Lowering the curtain

It’s been a decade since I went pop. That hardly seems possible that all this time has passed but equally what does the period of a decade passing really measure or tell us. Sure we all know it is a count of ten years, but that statement can never encapsulate all of the shift , change and adjustments that have happened during this time. I use my mindfulness practice a lot to try and bring pause to each and every day and get some measure of how I am feeling at a given time but what it has most helped me to do is flex my ability to stay with difficulty. I reflect one decade on that there has been an awful lot of difficult moments and pain in that time but most of them are equalled by growth, by curiosity, surprise and joy of what is possible. And that brings balance.

If someone had told me ten years ago that my life as I knew it was going to totally transform or that I would physically be broken and I would have to start a process of rebuild and explore really difficult emotions I think that I would have asked for an immediate deferment. 

But now I wouldn’t have changed it happening other than for the sake of saving some heartache for those around me, especially my amazing daughters, as having to adapt to a mum that is quite dramatically different and challenging to live with at times has been no easy path. The early years were filled with so many hurdles, at times i doubted whether i could ever get to something that resembled my previous normal independance. PTSD was a constant uneasy companion , the hangover of my sudden trauma and the need to submit to so many awful but neccesary procedures at the mostly kind hands of my NHS heroes. Panic attacks were not uncommon, but slowly, bit by bit the pieces of me started coming back, its just they didnt fit how they did previously. So I had to be patient, more open to change than I ever had been before. New paths opened, old doors notched ajar, some firmly closed forever...(skiing i miss you), but new adventures opened up like learning SUP , meeting and making new huddles of friends who got to meet this me, never having known the old. being able to laugh more and cry less with those who shared my losses along the way. The confidence in what I can do has built year on year, some fails and many falls along the way. Health wise I am now in a really steady place, my physicians are happy with me, James is behaving himself and I’m physically fitter and more capable than I was a decade ago albeit still living with the cognitive deficits that will never recede. 

I mostly have coping mechanisms for those and whilst they can still rock me , especially when my speech, eyesight or balance decide to fly away temporarily as a result of my expending too much energy, the trade off is I really know myself better now than the version of me beforei had my brain bleed. I am more protective of my boundaries and really try and invest in making sure I am keeping that steady state as much as it is within my control. 

So when new challenges pop up, as they do for us all, I can take the proactive and protective route of dialling myself down in terms of how I spend my time, it means I am constantly re-calibrating and shifting and that’s a pretty nice way to be. Brain Injury land is a scary place to live some days. But equally I know that I am not alone in that, I have people who understand, who get it, who live it and so I don’t feel isolated anymore and we can each draw strength from each other on the not so good brain drain days. 

I’ve blogged throughout the last decade but I think this will be my closing one on this subject. It’s not that it is over or a complete story for me, that there aren’t still challenges to face but more that today I can embrace me as I am and so maybe that means I am finally at the closure of acceptance for all that I am and what remains possible and I have laid down some of my fear to go backwards but equally I am fully facing forward from here on out. 

To all of you who have held me up so many times, with kind words, gentle arms, all those check ins, please know I am grateful from the bottom of my heart. To those from whom I stole International Womens Day to mark a more harsh event know that it continues to get better and so distant from that awful day. I send love and healing to everyone who reads this. 

 ‘May we all be happy, healthy and free from pain and suffering’. That is my wish for myself, for my loved ones and for all. 

  It's been a helluva decade and a helluva ride. pop goes tifty.

thanks for staying the course. x

What a difference a year makes

My last anniversary post was written just after the last time I visited London before C19 was really talked about, and in the time since the entire world has found themselves living with loss and disruption on a scale none of us could ever have predicted. Its is a funny predicament I find myself in knowing that my brain pop and the the time since 2012 strangely prepared me well to adjust for a global pandemic.

This picture is from a little book of notes I jotted in the days after I left ICU and from when I have no real memory of events. I started doing it because the staff annoyingly asked me the date every day and often I didn’t know, so this was my cheat book, I’d sneak a look before they came around. This particular entry is 1 week out from IWD and my attention grapping brain event. The handwriting is pretty good compared to other entries and I think shows me trying to make some sense of it all. Making sense is something I think we have all tried to do for events over the last year. Making sense of something is always a fairly pragmatic approach to take when faced with any upheaval or change or loss. Thinking and trying to work out what you can manage within the limits of circumstances and then discarding the stuff beyond your control to remain just as it is, trying to stay positive and keep moving forward , all the time trying to mitigate lossess and accomodate it as best you can. It has served me well as a practice.

