Baring my soul in public
I’m a very private person yet happily write all sorts of personal things here in my blog. When I was asked to write a diary about caring for my brother, it didn’t seem to be any different and actually I was really delighted to think of reaching many, (many!) more people. Nevertheless, now this piece has been published in the online “slow news” journal Tortoise with 7,000 + subscribers*, I feel quite strange about it all.
Nick and I both wanted to do it because we both think the world needs to be more inclusive and more forgiving. Huntington’s is a bastard, no two ways about it, but we want it to be a condition people know about and can recognise, not something hidden and shameful.
So many families live under that shadow; I can understand why you might not want people to know that you have an incurable hereditary illness in the family but in the end, if it’s in your gene pool it will get you and the silence helps no-one.
And carers – we’re so invisible to so much of the world that even a popular "Discounts for Carers" scheme only recognises paid care workers, not unpaid carers. How nuts is that?
So I wrote this piece for all carers and for anyone living with a life limiting condition that takes them out of plain sight of the world.
It’s really not intended to be grim reading – there’s frustration and anger and heartbreak there, but humour too I hope, powered by the belief in a better society that looks after its weak and helpless, and strength in solidarity, and always, always love.
*It's a fantastic platform for informed long and short reads - the news behind the news. Proud to be associated with such intelligent and interesting journalism.