Extraordinary ordinary people

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Whilst getting over the winter lurgi (aka bronchitis), I read Eleanor Oliphant is Completely Fine. Except, as it turns out, she’s not. The intense loneliness of her day-to-day life, the ways neurodivergent Eleanor tries to fit it and to create a narrow – but very safe – existence for herself, and the ways she eventually tries to break out of it was – what? touching? moving? desperately sad? All that and more.

“… by careful observation from the sidelines, I’d worked out that social success is often built on pretending just a little. Popular people sometimes have to laugh at things they don’t find very funny, do things they don’t particularly want to, with people whose company they don’t particularly enjoy. Not me …“

Once I’d finished Eleanor, I unpacked my response by doing a bit of doom-scrolling on the topic of loneliness and isolation. Depressing? Yes, but also food for thought. I ended up questioning whether, as a society, we are all lonelier than we were in ‘days gone by’, as so many articles and writers suggest, or is that  just perception? Does it really matter?

Pondering this took me down the pathways of songs for a while – and there are many (many) songs about loneliness out there. Really. SO many. But the closest I got to where my thoughts of Eleanor had taken me was Green Day’s The Boulevard of Broken Dreams – or, as my family refers to it, the walk
straight song.

“…I walk a lonely road / The only one that I have ever known / Don’t know where it goes / but it’s home to me, and I walk alone… My shadow’s the only one that walks beside me / My shallow heart’s the only thing that’s beating…”

Oh Eleanor Oliphant, this could have been written for you. Or, I suppose, for any number of people who feel disconnected. Strange that I should find this so interesting, given that my working (and volunteering) life in community development has been all about connectedness. Most of the people I’ve encountered have been in their 60s or older, most are/were active and engaged mentally and, in general, physically. Whenever I came away from a group session, planning meeting or event, I found myself thinking, “I want to be like them if I get to be that old!

These interactions changed my views on ageing. Given that my starting premise was that 60 was old, this is not surprising. Admittedly, this view was predicated on my own family experiences: a mother who passed away at the age of 60, after a protracted period of poor health, and a father falling prey to cancer when only slightly older. So my expectations from my early twenties was that, in all likelihood, I would follow suit. 60 was old – and then you died, probably after some wretched illness. This wasn’t something I
worried about unduly, it was just reality as I saw it. I am, after all, a pragmatist.

Working with seniors – such extraordinary, ordinary people – over the past three decades I came to realise that there is actually no reason why I wouldn’t or couldn’t be just like them and live a full, healthy and connected life well past my assumed end point. What a revelation that was! More than that, I observed that social interaction is key. Of course, being physically and mentally engaged are very important too, but the social environment – the support networks, friendships, sharing and more that these provide – works to encourage engagement in every other sphere. Community organisations, places where people can meet up with others – whether friends or strangers – to participate in activities, listen to talks, go out group outings, or just have a natter over a cuppa, are enormously valuable community resources in this arena. They are where connectedness is nurtured and thrives, allowing friendships to develop and people to feel included in their community.

Now that I’m part of the recently-retired contingent, I’m having fun trying out various activities to see where my pathway will take. Currently, MahJong lessons have been replaced by regular games with a group – yes, at a community centre – and these are proving to be fast, furious and great fun. MahJong players take no prisoners! It’s interesting that, somehow, between thinking 60 was old (and headed for doom) and now, I have in fact become one of those people I aspired to be. How lovely.

Choices

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I’ve been stuck at home for a few days, keeping an eye on a pup. A couple of days ago she gave a sharp yelp of pain when she came outside with me, but I wasn’t able to isolate the cause. We checked her limbs – feet, lets, joints, back, felt her gut (in case it was bloat), looked for any other possible causes – and she let us do all of that without twitching. Then, later, it happened again – and again – when she climbed onto the couch and when she lay down. A very distressing sound, a very unhappy dog and a very anxious me. So – vet time.

Dr Kelly has known MissM since she was a puppy and she could immediately see that she was off her usual enthusiastic crazy-pup form. She checked her out from top to toe and found her vitals all normal, weight perfect, gut fine, legs all okay — but the muscles in her neck were very stiff and MissM didn’t want to turn her head from side to side. Up and down was okay, but sideways no. And she didn’t shake her head at all either, as she often does after an examination.

Prognosis? Well, it could just be that she’s hurt her neck racing around, but Kelly reckons it could very possibly be wobbler syndrome – a narrowing of the bony canal that the spinal cord passes through, resulting in compression. This was a definite ‘no, wrong way, back out’ sort of moment. Delighted that it hadn’t turned out to be bloat, but wobbler?

