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.