I am not sure that I have any more right to write about my experience than anyone else but almost immediately since surviving my Sub Arachnoid Haemorrhage and it's subsequent life changing effects came a need to write about how I have felt and the experience of it all. I guess it has turned into a cheap form of therapy for me. Even in the darkest of early days, once I came round in ICU with tubes running everywhere and morphine levels high I began jotting into a notebook that a friend had left by my bedside .
I remember my nurses asking me on one occasion what I was writing about; I think they found it slightly nutty that here was this woman who had a head half shaved, full of staples and pipes , unable to stand unaided but was often to be found scribbling furiously into a notebook. It amused and bemused them at the same time. Perhaps there was also a nervousness that I was cataloguing the less salubrious goings on in a critical care ward (I did get a few of those too!) . All I know is that I poured my thoughts, my fears and sometimes my amazing hallucinations into that little notebook. It was a companion, someone I could talk to no matter the time of day or night. I filled that notebook entirely in those 6 odd weeks that I spent locked in ward in a bed in London. To be honest I have only looked at what I wrote a few times as I still find it a bit painful to read. Interestingly whilst I may have thought I could write at the time my handwriting and spelling tells a different story. Some of it is completely illegible, other bits just drop off the page and I often stopped halfway through a thought. A page turner it most definitely isn’t.
I kept up writing my diary once back at home. I captured my daily achievements, my tiny successes, and the painful progress. I wrote down my pains and aches like I was keeping a weather chart. I listed goals for each day and tried to tick them off. Sometimes it was just ‘get up’ and that is all I achieved. It’s really strange to look back on that time and have a reminder of it. I wrote how happy I was the first time I was given a full head hair wash but also the fear that just doing that could dislodge something in my head. I wrote of my embarrassment that I had to be helped to wash by family members as I couldn’t manage to do it by myself. I recorded the tears that fell because I couldn’t manage to even brush my daughter’s hair ready for school.
Roll on a few months and despite thinking I was doing well I found myself back again in the hospital. That was a shock and a half and to be honest I was feeling frankly miserable and bruised and battered and trying to weather the after effects of a second brain surgery. That’s when I started this blog, which looking back was probably a pretty crazy thing to do at the time but I have gained a lot of comfort from writing it. It seemed somehow a more civilised way of writing my thoughts down and also it gave me a way to practice doing things which to that point I hadn’t been able to do. Before I had James shunt put in to relieve the brain pressure from the gerbil wee I couldn’t watch TV, look at a screen for any length of time, but after the operation, whilst it took its time to get to a steady setting, it was instantly easier to look at things online.
The other positive side of all my online journaling is I can tell people around me how I am really feeling without having to look them in the eye and say it, something I surely couldn’t do without tears on some days. I suppose I am still grieving for the bits of me that I lost when my brain bled and whilst it does get better, much much better, it can never be the same as it was, what I knew and was familiar with. Hey, but any change is always hard right?
My closest and dearest family and friends see me every day, they see the progress I am still making, they know the battles I still face and struggle with, they reassure my fears and they realise and support me as my recovery is years in the making and not a matter of months. That’s a harder message to tell and this blog helps me to be honest about that reality to people I see less often and is my easiest way of being the honest upfront person I think I always was and still am and if along the way a few complete strangers read it and enjoy it too, well then that’s all good stuff too.