I don't like being told what to do at the best of times but equally I now know there are times in life when you have to relinquish the things which cannot to be swayed even though you would like them to play out differently. I have developed a practice of care, self and otherwise, and try where possible to pause and offer solutions rather than control and influence which was probably more my mode and territory before SAH. It is still a work in progress though, I still have way to many opinions! 

That said I am definitely more at ease with not knowing what comes next, instead I just try and pay attention with whats with me now, be that disruption, loss, pain, joy, but not be so consumed by that emotion to think I can define the outcome. Just take a 'it is what it is' view and enjoy and to live with that as best as I can. It’s been a helpful mode during all our lockdowns that’s for sure. Life marches on relentlessly doesn’t it and this last year has certainly continued to serve up its fair share of disruption and did so without let up or any allowance for a pandemic. It has been so hard for many people, our family included; I've lost friends and loved ones, we said sad farewells to two much adored animals and juggled and muddled through all working together and the absence of not seeing the people we'd like to or going the places we want to. We faced it by knowing that time moves and changes will continue to occur. We found days of sunshine , extra long walks , shared jokes , all of us knowing there is no 'going back to normal' (a phrase beloved in the media and politicians), instead there is only the promise of what comes next and what we will make of that. 

That’s my skill given by a brain bleed, I have no illusion of better, no guarantee of days, just the hope of today and tomorrow. MY brain bleed and hydrocephalus did break me on this day 9 years ago but in the time since it also built me better. It allows me to know and value the fragility of life and not cling to what we think is guaranteed, to be happy to go at the pace life allows but to always keep hoping and be curious about what can come next. I let go more. 

 This last year saw yet more healing, new adventures, greater solitude, increased mindfulness for me personally and all of which i am grateful for everyday. I also got to spend probably more time with my wonderful daughters than a usual year would have probably afforded me so I treasure that, not sure they would feel the same as I know mum is a poor friend substitute at that age. 

And without fail we move timidly into Spring,and now just as then, the sight of daffodils give  me hope as they did after my SAH  as they still offer witness to the continued growth and colour as evidence of any life opportunity. 
And so we all go on. Pandemic or no pandemic. 
Curiously exploring with a smile.

I wander'd lonely as a cloud 
That floats on high o'er vales and hills, 
When all at once I saw a crowd, 
A host of golden daffodils, 
Beside the lake, beneath the trees 
Fluttering and dancing in the breeze. 
Continuous as the stars that shine 
And twinkle on the milky way, 
They stretch'd in never-ending line 
Along the margin of a bay: Ten thousand saw I at a glance 
Tossing their heads in sprightly dance. 
The waves beside them danced, but they 
Out-did the sparkling waves in glee: -
 A poet could not but be gay 
In such a jocund company! 
I gazed - and gazed - but little thought 
What wealth the show to me had brought. 
For oft, when on my couch I lie In vacant or in pensive mood,
 They flash upon that inward eye 
Which is the bliss of solitude; 
And then my heart with pleasure fills 
And dances with the daffodils. 
“William Wordsworth”

Annie-versary post; transformation and trust

I got talking this week to an old friend about transformation. We have chatted many long hours over the years on the subject but they equally have observed and been part of my own transformation project since my brain blew up.

Often transformation comes as a planned event, on a domestic level it may be a household or building project, a garden makeover, a wardrobe clear out and splurge and transformation as a concept was not something I think I was unfamiliar with or so I thought. Change is the one constant I used to often tell myself , and my career for a large part of it before my brain pop was working with companies and people to look at what might be barriers to change and how you can engage along the way as you move to a new way of being . I was used to talking in terms of risk, of mitigation, impacts, consequences and plotting a route to take adjustments without the whole thing falling over.

And then I got do do a full user impact test of all my theories of what might actually help a person adjust to a transformation and whilst some definitely helped me ( like have a daily task list) , some swiftly proved to lip service concepts to what other people might have wanted to hear.

There is a quote I quite like;

One does not become enlightened by imagining figures of light, but by making the darkness conscious. The latter procedure, however , is disagreeable and therefore not popular. C.g.Jung.

