3

Where do I go next?

Hello fellow headbangers and non headbangers.

It’s been a while huh? Or at least it feels that way as Winter often does. Slowly crawling through the cold dark nights until the faster warmer energy of Spring hits. February often brings a great feeling of hope for me as I feel new life begin to stir and start to think about my new season of seed sowing. My energy levels definitely match the season, I‘ve been half asleep for most of Winter, wanting to hibernate and sleep, a feeling we all get I’m sure.

Despite the urge to curl up I’ve been active when needed, I aged another year in January (I’ve started counting backwards now!) and just last week I did two more Horticulture exams, exams number 5 and 6 out of 8. I revised for two months for these exams because they were hard. Lots of Latin names and features of plants to learn. I ended up dreaming about trees and randomly had names of shrubs popping into my brain like intrusive thoughts whilst I was driving or in the shower. There has literally been no time for anything else whilst this was going on. No more multi tasking for me. One thing at a time please.

I only have 4 months left now until my last pair of exams and the end of my 2 year course. This has brought up so many strange feelings. I have LOVED doing this course, yes it’s hard, but I’ve loved it. I love the fact I’ve learnt about something totally new, I love that it meant I had to get out of bed, I love that I met new people and I love that it’s something that has felt so heart-full. Something that resonates with who I am. But this now leaves me feeling a bit in limbo, where do I go from here? When this is all over what do I do next? I know I want to continue with Horticulture but I’ve no idea how. There’s a level 3 course available but no one in Northern Ireland teaches it, it would mean distance learning via Edinburgh and hopping over there to take exams. A lot of faff right? I don’t want to learn all this wonderful stuff and just leave it lying dormant in my brain to eventually disappear.

Horticultural Therapy is a route I’ve considered but on researching it’s difficult to find just HOW you get there, no specified route, just like post-TBI life I suppose. I’m in equal parts extremely happy and grateful to have nearly completed the course but also sad and lost about it ending. This as always has parallels with how Brain Injury feels. You spend a lot of time wondering just where you go next or where you have gone or how you fit into society anymore. It’s a strange limbo too.

All this time I’ve been unplugged from what is deemed the accepted way of living, I’ve grown. Just like one of my beloved plants I’ve rooted and shooted into my own space. The further I go into discovery the more and more I know that modern living has got it all wrong. Believe me, it has. I’ve always known really but never been brave enough to step outside of it fully. My TBI gave me a chance to peep behind the curtain properly and show me what is acceptable to me to help me grow and finally learn to love myself. I never did, you see, always so hard on myself chasing perfectionism, chasing chasing chasing…….well nothing really because ultimately it was always here. As a kid I was totally uncensored and brave and in the moment then life knocked it out of me as it does with us all. The young me didn’t question about being ‘enough’ or wonder if so and so would approve, she did it anyway. I like to think some of that has come back since my brain got a factory reset.

There was also the realisation that I no longer think obsessively about what happened. There are weeks now where it doesn’t even enter my head. I can still get frustrated about my LACK OF ENERGY and my inability to sustain activity. Do I wish I wasn’t fatigued? Of course I do, but I am, so that’s where we are. I still have a cry at times but I don’t think about it every day. Therein lies acceptance. All this time I’ve been waiting for a whizz bang explosion of glorious acceptance showering me with golden light but instead what it did was slither quietly into existence. No light bulb moment just gentle, expansive post traumatic growth.

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So I reckon with lots of falling over and near drowning and howling at the storm I may have, just maybe finally learnt to surf.

3

Austerity xmas

It’s freezing cold here at the moment and I’ve been in bed for the past week recovering from an activity last Saturday that drained me. Whilst sitting here twiddling my thumbs I thought I’d do a bit of the old writing and let you know what’s going down for me right now.

Firstly I’ll tell you I’m feeling a little bit furious, a little bit sad, a lot tired and incredibly deterrmined.  This festive period is being defined by a new challenge in my life and that is to take on the current British government (not literally but you’ll see what I mean soon). I try not to be political on here but I will make no bones about my disgust and distaste for the current lot of clowns in Parliament.

