Tuesday, 26 August 2014
I am one in six
I notched up another year older this month and was delighted that I received amongst my birthday gifts a dedication on a radio show with the song 'one in a million' . It was gifted for me by the ageless Mr P who hosts the show and whom I forged a friendship with over our shared penchant for Paisley shirts and music many moons ago. As well provoking an emotional response from me and raising the inevitable questions from daughters? "Was he your boyfriend?" (here in print just for the record girls" no he wasn't and girls and boys can be friends"), it made me realise that's whilst I am so lucky in the odds of having survived my 'brain happening' of a subarachnoid haemorrhage the legacy of it and resulting hydrocephalus means I am now included in the much more common number of the one in six people in the UK who live with their neurological condition rather than being one in a million. Before I became part of this special club I didn't have much awareness of brain conditions and injuries and my knowledge compared to say my level of understanding about other scary conditions like cancer was pretty poor but I have come to realise how common it is that people live with a neurological condition, one in six of us in fact. Traumatic injury, Alzheimer's, MS to name but three in fact I bet each of you reading this know at least one dear and loved one who lives with a silent brain friend that shadows and clouds their personality. As I gradually familiarise myself with this new version of me I have reached a certain level of acceptance that this is my new normal for right now but I tread cautiously everyday as living with a brain condition means you are always on shaky ground, it's a bit like the hidden fault lines in our earth, that's what we are left with, invisible scars and damage and you can feel fine one minute and then an unseen tremor will appear out of the blue and unsettle and knock you back off balance , literally some days I land on my arse. My 'San Francisco' head it seems can still accommodate the fun , flamboyant and fabulous but is just a little unpredictable in how or when it delivers.
To ease my acceptance of the post pop brain I found that acquiring knowledge of what might help me and learning about coping with the effects of brain injury was just as important part of my recovery as the medical and physical rehabilition and invaluable to help me progress and find new ways of doing things. It's been so beneficial to share ideas and experiences and I have gained support to date from fabulous organisations like Headway, Shine and all my doctors and nurses and a rather super Occupational therapist. About six months in when I could bear short moments of screen time I found a forum for SAH survivors and it has offered a safe and non-judgmental place where I can connect with people who have bleeds like mine and who understand the choices I make each day and to reassure me on the times when the creeping and sensations that my brain can still produce get a little too fearsome. I think the key when something of neurological nature enters your life is to ask for help as much as you can which is blooming hard for an egotistical independent lady like myself but it does make a massive difference to swallow that pride as there is help to be had out there and if you can't do the asking then the people around you should speak up on your behalf. Brain injury affects confidence a huge amount so if you know someone who lives with a condition then a little praise and encouragement goes a long way I know that firsthand.
Along this line of thought I was pleased to see the recent profile ALS has brought to it's cause. The ice bucket challenge is sweeping the Facebook channels at the moment filled with people enjoying showing their ever innovative methods of being drenched with water but I hope those who have watered themselves have stopped for a moment and really thought about what the disease does and why is freezing water on the head is so appropriate? I have had many head freezes without pouring over a bucket of water but Motor neurone disease is a particularly despicable disease that slowly and surely shuts down neural pathways one by one , freezing them if you like, but in common with all brain conditions it requires more research and innovation if cures and life enhancing treatments are to be found and that takes hard cash and I hope all of the drenched donate to a neurological charity of their choice as well as posting their video. I have always said that I was very fortunate the day my head went pop, yes I know that's a strange thing to say, but within hours of my brain bleed I was in the hands of some of the worlds best surgeons and my recovery I know owes dividends to them and it's why I will continue to support The National Brain Appeal as this charity supports the development of innovation and treatments across all neurological conditions that in turn brings hope of improved outcomes for more of the '1 in 6' in the future. So I don't think I'll be taking the ice bucket challenge myself for fear my head would throw a wobbly but I will continue to raise money whenever I can to support neurological charities and applaud anyone who does the same and if chucking a bucket of water over your head publicly means fewer people get 'frozen' in time and more can have renewed hope and contented lives living alongside their condition then how brilliant is that?