Living and Dying with MND

New buds, old berries, wet bark, an angel's feather, and always a robin - intimations of spring in the park last week.

This morning I sit in a steamed up cafe with the rain drizzling outside, talking with the lovely woman from the MND society who was such an amazing and generous supporter to us in the last months of Robin's life. Listening to her and some of her story - her husband died of MND 26 years ago - I realise what a truly awful disease it is. I also realise that even though many of the symptoms are the same it affects each person differently. It is your personality and character which somehow determine how you experience a disease....either you have the disease or the disease has you. 

Robin's way of having MND and dementia was totally unique to him. He was always more important than the diseases.....although his personality did change through the dementia - he became less cerebral and more emotional -  he was still always recognisable as him. His Robin-ness didn't disappear. For which I'm so grateful.

 Even though I often lost sight of that in all the stress of trying to "manage" the disease, and him, I still feel so lucky. It could have been a million times worse. Like it is for some. Like it was for our MND supporter. Who has survived. More than survival - she has found a way to make a huge difference to other people out of her experience of caring for her husband through his own journey of living and dying with MND.

I don't know yet what all the gifts are out of mine and Robin's journey through the last 6 years living and dying with MND but I know they will get clear. Otherwise all that hell would have been for nothing.

Supper tonight - a Thai fish curry for my sister and brother in law after they treated me to a trip to the cinema. It  made up for the disappointment of the film - La La Land. The critics recommended it so highly.

 That's the trouble really  - you have to make up your own mind but it's hard not to be influenced by 'experts'. You are your own best expert about what you like and don't like....something I'm beginning to learn now.

That, and it's never too late to trust your own instincts.