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Flicker - Research

Here are links to some of the research that helped us develop the opera.

Locked-in syndrome: a review of 139 cases

Pressure Volume Curves of the Respiratory System

Scientists seek to help Locked In man speak

Life can be worth living in locked-in syndrome

We also read the following books which provided a great (non-scientific background)

The Diving Bell and the Butterfly by Jean Dominique-Bauby - the book that inspired FLICKER in the first place - beautifully written and powerful memoir about the experiences of having Locked In Syndrome written entirely by Jean blinking his left eyelid.

Me Before You by Jojo Moyes - a surprisingly un-sentimental novel about the relationship between a young man who becomes paraplegic after a motorbike accident and his carer.

opening night

opening night

By Poppy

Last night we opened Flicker to an almost sold-out house in the Lilian Baylis Studio of Sadler's Wells. Despite a madly busy day - whose idea was it to have only a day in the space with a huge amount of sound, lighting and video to tech (over 100 video cues in a 55 minute opera) - it was a resounding success. Everyone from funders, to the patients & staff who have contributed to the project and even the random audience members with no connection to the production or to Metta all loved it and found it simultaneously a huge insight into Locked In Syndrome and the work of the RHN and also a profoundly moving and emotionally engaging performance.

So Will was possibly the most stressed of all of us with his several hundred cues and a somewhat recalcitrant set of computers to work from, however everything came together smoothly - if last-minutedly and everyone commented on how beautiful and powerful the video was and how much it added to the performance.

Both Jon and I were slightly shell shocked and I think it will take a few days to process fully how it all went - a surreal experience to have just three days rehearsal and end up presenting something so polished (not quite the concert performance we had originally imagined back in 2011). But we couldn't have wished for a better showcase for the work - the singers were extraordinary, the band under the masterful conducting of Andrew Gourlay were sublime and the actor - our good friend and god mother to our son Noah - Loren O'Dair was astonishing in her portrayal of the Locked In character Iris - communicating so much literally just with the movement of her eyes.




By Jon

We've been rehearsing 'Flicker' for a couple of days with the full orchestra, the singers, conductor Andrew Gourlay. The RHN have allowed us to rehearse at the hospital, in their wonderful Assembly Room; the patients and staff have been dropping in out of the rehearsals all week, and it feels as if our work's become a real feature of life here, if only for a while – it's lovely to hear the singers' voices echoing down the long Victorian corridors.

After a small crisis occasioned by the delivery of an F-sharp crotale rather than an F-natural one, it's thrilling to hear the piece come to life with such terrific performers. Everyone's working extremely hard, from Andrew's meticulous work on the score, to Will's marshalling of his small army of laptops as he develops the video projections, to Loren's beautifully controlled performance as the 'real' Iris, while Poppy zooms on and off the stage giving directing notes whenever Andrew stops the musicians. The hospital have incredibly generously lent us a bed and wheelchair, which they've custom-fitted with a light-writer for us, which makes a huge difference to the realism of what we're presenting.

I'm still making a few final changes to the score (now I've heard it played live), but really just minor adjustments to the orchestration; overall I'm very pleased with how it's sounding, and as always am overwhelmed by the privilege of having my music played by wonderful musicians. I think we're all feeling quite confident about the performance at Sadler's Wells now, and we're really looking forward to putting the piece in front of a live audience – tomorrow!


Finishing/not finishing

Finishing/not finishing


By Jon

I've finished! Or at least that's what I've been going round telling everyone; in fact I've just finished setting the vocal lines and the harmonies, having in the process pushed Poppy's near saint-like patience almost to the limit with my repeated texts and emails asking if we can shave yet another couple of syllables off a line.

I've now got to orchestrate the opera for our five-piece band, and have got about 4 weeks to do it before I have to send the completed score to our conductor Andrew Gourlay, the vocal part to the singers and the instrumental parts to Aurora.

I've made a chart on my studio wall with the total number of bars in the opera (1341), and the number of days left before the deadline, and I've worked out I need to orchestrate at least 123 bars a day to keep on top of things. So far I'm just about managing to do it, thanks in no small part to my assistant Fran, who's input all my manuscript material into Sibelius (a software notation programme), which has saved me a huge amount of time. Once I've (eventually) finished that and sent the score to Andrew, I'll need to go through it again, this time reducing the instrumental version to a keyboard and voice arrangement that we can work with in rehearsal with Aurora's fantastic repetiteur John Reid for a couple of days before the other musicians arrive.

Very excited now the performance at Sadler's Wells has been confirmed, and very much looking forward to hearing it played live by such fantastic musicians.


research and development

research and development


By Poppy


Today we spent an amazing day at the rehearsal rooms of English Touring Theatre trying out some of the music with the singers. It was especially thrilling for me as I hadn’t heard any of the music until that point - and it’s absolutely stunning. Thankfully the singers also love it, which makes a real difference, and they’re raring to go away and learn it all for January. Of course Jon has to sit down and write it all first! But two of the twelve movements are done and they’re both stunning. We spent the morning working through the pieces purely musically and then in the afternoon began to explore some simple staging ideas and particularly how the character of Iris will be portrayed on stage as she’s played both by an actress and a singer simultaneously. Some good discoveries were made which will stand us in good stead for January and someone from the Wellcome Trust came to observe in the afternoon when we performed a work-in-progress showing of both movements. A nail-biting moment for myself and Jon but she loved it so that’s all good. Now I can’t wait to get started properly on it all in January.




