Kimi’s 7th birthday fell on Easter Sunday. We were on holiday in Japan, seizing the chance to catch up with friends and make wonderful family memories, not knowing how my recently diagnosed MND would progress, bearing witness to the wisdom of neurologist Dom’s advice to do it now – Carpe Diem!Sendai was fragrant with Spring blossoms, and an unexpected sprinkling of snow added to the magic of the day.

Friends took us to a nearby onsen, where we delighted in bathing in warm water while snowflakes hovered onto our heads,then to their house for cake and play. That was one of many birthday celebrations that punctuated the trip.

And today, eleven years later, is her Easter Sunday 18th birthday. I’m so, so glad to be celebrating the adulting of our beautiful, caring, politically astute, generous, witty, mature, clothes-making, psychology-loving daughter.

Happy birthday darling woman/girl!

Last Wednesday, our darling daughter Kimi, along with some 70,000 of her peers, sat the first of her HSC exams. Following other endings – the long-anticipated arrival and year-round donning of nickname-festooned Year 12 jerseys; the completion of assessments and major works (what a lot of creativity and hard work those seven words smooth over! the farewells to fantastic teachers; the end-of-term/year/high- school celebratory dress-ups and high jinks (including the mysterious appearance overnight of giant genitalia,etched with salt on the school oval); the fancy-frocked fun of the school formal (see cover photo of Kimi with Noah at the formal – a far cry from the girl who entered kindergarten, below); the very last of each of ber classes; and the beautiful graduation ceremony at which I was delighted to join the hall full of other proud family members, proud of Kimi of course, heart-burstingly so, not as much for the awards she received, as for the gorgeous, compassionate, mature, thoughtful, resilient, creative, inquisitive, feminist, brave, hardworking young woman I have been overjoyed to witness her grow into, proud of all of them for reaching this milestone in the time of pandemics and school avoidance and vaping and cost-of-living crisis and ChatGPT, and to loiter afterwards in the company of Kimi, my sister Sonia (Amazing Auntie to her Nice Niece), and super-carer Anna, meeting some of her nearest and dearest friends – these events mark the final finishing of her school education.

Each of the 70,000 who sat one of the English Papers 1 on Wednesday could tell a unique story about these HSC exams and what they mean to them. For most, like Kimi, their stories would locate the exams at the end of Year 12, representing the culmination of 13 years of schooling, schooling interrupted and shaped by the immense challenges of Covid-19, and (presumably) for most, inflected by sustained hard work towards future dreams.

But their stories would also all be different, shaped by the specifics of: identity, including overlapping broad social categories such as class, gender and sexuality – much more fluid than when I was at school, ethnicity and race – think of the relative privilege of white Anglos, and the grief and hardship faced in 2023 by First Nations Australians, Palestinians and Israelis, Afghans, Persian women, Ukrainians and Russians …), as well as subcultures or communities of interest, eg Goths or gamers, baseballers or Buddhists, Scouts or singers; their educational institutions; support networks, hopefully including friendship groups, teachers and families; the positive or negative effects of “distractions” such as relationships, jobs, those other finishing rituals and extra-curricula activities; subjects and exam timetables; health and dis/abilities; and dreams for the future.

Kimi’s story could include at least three factors that I conjecture are unique to her.

1. For 11 of her 13 school years she has lived with a mum diagnosed with motor neurone disease. Near the end of that first year, she learned from a newspaper report of her primary school fundraiser that MND had an average life expectancy of just 27 months. I didn’t dare hope to survive to see her into high school, and am so grateful that she (aged 12, in her first year of high school) and Densil helped persuade the doctors to keep me alive (On deciding to keep living with MND: A triptych). You can understand I have been quite emosh about being here for her finishing!

2. On her early bus trip to school for her first exam, Kimi walked halfway down the bus,sat down, plonked her backpack beside her and perched her phone – that social lifeline for teenagers, and the rest of us! – on her lap. As the bus took off, she reached into her bag to extract some notes. Feeling the weight shift off her lap, Kimi turned in dismay to witness her phone glide across the bus aisle and disappear through the gap under the bus door. I first heard about this around 9am, when Densil rang to request my carers’ help – he had walked down the hill and searched for the phone without success, and asked if they could use my phone to locate it. Danny did so, and, discovering that it had travelled to near Wyyard Station,marked it as lost and sent a message to Kimi’s phone asking that they call Densil’s number to arrange its return. I was concerned this distracting adventure would add to Kimi’s exam stress. Happily she found the absence of her phone meant she could focus on study for the next day’s exams; also happily, the phone had been found by a kind-hearted person and Densil was able to collect it after that night’s class.