 The truth is we don’t like to face up to the harder less palatable elements of change. Often in life we soften the messages of it, expecting that others can’t take the truth of a situation but that’s more the case when we are talking to ourselves, we try and hide from reality or the fear of what’s the truth. I was faced with a life landscape which had been transformed in an instant and pretty much none of it, none of me was recognisable to the body and mind I had grown up with. That was terrifying to be honest. What if none of it ever came back. I was entirely lost and broken. And I could have stayed there.

It was my Alice through the door but not just a fleeting moment in time, this new landscape was now something I had to now find a way to live and learn and adapt to. And do do that, to make that a possibility that took a whole load of trust of others and of myself to have permission to act. And that not something that sits easy.

I’ll try and give examples. Early on I was just hanging on, surviving, scarred, full of drugs and pain and absent from daily life. I had to trust that people I loved would look after my girls, that they would wrap them in the love they needed and also be truthful with them about their mum. And they did, not maybe my way but it was done. I couldn’t stand, walk , wash, do any tasks really unaided so had to trust those who then helped me that they wouldn’t let me fall, I had to give that trust unconditionally if I wanted all those things even knowing that sometimes I still might stumble. It was the only way through. I had to trust and most of all be curious enough to explore that this transformation, whilst sudden, whilst not on my agenda, still brought the only possibility of what was in front of me that day.

I started really small , I blogged early on about those, like enjoying hanging washing , or Going to the cinema, but as my confidence and knowledge of this changed version of myself grew, so did my keenness to just always try and see what I can do alongside the pain, the scar, the losses and hurt.

And that’s the power of any change , any transformation, Wanted or unwanted, you might realise right from the start it’s going to hurt like hell, that life as you know it can never be the same again or that realisation might come once you whilst you are in the midst, or late in the day, and yes you can rail and shout about that and that’s ok but at some point in order to really transform with it just have to accept there is no turning back of the page and to just trust that today will be one you can lift your head off the pillow , find what works and happily be you.

It is eight years today since my brain literally blew up. I knew nothing of it. I know everything of it now. I can’t remember really how I was before as this is me now and there’s no going back. I’m definitely similar in some ways to before, others things had to changes, some bits, well are gone forever. It’s not progress despite what anyone might badge it , it’s not innovation or evolution, it’s honestly adapting , evaluating, trading of what is possible today. And that’s really always been the only way to operate and transform. To know and test the limits of that new possibility and keep being open and curious and yes trusting that new ones will no doubt come and you’ll adapt to those too.

Be steady friends. Look at the possibility of today. And thanks for all the hands they still keep me up.

Unfillable holes

I try not to look too far back. I have a strong faith that what happens happens and the only next step is to do just that, try to take the next step no matter how hard, faltering painful it may be. But if I do contemplate what was the most difficult of my post SAH moments it would undoubtedly be my grief for my loss of self.

What do I mean by that? In the months and years after my SAH retired previous capacities and my shunt slowed existing performance I have had to get to know this version of myself and familiarise what is possible in this stage of my life. Better know my limits so to speak. My wrestling with that challenge revealed what I was mourning most was the opportunity of doing things how I used to do them, of being how I used to be. I missed me. And it was raw, it still can be at times and it was grief.  An emotion we all experience at times throughout our lives and none are exempt. But equally time has revealed a new familiarity of possibility and capability and attitude , so my loss whilst still with me , is becoming less painful with each passing day. Brain injury is a loss to function that you learn to live with, you don’t get better from it, but in time hopefully you do adjust and adapt and find new ways of living and maybe learn to like , even love that new way. living with grief is just the same. A permanent injury to self.

My wonderful and inspiring mum died in July and is now much missed by me and so many after so bravely and cheerily facing her own health challenges and I am plunged once more into the world of tears and loss. What Exactly do I miss? I miss Everything about her and the opportunity to do things as we used to just as I missed myself post SAH. But whilst I am at the beginning of my acceptance and adjustment to her no longer being physically around I already realise and acknowledge the possibility of life without her. I can still talk to her, draw on her past wisdoms and comforts which helps me but even that doesn’t compensate when actually all I really want is a hug from her and to hug her back. 

What makes days easier is small moments of kindness, acts of caring and noticing others and an attempt to be considerate even when you are going through hardship can make you feel better. This was never better shown to me recently by the beautiful and caring act of a stranger who saw how distressed I was as I left the hospital bed of my mum after she had left us and who just beckoned me to her, just took me in her arms and held me. She was 93, frail and I think dying herself but she offered me such kindness, maybe because in the previous days I had helped her in a tiny way with plumping pillows, straightened bed sheets and pouring fresh drink but probably because she had lived long enough to know that when it comes down to it kindness and love is the last thing you know. 