For now, MM is on meloxicam (non-steroidal anti-inflammatory) and gabapentin (anticonvulsant & analgesic), with another appointment booked for Monday. If she’s not significantly better, then X-rays are the next step so that Kelly and/or a specialist can identify the precise locations of the spinal cord compression and recommend suitable treatment…

Sad pup

Meantime, she wants to be close – and by that I mean closer than usual (!), is anxious and a bit dopey because of the gabapentin. Except of course when there’s food in the offing, someone comes to the door or she moves her neck in a way that makes her yelp. This part is very stressful all round. If you’ve ever heard a dog cry in pain, you’ll know what I mean. She’s got to be kept quiet and indoors except for nature-stops – which is tricky. So I cancelled various things and have spent the last couple of days sitting/lying with an extra-close, anxiously dopey dobermann and a rather worried springer spaniel circling the edges.

Anyhow, between dog-things, I read Acacia House, by Vivien Stuart. Of all the topics in the world to be reading about at present, this book is about palliative care > what a funny old place the universe is! (For clarity, I’m talking humans now, not pups… just in case that wasn’t apparent!) Acacia House packages various views about end of life decisions, treatment and hospice funding – or the lack thereof. It’s thoughtful, sometimes funny, and very touching.

With my sad dog curled up next to me, I found myself wondering once again about why it is that so many humans avoid conversations about end-of-life issues, arrangements and preferences? I get it that no-one wants to lose a loved one, and I get it that most people would prefer to think about happier things. But surely it’s better to have these conversations before ill health or accidents alter the way final treatment decisions should or could be managed? Particularly for those of us who any sort of advanced chronic condition or life-limiting condition, or may perhaps be at risk of developing a dementia-related illness.

After all, who will speak for us if we’re no longer in a position to state our preferences? Will they understand what it is that we want – rather than what they think we want… or would prefer us to want? When it gets to that stage of the game, the emotions of people with vested interests of one sort or another can tend to cloud issues and complicate them, taking away the final choices people should be entitled to make for themselves.

Many people have told me that they’ve tried to have these sorts of conversations with their loved ones, only to be shut down. They get variations on a theme of “We don’t want to think about it!” or “You’re still able and fit, so there’s no need to go there.” Is this perhaps because talking about our mortality and decisions around that makes these people confront both the notion of loss and the notion of their own personal mortality? If so, surely this is very narrow-focus thinking? After all, talking about something doesn’t make it so – otherwise we’d ALL be lottery winners!

By the time I’d finished the book yesterday afternoon and contemplated how I felt about it, snuggly-sad dog by my side, I’d concluded that having these conversations with loved ones is an absolute must. If you get stonewalled, perhaps wait a while and try again. It may turn out to be a bit like a war of attrition, wearing them down – one conversational gambit at a time, but it’s worth it in the end, I reckon.

An advanced health directive is the next step. This can be amended at a later date if your preferences change. But in the interim, it provides medical professionals and your loved ones with a clear idea of what you would prefer if you’re no longer able to make or communicate decisions. I downloaded a copy of the pro forma this morning and plan to complete it and then lodge a certified copy with my GP – ‘cos you never know what happens next in life.

What happened to my mojo?

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When did I stop feeling – and being – creative?
It’s mystery, really. Does creativity gradually shamble off as we get older, going into hibernation for some or other reason? Or does it just run its course – the allotted ration used up at some point, the well running dry? Research says this isn’t the case, so perhaps I just got used to doing the things I do and stopped looking around for new inspiration, ideas and alternatives? I can blame work, life, commitments, etc., but the reality is that the blank page stays blank, the art/craft workshop is tidy, the mosaic project unfinished. Why?

I’m increasingly conscious that it’ll be curtains down at some point no matter how many things remain on my to-do list. So, how do I sidestep the procrastination bandwagon that seems to have rolled into town and moved in lock, stock and all barrels loaded? How do I get back to a version of me that I recognise – one that enjoys being creative and actively seeks out opportunities to do so?

Ah yes, how indeed? Tomes have been written on this topic, from academic papers to new age self-help books and everything in-between. There are any number of tools out there for the self-confessed procrastinator to use – it’s just a matter of getting around to finding them, acquiring them and implementing them… Right.

Instead, I decided it was time for me to have (another) close look at the what-when-why-how of my specific procrastinations to find a pathway through them – hopefully back to the creative me that’s been hiding out somewhere. It turns out that this process required a teensy bit of effort. Surprise!

I started by making a list – yup, a boring old list, but a list of EVERYthing I’ve been avoiding, from mundane things like household tasks to work-related goal oriented activities, from exercise and fitness activities to keeping up with friends. That bit wasn’t too hard – it just took time to figure out all those WHATs.

The next bit was a more complicated; it involved annotating each of the things I’d listed with two WHYs: 1) why it was even on the list (it’s an allocated chore, it’s a hobby, I need to get fit, etc.), and 2) how it’ll benefit me if get to it or, better yet, complete it. This took some serious soul searching, some WTF moments and some embarrassing realisations… but I got there in the end.

