Note to Self


I find writing cathartic, yet last wrote at the shift in the season's from Summer to Autumn, in October last year.

For many reasons; I haven't written since.

I couldn't find the right words, unable to articulate light and joy without the dark. Lost all my confidence. Unsure of myself, not wanting to sound woeful, I didn't say anything at all.  I touched on it briefly in my last post, about the grief creeping in yet brushed it off.  I now realise that I should have let it be welcome, offered it a cup of tea and a biscuit, as it wasn't going anywhere.

A lot has happened.  Most importantly, we moved out.  A massive step of independence, which is a huge milestone with the world of brain injury.  Incredibly exciting!  Yet it brought up a lot of shifts and further challenges.  Many feelings and emotions which caught me by surprise, so I tried to put a lid on them.

I taped that lid down tight, even though I know full well, that one has to feel it all to heal it; I went into survival mode.  Not wanting to feel, show signs of weakness or that I was struggling.  I didn't let on.

Who knew that opening boxes that I had packed up alone, three years ago, in a swift panic, would take me straight back to a world and life I had left behind.  As much as I had thought I had grieved for my old life, unpacking the boxes of our belongings made me realise this was much deeper than I had ever appreciated.

Let me take you back; end of October 2014.  Rob had come out of his coma and been admitted to a rehab hospital.  Still in Sydney, living out of a bag that was only meant for a 10 day holiday, over month later I was now faced with a mission home, the mission to end all missions.  I had to go back,  pack up our home, our life, speak to employers and essentially put a full stop on our life as we knew it.  I rattle this off like it's a shopping list, but let's take that all in; it's huge.  I went swiftly and in four days, managed to sort most things, pack up and arrange our belongings to be shipped back the UK.  The symbolic notion in this; all paperwork was completed with the address TBC. 

So much change, so much heartache. All which I taped up in a box and left to be shipped and held in storage.  It was eventually delivered to Rob's parents house, but essentially our life stayed in boxes whilst we dealt with acute rehab, going from hour by hour to day by day, dealing with all the immense changes that life shattering brain injury brings.

Until last November.

An incredible feat, to move out and do our utmost to get on with life as a couple.  And I was on a high, what an achievement!  Then the unpacking came.  Bed linen that somehow, after all this time retained the smell of our old home.  Who knew we had a smell.   Slightly sweet, musky, with a hint of cardboard box.  Kitchen utensils, trinkets, all a stark reminder of what once was.  Crockery, broken and shattered into pieces.  Ridiculous metaphors, I was picking fractured shards of ourselves out of boxes.  Many boxes we have simply left, unable to deal with just yet.

It made me feel uneasy; joy and sorrow all at the same time; including the secret that we were planning to elope to be married within all this.  This I knew to be true, my love for Rob and our future together kept me moving forward; hold on to the adventure, the thoughts of new life and fresh starts, look forward to what we have ahead of us.

Eloping was simply magical!  Just the perfect end to a turbulent few years and line of positivity in the sand of recovery.  Not that recovery was not still on our agenda, but it was time to shift; get on with living instead of holding on, simply existing through the days.  Crack on with life, as who knows how long we have left. 

The love and adrenaline from our wedding was immense and brought us so much joy.  For a few weeks I was able to forget about the boxes, shake off the grief and look ahead.  Yet the crash came sharply with a virus and a seizure, resulting in blue lights to hospital during the festive period.  A stark reminder of the thin ice of our new world.  

2018 started quietly, we braced ourselves; tentative and unsure.  Yet we had an exhibition to prep and this kept me occupied.  Rob had charged me with the story he wanted to tell and I set about curating the show.  Story telling, in the right tone, sharing the trauma but also sharing the positivity in all this.

The Line exhibition was a great success and huge boost to Rob.  Yet it took it's toll on me; it was like unpacking those physical boxes, only this time, the memories and visceral imagery of the past few years too.  Facing it all head on, for the first time. 

I cried and cried; feeling guilt and shame, loss and overwhelmed with grief, yet within that joy, relief and pride, a mixed bag, but essentially being incredibly hard on myself.  Doing my utmost to carry on, keep moving, when I felt like I was swimming in treacle.  The ying and the yang; the beauty of love and hope, with the dark side is what life is about, but mine was out of balance.

I tipped over last week.  I had been powering through, not listening or adhering to the signs and fell hard.  I found that I hadn't been kind to myself at all.  And if I was unable to be kind to myself, then how did I expect others to respect me and be kind in return?  It's all too easy for us to self flagellate and persevere, when sometimes, a sit down and a cuddle is in order.

I recognise now, how deeply this has impacted me.  No matter how hard I try, life will never be the same again.  That grief will always be part of me.  And it's ok to talk about it.  And actually, I am doing a bloody difficult job; caring for the man I love, whilst trying to get the wheels back on life and nurturing his recovery.  Something I don’t talk about enough, I hide it all.  Brain injury is insane, frustrating, overwhelming yet beautiful.  Caring for Rob through this is the most rewarding, challenging thing I have ever done.  And it’s going to take time.  A lifetime.

And within all this, I have tasked myself with launching this platform.  Mainly as an outlet to create beautiful things and share our story, our journey.  Then I stopped sharing and creating due to self consciously fearing what the world would think of it all.  But is raw.  It’s real and it’s true.  All worthy of sharing.  So here goes. 

As spring is teasing us, the season's shift once more. The snowdrops have started to blossom; those little buds bloom in the fiercest and starkest of times, against the odd's.  

It’s time I did too.