All loss brings grief. Loss of relationship , loss of promise, loss of hope but equally all these return in some measure, just different and yet love I know  from experience remains even when all feels lost and over. Love is endless. 

Grief of each kind comes and goes, like a wave crashing in and then rolling back, each time a little different in strength but even on the calmest of days the waves are still there, you know they are and one can rise up from nothing. Grief is a relentless and constant companion. 

I have a hole in my head, multiple in fact, I don’t particularly like them but they are part of who I am , I know feel and see them everyday even though they are invisble to others . They are a a scar and testament to my adjusting and carrying on but they’ll never repair or fill and now I have a mum shaped hole in my heart. Equally Unseen but to be lived with and acknowledged, saluted in fact . My mum meant so much she has left me with another hole that can never close but then I smile at her gifts to me. 

I can live with that. I’ll just have to miss and remember her well. 

“It is what it is.”

We go forward until we can go forward no more. 

Anniversary Post: Stocktaking

“Stock-taking or "inventory checking" is the physical verification of the quantities and condition of items ”

 So I’ve notched up six years since that crazy day when  ‘all change please’ was called on my brain and as is now my customary practice I use the day and date to perform a bit of a stocktake for myself and mark what’s new and changed this year. 

I can’t help it as it probably stems back to my shop days when I was known as a bit of a stock taking queen and so was asked to support most of the different departments complete their annual stocktake. On Sunday Mornings a small band of us would file into a silent store absent of any shoppers and just get on with it. Back then I loved the preparation, the count, the assessment of what was missing the investigation and then putting in a solution and I rather think I’ve adopted some of that in the six years since. Mind you I got great overtime when I used to do that which may have been some of the appeal too. 

So where am I in my neuron regeneration and new habit adaptation six years on from my SAH? I spend less time these days looking back and comparing to where I was and what I could do than I did. I think that’s probably healthy and also I’ve had six years to get used to and adapt to this version of myself and so I am wiser to my changed limits and hard edges. I still don’t get them right but hey who does.  But I have also cautiously stretched what I can attempt and take on and that offers me encouragement that it’s still the right thing to do to lean in and see how far I can go and slowly and steadily continue with regains.

Thing is brain injury does a strange thing to a girl and how I make, form and keep memories. For me it’s improved some of that recall ability for me and that has brought benefits, like being able to do a great photofit when our house got recently burgled.. After having to reteach myself ways to recall sights, objects, memories combined with paying attention it now makes me a bit of a serial pay attentioner. ( I know made up word) . I am incredibly visually attentive as a result . You won’t find me looking at my phone and walking as I would just fall over so if I do look at something I really look, and really notice  details and see what’s in my path and this newly honed skill of mine did trip up at least the accomplice sat outside my house that day.

Some things I know are out of the window probably forever, some things are a way off and that’s ok but I’m a lot further away from the wrapping papers that sat around the crazy time post bleed and James Shunt joining me and that distance feels good. Life goes on albeit to a differently paced drum. 

Life through a Facebook Tinted Lense

It's well over five years since I started writing a blog after finding myself back in the hospital needing to have James ( shunt) added to my onboard equipment. In the years which have passed since then I have learnt a whole lot of patience and taken the opportunity to observe up

close a little of how my brain really does work and what it likes and needs to run better especially after all these knocks but it's a slow old process.

So much of what we do is governed and regulated by the brain ( I'm learning about circadian rhythms at the moment which is just fascinating), and all the brain functions requires immense energy just to complete unseen tasks , regulate chemicals let alone then navigate and process the everyday and unexpected. When your brain is a little damaged already and impaired daily by the clunky operation of a shunt then the energy just doesn't flow or work as efficiently as it might otherwise or how you would like.

It is a hard but normal reaction I think to listen to ego though and want to be all you were before but like any moment in history that is gone forever , and I have had to make peace with that but At the same time I realise that the internal commentator that exist for us all is probably still placing the greatest pressure and expectations in my ongoing recovery and is mostly responsible when I haven't heeded my own traffic light signals. I need to be honest about my new hard edges and limits that exist now and not feel I have to hide them.

I have grown up in a world that typically measures success by what you do, how well you do it, how fast or competent you are at a task all set amidst a mix of noise, rushing pace and general landscapes of chaos and it can be hard not measuring up but one answer is to stop measuring against those same labels.