Onwards to WHEN I procrastinate? I had to figure out whether it’s as I set out to do item X on the list, or before then… when I think about doing the thing. Got it in one: avoidance in all its various guises has become my go-to. There always seems to be a plausible ‘reason’ to have a Scarlett O’Hara moment – to decide to put it off and ‘think about it tomorrow.’

And we’re almost there. To close the loop and move on, I had to figure out HOW it happens. What is it I do INSTEAD of the thing I’m avoiding? Am I putting the thing off completely, i.e. replacing it with another thing to fill the gap, or actually rescheduling? Thinking about it, I realise that, more often than not, ‘rescheduling’ turns out to be just a variation on a theme of a rolling, ever-expanding avoidance. Ouch. This introspection thing can be a real downer!

Anyhow, down to the nitty-gritty now: what to do about it. Well, every week we (Himself and I) write a to-do list up on the whiteboard in the family room. It serves as a memory jogger as well as a prompt, making it more likely that the various things will be remembered and be factored into the week. The list usually goes up on Sunday and includes work, appointments (personal, pets and for others, medical and other appointment with MiL / FiL), my time at the indoor pool, his at Watch School and so forth for the week ahead. We update it as the week evolves. Sometimes appointments change, sometimes things get added or removed – but it’s all up there, a shared mini schedule.

Even so, the daemon that is procrastination regularly has its way with us: the lure of email, cat videos (!), yet another Netflix series, ‘googling up’ some or other piece of information – and disappearing down a wormhole of links. Thinking about this, I conclude that when I don’t do a thing I’ve committed to do (whether the commitment is to myself or to others) it’s simply because I don’t really WANT to do it. Figuring out WHY I don’t want to do it starts with what I’m replacing it with.

A case in point is my current (and ongoing) mosaic project. I started it 18 months ago to cover up an unsightly section wall out on the patio. It’s the bottom section of wall that we never quite got around to tidying up, about 4m long and 30cm tall. A plan and a design for a mosaic frieze gradually emerged and, with it, a distinct sense of creative accomplishment and anticipation. Step one was to get Himself in to help with filling the biggest of the ugly-wall gaps with render and smoothing it over, and to lay a row of colourful tiles along the top of the little wall. In due course I was presented with a cheerful tile pattern and mostly flat surface to work on. Success! Whiteboard updated accordingly, positive feelings all round. Yay. (Take that, Procrastination!)

In my (debatable) wisdom, I’d decided to work directly onto the wall. So the next was to transfer the design onto the surface. Some delays here, which literally included the dog eating the plan (!), but the design finally went up and work began. It was fun. Slowly but surely two geckos emerged on the wall and the piece started to really take shape. The five central dragonflies were planned on paper, and the ceramic tile pieces cut, ready to go up. Happiness factor increased.

Then, after several weeks of regular activity – once the dragonflies were up and the background (so much background!) was started, I gradually stalled out. Instead of spending an hour or so out there each evening, listening to an audio book, cutting tile pieces to shape and fixing them to wall around the critters I’d already completed, I started to binge-watch a TV series, I read a couple of books and spent more time surging the internet. I baked and made freezer meals. I went to WASO concerts and had lunches out with friends. I gardened – a lot!

After several months of this, my internal hall-monitor started asking very pointed questions about the mosaic project. Initially I blamed the weather (too hot, too cold), the wildlife (flies, mozzies, dogs!), the uneven surface (to which the tiles really don’t stick very well). But a long hard look at the what-when-why-and-how of it all has made me realise that I’ve simply been finding the physicality of the project too much. My body and mind have conspired to rebel against the idea of crouching down or sitting on the (cold, hard) ground to work on it. In addition, what I haven’t wanted to acknowledge is that, somewhere along the line, tedium has replaced the initial enthusiasm. I quite simply fell out of love with the idea of it all.

So where to from here? The project is about half done – and can’t be UNdone; nor can I simply bundle it into the back of a cupboard like a half-finished jumper… Clearly I need a plan. And a deadline with clear milestones to ensure I stay on track. I’m reluctant to say Gantt Chart, but that’s about the size of it if I’m to visualise achievable steps and navigate myself back to creativity!

Over the course of writing this, a Master Plan has emerged (without resorting to flow charts!) It’s not on the whiteboard yet, but it will be. Bottom line is that I’ve found something to goad myself into getting back into it: it hinges on FiL’s 90th birthday celebrations in mid-July, some of which will be here at #10. So now there’s a plan: Day 1 (5 June) – review progress to date, decide on completion date. Get cracking! Days 2 to 32 – shape and place no fewer than 10 pieces every day. Day 33 (8 July) – Final pieces cut and placed. Grout the entire frieze and clean up. Done!

