writing the libretto

By Poppy

It's a curious experience writing a libretto for an opera - made even curiouser when one is working from the transcripts of real life interviews. I did a similar thing on our production Waiting in 2010 working from the verbatim text of British Muslim women whose husbands had been detained in Guantanamo and Belmarsh. But on that project the text already existed and I didn't meet the women until the piece was performed, which allowed me a certain distance from the material and possibly greater artistic licence. With Flicker - an opera about giving a voice to those unable to communicate - I feel so keenly the responsibility to do justice to the voices of the many patients and staff that we've interviewed - to try and preserve the idiosyncrasies of their speech patterns, to retain the accuracy of the science and also throughout all of that to carve out a narrative that hangs together and resonates, with characters who each have a consistent voice (although the truth is that each character comes from several interviews and partly from my imagination).

Hopefully I won't give Jon too much of a head-ache giving him phrases like 'We can use neuro-imaging equipment to show auditory evoked potentials' to set to music! But I think my role really is about finding the poetry in the every day - there are phrases and snatches of text that I'm weaving into the libretto that have come from the very beginning of the process - back in the autumn of 2011 when we first met with Sophie Duport, our scientific advisor she spoke very eloquently about the inability to express emotion when you are Locked In 'how do I [they] cry, the cry cannot come', and even a phrase from a meeting with our Wellcome trust grant manager 'suffer with less suffering' has made it in. Ultimately I have to write something that Jon can set and the performers can sing so I'm always drawn back to short phrases and repetition, although sometimes there's no avoiding the technical jargon for the scientist character - but I think those sections will have a more recitative-y feeling out of necessity. Also I hope to inject some levity into the piece - the last thing we want is 60 minutes of misery - with a few choice swear words. There's nothing like an opera singer singing the word 'fucking' to lighten the mood.

Patient interviews

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.

Psychology

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...

Moving Forwards

By JN. Very excited with how far we've now come with the project; it only seems like yesterday that Poppy and I were sitting in a cafe on the Portobello Road batting the original idea to and fro and wondering how on earth we could get something like this off the ground. Now we've got hours of interviews with truly remarkable people to sift through, have a venue pencilled in for the end of January 2013, are putting our team of musicians and singers together and starting to sense a structure, narrative and musical ideas starting to emerge. We're even (more or less) on schedule...

Compass

by Jon

Great visit today with Poppy, Will (and Noah!) to the hospital's COMPASS centre, where the tireless staff constantly develop and refine the amazing hi (and often lo)-tech technological solutions enabling patients to communicate and interact. We were welcomed and shown round by team member Marc Viera, who gave us a whistle-stop tour of the various communication devices used by patients, ranging from the EyeGaze system which allows the user to control a computer cursor using just eye movements (which as Poppy discovered is much harder than it looks...) to a whole range of ingenious devices controlled by different kinds of switches and triggers. One of the most fascinating aspects of the COMPASS team's work is how the smallest flicker of physical capacity on the part of an individual patient can be exploited to create a completely personalised / bespoke communication / facilitation system. The journey towards communication is becoming a key part of the libretto, so I'm sure we'll be back for a repeat visit some time soon...

Music Therapy

by Jon

Today I had a terrific interview with Julian O'Kelly, head of music therapy at the RHN. After bonding over the fact that we'd both owned the same make of cassette multi-track recorder in our youths, we talked about Julian's fascinating research, which amongst other things focuses on neural responses to different kinds of music from people in low awareness / vegetative states, and involves close analysis of EEG scans. These are often crucial in the diagnosis of Locked-In Syndrome, especially before the stage at which patients have become able to communicate; their EEG scans are of course exactly the same as a normally conscious and cognitively functional person, showing spikes and movement in response to external stimuli (such as music!) whereas those of patients in low-consciousness states are much flatter.

As I watched the EEG scans moving on Julian's computer screen, I was very struck by how much their multi-layered patterns resemble an abstract sort of musical notation (perhaps Will might be interested in this from a visual point of view as well...). I was also fascinated by the process of how music therapists often begin to work with low-awareness patients – beginning with a single note played in time with the patient's breathing, which is then added to and expanded until it might grow into something quite complex. Lots of ideas already starting to float around...

Lilian Baylis

by Poppy

Today Will and I had a meeting with the technical team at Sadlers Wells to talk about the tech requirements for the concert performances in January, particularly all the video projection which always requires a huge amount of tech time. It’s such a delight working with a well-resourced building like Sadlers where the staff are so knowledgeable and keen to make things work. Also honest – it turns out there may be lots of little extra costs which some venues would just whack on at the end of a settlement but the guys at Sadlers made a real point of telling us about them all. Then we had a look round the space and started thinking about the logistics of wheelchair access for several large wheelchairs – they normally only have two seats available – but that problem was easily solved by agreeing to take half of the back row out to make space. Really excited about getting in there, though not for a while admittedly, as it’s such a great and well equipped (though still intimate) space.