THE PERSON STILL THERE – a quote by Emma Heming Willis
It is with much warmth and dignity that Emma Heming Willis talks about adapting to the ‘new life‘ that she now shares with her husband Bruce Willis as his brain and body are progressively disabled by Fronto Temporal diseases.
As we all would do, Ms Heming Willis struggles to reconcile the memory of the healthy, strong man with whom she fell in love and whom she married with the shadow of the old self that Bruce Willis was morphing into. She says in her book The Unexpected Journey that every morning, since she became aware of subtle changes in his behaviours, ‘it was like waking with someone new’.
Bruce Willis now lives with damage to regions of his brain responsible for everything that makes us who we are: how we think, how we use language, how we relate to the world around us, how we respond to others and how we progress into our life with all its vicissitudes: the frontal and the temporal areas of our brain.
The family of Bruce Willis has devised its own way of communication. ‘I read his body language’ says Heming. Though the healthy husband and father are no longer able to participate in all the interactions of a ‘family life’, they love ‘the person still there’ unconditionally.
‘When I realised that the changes in Bruce were caused by something beyond his control, I softened quickly. I then understood that the kind, caring and compassionate man I fell in love with was there the whole time. It was his disease that had started to take away the traits that made him him. I was able to forgive and forget, and I fell back in love with Bruce in a different, reimagined and unconditional way. What a gift that is, especially because I’d spent my whole life wanting to know and feel unconditional love with a partner’.
They have adapted to his life: ‘the girls’, says Emma Heming of their daughters ‘don’t need him to be this or that. They have really adapted to his disease and they know how to move around him. It’s beautiful’ and yes ‘it’s hard for them’. And Bruce? Bruce enjoys watching his young daughters doing all the things young girls do, jumping around and making fun of him, as all young children do.
As I wrote about my mother in my memoir Thank you lady, the person that was still is, though not consistently or constantly. It appears in unexpected moments and our antennae need to become exceptionally sharp and sensitive and grasp it and respond to it in the moment. Emma Heming describes ‘these moments of connection all the time’ when she sees her husband’s adoring looks ‘when he is as he was’. She cannot say if he knows that she is his wife. It does not matter. The fleeting moment of connection is all that matters.