The Noise Begins—Tinnitus, Neuroscience and Storytelling

Atlantic Fellow Dominic Gately, an actor and writer, introduces his new audio piece The Noise Begins. He outlines his plans to adapt and grow the work as a point-of diagnosis intervention for people living with dementia.

The Noise Begins

The Noise Begins is a piece of audio storytelling, driven by a belief that, in brain health, knowledge can be healing. It was created as an escape from tinnitus, but also as an experiment: an attempt to make something beautiful out of something debilitating.

Tinnitus is the perception of sound in the absence of an external source, which can be permanent or temporary. Some people can live with tinnitus without problem, for others it can cause anxiety, sleeplessness, depression, enormous distress, and an increased risk of suicide. There is currently no cure.

In March 2020, I was working in Manchester, UK with the Hallé Orchestra on a piece exploring Beethoven’s Fifth Symphony. We performed to audiences whose nightly numbers dwindled as COVID-19 panicked its deadly way into our communities and collective consciousness. Soon, all performance spaces were closed, ending the theatre industry – among others – as we had known it for the best part of three centuries.

During this new reality, the tinnitus I had been living with for 15 years became exponentially worse. Since I couldn’t escape it, I decided instead to lean into it – what it is, how it develops, how we must live with it and how, at times, we cannot.

I read papers authored or co-authored by GBHI faculty member Sven Vanneste, using predictive coding theory to test outcomes, drawing parallels between tinnitus and pain, explaining why those of us who live with tinnitus do not experience it in our dreams.

Once I began to understand the neuroscience – the idea that my tinnitus was being deployed by my brain as a repair to a perceived problem – I could find moments of detachment from it, from the distress of it. It was a relief. It was healing. In a strange way I began to forgive my brain its mistake – it has the best of intentions.

This healing knowledge, I now realise, has great potential for people living with dementia, something I’ll return to at the end of this piece.

Spoken Reflections
The Noise Begins is in two parts. The first is a spoken-word piece supplemented by an extended version of an original score. It juxtaposes the lived experience of musicians who have tinnitus alongside the neuroscientific theories surrounding this condition. The spoken reflections hold great power, describing relationships both with music and with tinnitus, touching on professional and social stigma, joy and escape, loss and isolation.

It was important to engage the listener as an active participant, to find the sound and tone levels with which they are most comfortable. They are able to do this by live-mixing the constituent tracks on which are recorded, separately, the neuroscience, the lived experience and the music. The listener is empowered — they can raise up, or silence, each or all of these three elements. The piece belongs to the listener, not to me or my collaborators.

Narrative Journeys
The second part is a narrative journey, designed to be a dream-like escape for any listener, because we don’t have tinnitus in our dreams. It uses scripted monologue, music, and field recording. During my research I encountered a rich, new vocabulary — "map- plasticity”, “tonotopic organization” — the neuroscience became a landscape onto which we could project notions of isolation, escape, and memory. A place to reflect on the beauty and awesome complexity of the brain, its capacity for change, and how it shapes our behaviour. I visualised something from great altitude, so the journey takes flight, in the way I do in my own dreams, always moving. As we travel, we swoop down and brush the inner lives of the people who populate this neuro-landscape, highlighting their vitality even as we encounter them in their own physical isolation.

Close collaboration with composer James Hamilton was crucial. The idea for the project began with music, and music needed to fill those gaps between words that may let the tinnitus back in. The music needed to be responsive, empathetic, storytelling. The soundtrack is deeply rooted in themes of movement, travel, and overlapping realities.

Similarly, sound design needed to be gentle, rhythmic, and have comforting or immersive moments that are most likely to mask the tinnitus. My aim is for the listener to drift with the piece rather than be directed by it.

Resources
Finally, the website to which the app is affiliated provides more context for the listener and acts as a repository of resources. It has direct links to the research for those who wish to engage further with the science, along with support organisations for those who may need them.

The project, therefore, is interdisciplinary. The intention is for art to bring empathy to the science.

Therapeutic, Empathy-Driven Intervention
I’m now fascinated by what this might mean for people living with dementia. How further understanding of their own brain processes could offer relief and comfort for someone diagnosed with dementia, and increase empathy from those close to them.

I’m making plans to explore this in my continued work with GBHI by developing a similar audio piece focused on specific subtypes of dementia, offered at the point of diagnosis as a therapeutic, empathy-driven intervention. Art that encourages the idea of a space between the symptoms and behaviours associated with dementia, and the rich uniqueness of the person experiencing it. Work that shifts power structures through greater access to the science, and the opportunity of immediate peer support through voices of lived experience.

My hope is to demonstrate how understanding can be a coping mechanism and to advance the philosophy that, in terms of brain health, knowledge is healing.

The Noise Begins is available at the App Store here, and will be coming soon to Google Play for Android.

Website: www.thenoisebegins.com
Twitter: @thenoisebegins