[2012054] My Unseen Disappearing World

[2012054] My Unseen Disappearing World

Kate Swaffer @ Scots Church Adelaide – McGregor Hall

5:30pm, Mon 27 Feb 2012

As an unfortunate consequence of my own age, and the age at which they created me, my parents are pretty old. I’ve mentioned my father’s occasional physical frailty on this site before; what I haven’t talked about much (if at all) is my mother’s mental frailties.

See, Mum has Alzheimer’s. The disease’s onset was only really noticeable when I found myself having the same conversation with her multiple times over the course of a catch-up phone call; even then, it wasn’t really something that I actually thought was happening. Mum was… y’know, just forgetful.

It wasn’t until, when at home for a family Christmas gathering, I noticed the unmistakably medicinal box of sealed capsules that had “For the treatment of Alzheimer’s Disease” written on the side (in soft, calculated hues) that it hit me, that I really accepted that this was happening to my Mum – the keeper of the family, the purveyor of love and sustenance, the provider of coffee-cream sponge birthday cakes.

So, as I sit in the pews within Scots Church, I know why I am here; I look amongst the assembled crowd (who would number in the fifty-or-so, I reckon), and wonder why they are here… for a moment. Then I sadly realise that most of them are probably here for the same reasons I am… which makes me a little bit sad.

Kate Swaffer arrives at the podium and introduces herself: 53 years young, a poet and writer, and suffering from early-onset dementia. She strives to manage expectations early: yes, she will be reading off notes, and yes, she may get lost in delivery (something that only happened once during this session). But it is her almost ceaseless energy and sense of creativity that creates a lasting impact from this performance.

Swaffer’s delivery is very much as a lecture, with occasional interludes from her piano accompaniment allowing her to rest up a little while the audience reflects. But it’s hardly a dry delivery – she punctuates her stories with some of her poems (Slipping Away and Stolen Dreams appear early on), and there’s oodles of topical humour to be had – from her husband’s sole wish (“Don’t call me by your ex-husband’s name”), to tales of her family’s tolerance, to the benefits of playing cards alone (she always wins!).

She covers much of her life story – growing up in a small country town, working as a nurse, and running her own small businesses all helped to shape her. She talks of her first suspicions of her disease, and of the diagnosis… and how much energy was required to hide the growing symptoms from friends.

But by accepting her diagnosis as an opportunity to explore a new way of living, Kate actually managed to take a potentially debilitating negative and turn it into something more: her dementia has allowed her to sit up and take notice… to realise that it’s all there to do. Now, driven by her mantra “live with urgency, before the emergency”, and developing her own PERMA Principles (Positive emotions / Engagement / true Relationships / Meaning / Accomplishment), she’s managed to avoid the perpetual fear of being herded into a dementia day care centre (or secure ward), and actively seeks new, fulfilling relationships. At one stage, Kate quips that her life is actually expanding because of dementia – after all, old friends are becoming new friends.

But Swaffer also covers the nitty-gritty of dementia, with both personal stories (her tale of a friend’s sudden-onset dementia – literally forgetting everyone overnight(!) – absolutely terrifies me), along with more clinical information: one researcher’s report that the onset of the disease could be slowed by increasing the patient’s levels of learning and exercise – especially running – caused the silver-tops in front of me to look incredulously at each other and chuckle. She also recommended a couple of books (The Brain That Changes Itself and The Biology of Belief), and described how much keeping a daily blogging habit has helped her (as she uses her blog like a memory bank… something that I’m also familiar with).

As she reaches the end of her monologue, Swaffer looks distinctly tired: she gets a few moments respite as she plays her short movie Dementia: My Story, and then rounds out with a closing poem, Sunshine, which seems to epitomise her positivity: “Somewhere in the distance / The sun is still shining.”

And that’s a perfect end to My Unseen Disappearing World, I reckon. Rather than “suffering” her dementia, Kate Swaffer has used it as an opportunity to discover a new way of living – one that’s as active and creative and social as she can possibly make it. Despite the potentially morose subject matter, she presents a pragmatic – and even (somehow!) uplifting – approach to the disease, and provides one massive take-away nugget for friends and family of sufferers – It’s how you say something that’s important, not what you say.

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