by Poppy
Today I met with Sal Connelly head of Psychology at the RHN to talk about her work with the patients of LIS, and their families. I was flying solo as Jon wasn’t around so the interview had a chattier tone than usual, but luckily Sal is a wonderfully chatty woman. Of course I still gathered reams of useful material, as it was very focused chat, some of which has already begun to form the basis of an aria for the opera. My mind was particularly blown by a comment Sal made about identity – namely that we tend to define ourselves by what we do, and our activities and roles. For example, if someone asked me who I was, I might start by saying I was a director, a mother etc, i.e. defining myself by my roles. Whereas if a child is asked to define their parent they will do so using emotional language I.e. my mum is nice, she makes me feel happy etc. So an initial hurdle for locked in patients adjusting to their new state is this reimagining of identity when they can no longer perform the roles by which they previously defined themselves. It seems obvious, in a way but redefining ourselves, or our notion of ourselves, not by what we do but by how we are can be an extremely empowering tool (arguably for everyone, not only LIS patients). More generally the interview provided a great insight into the process of adjustment for locked in patients and their internal experience, though admittedly from a somewhat outside eye. The next stage then is to hear it from the patients themselves, which we will hopefully begin doing in the next few weeks...