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”