Still Standing, Brain Surgery & Beyond.

September 5, 2018

I’m still here.

 

We are still OK. Things are a lot different than they were before.

 

Our move to Brighton after 13 years of living in London was we thought the main deal for 2018. Only everything 7 months on from that move is all ‘pre’ and ‘after’. Kind of like having kids but totally not like having kids.

 

There is no celebration when something rubbish happens. It isn’t something you shout out about or at least we didn’t. Celebration comes later, albeit in a more cautious way with a few less wines. We hunkered down.  Our unit drew in, small and impenetrable because it was rubbish and people were worried.  We didn’t want to talk and we didn’t want to share, everything else faded and it was just us.  And that part was really beautiful and still is and I’m determined to keep that aspect hence just a little give now when things are feeling better than they were. 

 

There has been a lot of steadying, both physically for me as I had literally lost balance and needed other people’s hands, but also the steadying that comes from quietness, enforced and careful.  We were suddenly a lot more still, waiting and adjusting. Pre and After. Pre-falling out of bed in the early hours and not being able to stop the room from moving.

Pre crawling down the stairs to the bathroom thinking it was food poisoning. Pre making it back to bed and deciding to sleep it off rather than call anyone.  Pre the day before in London visiting our daughter who was recovering in hospital from an equally random medical adventure, happy to see her well and being grateful for life and family as we walked the corridors looking for an openable window to breathe some fresh air in. We were laughing, she was well and so was I. We needed no lessons.

 

But then comes 'after'.  When it hasn’t gone away and you know something isn’t right.  Nausea and discomfort.  An unsteady walk.  Head pain.  Hand tremors.  Something had changed inside my body and we didn’t know what. 

 

Vertigo, initially the diagnosis, but several weeks in something more.  An urgent referral to the stroke clinic by my GP who’s instinct made short a process that could have been unduly long. But not a stroke as the specialist confirmed, sitting in his side room with a nurse, an image of my head on his computer. But something that shouldn’t be there nonetheless. He said ‘unusual’ and ‘not right’ and told me what it wasn’t. Not a stroke and not a cancer. But still a white mass where a white mass shouldn’t be. Like one of those ink blot test images. A Rorschach.  On my little brain.  The brain that sits under the big brain we all know and love. The Cerebellum.  Responsible for movements and coordination and the like, for things like preventing you from walking around like you have just downed a bottle of gin if you haven’t.  It’s a tiny portion of your brain containing quite a bit of neurons as it turns out. 

 

This was back in February 2018. 

 

I can see on Floppy Toast’s social media pages all of the ‘pre’. It’s like a time capsule. It’s a bit weird to see life halted inside of squares.  Especially when life hasn’t actually halted, in fact there is an awful lot of living involved in being not quite well. 

 

I’m still a business owner, still a creative.  It’s still me. But not. To view our experience as a family this year as the person who has unintentionally altered it is hard.  Allowing the business to find it’s own balance when caught up in a mindset of hustle and being a step ahead has been challenging but in a lot of ways a relief, strangely.  But both things have found their own place amongst the noise. 

 

Silence and change.  An out of the blue.  A pause. 

 

What came ‘after’ was hospitals, brain surgery, one surgery becoming 3 and possibly still a fourth.  Physios and Occupational Therapists, a Neurosurgeon and Nurses. It goes without saying how amazing they all are. Scars and staples, all tucked away behind my hairline allowing people to see what I let them see.  Some control in a year of none.  A husband who has shadowed me the entire year.  He has written some good songs. Normally done together, this year not so much.  Life is it's own muse at times.  A daughter who brushed my hair when I could not and didn’t want to.  I have learnt although I thought I knew, that being well is all there is. And that recovery isn’t always upwards, it can be tricky, there are adjustments needed, little steps.  From everyone. That it is ok to be thinking of things in a different way. 

 

That there are people out there doing amazing things, important things.  Way more that I could ever do no matter how much I tried. 

 

This year has given me lots of questions, I don’t feel wiser. I haven’t had an epiphany. I don’t know the lotto numbers.  We still argue about who takes the recycling out.  I feel more vulnerable and also more balanced.  More grateful than ever before.  I feel both solid and uncertain. And unbelievably lucky.  Life hasn’t stopped.  We are continuing. 

 

Sometimes I think I can step back in as if nothing happened, and maybe that is what I will do, but I'm resistant to that for some reason I've yet to work out. 

 

So for now it is just this.

 

This is what I know. Life is big. We have had a wonderfully amazing crazy beautiful year so for those of you wondering, yes I’m absent and that’s ok.  But I am still here and all is extremely well.  

 

x.

Photo Image 1:  These guys were the first thing I would see after waking from every surgery.  Excitement, fear, love and relief.  How lucky can one girl get.  xx

 

Photo Image 2& 3:  Initial tumour removal and a later shunt insertion following acquired Hydrocephalus.  Sometimes life isn't pretty.  And sometimes you can't wash your hair.

 

 

 

 

 

 

 

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