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How to find a lost self after brain injury

Wed 10 May 2017

Our A New Me campaign puts brain injury survivors and their loved ones at its heart by focusing on the new sense of self that can arise after brain injury.

Here, Dr Fergus Gracey, a Clinical Neuropsychologist from the University of East Anglia, examines the issue and the role creativity can play in finding a new, positive meaning in life. 

Dr Fergus Gracey

At the age of about 9 or 10, as many children do, I developed a bedtime anxiety – “what if I forget how to be me while I’m asleep?”

In my mind, an image of waking up in a blank space, all that is familiar out of arm’s reach, with no prospect of finding the lost ‘self’.

Working in acquired brain injury (ABI) I was struck by how often people said to me ‘I just want the old me back’.

As a clinical neuropsychologist, and someone with my own personal experiences of the complexity and fragility of identity, I set about trying to understand the altered sense of identity people were telling me about, and to think how we can make reconnection with identity the core purpose of rehabilitation.

At the age of about 9 or 10, as many children do, I developed a bedtime anxiety– “what if I forget how to be me while I’m asleep?” In my mind, an image of waking up in a blank space, all that is familiar out of arm’s reach, with no prospect of finding the lost ‘self’.

Our sense of self is so ingrained we barely stop to notice it, yet when sudden changes or challenges arise we can quickly enter a troubling psychological world.

In the 1890’s, William James, proposed that the self has two parts, with one part always watching and thinking about the other part. We now know preoccupations with pre and post-injury selves are very common and are associated with distress after ABI. So we asked people with brain injury about their thoughts on how I used to be, how I am, how I want to be.

We discovered how sense of self-connection changes across situations: sometimes feeling like oneself, sometimes profoundly disconnected - ‘self’ is not just an internal thing but is also experienced ‘in the world’.

One person in a group rehab activity put it like this: “Before the injury I ‘drove a Mini’, but the accident changed the vehicle of ‘me’ into a digger, so you keep trying to steer and change gear as if it was a Mini, but the steering and acceleration is all wrong, you crash into things... Slowly over time you learn the new controls”.

In this compelling metaphor, the ‘brain injured’ self is the outside ‘vehicle’ but the ‘knowing’ self remains the same.

In 2009, we described the Y-Shaped model as a way of making identity the main feature of rehabilitation. Activities in meaningful situations (relationships, practical tasks) become vehicles for exploring experience of self in the world.

Alongside other rehabilitation activities, creative projects and opportunities to reflect, we saw how people with brain injury could begin to reduce the ‘self-discrepancy’ and declare ‘I can feel the old me coming back’, and start to discover ‘new mes’.

More recently in a project led by Caroline Ellis-Hill at Bournemouth University, we explored how Arts and Health groups might help restore well-being and confidence post-stroke . The art group participants were supported to nurture their creative impulses in the moment.

Group members began to express hidden ‘liminal’ aspects of their identity in their work. Nurtured by the artist and the group, gradually people described a reconnection with self, and also a desire to create and get involved in things more.

Finding a ‘lost self’ takes the right resources. With compassion and understanding, the innate creativity of human spirit can reveal the most profound and moving ‘truths’ in the face of challenges, from which a new positive meaning in life can emerge.

In this Action for Brain Injury Week it is great to see identity and creativity linked, expressed and celebrated as a new way forward in the field of ABI.

Related resources

“Feeling part of things”: Personal construction of self after brain injury

Capturing process and outcome in complex rehabilitation interventions: A “Y-shaped” model

'HeART of Stroke (HoS)', a community-based Arts for Health group intervention to support self-confidence and psychological well-being following a stroke: Protocol for a randomised controlled feasibility study

HeART of Stroke study

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