I recently published a short story about a woman's tortuous but ultimately successful attempt to give birth to an IVF baby. It was inspired by, but not based on, my own experiences, the results of which are apparent for all to see in the shape of my 17-year-old daughter, an only and very much loved child. I simply cannot imagine life without her - though I'm having to get used to the idea of an empty bedroom (and a bathroom floor bereft of damp towels) when she leaves home next year.
Emily and Bert the dog
The responses to my story were thoughtful and heartfelt, and two in particular made me pause. They were from women I've met through my dementia blogs and highlighted the dangers of making assumptions. I had thought, wrongly, that both had given birth to children. Both were kind enough to say that they'd enjoyed my story whilst revealing that, sadly, their own experiences hadn't provided the same happy ending.
In each case, our exchanges reminded me of how little we know of others' lives. We encounter the tip of an iceberg, frequently unaware of the ups and downs, the challenges, glories, disappointments, loves and losses of people we think we know. Nowhere is this truer than for those with dementia, whose pasts are too often lost - unseen, unknown, untalked of - behind the symptoms of this cruel condition. Yet their lives are no less lived than yours or mine.
Gill Phillips takes an innovative approach to personalisation in health and social care, from working in maternity services to facilitating discussions on how best to support those with dementia. Using her deceptively simple Whose Shoes? board game, she brings together different individuals within an organisation (from the high-flying boss to the hospital porter) and allows them all to see, by "walking in each other's shoes" what their various roles entail.
It's an approach that takes as its starting point the fact that we rarely understand the complexities of other people's jobs or, for that matter, lives. In a guest blog on The Age Page website Gill sums up her attitude, "You never know what's going on in people's lives and I am acutely aware of this". She certainly is. She assumes nothing and always wants to know more about everyone else - an attitude that lies at the heart of everything she does, personal and professional, with impressive results.
A thoughtless stranger who made the news recently would have done well to take a leaf out of Gill's book. Seeing someone she assumed was fit and healthy parking her car in a disabled bay she left a handwritten note on the windscreen: "Did you forget your wheelchair???"
In fact the car's driver, 41-year-old Australian Justine Van Den Borne was diagnosed with multiple sclerosis six years ago. Although she doesn't yet need a wheelchair permanently, she finds walking unaided difficult. Incensed by the note left on her car she's posted an open letter on Facebook explaining that, because of her condition, her children have to deal with things they shouldn't, adding that she's focussing on being able to walk into her best friend's wedding next year rather than being pushed in a wheelchair.Her message to the anonymous note-writer is clear:
Justine's Facebook letter has gone viral with, to date (as far as I can make out) over 57,000 shares and over 234,000 likes.
"Before you ruin another person's day remember you don't know everything and just because you can't see it doesn't mean a person isn't struggling to put one foot in front of the other".
Her words on the dangers of making assumptions are apt in the context of those with dementia. Researching a piece on people diagnosed with the condition before they reach 65 (known as early onset dementia), I've been told more than once that initially strangers often fail to realise that anything is wrong, which can lead to misunderstandings. Many of those with dementia who appear in the media sound so lucid and confident that it is hard to believe anything is amiss. Yet underneath the seemingly calm exterior, as one acquaintance with dementia told me, she is "paddling harder and harder beneath the water".
And what of those whose dementia is further advanced and whose previous purposeful and rewarding lives are either forgotten (not least by them) or unknown to people they meet. This is where the power - the absolute necessity - of life story work comes into play. And where I remember with a smile the first time I encountered George Arthur Moss, "a fairly quiet man with a good sense of humour", a technical illustrator, talented artist and lover of gardening and dance.
George's daughter Jean Tottie created her late father's Life Story Book with the help of Polly Kaiser, a clinical psychologist and doctoral supervisor. If you take a look in it you can see how the collection of George's words, pictures and photos of significant moments in his life reveal the man he was before he developed dementia and helped his carers to provide him with truly personalised support. Jean is now Chair of the Life Story Network, a community interest company based in Liverpool, dedicated to promoting excellent, individualised care through life story work.
Dementia, and the way we treat those who have it, has so much to teach us. The more I write about the condition and the more I understand how people are affected by it in ways I'd never imagined, the more convinced of this I am. Today's lesson, for me at least, is not to make assumptions about anyone and to remember, as Gill Phillips said, that you never know what's going on in other people's lives.