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Saturday, 31 December 2016

Flexing your resilience

I enjoyed a recent article by Shawn Achor, author of the Happiness Advantage exploring his view on the Importance of resilience and building this up as a skill as I have long believed that developing skills that improve resilience are incredibly important life skills. In it he talks about how taking breaks and giving yourself cognitive time out is becoming more and more important to increasing resilience.

Coming from a point of view of having had to relearn how to do things and think things I know only too well the invisible effort and toll that is placed on our brains and how it is only increased in today's social society which sees us bombarded with constant demands and attention. I have to schedule regular quiet times, without it I experience a cognitive fallout which means I am very incentivised to keep my own time outs. It's a bit like putting myself on the naughty step, I take myself out of conversation , out of a room and just switch off for a while. Sometimes I meditate, sometimes I practise my mindfulness but often I just do absolutely nothing, I give  my brain some' white space' or alone time.

Now I can extol the merits for me of doing that and I know that it helps me keep my slightly damaged grey matter limping along better if I do that plus drink lots of water but I think technology and popular thinking is catching up that actually we all need that space and room to switch thoughts and just let the mind be still wiout asking it to 'work' on something else. We can't be switched on all the time.

But what exactly is resilience and can it even be learned? Modern research says yes and that we all can, you just have to take the time to become more aware of your reactions and emotions.

Having a brain injury in some respects has actually assisted my resilience a little in that it has put an enforced level of retrospective thinking and also managing the pace and capacity at which I enter into things now. This means that when I fail at something or get knocked off my feet as I still often do I can usually see it in the context that it will pass. Now please don't think that I'm sitting here all smug with it all sorted, nothing could be further from the truth, I get scared, I get panicked and I get cross just like everyone but I can see that it will pass given enough time, the challenge is to let it and give it that time despite fears or pain and always ask for help when times are at their toughest.

Things don't always go to plan and I am often known now for saying I don't have a plan, and I don't most days, I just look at what I can do this day, this moment and take that. Some of the best things you will ever do are actually endless, there is no finish line , no completion target and it's a never ending effort but that doesn't mean it's not worth the time or engaging with it. Hard doesn't have to be feared just engaged with. Other life moments might feel like the hardest or most painful time of your life but it will be in the rear view mirrors eventually.  Our life story is forever a work in progress and so resilience I tend to think of as the level of bounce factor that you develop over time and  use that rubber ball quality to take the knocks and falls that inevitably come to all of us.

In the today of broad social media, unlimited consumer choice , immediate access for most services it sometimes feels that we have lost sight that often things that are really hard or take time or require learning of personal risk and investment are the experiences that bring the greatest reward and I think that can negatively affect our resilience levels. If we think everything is too easy to get, or easily solved then it makes sense that we will find it much harder when problems or tough times aren't solved by a like or swipe. It's something we could all think about a bit more maybe especially how are we preparing the next generation to weather their storms which will inevitably come their way as no one sails their life unscathed. Are we teaching them perseverance, self kindness and hope. Something to ponder as we enter a new year.

The delightfully outspoken Carrie Fisher passed away recently but one of the things I liked about her attitude was that she wasn't bashful about her challenges , they didn't define her but she knew she had to live with them and hiding them away and pretending they didn't exist wasn't for her she just got on and lived as best she could, warts and all.

So a happy healthy new year to you. I hope that this is the year that you continue to be resilient and that within the days to come  we get all the spikes of fun, frivolity and laughter that make the troughs of life so much easier to navigate. My annual MRI beckons for me early Jan and others also  embark on a challenge but we will all face it I'm sure with as much bounce as we can muster. As Carrie Fisher is apparently quoted as saying , "stay afraid but do it anyway" so lean in and just get on as best you can, that's all we all can ever do!

Wednesday, 28 September 2016

Without risk you can't explore possibility

Don't worry the picture doesn't mean I'm about to wash my dirty linen in public,  your secrets for those of you who share them with me remain very safe I promise. 

