On paper, it looks dreadful. A Diane Sawyer interview with the second wife of a beloved actor who has a life-changing disease, timed to coincide with the launch of said wife’s book about her experiences as a carer. Pass the bucket, give me strength and have some dignity are just some of the instinctive responses.
So it is with trepidation verging on dread that one approaches Emma and Bruce Willis: The Unexpected Journey – A Diane Sawyer Special. But, much like the other recent potential schmaltzfest My Mom Jayne (Mariska Hargitay’s film about her mother, Jayne Mansfield, who died in a car crash when Hargitay was three), it turns out unexpectedly well. Yes, Sawyer does not help. She is the doyenne of the sympathetic/emetic head tilt and master of the pained expression. Her furrowed brow invites us to imagine she is being forced at gunpoint to ask the intimate questions her producers and the lowest common denominator demand, and her self-penned scripts are inexcusable. “His quiet dream girl shared his working-class values though they were from wildly different backgrounds,” she intones softly over photos and footage of the film star and his soon-to-be fiancee, Emma Heming, from their early days together, “before the joyful ride began”. Alas: “No one in life knows when there is a shadow about to creep in.”
The shadow here, of course, is Willis’s diagnoses in the last few years, first with aphasia – after which he announced his retirement from acting – and then with frontotemporal dementia (FTD), a rare form of dementia, for which life expectancy is generally five to eight years.
The 40-minute programme (once ads are stripped out) contains highlight reels of Willis’s career, reminding us of his bullish charm as a 29-year-old star on the rise in Moonlighting, his astonishing charisma as the action hero of the Die Hard franchise, and of his finer-grained work in the likes of The Sixth Sense and Pulp Fiction. There are also clips of his forays into music, lots of lovely video footage and photographs of him as a clearly devoted family man (his divorce from Demi Moore and relations between the first and second iterations of the clan have been amicable).
We get glimpses of the lives of others with FTD and their carers, as well as contributions about the nature of the disease from Dr Bruce Miller, an expert in the field (who does not treat Willis, so there can be no breaching of confidentiality).
But at its heart is the interview with Emma Heming-Willis, who comes across as a poised, thoughtful, articulate woman struggling under an enormous burden of grief and responsibility. She talks carefully but honestly about Willis’s health and says she first noticed something was wrong when her hitherto endlessly warm and affectionate husband started to withdraw from her and the children and become indifferent to people. FTD, explains Miller, attacks the parts of the brain responsible for empathy and language first, and removes the patient’s awareness of their deterioration.
Heming-Willis talks with striking bleakness about how hard it is to remember the fun they used to have and how it is less distressing to focus on the status quo than to look back. “The sadness, grief, resentment is a common thread we all share,” she says of her fellow carers. She urges people to consider that, if it is hard for her with all the support and resources at her disposal, how much harder it must be for those who have to manage virtually alone.
Nevertheless, and though it sounds almost Sawyeresquely trite, the love shines through. From Willis himself in the photos and the family videos, from Heming-Willis as she speaks about him, from the anecdotes and memories of meeting Moore and the three children from that marriage, and the photos of all the girls with their dad at various times – including recent ones from his new home, a bungalow in which he lives with round-the-clock care. Although, says Heming-Willis, he is mobile and physically healthy, his language has virtually gone and because of the damage FTD wreaks on the parts of the brain that identify and recognise risk, patients are no longer safe alone.
It is a heartbreaking story, repeated in families around the world. The number of people with dementia – in its various forms, united by their remorseless cruelty – is set to triple by 2050. “It is,” says Miller, “the disease of our age”. That Heming-Willis is using her resources to look outwards, raise awareness and ameliorate such hardship as she can is a measure of the woman – and perhaps, too, of the man who loved her so.