‘Delirium’ is an hour-long song-cycle by Victoria Hume which explores delirious experiences in intensive treatment areas, and is based on interviews with people who have personal experience of delirious states.  In this post for the HtV blog, she reflects on the research underwriting the song-cycle and examines the relationship between delirium, voice-hearing, and other hallucinatory experiences.

Delirium: images, sounds and voices in intensive care

delirium pic“Even though they look asleep to us, you can’t sedate the soul, you can’t sedate the mind. You can sedate them physically but all that is still very active” (Melanie Gager, ICU Sister, Royal Berkshire Hospital).

Delirium is an hour-long song-cycle focused on the experience of hospital-based intensive care. The cycle, completed in 2013, is based on a series of twelve interviews with people who have been through intensive care, and the people who care for them.

A recent US paper cites a 45% to 87% incidence of delirium in critical care. Many clinicians will tell you that hallucination is an expected part of the ICU experience. There is a demonstrable link between these experiences and both increased mortality and post-traumatic stress disorder – and yet the experience remains little known outside ICUs and carries little weight in our perceptions of recovery, which remain focussed largely on the body and its visible scars.

Sara Evans, a senior staff nurse, explains in Delirium that the causes are multiple and – in an ICU – almost impossible to control: illness, medication, compromised vision and hearing, lack of natural sleep, low or high blood sugars. “There are so many different things”.

Melanie Gager, Sara’s colleague and the ICU sister at Royal Berkshire Hospital, talks about the persistent power of the hallucinations: “we never say it’s not real, because it’s kind of imprinted on their hard drive, if you like, at that time, so therefore it will always be there. That’s why they can recall them with such clarity, and such feeling, really. That never ceases to amaze me – how somebody ten years ago can recall their hallucination and get just as teary today as they first re-told it ten years ago. They’re very powerful, very deep, very emotive”. (See this article for an analysis of the ground-breaking follow-up work at Royal Berkshire Hospital.)

People talk about the problems of sensory deprivation in ICUs, but deprivation is really the wrong word. Units tend to be visually complex, densely populated with wires and machinery. And the sound, too, is dense and constant. (John Wynne’s article, ITU: The Din of Recovery, gives a fascinating account of this situation and its implications.) The problem lies more in the fact that patients at this level of care are effectively imprisoned in their beds, subject to unchanging fields of sound and vision. The curtains back and forth, the beeps and bangs, the periodic shouts of pain, the hideous sound of suction removing fluids from the chest – all move in a continuous cycle.

And many people in ICUs have no outside view; indeed those who do, flickering between consciousness and unconsciousness, may not absolutely perceive it. As Sara explains, the “sense of time goes”. One patient (L) elaborated on this idea:

“It just felt like the time went on forever, you know? …It’s like a pit of foreverness. And I think also that’s what ties in with the light, cause I think it always felt like it’s like night-time, there’s no sort of – you couldn’t distinguish between day and night (L).”

Other interviewees spoke of deep time and deep space, “hundreds of floors down …you’re in a basement …I could see a lift door, but I knew the lift was broken, and I’d been down there hundreds of years and I knew I was staying there – that was it, it was over” (M).

The paranoia-inducing nature of the situation means that many of the hallucinations are persecutory: “I’d got it in my head that someone had put something in one of the drips, so they were trying to poison me, I can’t remember the outcome or whatever, but I definitely remember that happening”(M). And, seemingly, the further people drift from consciousness, the clearer the metaphor for the individual’s crisis: “I remember being on the edge of a cliff, looking down into the abyss. It was very dark, slight hissing noise in the background. I think I sort of knew that there was a life-death balance there; and there was this compulsion, force of gravity trying to draw me over the edge” (J).

But what, specifically, about hearing voices? Sara suggests that the medical team’s understanding of hallucination was primarily visual: “I don’t know whether perhaps it’s just something we never ask – ‘What are you hearing?’ You know, that’s a possibility. Or ‘Can you taste something funny, can you smell something funny?’ We don’t normally tend to ask about that. I think possibly it’s that hallucinations are generally taken to be visual as opposed to anything else”.