3, The other little distraction Kimi faced going into her exams was that I was in hospital- my fourth emergency admission for this year. Following trips to check out a surgical peg tube and thumbnail resection, episodes of irregular heart rate and low O2 sats, and discovery of a fractured vertebrae and very low sodium which seemed to send me temporarily loopy, this time we called the ambulance because I had chest pain , but stayed (thanks to a timely call from my wonderful GP, Anna and support of neurologist Dom) to sort out recalcitrant nausea and grumbling unwellness that had been troubling me for more than a month. The Hornsby Hospital staff were excellent, appreciative of my regular carers’ expertise, and thorough and caring. I loved having visits from all the family who could make it, and specially dear Kimi, who came to hang out and study in my hospital room on the last few afternoons before her first exam.

I was so pleased that I could come home on that Wednesday. And thrilled that I can be here – in all possible senses – as Kimì finishes school and moves into the next phase of life.

You might think ten years was enough warning to meet a deadline, but I haven’t yet finished writing a piece to mark my MND diagnosis decaversary (still feeling all the feels).

In the interim, here’s some recent content about our project on making videogames more inclusive for people living with MND, with fabulous colleagues Ben O’Mara, Matt Harrison and Natasha Dwyer.

Here we chat with Jeremy Holden for the Connecting ALS podcast https://share.transistor.fm/s/4f9dea18

And this is our presentation for the International Alliance of ALS/MND Associations Allied Professionals Forum, held in San Diego and on the interwebs in December https://youtu.be/5IpU469sEVk

* No squid were harmed in the making of this blog post

Ten years ago when I turned 43 I had no idea that what felt like reduced fitness and cramps when I exercised were signs that my motor neurones were dying and that in that prime of my life I would receive my MND diagnosis. The last week was shittier than most as I was knocked about by a sinus infection and also lost the residual thumb twitch I was using to control my NeuroNode/phone. For a few days I was rendered both headsore and exhausted and impotently incommunicado.

I’m very grateful that smart, intuitive,empathetic carers were on hand and my excellent GP Anna and pharmacist Andrew were quickly on the case. And that my dear, generous Densil and Kimi presented me prematurely with my phancy new phone which they and wondercarer Jack set up for me.

And on Sunday afternoon, Peter Ford, despite flu, spent hours on the phone guiding Densil and Jack to test (and find wanting) various possible NeuroNode electrode sites before settling on the muscle above my expressive eyebrows. So I was able to enjoy making it into this prime – hurrah! – with my beautiful family and some lovely carers.

Now we just have to come up with an alternative to my eyebrow raise of assent so I don’t accidentally order a pizza on my phone when a carer asks if I want a coffee.

I have been a fan of the number nine since, well before I hit double digits, I started to notice number patterns.

I liked how it could be made by placing three light green cuisenaire rods side by side into a 3×3 square, and how that square plus a 4×4 made a 5×5 – the quintessential example of what our brusque but caring, number-loving 6th class teacher, Miss Bryan, was later to reveal as Pythagoras’ theorem in a lesson surely so enchanting that she felt no need to threaten to have our “guts for garters” in her Yorkshire brogue.

I liked how its proximity to the number ten, inscribed in its Roman form IX – one less than X – shapes and simplifies its calculations. Add 10 and subtract 1. Or multiply a number by 10 (by sticking a zero on the end) and subtract the original number. This also leads to the very cool fact – useful for factorising – that for any multiple of 9, the sum of the digits is also a multiple of 9, and you can continue this process until you get a single digit 9. For example, for 3,285 the sum is 3+2+8+5 = 18, and then 1+8 = 9; conversely for 3,287, the sums are 20 then 2, so this is not a multiple of 9 (not coincidentally, a similar trick can be used to identify multiples of 3).

