there is good in the world. It’s hard to believe that things will ever come good and that you will achieve wonderful, joyful, amazing things.

I’m here to tell you that you will. At first, it’s small tiny innocuous stuff like vacuuming the living room or putting the kettle on that then progresses to stuff that you never thought you’d be able to do ever again.

One such incident occurred with me recently, as you may know I’ve been studying Horticulture. A two year course that I’m currently almost halfway through. There are eight exams to sit with this course, two of which I did in February. Pre brain injury I had a photographic memory, I could read something once or twice and it stuck. Now I have to go over and over and over something before it begins to make any sort of sense to me. When exam time loomed I panicked, there was absolutely NO WAY I was going to remember all this sciencey stuff, all these strange names and new concepts.

So I did what I have to do with everything – I adapted. I started revision weeks ahead of what I would have usually done, made extensive notes and read them again and again and again. I’m so effing chuffed to tell you I got my results back this week; two clear passes with one commendation!

I doubted myself and my brain because I’d become ‘victim’ to my brain injury, I was in a place where nothing goes right and my brain is an organ that just lets me down. Well TAKE THAT LITTLE VOICE, my brain did good, REALLY good. I’m proud of myself for forging forwards even when everything felt stagnant and lost.

If I can do it, you can, I promise, it takes time and patience but I’m here cheering you on. Let’s celebrate small victories. What have you conquered recently?

2

Braingirl bonus. Video catch up. “I just want to grow plants and sing songs”

Hey there,

It’s me, I’m back. A load of old waffle (approx 15 mins) about what’s been occurring for braingirl. I talk about exams, fatigue and simplifying life amongst other things.

The usual surreal touch of going out of synch has not been rectified as per. But who worries about that sort of thing?

Enjoy!

0

Brain injury rehabilitation is a lottery.

There’s a statistic from a 2013-14 study commissioned by Headway that states that every 90 seconds someone is admitted to hospital in the U.K. with a brain injury. Let that sink in. Every. 90. seconds.

That’s a lot of brain injury. Considering the complex nature of brain injury that’s also a lot of uncertainty, confusion and heartbreak. Let us also not forget the practicalities such as loss of employment, social lives and the ability to ‘contribute’. With no real formal prognosis, aside from the age old (and untrue) two year recovery timeline, there’s a lot to consider.

I’m going to be writing this from my personal perspective as a citizen of the UK but I will say that I have heard many similar stories from many brain injury survivors world over.

Firstly, right off the bat let’s get that very British habit of shaming dealt with. There’s this tendency to tell ourselves that at least we’re getting some help and should be grateful, irrespective of the quality of that help. There’s also the old chestnut ‘there are people starving/being bombed/homeless/non specific event that makes them worse off than you’ (delete as appropriate). Yes this sentence can get dragged out at most opportunities, so whilst acknowledging there is terrible stuff happening it doesn’t mean that we don’t get to discuss where we have been failed and the fact that these failures have far reaching implications on a societal level (think numbers of people affected) is pretty important.

The most common complaint I’ve heard from brain injury circles is the discharge from hospital procedure (or lack of it). I was sent out into the world after 9 days, 5 of those in a coma, with absolutely zero information.  I had no idea that I’d even had a brain injury, I still to this day am unaware of which regions of my brain were affected. I wasn’t told I shouldn’t drive. I wasn’t told that there was any help help available should I need it and wasn’t given even the most rudimentary information about potential symptoms or even just a ‘make sure you get lots of rest’ on my way out the door. This, unfortunately is not just my experience. Why oh why would someone with damage to their brain, the most vital sensitive organ, be sent home with nothing? A universal leaflet with some contact numbers and a list of possible symptoms is all it takes. I’ll make one if you want.

If I had presented obvious physical or cognitive deficits I’d have been packed off to the  big modern rehab unit and in all honesty would probably be fairing a bit better right now as a result. I truly believe my recovery was held back by lack of information and aftercare. I came out of hospital thinking everything was functioning so every subsequent symptom that manifested sent me into a tailspin because I couldn’t figure out what was wrong with me.

My recovery began in earnest when I empowered myself by reading what I could to help me understand my new brain and my new life. I was referred at the 9 month mark to a Community Brain Injury Team (CBIT). This is where I got an OT, a physio and a neuropsychologist. This is a NHS service and they provided me with some stability during a very difficult period of my life. They did some great work with me but if I’m being fussy there is some disconnect because of the lack of lived experience. This is something that can’t be helped, I don’t want everyone to acquire brain injuries so a better understanding can be achieved but if a system was implemented where previous service users could be paired with the newly brain injured and integrated into the CBIT this would be extremely beneficial. In those early days you just need someone to say that they understand and have been there too. Also not all regions have the same pool of health professionals, I’ve been desperate for a physio recently but my particular region (I moved 2 years ago) doesn’t have one so tough. Not the fault of the CBIT, they work with what they’ve got but I just wish there was more consistency.

Outside of the NHS there are a handful of charities that provide counselling, activities and support groups. On paper they are a lifeline and I have no doubt they have helped countless number of people but it is a narrow slice of the brain injury population that fit into these services. I am termed a ‘high functioning’ brain injury survivor, I present well, I’m articulate and mostly physically able. My issues are invisible. When I have tried going to activities provided by charities, I don’t fit in. There’s not much differentiation for the differing levels of ability, most charities cater for visible cognitive and physical disability and I get sidelined. I have been spoken. To. Very. Slowly. at some and across the board all organisations forget you had a life pre brain injury, they don’t look at the person you are aside from your brain injury, they don’t see the skills you have or the experiences that have shaped you because they just don’t ask. You are not an individual, you are a set of symptoms. It’s difficult not really fitting in to  either world, the abled and the disabled. There are many like me who feel they have no home in the world of brain injury rehabilitation yet we are not catered for.