But – as the hallucinations are lived experiences – of course they involve sound. Some seem bound to reality – distorted versions of visitors’ conversations:

“I can remember being tied to the bed – and I could hear my children the other side of the wall, who then had their own children …I can remember hearing somebody explaining to my kids and their wives that in order to get rid of aggression from young children, they allowed them to be aggressive to disabled people. And I can remember hearing my children say, ‘well, take our children in, and let them do …what you expect them to do to this person in the bed’. And I was trying to shout at my children to say that they were sending their children in to hit their grandfather.” (G)

And some seem more separate from reality, more ‘completely’ hallucinatory:

“My nephew and his girlfriend – they’re both lovely singers, and I remember hearing ‘where have all the flowers gone?’ And that was very, very real – I can hear it in my head; it was – they were singing for me. I mean, they weren’t actually there, but I could hear them singing. …Just like a real voice, I can really hear that. I enjoyed that, too. You know. I could really hear it, you know – strange.” (J)

One person in fact lived with almost constant aural hallucination:

“What I do remember is that there was always music playing – always. And I never thought anything of it. Literally everything would be accompanied by music, like long, long symphonies… they were epic, I mean …it wasn’t just like a quartet, it was like a proper, full-on, big old 19th century orchestra, with brass and horns and everything.” (L)

For L, the experience is 20 years old, but “oh they’re clear as day…  I could almost – I could draw you a picture of what that experience was like, being in hospital – and where everything was. Where the clock was, and where the radio was that I imagined”.

She speculates about the reasons for her hallucinations:

“I think that basically my brain must have been keeping me company. And creating well, you know, sort of structure and form, and distraction.

…I mean it was awful, it was …traumatic, and incredibly painful, and worrying and what have you, but I don’t know, I think because – it sounds really cheesy – but I think because I had this kind of musical …backdrop, I suppose – that it meant it was survivable… It was kind of life, it was a distraction, it was hope, it was structure, it was form, it was company.” (L)

You could argue that we lack a cultural context for hallucination in the the über-rational west. In South Africa, the San culture’s sangoma regularly and ritualistically undertakes dangerous (hallucinatory) journeys between this world and the next for the health of his community and individuals within it. Closer to home, mystics from Joan of Arc to William Blake could be said to have performed similar social functions. Hallucinations have at various times and in various places indicated power and insight – what Oliver Sacks calls a ‘privileged state of consciousness’ – in those who experience them.

Intensive care, too, induces insight into the most central questions of life, whether we would consider this a privilege or not. Many of the stories and images I heard for Delirium reflected a sangoma-like seesaw between life and death: underground rivers like the Styx, coffins sliding into the earth, cliff-edges; some – nurses seen as skeletons, for example – conflated the dead and the living into one form.

G’s inability to speak in his persecutory scenario is real; tracheostomies, or just the confusion of sickness and drugs, make it impossible for many people in ICUs to communicate verbally. One of Delirium’s songs (Voice Boxed) focuses on the frustration of not being able to speak. Often people’s sight is also compromised; as Sara says, it seems likely these elements of isolation would exacerbate the tendency to hallucinate.

What people’s stories ultimately suggested to me was that – as L says – narrative form, whether musical or more ‘filmic’, had a role to play in creating structure out of the chaos created by these compromised perceptions of reality. People seemed to join the dots of what they could perceive with metaphorical stories: “I think you use part of your surroundings, and then your mind makes things up” (M). It makes for a confusing tapestry of real and unreal, which for many people takes years to unravel: “Still today [a year later] I don’t know whether some things actually happened or whether it was my delirium… [it] must have been either part true, part hallucination, or complete hallucination, delirium, whatever” (S).

But despite the trauma these narratives seem to cause, they are a way of making sense of things. I began by thinking of the hallucinations as the problem, and ended by wondering whether they weren’t the mind’s attempt to find a solution. Like any creative act, as L says, they provide a “structure” for things beyond our grasp – and in turn offer us an insight into our culture, through the images that rise to the surfaces when we are at our most insecure and vulnerable.

Delirium was premiered in London’s Old Operating Theatre last June, before touring to conferences in Bristol, Manchester and London, as well as The Green Man Festival and The Vortex, Dalston. More information, clips and interview transcripts can be found at Victoria Hume’s website.

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