I would never advocate doing nothing at all or stop putting myself out there for challenge  but just like when you find yourself in new circumstances you have to find a new rythmn and pace that works for you , tailored to your limits, your effects and that will probably  keep changing for a while yet much like the rythmn of life and that's still a work in progress even this far out as it is still shifting and changing.

I think I manage now to fully embrace my new normal for me of what is possible each day. It's not always pretty but I am much better versed in my brain battery levels now and I still keep pushing to see where all the hard edges are of what is possible and they in turn keep shifting just to keep me on my toes.

This summer I decided to conduct a little experiment with myself to see what impact it has on my fatigue levels which involved taking more breaks whilst the girls are off school. Last summer , with more going on I found it very hard to get balance and my brain threw a little hissy fit so I thought it worth trying out a different approach to looking after the kids and balancing my energy and one big cog in that was I took three weeks off work. I was fortunate to have had some saved up my holiday but the big plus I have in my corner is a very considerate employer and kind colleagues who right the way through since coming back to part time work have been willing to listen and understand and most of all support me as I try to maintain a balance of what works.

The decision to take a longer break seems to have had a positive effect as when I was using more energy to do activity I was able to rest and take time out. and my usual habit of putting 'pauses' throughout the day was protected , something I know I didn't do last summer. Now summer is over my energy feels a little more balanced and whilst I still feel very fatigued post holidays it's nowhere as bad as last year , just don't get me started on the British weather though as all the barometric shifts have played it's usual havoc.

I planned a day out with the girls in London during summer, something I'm quite versed in these days, but equally I know there is a toll from doing it. The lovely smiley FB posts I shared about the visit didn't show a girl who falls through the door completely exhausted after the cognitive demand that is London and all it's noise and hustle shows its wear on my physicality. I don't post a live feed of my tired and damaged brain at the end of it's busy day as it chucks away words from me at will nor show that eating is a struggle but the kindly 'him indoors' knows the drill well by now and brings me something simple but nourishing.

The next day means doing nothing. Literally nothing. Music turned off, conversations to a minimum and I look like I have been on a ten day bender and that's definitely a photo post no one wants to see. The 'polished stone' of the outer image that I present means that people meeting me would probably have no idea of the deficits I now have or the work I'm putting into doing 'normal' activities and I'm sure with my Facebook posts portray a pretty different story to one I've shared above. That's not saying that my posts aren't true, they are truths in the moment they get taken, but I definitely cultivate what I choose to share and for me that doesn't include posting the crappy days which are part of the living with brain injury landscape.

When I choose to post a Facebook update for the most part it is about putting on the lens of my more happy moments, my triumphs and discoveries or just sharing opinions and inviting other people to see those and share in them. I don't however often use it to share the not so good. Sure I'll tell you I might be heading for a hospital check up ( early October if you're interested), but sharing a picture which shows the true and awful days that brain injury can give you even years on? no not so much.

I might message people if I need some extra help but I mostly rely on the fact that the people around me can see that I'm 'struggling today' and often they spot it faster than I do and they help me to act. Youngest daughter can even just pick up from the tone in my voice, she tells me, "mummy you're tired , your voice has changed" and that's a good prompt that I'm just about to run out of brain juice.

Everyone we meet carries hidden scars, is facing battles or anxieties they may or may not choose to share , often they carry heavy burdens and sometimes just sharing a smile in the street , a cheery hello, and yes even commenting on their post on their FB when scrolling through offers a little act of consideration and kindness as they walk their own daily path. I try to consider that when I like posts on FB that make me smile, as I share and celebrate other people's happy adventures, jokes and moments of pride, that probably just like me behind that cultivated image of happy, forward looking and hopeful posts is a truth that the road is never entirely smooth for everyone.

A Facebook lens offers a gentle filter on life for the most part but it's worth bearing in mind that things are not always as they seem in the pictures.

In this lifetime

Curiosity has served me well but it has got me into trouble throughout my life but being curious fuels the soul and I have now learnt the brain more so. It nourishes it and heals it.

My mum will attest that my curiosity at the early toddler age led to a number of incidents where without any idea of self preservation and fuelled by my desire to explore something there was often less than favourable circumstances the worst of which I think was having to have a needle extracted from a leg vein as it travelled porcupine quill style in my bloodstream. But it didn't put me off being curious.