I have watched from the sidelines for the past few years as more and more sick and disabled people have been thrown into extreme poverty and some have even died or taken their own lives (according to CAS this number is in the tens of thousands, yes you heard that right) due to Social Security reform in the name of austerity.  NHS Digital also report that in 2016 rates of self harm and attempted suicides for ESA claimants had risen by 43%.

I was watching knowing that eventually they would come for me.

When the brown envelope (brown envelope-itis is becoming a thing) dropped through my door I had to take a deep breath and centre myself before I opened it, I knew it was my turn on the merry-go-round. I filled in the form for PIP which is in itself a bit of an ordeal. Having to relive everything that has happened and  putting into black and white how different things are for you triggers stuff. All that stuff you’ve gone through and endured comes bouncing back up and straight out of your eyeballs.

Once this was done it was a question of waiting for the assessment. Ah the asssessment! Where one of the evil twins (ATOS or Capita, urgh!) send round a ‘health professional’ to ask questions, observe you and push for concrete answers to extremely abstract concepts – they also make you touch your toes (despite the assessor telling me that this part of the assessment wasn’t relevant to my condition she made me do it anyway then used it against me in her report). The assessment is not fit for purpose, it doesn’t factor in invisible disabilities. Yes I can touch my toes but I can’t get out of bed to do it!

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After waiting a few weeks for the outcome then being refused any sort of financial assistance I had a meltdown, a proper meltdown. It dredged up those feelings of hopelessness and uselessness as well as having thoughts  of suicide. Once the despair abated, then came the anger and determination, I was not going to take this lying down (well maybe I’d be lying down but I’d fight). So I researched the appeals process and began the frustratingly slow meander through the highways and byways of the Social Security system. I requested a copy of the assessment report (you can do this, it’s your right to know what was said) and it was like reading about a different person.

Now I’m not saying that an outsourced agency like Capita will lie about people, ah…. ok… yes that’s exactly what I’m saying. I’m also aware the staff get bonuses for every person they throw off benefits, sort of like a cruelty pay rise. The report could have won the Booker Prize for Fiction. It was full of contradictions and things I didn’t say as well as omitting things I DID say. I was also deemed not disabled due to being intelligent and aware of my condition, I MEAN, GIVE ME A BREAK that is the most outdated and Victorian attitude about the disabled I’ve ever come across. This idea that being disabled equates to some Quasimodo-like existence where we are not articulate and smart and funny. We’re either ‘inspirational’ people who beat the odds to win medals and row the Atlantic single handed or we are dribbling no hopers. There is no middle ground. Society wants you to be one or the other, no shades of grey. Heaven forbid you’re disabled and dare to scuttle out from your cave and try to have fun and enjoy your life.

So we are now locked in a festive waiting game. No decisions, no supplementary payments, no hope until after Xmas. As a knock on effect of PIP refusal Mr Braingirl has also had his Carers Allowance stopped so we are truly on our arses right now. BUT they will not beat us. I want to see this through, it will take all my energy and all my courage but we will go to court and have our say. If we fail, we will try again. I’m a working class Northerner which means I’m genetically predisposed to rolling my sleeves up and taking on the powers that be.

This is the thing with ‘austerity’, the rich and powerful have all they could want but they want even more and not only that, they want to stop you from having any too. They are creating a culture of ‘unworthy poor’ where having less is some kind of disease and something to scorn. They are deciding who to throw crumbs to but making them somehow ‘other’ in the process. Ably assisted by a media who help deflect your anger from where it should really be directed and instead make you angry at refugees, the sick, the disabled, the poor, the young and the vulnerable. Your brother or sister who is struggling and trying to access a lifeline that was created to help when circumstances beyond their control affects their life. This degrading and dehumanising system that is now in place was unfortunately voted for by the public, a section of the public who think society exists solely for themselves, the ‘I’m alright Jacks’ the ones who have lost compassion somewhere and forget that we are one, that we work together. The public who don’t really believe that this is happpening.