Post brain bleed One of the things I wanted to be able to do was hang the washing out and it took me a very long time to find a way back to it and to accept I do it differently now. You may find that a weird ambition and observation but for me it was such a simple act that seemed so far from my reach. The coordination was beyond me , the balance was gone , there was no energy to cope with the physical demand but as soon as I was able I tried again and again to see what was possible and explored what was in my reach that day. 

Some times I had to just settle for enjoying the view of someone else's work( thank you to those that pegged for me)  but even that could raise my smiles just getting to sniff the freshly wind dried washing when it came in and I added it to quite a long list of regains or should I say retrains in my sights. What followed was the indignity of falling into the washing basket followed up just as swiftly with the purchase of Lakelands amazing basket with folding legs as whilst I'll ask for help on most things being stuck in a basket is just a little hard to swallow even for me.

Over time I got there. Not always and not every time and that's part of just noticing what's right for me today, what is possible and adjusting to that state. Pausing and just trying again not expecting to keep falling. Or at least not in the same way! It's Very much like my getting on the paddleboard except my re- accomplished act of hanging out the Washing more serves to slow me down now rather than stretching me physically plus less chance of getting wet. 

I just go slowly at it at my own pace , hanging each item out one by one. Noticing what each item in my hand, how it felt. Smiling at the kids things. Noticing the pegs in my hand, what the clouds were doing , the shadows around me, smelling the fragrance waft past.  Small pleasures of the act and just allowing myself to enjoy hanging out the washing. Of being able to. My mind often wandered , sometimes I let it, strangely often a blog post comes to mind and I make a mental note to do that later but then I bring my thoughts back to focus just on hanging out the washing , the task and being mindful of just that and what was possible for me in doing it today. That's a bit of a lesson in Mindful Washing hanging up 👕👖👙but it teaches you to notice all the 'is's' and less of the 'isn't s'  which is helpful in today's world of judge everything. 

So this picture was taken earlier today and reminds me very much of what noticing and focussing my attention means and how it helps me in my everyday adventures  which is especially vivid after leaning in this last week to what was a big challenge and using my mindfulness practice to help me stay with what was possible. 

This weekend gone I had the joy and privilege to join a wonderful group of people who were embarking on a weeks course teaching us to train mindfulness in the workplace. I learnt so much from them all during our time together and whilst I didn't actually complete the full duration of the course what I did manage to accomplish was a huge deal for me . Those of you who recall those early days post bleed early will know it seemed almost impossible to dare to dream that I might one day stand in front of a group and be able to train again. Also Learning and retaining new information at an intense rate has proved exhausting and out of reach for me many times since then especially as the same patterns as I might have learnt with previously don't work anymore so it's still a big work in progress but that didn't mean it is never worth trying or the taking risk to try a little more. And yes , whilst my hard neural deficits which are now my new normal showed me red flags eventually , it was then ok to say 'well this is all I can do  this time' whilst not accepting that I'll never do it but rather I will get to the end result or maybe even a different outcome a different way and at my own pace. And that's ok with me. Actually it kind of makes me happy. I did what I did despite the fear and risk of not being able to do it and in doing that I know more about what's possible for me today. 

Disappointing? Of course that's just normal emotions. Tears of frustration? At the time, You betcha but luckily matched by willing hugs and rallies of encouragement and letting go of my sadness that my expectations didn't match up to reality just helped me with transition so I then could see what really was achieved in my days. My kind hearted fellow trainees also reminded me that they were also finding it very intense and secretly I wondered that maybe they would have all been pleased to have had an early escape too.  It does also help that having a corrupted short term memory means I quickly leave past disappointment behind, so forgetfulness has its positives and I intend to join them in sprit when they venture out at the end of the week to break their learning with a mindful beach walk as I expect they will be really flagging themselves by then. 