I look back now on the events of Five years ago and my SAH with similar curiosity. I have never had the courage to ask exactly about the events that unfolded that day and no memory of them but instead turned my questions to the why of where I was in a particular moment in the days and years that have followed and then started to figure out what I could do next with that.

Exploring all the new possibilities in my reconfigured brain became my focus. Could I do this? What happened if I tried that and why did I feel that way? It helped me plot and learn about limits that now exist for me but also to explore new ways of doing old things.

I remain just as curious today but more accepting of my daily trade offs. I know now that in order to do something that requires my cognitive demand I have to allow for it and trade off that extra demand with extra rest and so I adjust accordingly and I say no a lot more and worry far less.

You see Brain injury is a strange condition to live with and I have the added condition of having James Shunt in residence and so my daily rhythm changes as frequently as the weather despite trying to bring regular routines. I attended a useful session recently with Martin Gremlich about brain injury and learnt something that has passed me by. Your brain doesn't feel any pain and so it lets you know that something is broken or not quite right by sending you different signals. I now know my signals for when I am doing too much, when I need to ask for help, when I need to stop but I wonder how many of you do too? How many of you ignore the signs of tiredness or high emotions or illhealth and dismiss it? Maybe it's time to think about the exertion upon your brain and how you are treating it?

And so in honour of five years on of intensive learning more about how to be kind to my brain and what has helped me to create a environment where it continues to heal,  learnt from watching it rebuild connections, learnt from hearing the CSF that it is bathed in shift through my shunt and just coming from my everyday experience since it all went pop here are some of my tips to help you nurture your  grey matter whether you are healing from a brain injury or just want to invest a little more in brain health.

• Learn your fatigue and stress signs and don't push through or ignore them. Think of it as traffic lights, when you are at a green it is safe to proceed but amber then slow and red , stop. Observe when you feel certain ways and take action and steps to try and solve the cause.
• Get some regularity with your sleep routines; go old school and read a book and wind down but whatever works for you do it.
• Go easy on yourself and work to your limits of that day, that moment. Try to silence that inner critic that tells you 'I should' or 'I didn't ' and just know what you 'did' do.
• Ask for help. This is a biggie and it's something we should all of use do more. Know when you are struggling and say, 'please could you' to someone. Mostly they really want to help you and you in turn will be better able to help them should they need it.
• Offer help to others. It may be something you least feel like doing but there is always a way t help others. Share your experiences and people feel less alone. Have a helping hand and tasks aren't as hard. Offer a listening ear and you'll make a difference. 
• Don't ever give up hope  or fully accept today's  limits, always be curious and seek new possibility. It may be painful to do that but that curiosity opens doors as well as shutting them so it's always worth the exploration

Five years ago I permanently injured my neurons. Some of them  are now forever out of order but with gentleness, time and  continued exploration of the new brain routes on offer I have my lifetime left to explore my possibilities.

So do you.

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!

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. 

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! 

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.

Lost and Found

So many things changed for me post my brain pop but I expect some of the deficits would have come to me as it probably does to all of us with age , like the loss of short term memory and brain fogs. Some are maybe an exaggeration of what was always there in my character , feistiness and irritability are definitely up a notch on before but my empathy and patience increased in bucket loads and my pain threshold is off the scale. So always a gift. Other skills and traits have disappeared, maybe they just waiting quietly to be rediscovered or maybe buried forever. Only time will reveal and that's the mystery of living with a hidden condition, it steals away previous capability but with fortune there is always the possibility of a new path, a new style, it just takes some getting used to. 

I don't ever wish my brain haemorrhage hadn't happened or wished it to someone else, how could I when I am one of the few so fortunate to survive something like that, 2/3 people don't live through a SAH so I just feel very lucky mostly and my new version it is what it is and now that time has passed enough water under the bridge and I feel far enough away from the horror and pain that came along with my sudden event and the hard year that followed I just feel privileged to be able to learn and observe from my own struggles as I become familiar to living with this new version brain of mine and its onboard kit. 

So as we head to the start of another year I thought I would share my lost and found list of living and adjusting to life post my SAH bleed and the subsequent surgeries for that and my shunt James which has left my brain changed forever.  

I lost brain a lot of brain cells 8/3/2012 due to the severity of bleed and through the surgeries and hydrocephalus  but I have learnt , regained and found new ways of learning since then and I now treasure and treat my brain a lot more kindly and tread a little more gently through life.  

