Monday, 12 August 2013

Reflections on meeting scientists researching Alzheimer's Disease at Kings College London, 10th July 2013

I wrote some reflections for Freedom Studios and Entelechy Arts after we returned from our week of R+D for 'The Home' (the play I am currently working on) in London (8th - 12th July)... During that time we had a chance to meet Professor Clive Ballard and his team who are working on Alzheimer's Disease. Here's what I wrote... 

The chance to meet Professor Ballard and some of his team members was magic.  It was a chance to enter an entirely different world and just for a moment be part of it, see how it works, notice how language works differently. How words are used differently. How life is thought about differently. That for a writer I think is an amazing opportunity. As was having the science and understanding around Alzheimer’s Disease explained.  As was the opportunity to ask a million questions and not to have to worry about whether they were stupid questions or not. The whole team was incredibly open and I’m thankful for how generous they were, giving us their time, sharing their knowledge and letting us see into their world.  

I was probably however most grateful for the things that happened that I wasn’t expecting. Because I suppose I was expecting the scientist’s world and my world to be different. But underneath all of that, the thing that surprised me was the similarities in our experience. Walking through the reception doors and seeing the plaque commemorating that Keats once studied at the University, reminded me that actually our worlds are not so very separate. There are unexpected resonances. Of course there is a level of particularity that is distinct and endlessly intriguing between ‘art’ and ‘science’.  But the meeting with Professor Ballard and his team just made me think - We are all attempting to understand what life is, what it is doing to us and what we are going to do about it… Artists take ourselves down one route and Scientists take another, but we are all on the same journey.  So, yes, on all these different levels the meeting was great.

Three Things That Have Really Stayed With Me…

Where does the person reside?
I am not a religious person but neither am I strictly an atheist. I have a kind of grey unclear muzzy set of half beliefs. Personal heresies no doubt, that I have constructed. A vague sense that while religion perpetrates much that is despicable in the world, it also holds up much that is beautiful. A belief that God does not exist but that the idea of God might be a reflection of the best parts of what human’s might be. I contradict myself all the time. I absolutely reject the concept that God could have created our world and yet carry a gut feeling that family members and friends who have died are somehow ‘still with me’. I often feel their presence. So clearly, I have a confused botch of compartmentalised thinking and feeling that I have found a way to make sense of… But the meeting with Prof B shook this up quite a lot.  As Prof B started showing us slides of brains affected by AD there was this thought in my head that was visceral and unnerving. I suppose I had to confront some of my contradictions. I just thought, if my person and personality is absolutely and totally contained within the tissue of the brain then that really is that. And an AD brain pretty much shows us that doesn’t it?  That we really are just the sum of the nerve endings and chemicals in our brain.  When Prof B said that he understands why it is comforting but it’s inaccurate to portray people with AD as if they are simply cocooned behind a symptom of confusions and that it is possible sometimes for the curtain of confusion to lift and for that person to be ‘revealed ‘again if only briefly (as so many drama’s dealing with AD do)– that hit me for six. Because I realised that that is how I have thought about the disease. In my mind I have imagined that the person with AD is still there, it’s just that the disease erases their ability to communicate their person hood anymore… So in that room with Prof B, suddenly I was confronted with the actuality that the disease is not a shroud on personality but a relentless attack on the essence of a sufferer’s person hood. When you see a brain utterly ravaged and laid bare by AD there seems little else to conclude. I found that chilling. But galvanising somehow. It made me feel that the work they are doing to try and understand AD is even more urgent somehow.  But on a personal level, it also made me think, all of that stuff I experience as ‘extra rational’ is just me.  All that contradiction.  All of that stuff that I separate out as intellect, soul and heart – its all the same.  It’s just my brain, working on a million different levels at the same time. It’s just my brain carrying around all of these different experiences of myself and the world and what I think and how I respond simultaneously. WOW BRAIN! That is incredible. I’m doing all of this stuff to myself. I’m creating that inexplicable, occasional presence of loved ones that I get. I’m doing that to myself! WOW WOW WOW…  And strangely, I’m OK with that. I don’t mind that it’s not real. I’m actually just pretty impressed with my brain. With all of our brains. What incredible creatures we are!  I wonder whether we will ever definitively know ‘exactly’ where the personality/soul/heart (or whatever word best describe the essence of us) actually resides? I wonder what we will gain and what we might lose when we get that understanding? 

The necessity of science to discover meaning by delineation – how storytelling does the same.
Listening to the scientists talk, I was intrigued by the way they create methods to hone in on the material they wish to understand.  The hypothesis and then the path that is created to develop an experiment that rules out unnecessary or contaminating /confusing data. Everything is done so that a particular question can be put under a spotlight and a truth can be seen. This has made me think about what happens when one writes a story. How you start off with a huge lump of material, but then to try and find a universal truth, in the end you strive to hone in on the particulars of a situation. You create a hypothesis. You say to yourself ‘what would happen to this character if they were put in this situation?’ And then you make what you have imagined happen to the character and the story is basically what you discover about that character. You basically do an experiment on your characters to find a story. And I really like how there is that mirroring between our two worlds.  I do however wonder though how far that kind of  ‘isolated, finding meaning in the particular’ type thinking can take humanity? I have been thinking lately about how the next step in human evolution (if we can get there) will be to find ways to create a rigorous yet holistic way of looking at the world. We are drawn to using one detail at a time to reflect / understand the world, but I wonder if that kind of thinking can only takes us so far? I wonder if there is a whole level of development that comes from finding ways to understand many things in a multiplicity of contexts?  The CIA talk about ‘blow back’, the idea that for every action that American foreign policy makers take, to right a situation, there will always be an event that occurs in direct response to the action that was not expected and which undermines the aims of the initial action. I wonder how much science and art is held back by ‘blow back’ and what would come from being able to see truths in their bigger picture, more clearly?

The increments of change / building a body of knowledge
When we were talking to the PhD students about their work, it really struck me how they very much see their work in context with the body of knowledge that other scientists have, are presently working on and will perhaps work on in the future. It was clear that they feel that they are contributing a tiny part of knowledge to a new understanding, which others will then be able to take on and develop. What that development is not their concern – they are immersed in their own tiny chunk of endeavour. But the knowledge and interest in other people’s work, being aware of the frontiers of understanding that are being pushed at all the time - I really got the feeling that this team of people, working in their different ways with their different expertise, are engaged in this way. And I found that very inspiring. I think sometimes the arts is a world where practising artists can be quite guilty of not being so interested in what has gone before and what is already known. Art historians of course are a different fish all together, but practising playwrights – how many of us (myself included) really know the lineage of our art. Or where its frontiers are? We are very focused on ‘what we are doing’ but too often I think we don’t see ourselves in the greater ecology of what the world of art is doing. I wonder how many times we reinvent the wheel because of that tendency? Perhaps it’s the nature of artists to be more inward looking? I’m not sure, but this has inspired me to double my efforts to read and see more… And also to take stock. We have to dream a better world in detail I think. We have to dream large and dream widely and bravely. But then we also have to kind of find away to accept that in our lifetime, we can only be part of an incremental tiptoe towards achieving the goal of that dream. One day, there will be a vaccine for AD. One day there will be more humanity in the way humans live. Our job is not to hold our breath, or to get frustrated that this day has not arrived, but to contribute a step in the journey that will get us all there. Which is frustrating if you’re an impatient person like myself, but there we are. 

These are the things that came to my mind during and after our meeting with the scientists.  

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