I did have to come home, sleep lots and lots and then some more and then just to be sure I hadn't fallen too far I needed to do a quick check I was still able to hang out washing as my words have rather jumbled themselves up with all the mental toll but that's not unusual and will pass, it always does. And the washing was accomplished. 

Life after Brain injury teaches you many things but it appears that staying with the moment , focussing on one thing at a time , 'uni-tasking ', and just seeing what's possible right now is a pretty useful habit to really work on and I've found can really help out if you've hurt your noodle.  I know I've said before that I think everyones brains, fully intact or not just like it better that way and it's kinder than being switched on in full attention mode to everything all the time. 

We all have wishes and gaps between what we would like to happen, what we wish had happened but being able to practise stopping so we can better see the possibility of what IS happening right now can actually help us be more resilient when we do need to pause and slow and often using that time that brings something to smile about and a breathing space to pause in just being here. That's something to smile about. 

SO This is today's washing. Just blowing in the wind. Maybe take a pause , breath and a moment to enjoy it. To see it. I did. 

Saturday, 20 August 2016

Balance takes a huge amount of practice

 I met a fabulous young lady recently at the start of her exploration into what may be suitable future career and got to chat to her about what neurological effects feels like from the perspective of someone who has witnessed a brain change. I explained to her that my curiosity throughout my experience has helped me so much to figure out what may be possible that day and when it's not thinking about alternatives is a good place to start. I also said It had adapted my view from 'all you need is love' to 'love lots and practise resilience'.

I have always felt thankful that the portion of my brain that allows me to be curious has been a constant trait even when things were very messed up and I think being curious helps build resilience especially when life changes suddenly or dramatically. So not accepting that today's limits will be tomorrow's and working out how that might be influenced started early on and continues today. That and just being a little less rigid and wanting to control too much.  

Back when life hit reboot two successive brain surgeries meant a surgeons version of a pretty dreadful haircut and that combined with my obvious poor health, dramatic weight loss, leg wobbles and speech difficulties meant that people meeting me in the months post my brain haemorrhage realised that here was a woman who'd hit some pretty significant trouble and lumps in the road. Now over four years on you would never guess by looking at me that I can't take high intensity noise, that lots of chatting and sudden weather changes will put me to bed and to put it bluntly I have to make different choices to ones I would have previously. These days I move with a hidden heavy baggage I can't ever put down. 

I have always wished and hoped that my SAH and resulting hydrocephalus would not become something that defines me but my everyday reality suggests that is slightly naive of me. I have to be considerate of my conditions and that means making allowance for them. The lasting effects and significance of the bleed and living with a VP shunt shapes daily what I can do these days and so is a big part of me and who I am now. Adjusting to this new state takes time though and whilst I strive for acceptance of my changes I will never stop pushing to see what's on offer today and what more I can do tomorrow. 

So this photo's is kinda a big deal for me , a 'whoop whoop ' moment as its not that far back really I could hardly walk unaided, let alone balance on dry land for long, my core was completely shot as my shunt placement meant both a stomach op and 2nd brain op to recover from and my brain state since then is never great tbh but I never stopped hoping and looking to possibility of progress. I've had lots of encouragement the whole way but doing paddle boarding , an ambition I had hatched pre SAH,  is big news for me even if it did then wipe me out the following day.

Tough shit and trauma happens in life and you're never ready for it whatever shape or form it takes, it knocks you off your feet but 'it is what it is' and then we all have to find our new balance with any new state that comes after. This picture shows and reminds me that whilst I maybe could have done a warrior pose on that board  easily pre SAH now I just know I can be that warrior and battle on and do what I can do today, in this moment.

Figuring out what you can 'deal' with  today I think is important mental housekeeping for all of us and essential if I was going to be able to do some of the things I wanted to do. Some may call that mindful I call it pragmatic hopeful living. 