This is not something that is occurring in a film, this is real life. YES it is happening, NO it is not made up and it’s killing your fellow human.

4

Dream with the sun and the skies

There was a time in my hazy past in the period directly after my brain injury when the thought of being 5 years along seemed like an untouchable made up place. When I was sinking in quicksand every day, 5 years into the future was a place that was full of exhaustion and fear. Today I’m hitting that 5 year mark, and it is a liminal time for me. A time when the deja vu that is my anniversary effect whips me backwards and forwards out of the present and into dark corners. A time of contrasts – great sadness followed by gratitude followed by fear.

I’m still making baby steps in my recovery. I’m still traumatised and lost and I’m also still having moments when I conquer stormy waters. There have been little light bulb moments happening to me throughout the past 6 months especially. Moments of learning and acceptance of myself. Moments where the TBI comes and pokes me in the eye again and reminds me that it’s still hanging around.

An example of this is my inability to socialise like I used to. When I have the energy to be around others I’ve discovered that it feels like I’m from another planet. I am not neuro typical anymore, I can not do small talk and I have lost my brain to mouth filter. I find that a mixture of social anxiety, unwired neurons and the fact that I don’t get to talk very much so when I’m around others I can’t stop yakking, all contribute to some odd discussions. I say things out loud that I need to keep to myself, I interrupt others, I do not shut up and I’m unflinchingly honest and open. I am acutely aware that I’m verbally diarrhoea-ing over everyone and that I sometimes say things that make people feel a little embarrassed. The end result is I feel odd, out of place and weird. I then tell myself that people don’t want to be around me and listen to me and that I’m somehow not ‘normal’.

‘Normal’ is a funny word, we use it to describe the average persons daily activity and behaviour but I know that there’s not really such a thing as ‘normal’ anymore. I suppose I’ve always been a bit eccentric, a square peg in a round hole but since my TBI that has compounded. But here’s the thing, whilst in the past my eccentricities have been something I felt I needed to hide to ‘fit in’ (a mistake if there ever was one, I needed to celebrate my oddness), I now, most of the time, don’t care a jot. I was told a few weeks ago that I’ve gone ‘a bit strange’ my response to that was that maybe I’m the sane one.

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I want to own who I am and where I’ve been. I want to own the beauty in my life, the things that make me curious and joyful. My strangeness is my strength. My strangeness is my medal, I earned it my friends.  I’m a tree hugging hippy, I care about animals and people and the Earth so I live my values as a vegan, I believe in Magic, I think universal love is massively important and powerful, I have a head full of fanciful notions, I read tarot cards, cleanse crystals, talk to plants, believe in ghosts and see fairies. I talk too much, I can be a frightened rabbit, I wear pyjamas too much, I am fiercely loyal and incredibly stubborn, I grieve and cry, I am exhausted and I give up many times. I am all these things. I am dark and light, full of contrasts and imperfections. Isn’t it wonderful.

Happy 5th brainiversary Braingirl. You made it.

 

 

7

You just kinda wasted my precious time

If you look at my home page under the ‘social’ heading there’s one lonely YouTube button. There used to be one for Twitter and up until yesterday one for Facebook. I’m leaving Facebook you see, we’re getting divorced. A decision that has been a long time coming but the time is finally right.

I went on holiday about two weeks ago, a short holiday of 3 nights away on the edge of the world in Donegal. Whilst we were there we had no internet access and it was WONDERFUL. I actually read books and went outside. I was measurably happier. For a long time after my TBI the internet and more specifically Facebook became an avoidance tactic for me. When I was too knackered and frightened to do anything I would endlessly swirl around in a circle on social media, logging in and out just to pass time. I knew that this habit was not healthy. Mentally healthy.  Don’t get me wrong, at times it served a purpose, I had my wonderful Uk and Ireland support group to keep me occupied and at times prop me up when I was descending into PTSD misery. That group is also continuing to do great things for people with brain injuries and will no doubt continue when I’m gone. It was hard to tell them I was leaving but all things must evolve, including me.

