By Poppy
This week we have been interviewing patients for the opera. It’s been an incredible process and a real eye-opener for us both. When we started this project I think we both had a fairly narrow view of Locked In Syndrome - largely from reading about it in ‘The Diving Bell and The Butterfly’ which is probably a way in to the condition for a lot of people. But actually what we explore in the opera is a much broader spectrum of high cognition, low mobility states. So we met with a range of patients - some who had retained eye movement only and others who had over time developed flickers of movements in their hands and arms - such that they could operate switches and light-writers (a kind of keyboard) to communicate. For all of the patients being able to communicate was hugely important - and one patient when asked to describe how it felt now that her communication system was in place said beautifully ‘feeling less forgotten’ - a phrase that will definitely appear within the libretto. But although important to them it is nevertheless hugely fatiguing - no interview was more than an hour long and by 45 minutes in each patient was visibly finding it harder to communicate simply through fatigue. Many of them had lots to say about their interests - in West Ham Football Club, in R&B music - but for some the act of communicating a sentence of even a short phrase could take up to half an hour as we would often have to go letter by letter, and in several instances where the technology was playing up, or was simply too much effort by that point in the interview they reverted to much more low-tech methods of communication including writing each letter in the air - for one patient who had movement in his hand, or mouthing each letter. But as you can imagine if you’re not a highly skilled speech therapist (which I’m not) it’s easy to mistake a ‘p’ for a ‘t’ so the process was often even longer due to our misinterpretations. Nonetheless the patients were so keen to share their experiences with us and so positive about their conditions. It’s very easy to presume that such a life - which undeniably is full of challenges both physical and emotional - would be a depressing existence but what struck Jon and I is how positive and optimistic all the patients we met with were - no doubt in large part to the incredible support, care and resources they have access to at the RHN. That place is such an inspiration.