I have lost touch with some friends since that time but have gained an understanding of what true friendship looks and feels like. I am blessed to have the people that I do and I don't ever take their friendship for granted. I just hope I can one day help them the way they have helped me .

I have lost a lot of worry and fear, it's strange how an event that forces you to know your own mortality can do that but I have found I am much more at ease and accepting of situations and really don't worry about much.

I lost a little of my ambition. Well I think it's safe to say I have realigned it to the possibility of achieving whatever my current state allows but in doing that I have found I enjoy just doing what I do, for now anyway.

I have lost respect for people that just moan and witch about everything and everyone without doing something to change but have found courage to walk away and distance myself from that. You don't ever need that stress in your life and it appears my brain hates the effect of it therefore I do not allow it in mine.

I have lost a lot of social fun times and this has been hard to adjust to as you see I liked a bit of scene, a party, a loud concert but I have found I adore a 121 conversation just as much these days , it requires less energy and booze than dancing on a table and I don't  care too much about the subject on offer as long as it's one that interests, intrigues or inspires and is with good company.

I have lost living for tomorrow or in the past. I have found I can only do what I do and live in today and with a bit of luck and a fair wind I will have another one tomorrow and if it doesn't well I can say,'well today was a good sort of day'

I have lost the ability to sleep completely flat due to the effect of my shunt at night so now sleep Barbara Cartland style propped up on cushions but without the pink nighties and feather boas but have found that you really can get used to and adjust to anything if you keep a positive outlook. I mean every time I forget and tip my head to far or back I get to hear my gravitational valve work and move, how cool is that, I get to hear the internal workings of the rubies at work with the hamsters. 

I have lost count of the pills, procedures, scans and doctors I have seen  but I have found that progress is best measured by looking at your lowest point and then where you are today, nothing else really matters.

I have found it always good to try help someone else no matter what your struggle is and so I have the lost the inhibition to offer help if I think it's needed. 

I have lost the feeling that I have to go it alone for something to matter or be worth something and learnt it's actually better to #lean in , you can take the corners better and it makes it easier to hug other people if you do. 

In closing my blog musings for this year I thought I'd share an Apache blessing with you which I rather like, not sure of the author but if anyone knows please let me know so I can credit it. Happy, peaceful and healthy 2016 to you all. 

"May the winds from the sky world blow direction upon your own course,

May the sun provide warmth and healing,
May the moon light your way when you are lost,
May the Earth be steady under your feet so you walk in a good way,
May all respect you in your path,
May you respect all in their's,
At the end of this day may we gather together,
To celebrate a day well done."

A missed deadline

One of my champion supporters is leaving me, the UK and is off to start an adventure of grand proportions and I confess to mixed emotions of being thrilled and excited for her combined with the more selfish reaction of knowing I will miss her company greatly but also miss the comfort and reassurance she always offers me when days aren't so good.

Early on when I was locked in my hospital bed she Was one of my many frequent visitors but who often used to just stick her head round on her way home from work which was just round the corner from NHNN and the cheery smile and kit Kats she used to bring were a beacon of sunshine plus she has a unrivalled access to good reading material which comes in very handy when you spend as much time in bed as I did. She was my escort into london when I started going back in for work, got me Audio books to practise my cognitive listening skills and is all round good egg but it's very cool that she's going to try something different, I'm even a little jealous. So we have established I am going to miss her but no doubt with the world of technology we now live that Skype, face time and FB means that we will stay in touch better then old.

Over the years I have become familiar with this parting from a lot of my Dear friends, It seem I make friends with a lot of people who subsequently go to live overseas and it's always bittersweet to say adieu... Australia. Ibiza. Switzerland. France. USA. Dubai. All good places to visit but not quite as easy to get or give a loved one a quick hug. But to all those far flung friends I celebrate your sense of adventure and life is so much sweeter knowing we have great places marked to visit with lovely people.

