COMMITTING TO OUR ETHOS & OUR ARTISTS What happens when one of us becomes ill?

The group talking to Pippa during our training day.

We start 2 training residencies this week.  This encompasses: 2 Folkestone based writers working on their second training residency; 2 new writers beginning the process afresh; 1 experienced Living Words writer leading in one home; and me, founder and artistic director, heading up the whole residency training.  But someone else who is part of our team will not be physically with us over the next 2 months – Pippa Wildwood. Pippa has been part of the team for 4 years and is an exceptional Living Words artist. As she explains in her blog below, Pippa is unwell. Her condition means she has to be at home most of the time and could lead her to become isolated – this is separate to her learning to live with the symptoms of the condition.  I am committed to walking our organisational talk and I question myself around this, a lot.  Living Words works with people who are isolated and so we need to adapt our ways of working when one of our number faces isolation.  I believe arts organisations have a responsibility to artists who work with and for us.  Perhaps what we discover in the weeks ahead can become part of two wider dialogues within the arts: 1) The arts sector and our role as responsible caretakers for the wellbeing of our artists; and 2) How do we as a sector engage artists who are not able to be physically present – to use their skill and artistry for the betterment of the project and their learning?  We are working out how we approach this step by step.  In our training day last week Pippa was present, via skype. Here are her words on this and the Living Words methodology.

Pippa Wildwood:

We are now embarking on our second project based in Folkestone. It’s an exciting project in which we continue the training process for Charlotte and Zoe who joined us in July as well as training two new writers – Anil and Oliver – one of whom is a composer and will be working with residents, experimenting with putting their words to music. 

I’ll be joining this project virtually and working from home. Over the last six months my health has declined steadily and three months ago I was diagnosed with ME. Coping with the effects of this has been challenging, it has turned my life upside down and deeply impacted all areas of my experience. Currently, some examples of the way my ME affects me are that I can rarely leave my house, cook or clean for myself, walk or stand for longer than a few minutes, overwhelming physical discomfort and symptoms, I have difficulty concentrating, finding the right words, retaining information, keeping up with fast paced conversation and am easily overwhelmed, writing something like this blog takes three times as long and is far more difficult.  A side effect of this experience is the gift of some unexpected insights many of which are influencing my practice and understanding of the work I do with Living Words.

Thursday last week was the first training day. Susanna asked me to speak to the group via skype about what makes the work Living Words does with people living with a dementia distinct.   Below I share some thoughts about awareness, stillness and connection…

Before we enter into process with someone we prepare ourselves. We blank ourselves. We become an empty sheet of paper. We do not disappear, deny our experience or the part we play in the relationship. We are very much there, just more present and readier to follow the other persons’ process. For that we need to listen… and I mean really listen.

Our awareness expands. When we enter someone’s space we are immediately gauging the connection. You’re sensing what the situation requires… to be still or slow, look away or to be more direct form the start.

Then there is the stillness. You hold a space between you. It’s still but it’s living. Typically, the people we are working with have far less variety of stimulation or a slower pace than we do (not always). Because of this they can experience a stillness that is outside of our own busy everyday lives no matter what their experience of their dementia is.  So sometimes we need to slow down. Not come in with rush, overwhelm with words or an agenda. To establish trust, we follow the individuals’ pace.

We have often talked about feeling like explorers or like we are going out to sea. When you work with someone you don’t know where you are headed, you might not have been anywhere like it before, but you have the book open between you, ready to write down their words, a map of sorts.

By now I know the process works and so I put my trust in that and head out into the unknown with an open awareness, stillness, alive connection and a good sense of humour.

Having been in the position of cared for myself the last couple of months, I have the tiniest tip of the iceberg taste of how it feels to live within a few rooms, having to rest a lot and with far less stimulation. I have slowed down, stimulus has a greater impact on me and I am more alert to my body and surroundings. All this to say that I begin to have a visceral empathy to the experience of some of the people I have worked with.

Sometimes I find myself thinking “Wow! Maybe X was feeling like this… maybe this is why Y acted or felt that way…. I can’t believe – might have been having an experience like this and I had no idea what that might be like!” It has also made me naturally slower, stiller and more present when working with people which has opened a new depth to my own process.

Susanna Howard:

As we can see from Pippa’s words, there will be much to learn from her experience, both personally and for the group. Three years into my own practice I experienced a rather violent viral meningitis which sent me to hospital for a while, with a long recovery afterwards. This gave me an appreciation and new understanding of the work we do, particularly in relation to language – I spent a while calling our fridge, ‘the horse’ – because in my head I saw an image of a western film with a horse and the ‘vittles’ in a bag over the saddle. That was how my brain connected and the word came out.  As we move forward, it might be easier for Pippa to post videos here and we can engage in a dialogue about how we tackle this as an orgasniation, as a group of people, a team – together. We have a lot to learn.


Pippa on the chair, virtually. Here she is talking about listening…