By Jon

It's 5.30 in the morning and I'm in a rather insalubrious B&B in Bath, where I'm composing for some shows at the Theatre Royal whilst doing some work on 'Flicker' in the early part of the day before going in for technical rehearsals. I've spent a long time reading and re-reading the libretto, and asking the ever-patient Poppy if she'd mind changing a few sections and phrases that I think the music won't need. At the moment the score's a fairly random collection of bits of manuscript paper with scraps of vocal melodies and chords, from which I'm pulling together ideas as I start working through the libretto.

When I talked to Julian O'Kelly - the head of music therapy at the RHN - I was very struck by the idea of what music therapists call 'entrained improvisation'. This is a musical process used to establish connections with patients in low-awareness states; the therapist begins by humming, singing or playing a single note, which is precisely timed and phrased to the patient's breathing. Gradually more notes are added and the complexity built up before being taken back down to a single note again. There's something very attractive about this as a compositional structure, so I'm planning to use this basic idea in several different ways throughout. In fact I've got very interested in the whole idea of breathing patterns; we've decided to start and end the opera with solo arias for Iris which are not-quite-identical mirror images of each other, and I've found some low chord clusters which have a feeling of soft breathing which I think might work well as an accompaniment for these.

I've also decided that the three characters should have quite different kinds of music. Iris' music is going to be very chromatic and melismatic (stretching words over several notes), whereas Bridget's will be much more melodic. She discovers Iris is locked-in (rather than being in a low-awareness state) when she notices Iris blinking in time to her singing, so I've written a little slightly Ella Fitzgerald-ish song for her to sing, which I can develop into other ideas elsewhere.

I've (eventually) been having fun with the Joe scenes; at first I was slightly tearing my hair out over how to set phrases like 'neurophysiological response', before I realised that there was something quite exciting about setting his lines very close to the actual speech rhythms of the interview transcripts we drew on when putting the libretto together. His scenes are also an opportunity to introduce a slightly lighter tone, so I'm trying to make his sections as bouncy and upbeat as possible.

We've got a R&D day coming up, where we're going to workshop two scenes with two the singers who'll hopefully be in the final performance - the soprano Anna Dennis (playing Iris), and Alison Crookendale, the contralto who'll be playing Bridget, so I'm looking forward to hearing some of the music sung live. We're going to concentrate on Iris' opening aria and the scene in which Bridget starts working with Iris using an alphabet chart, which Iris can navigate by blinking. As we found when interviewing the patients at the RHN, this is an unbelievably slow yet crucial process, and I'm starting to think about how to convey that musically without the audience (hopefully) getting bored.

Lots to do...

Some hard decisions

By Jon

I've just had the first draft of the libretto through from Poppy. It's fantastic, striking a careful balance between the human story of Iris (our central Locked-In character) and Bridget (the nurse who cares for her and guides her on her journey to communication), and the scientific material we're also keen in to incorporate, which will be delivered by a character called Joe. s a music-therapist delivering a 'lunchtime lecture' (a regular feature of life at the RHN, which many of the staff attend).

Poppy and I conducted most of the interviews with staff and patients together, and worked out an overall broad form for the opera: a twelve-part structure, in which each section is a snapshot of successive months over a single year, and alternates between Iris' story and Joe's lecture, which will occasionally be interrupted by Bridget. It's thrilling to get a fully fleshed-out version of the bare-bones skeleton we've been discussing for so many months, and I'm now at the stage when I need to start making some fairly major decisions that'll have far-reaching effects on how I write it..

Firstly, the singers. For budgetary reasons we're limited to three voices, which led to a hard decision about the number of characters. We always knew we wanted Iris to be played simultaneously by two performers: an immobile actor and a soprano who would voice his / her thoughts. We also wanted to include a scientist of some sort - this became our Joe character, who would be a low male voice - either a bass or baritone. We thought long and hard about who the third character should be; originally we were very keen to include a character who was a friend or family member of Iris', but were very struck when visiting the hospital by the particular quality of the relationship between patients and the nurses who care for them, and so decided to explore this via the character of Bridget, who will be a contralto. This gives me a nice range of voices to work with, and it's a combination whose ranges sit above and below each other quite well.

Secondly - instruments! I'm limited to five musicians (again for cost reasons), so I need to choose a combination that I can get the maximum flexibility from in terms of range, dynamics, texture, and the ability to play not only solo melodic lines but also accompanying chordal-type material. I'm also not allowed a piano (budget...).

So with all this in mind (and taking a slight steer from Schoenberg's choice of instruments in one of my favourite pieces 'Pierrot Lunaire'), I've settled on a combination of cello, violin (doubling viola), clarinet (doubling up on my favourite instrument of all time - the bass clarinet), flute (doubling up on piccolo, alto flute and the fabulous piece of plumbing that is the bass flute), and a percussionist playing marimba, vibraphone and various other bits and pieces. Very excited at the prospect that we might be able to work with the virtuosic Aurora orchestra....


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.


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...


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.