My mum - Sabine - passed away from Motor Neurone Disease almost exactly 9 months ago. These are her hands, holding a sand dollar that we found on the beach in Oregon, as we marvelled at the neurone-like patterns.
In the time since her death I have been incubating how to respond to this event - the loss of a superbly creative, open-minded, curious and inspiring person...and a lynch pin of my life. All I knew is that I wanted to mark her death - I couldn't keep going exactly as before - and do something that would be my own tribute to her.
Ideas started coming to me when I was on a short retreat over the New Year. The first thing was clear - stop working so hard! I put the wheels in motion to take a year's break from my job. Secondly - investigate! I started meeting people involved with MND research and the organisations that support sufferers and carers. Thirdly - open up my thinking channels! I am lucky in not only having experienced my mum's incredibly accepting and curious approach to her illness, but also in having studied MND in the early stages of my neuroscience PhD. There is so much information about MND emerging now, but I for one find it a bit overwhelming. And at the same time I can't help but feel that doctors and scientists only have part of the story. Maybe a bit of time and a different perspective could help reveal new ways of thinking about this illness, integrating the views and ideas of many different people with their different experiences of bodies and minds, health and illness.
So my hope is that there is something interesting for me to explore at the interface of the scientific and the personal - how we know and understand this illness medically and scientifically, but also how we know it personally, in our bones. I also hope you'd like to join in on this journey, contributing thoughts, questions, ideas and provocations. If we find it's an interesting conversation then maybe we can write something together!
The sorts of questions I am interested in asking include: Why do healthy people get MND? Where does the system go wrong and when? Is it one illness or many? Are there particular types of people that get MND? How might we understand those 'types', aside from a Western medical perspective? Can we imagine MND as something other than an illness? Could it be a consequence of a system that exists 'on the edge'? How do different people cope and respond to it? Can it ever be a positive thing? And how can we help people with MND at the end of their lives? How can loved ones and professionals bring more understanding into their interactions with people with MND? How can we live with it as part of our nature, maybe as part of our neuronal nature?
I hope and expect that these questions will shift and change over the coming months. I'll try to keep blogging as they do. And I hope they might spill into forms other than writing, like art, photography, and poetry. My mum set the bar high by writing beautiful poetry towards the end of her life. If I can, I'd like to find a way to share some of that too.
To start my investigations I'll be reading, interviewing, talking to people, and thinking. As well as keeping myself sane and healthy through doing things I love! I'd relish your input on what I should be reading (current love is Atul Gawande), who I should talk to, and other ways I might approach the project. Please leave your comments on the post.
Thanks for reading!