My main gripe with charities though is the absolute lack of communication. For some reason they don’t answer emails, they ignore you on social media. I’ve been waiting on a reply to an email I sent in September to a particular charity, I was enquiring about a service they offer as it would have really helped me. No response. It is not my job to constantly prompt them until they reply, so I did what I usually end up having to do and sourced something myself using my own energy and money (both of which I don’t have much of due to aforementioned brain injury!). There is one national well known charity (who I won’t name) that have THE most apathetic attitude. They are unwilling to share anything that may help others because it’s not their ‘brand’, they ignore my queries constantly on social media (maybe it’s just me they’ve taken against, who knows?) and never respond to emails. Feeling lonely and ignored is common amongst brain injury survivors and this lot just reinforce that. Come on folks, get it together!

I have found a common thread in the UK that services are a little more reluctant to use lived experience as a tool to help others whereas across the pond in America and Canada (particular shout out to Brain Injury Society of Toronto) they actively embrace survivor testimony to spread awareness of brain injury. We’re a little overfond in the U.K. of health professionals sitting together in big dusty rooms talking to each other but not including the people with the most experience in these discussion – us! This is why the slowly increasing push towards using service user voices to inform and improve rehab is a great thing (the Oliver Zangwill centre are great at this). We are dying to be heard, to get our chance to speak, use us.

Do you have your own experiences with rehabilitation? What helped and what could be improved?

4

Braingirl Bonus #2 Woman in a shed

Hello there, I hope this finds you well.

Today’s post is a short video (approx 3 mins) of my allotment. I’ve had it for a year now so there’s been one growing season so far and it was pretty successful despite the best efforts of the Northern Irish weather!

I got myself a shed and this is something that has excited me beyond measure (it’s the simple things these days). This was my third attempt to acquire one after being let down twice already (like gold dust I tell you!). I found a shed builder tucked away on a farm amongst the ribbons of country roads round here. It was also home to the waggliest dog I’ve ever met. He was a man of few words but he turned up when he said he would and built me my little hideaway on the allotment.

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So bearing in mind it was a very windy and cold day I whipped a camera around the plot (no quality control mind you!) to show you a snapshot of where I spend my healing time. Getting into growing veg and flowers has been an absolute lifeline for me. It keeps me mindful, I get immense pleasure from it and its very satisfying to plant a tiny seed that then becomes a huge plant with tasty things to eat. It’s most definitely magic.

I recommend getting into the soil to get some therapy,   I enjoy it so much it sent me in a new direction and I’m now studying Horticulture at college (which is soooo hard) to use gardening as a therapeutic tool for others.

Do you find gardening helpful? Let me know below.

Anyway without further ado, here’s a short video for you.

 

5

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

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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)

17

But now you’re here, brighten my Northern sky

I wanted to wait a few days to write this but got too excited so I’m just diving in and getting it done. A few days ago (29th July to be precise) myself and Mr braingirl went and did this.

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We had kept this fairly quiet, planned it over the past few months and then on a glorious sunny day in the north of Ireland we had a beautiful handfasting ceremony. The numbers were kept small (close family only) with a few wonderful generous friends, whom I wish to thank through this post, who contributed to make the day special by playing music, taking photos and conducting the ceremony. The whole day was held in our beautiful garden courtesy of our landlady and we had a scrummy all vegan buffet by Sarah’s world fare .

But, I hear you cry, what does this have to do with brain injury? Well, everything and nothing. Those of you familiar with my story so far will know myself and Mr braingirl met a mere month before my injury you will also know how he has tirelessly cared for me for years. It is also known that my fatigue restricts many things in my life including big stressful events like …well….weddings. On the morning, I had a few moments of feeling like I couldn’t do it but I told my brain to get itself together because THIS IS ON. But this is also absolutely nothing to do with my injury, it’s a day separate from that thing that happened, it’s a day we used to reclaim ourselves back as a couple without the third wheel in the relationship having anything to do with it. Let me tell you it was a day full of joy, love, beauty, nature and friendship.

It was a time when both our families could get together for the first time that didn’t involve intensive care and hospitals. A time for me to reconnect with my niece and nephew who are wild wolves in the best way that children are supposed to be, full of fun and wonder. I sit here now full of happy tears because my family have gone home across the sea and I got a glimpse, a reminder of just how good life is. I sat for a few times at the wedding and looked around and thought to myself ‘THIS is what life is about’.

I want to share a few things about the day with you, firstly we did it without spending massive amounts of money. No wedding needs to cost thousands of pounds. A few people told us it was the best wedding they have been to ( not family members, so no obligation to say this) and I think it was because it transcended the actual act of the mechanics of marriage, it became about the meaning of it and the heart present within it. It was handmade, rustic and simple, no fussy dress code, no formal speeches, no present list, no long drawn out hymns and the only rule was to relax and have fun. My mum in law stitched reams of bunting and made our cake, I made table decorations from bundles of twigs from the garden, confetti from dried rose petals and lavender, tree decorations for pence and a bouquet from garden trimmings put together on the morning.

I sneaked in a secret speech that I’d written that made my mum cry snort as it was a thanks to Mr braingirl for the nearly 4 years of care and safety and support. It was my time to try to give back to him a little something for diverting all the attention for all this time.

All in all it was a magical day (and I use that word as it’s literally intended, I had goddess blessings from a witchy friend, hidden and not so hidden about my person). A day I wish I could do all over again, there was something very special in the air two days ago and thanks to Shirley our pagan officiant we spread it around to all our guests like magical beautiful confetti.

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Just before it started, what a beautiful setting. (Photo by my sister).