Taking some gambles and risks was Important  then as it is now but each decision has to be weighed up for the value that it may bring. My being able to stand on a paddle board, for my brain to cope with that demand to balance and physically movement is exhilarating and I know the memory of doing so and the thought of next time trying again will lift me with hope on the days when just swinging my legs round to get out of bed is hard or when I have to be completely still because the head hurts too much to do anything else.

People reading this with brain injuries will just get it but that doesn't mean people who haven't gone through that experience won't or can't understand, sure they don't have the same circumstance but many will have had time in their life when they have had their own mountain to climb and will know what effort it took or is taking to climb it. We all carry invisible scars and stories and those need just as much time and nurture to heal as the physical ones. 

Having helping hands along the way to hold on to and that you can always reach to give you extra balance is what you need to really become strong to stand on your own two feet. That's what this picture doesn't show, all the hands from family,doctors and friends that have helped me do just that and to find my new balance however fragile it is and you know who you all are. Thank you all. 

Let's just keep balancing and paddling as best we can together! 

Saturday, 6 February 2016

Plateau a go go

Plateaus are often a beautiful place, at least that's how they are depicted but look closely at most of the images and they are windswept , flat empty landscapes most often with some beautiful far off vistas which create an awesome scenic picture but if you are stood in the middle of that setting the chances of getting to the mountain, or down to the river seems pretty daunting ,unlikely and just too far out of reach.

And that my friends is why they use the word of plateau in language when describing the healing trajectory commonly seen in brain related conditions and injuries. It slows down. 

The first six months post my brain bleed were a roller coaster of changes, learning, adjustment and unsettling effects , learning everyday what I could and couldn't do, adapting, grieving. The second six months followed a similar pattern, starting again at my brain base camp after another invasive surgery for James Shunt, and then the second year rolled round and despite surgeons warning that progress can be slow I made great strides and regains. I delighted in it, I got scared by new pains and unexplained sensations yes, but then new ways to think revealed themselves to me, I explored what I could and couldn't do and found help along the way to adjust to this shifting state and it was a never ending shifting state, every day different. Exhilarating but also terrifying and unstable. Exhausting. The third year on and changes were less dramatic, my favourite word and ambition became 'steady' and as the year has passed I realised that I am experiencing this plateauing effect that the Neuro team had mentioned.  There is a point at which you maybe find your new normal and make peace with that, say farewell to the old reality. My normal of old, which many would agree wasn't all that normal is long gone, out of reach and ever since that point I have struggled, railed, climbed and explored to discover what was left without realising what I actually was looking for was what is in front of me, not so much what is left but more to discover what is still possible. Thing is when you aim for a steady state then hopefully and eventually things will level off which is very agreeable after such a climb  but then you realise you're really not sure where to aim or reach for next and that's me right now. Do I Risk my steady state where I have found my limits to push on or just sit a while and enjoy the view. Decisions. But what a lucky girl to be able to keep exploring that and that my brain is giving me that opportunity to do it after all it's been put through. 

All a bit deep really but since brain pop I'm much happier to just be happy with now in my life, often you're doing all that work to push and try and watch you don't often stop and look around but I can honestly say I've watched my own progress right the way through. But then you plateau, a forced full stop and that's actually a pretty pleasing point. People ask of my recovery, are you all better now, and the answer is probably not one they enjoy so I mostly say 'oh I'm doing steady' Better? You bet I'm better than I was, but will I ever recover or be totally fixed , whatever that means, well that's impossible ambition so I take my deficits, my clunky whirring brain kit, I talk to my gerbils work with it all and keep seeing what's there still to discover, what is in reach. 

And so it continues. I do what I can do to the limit of my current brain capacity , as it is for now and knowing it may well change, in fact no doubt it will. I do more, I know myself more and progress and change is less frequent but still as pleasing but to stop for a while, to  be steady in this plateaued state is far from lonely or desolate as it is time well spent getting to find and know myself again.