There became a point where Facebook was like sitting in a café, one I was familiar with but for some reason I visited it everyday even when I didn’t need to. Other people I knew were in the café, people I liked. For some reason though, they just sat there and randomly shouted things that were odd, things they wouldn’t usually say but in Facebook cafe things JUST HAD TO BE SAID. That’s my first issue with it, the need to speak, to say things, to write commentary on every little thing, anything, as long as it’s written down and responded to. I found myself thinking this is not how I converse with people I like. The weirdest thing though was the strangers, the strangers sat at other tables who interrupted my world with racist or sexist comments, jokes that weren’t funny, chicken littles who every day said the sky was falling in, advertisements of pages I had no interest in, angry (mostly) men who didn’t really know what they were saying but JUST HAD to rant. I spent a lot of time moving tables in the cafe, away from the ones I didn’t know, a lot of time putting in ear plugs and shutting my eyes but you know what? like a babies nappy full of poo, they just kept seeping through.

After those three days of Facebook peace  in Donegal, I asked myself just what on Earth I thought I was doing. There’s no way in real life I’d tolerate this amount of nonsense for so long. But Facebook is very clever, it convinces you that you NEED it. Other people drugged by it try to convince you that you NEED it. I convinced myself for a long time that I NEEDED it, ” it’s a useful networking tool blah blah blah” “how will I ever meet people otherwise blah blah blah” But here’s the funny thing, there was a world pre Facebook where I still managed to talk to people.

So this will be the last post of mine that you will see me pushing on Facebook. Some would argue I’m shooting myself in the foot by removing an audience and ready avenue of advertising for my blog. Here’s the crux of the issue, I simply don’t care. I don’t care about Facebook and I don’t care about being a mega successful blogger. As long as what I do helps people when it’s needed then it’s all good.

I’m free now and it feels FANTASTIC.

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

Solstice and the festive season

Hello there,

I hope this post finds you all well and making little steps forward. Today I took a camera out on a Solstice walk with me so I could share it with you but I deleted the files by accident (yay brain!) so plan B was to film in the garden to at least get something done.

I wanted to write something short today about the festive season and the pressure it exerts on us all and how that is so overwhelming for someone with a brain injury. This time of year is hard for many people for a myriad of reasons, it can be a lonely time and also a reminder of things we have lost too. It can be hard financially as well as emotionally.

With a brain injury it becomes a time of extreme overwhelm physically, emotionally and sensory and all these things together add up to relapse and many days in bed. Whilst many of us would like to join in more with family gatherings its just not possible to maintain the level of energy needed. So if your loved one has a brain injury don’t feel they’re being awkward if they leave early or don’t make it at all, they’re simply unable to cope that day.

As for you my brain injured brethren, remove guilt from your vocabulary, DO NOT feel guilty if you’re unable to last more than a few hours or if all the people talking causes you to feel irritable and you need to escape. BE SELF-FUL. Do what you need to get through safely and calmly.

My number one tip is to do your own thing. This is what myself and Mr Braingirl do, Christmas is not a time we celebrate, we get ours in a few days early on the Winter Solstice and celebrate Yule with a nice walk, nice food and a fire. We’ve done this for a few years now and I’ve survived the festive season feeling peaceful and refreshed. There is absolutely no obligation to do anything that you don’t want to. NO regrets, NO apologies. People who love you will understand and not pressurise you into doing something you don’t want to do. If someone does try to pressurise you then be brave and give them a great big NO. Remember you live your life for you, nobody else.

If you do the big family thing, remember small chunks, lots of quiet rest breaks in another room, ear plugs for the noise, lots of hydration (I mean water not the Xmas booze!) and get yourself home and in your pyjamas when you’ve had enough.

Here’s a small part of my day today I want to share with you. I’m always available to contact if things get tough.

 

Have a Merry Solstice everyone, welcome back the Sun and let your light shine brightly.