To say goodbye and farewell before she flies a party was held and whilst there the husband of one friend noted that I hadn't blogged recently, and why not? Well it was very gratifying to hear that he had even read my blog but he then set me a challenge to update it. Which I subsequently missed. Just one more missed deadline. Now I could have sat down and written something at the time but to be fair I didn't have much new to tell or share. My reality is that I have learnt and accepted that none of the parts of my brain that took the hit when it popped will ever heal and I think I have pretty much come to terms with that now. I have crafted and grafted to get a new level of balance and ability that works for me and family life even if that pretty means zero social life and bed by 9.30 most nights. I get checked out regularly by my neuro team who congratulate me on how far we have travelled but like everyone else in their life travels, I can only do what I can do and for me now that seems to mean staying in a pretty steady but slow phase of recovery. Its just A question of waiting to watch and see what it reveals this time. However that state makes for pretty boring blog updates so far better to speculate on how everyone else is doing and revel in the exciting adventures they are having. My time will come; albeit probably wearing sunglasses , earplugs and cool hat!!

Often a lull or even a backward step has been followed by something else coming on line. I speculate that the brain whilst laying down new pathways sets aside and conserves some extra energy to deliver it, a little like overnight lane closure that go on for months for roadworks improvement. So we shall see if something new is revealed. Maybe a super power. That would be nice. adequate Negotiation Skills to deal with a teenager would also be nice.

So Mr Cerrone I apologise for my missed deadline but I am still curious to know what the Gardener saw. Mrs Rees please have fun and enjoy the desert. And to all those who settle down with me and read this over a coffee, thanks for continuing to come along as I learn to live with this rewiring. It's an evolution every day but doing it in your company is so much easier than battling alone.

3rd popiversary reflection

8th March marks International Women's Day each year and gives celebration and recognition to the advances made in women's equality but also seeks to recognise and highlight the struggles faced by women across the world every day but 8 March for me is also the anniversary of a day of which I have no memory but marks a moment in my life when I had very good fortune to survive an SAH but rewired the person I once was. My feelings and memories of the experiences that followed for me after that IWD  resurface with me every anniversary whether I wish them to or not as I and others recall and note the date so thought worth a blog moment.

That day I was happily pottering through life with no inkling of what was going to unfold next, it was just a regular day at work when everything literally went pop. Good friends and prompt amazing medical care and great fortune gave me a good outcome that day.   None of us can ever predict what's around the corner, but only hope we have the strength and good luck to tackle what might come our way and every day since 8-3-2012  has been a tallychart of tracking my progress and what I am capable of doing, on that day, at that hour, in that minute. It would be wrong of me to compare my struggle in magnitude to any of those women in war torn countries or living in crisis but my experience in the days that have passed since has increased my empathy and understanding for anyone facing challenges, struggles, terror which they seek to overcome.

There is a privilege for me in being able to reflect over the three years that have passed since my life changing pop and see my progress and improvement in health and ability. Time has passed far enough now that much of the horror and epic personal battles are faded and less powerful in their ability to scare me. Yes I can still be gripped with a new pain delivered by my healing grey matter and the realisation of the extent of changes wrought when that invisible aneurysm hidden in my brain unexpectedly and dramatically burst, is still developing. I find out new limits but often this  opens new doors.  I am reminded weekly, if not daily, of different barriers to completing things the way I used to do but will always seek alternative solutions. The beauty in all of this is that I get to see what I can do now and really appreciate progress but equally learn tolerance to accept what is different from my previous version of me and where my capacities have changed.  Given my starting point and prognosis that fateful day I can only be grateful for what I am able to do since and now .  I like learning and this healing brain has always gives me the chance to learn constantly, I relearnt how to do so many things, I learn how to live with pain, to cope with brain fatigue and I learn to say no and ask for help and it's those last two that are two of the hardest to keep practicing and make a habit.

Thing is that people really do seem to like to be asked to lend a hand, they really do and most, not all, just want to try and help you to progress past your struggle. Not do it all for you, or solve it, fix it, but just raise you up to assist you in moving forward and that for me is what IWD is really about ,it's a positive movement of progress and assistance which is not always without struggle so it's seems fitting my popiversary shares the date. It's about really seeing and noticing people around you who might need a hand and not being frightened to offer some of your help. It is also about being kind to yourself and telling yourself 'well done' at the hardest of times of your life because all of us face struggles and challenges but our biggest champion and supporter in continuing to have energy to battle them is yourself. So if that little voice in your head today brings doubt to your table then why not replace the internal commentary with the kind of supportive and kind advice that you would offer a loved one in a similar situation and give that counsel to yourself. I try to do that each day, I don't want the doubt and fear to take hold I just want encouragement that tomorrow can be better so that it what I have told myself each night ever since I came round in my hospital bed in the days after my IWD,  and you know what, it often it is. As Churchill once said, 'never,never,never, never give up'.