I think I’ve worked myself up to believing I’ve got my mojo back: I’ve written a blog post – the first in over six months – AND cut and placed 10 mosaic pieces! Good outcome for all that soul-searching!

(Note to the reader: Give it go – the process does require a certain amount of soul searching and, with that, acknowledging some home truths, but it’s worth it – really.)

Rage against the dying of the light

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From time to time I drop into the local cinema on my way home from work on a Wednesday afternoon. It’s half price movie day and I take a chance on whatever turns out to be on offer when I pitch up. It’s a pretty random thing to do, but that’s part of its appeal and I’ve ended up seeing a number of films that I would almost certainly not have gone to see intentionally. The bad ones are improved by an ice-cream, the good ones leave my mood improved no end and the challenging ones make me think. Sometimes they make me cry.

This was one of those weeks. The film was The Father, starring Anthony Hopkins as the main protagonist (Anthony) and Olivia Colman as his daughter (Anne).

Reviews describe this film as Hopkins’ performance of a lifetime and a ‘devastatingly empathic portrayal of dementia.’ I found it beautiful – and desperate – and heart breaking – and confronting – and altogether too close to home. The overwhelming feeling was of watching a mind coming undone, experiencing Anthony’s increasing confusion and disorientation and never knowing quite what’s real and what’s not. It was unsettling, to say the least.

MiL often tells us that she finds her life both frustrating and confusing. She says she feels unmoored, as though all her familiar anchors are drifting out of reach – or are no longer recognizable. We nod sagely, sympathise and support, feeling that we understand – at least to some extent – what she means. Having read up on Alzheimer’s disease, we know it progressively destroys memories and abilities and that it’s irreversible. So her feelings aren’t unexpected.

But this film put some of those conversations into a more relatable context. Writer-director Florian Zellar catapults the audience into experiencing Anthony’s shifting realities with him – both those inside his head and in the world around him. We end up about as confused as he clearly is as we all try to make sense of the conflicting situations and information. It was uncomfortable. As was the realisation that my ‘understanding’ of MiL’s situation is, at best, limited.

On my way home, Dylan Thomas came to mind. ‘Do not go gentle into that good night,’ he says. And I couldn’t agree more. Anthony’s almost violently expressed frustration and fear, confusion and uncertainty seemed all too reasonable. He should rage, rage against all the points of light going out for him, day after day, leaving him less than he was.

Any day in which MiL feels connected to her life in some way, rather than a confused passenger waiting for the right stop, is a good one. And no matter how pragmatic I am, how full that half-full glass can be made to seem, it’s a desperately sad thing to watch dementia claim someone dear to us.

Rage, rage against the dying of the light!

Bring it!

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Earlier this week I was chatting to BronS at work about websites, blogging and inspiration. I had just finished read Americanah by the fabulous Chimamanda Ngoze Adiche and was rhapsodizing (a bit), which launched us down the rabbit hole of discussing books and authors. It turns out that Bron’s a freelance journalist / book reviewer and met Chimamanda many years ago to review her first book, Purple Hibiscus. Synchronicity, much? Anyhow, by the end of our chat I’d made a note of another Nigerian author (also interviewed by Bron!) and now can’t wait to read Chris Abani‘s memoir.

But back to websites, blogging and inspiration. Bron had come along to learn how to set up a wordpress site, but was a bit hesitant. So I showed her mine as an example of not-too-hard. This in turn led us to talking about blogs, blogging and inspiration for content – and somewhere along the line I confessed to having lost ‘the spark.’

I hadn’t actually articulated this to myself until that moment, but it just came tumbling out. I heard myself tell her about my head being so full of things relating to MiL, to ageing and dementia and support, to how the family copes (or doesn’t) with her day to day incremental loss of self, that when I sit down to write it seems that’s all that’s there. “Since I’m pretty sure no-one wants to read about all that, I’ve mostly stopped writing,” I confessed.

Bron’s response was, “Just write about it anyway! You might be surprised at what people will find interesting.” And of course she’s right. I wrote a whole book about hips and suchlike just to get that saga out of my head – and this is really not that different. It won’t change anything (as far as MiL goes), but perhaps it’ll be cathartic and get rid of at some of the noise rattling around in there.

There are so many things about ageing and working with seniors that could be explored while I’m about it, actually: the lady at the pool who has a 104 year old mother, whom she describes as ‘a heritage attraction in her own right’; another pool-friend who has an 88 year old live-in MiL with terrifying teeth and no English; how so many seniors feel increasingly invisible and sidelined as they age; or the marvelous realisation that age provides the freedom to ignore many of the protocols that previously seemed to rule our lives. And so much more.

Thanks, Bron – I’ll give it a go. Watch this space, folks – and tell me about your experiences with ageing – or the aged.

Meantime, to quote one of my favourite authors:

All this and more.