But now, today, I am even more a fan of the number 9. For today – 7 January 2022 – is the 9th anniversary of my MND diagnosis, an anniversary which for so many of those 3,287 days (Leap Years included) I did not expect to make.

I did not expect to make it on that terrible, scorching Monday morning, 9 years ago, when Densil and I were given the news that would bifurcate and dislocate our lives: as we clasped hands and shed tears while the neurologist pronounced those unfamiliar words – motor neurone disease – and told us that ‘typical progress’ was 2-3 years; as the clinic nurse empathetically asked about 6-year-old Kimi and cursed the shit sandwich; as we started to tell family; as we reeled and howled and talked and hugged through that first day of all the stages of grief.

I did not expect to make it the next day, as in its early sleepless hours I started reading, and found not only the wonderful MND association publications for children – which equipped us to gently answer Kimi’s questions that started that morning with enough truth, with the important certainties of love and science – but also numbers. I found life expectancy statistics, the distinction between medians and mean somewhat blurred. I preferred the Australian reported figure of 27 months to the UK 14 months, and hoped with this as the median I might be in the lucky 50% who made it to 27 months (understanding I had the same chance of dying sooner) and didn’t dream I would still be alive in 4 times that.

I didn’t expect to make it as I started to share the news with dear family and friends, exchanging our love and shock and grief and hope and fear. We were embraced with such generosity of loving support: offers of meals and company and fundraising and gifts and lifts and sewing and organising and prayer and immediate and ongoing care for Densil and Kimi; practical advice from those with lived experience or research knowledge in disability and healthcare and superannuation and advocacy and coming out and chronic illness and parenting and bereavement and dying; and MND stories. I found that this thing that hadn’t been on my radar was on the radar of so many friends, with direct experience of MND amongst their loved ones and colleagues and communities. Their stories emphasised reasons for hope, those who had lived longer and remained true to themselves, the large, light-filled, lingering presence of bedridden yet entertaining grannies and still-working, world-changing colleagues. I had to dig for, or leave unspoken, the heartsore tales of rapid progression that often lurked beneath understanding quiet mentions of ‘personal experience’ and ‘other friends’ and ‘family connection’.

I didn’t expect to make it as I met with and quizzed and relied upon my expansive healthcare assemblage. My kind and thorough GP, Anna, who guided my diagnostic journey and unnecessarily apologised for weeping with me when we met two days after my diagnosis, has been steadfast and adaptive in her care, adopting home visits and written communication. My fabulous MND neurologist, Dom, initially emphasised the variability and uncertainty of individual trajectories and a sense of urgency, start your stand-up comedy career do it now before it’s too late: his deep knowledge and warm, personal commitment to his patients and their families has since proved to be literally lifesaving. Early meetings with the first of my occupational therapists, physios, speechies, dietitians and so many other good people who have supported me along the way often included gentle questioning to check that I understood the need for urgency that accompanies this ferocious disease.

I didn’t expect to make it as I became part of the MND community. In my first few days I joined MNDNSW, encountering reassuring advice when I spoke to David on the infoline, and being visited by energetic regional advisor Jo, who urged a flurry of organisation to get supports in place before they were needed and cited advances in genetic research to promote a hopeful ‘never give up’ attitude (but knowing the long, arduous, precarious journey from laboratory discoveries to approved, effective treatments, at least in pre-Covid-19 ‘old normal’ times, I mentally translated this to be hope for future others rather than for me). I started to meet gorgeous people with MND and their heroic families at association events, through mutual friends, and participating in fundraising and awareness campaigns; social media helped to augment these friendships but also to connect with MND families not only in surrounding suburbs and wider Sydney but across Australia and around the world. Apart from its membership requirement, it’s a privilege to be part of this ‘club’: a diverse community of compassionate, creative, funny, thoughtful, beautiful people. The awful flipside of getting to know and love people with MND is the inevitable heartache of losing them, grieving these precious people and for those left behind. As I saw this reality of how quickly MND can take people, regardless of their inner strength or how much they are cherished, I felt no reason that I would be spared.

I didn’t expect to make it as I witnessed my bodily transmogrification. In the nine years prior to diagnosis my strong body had travelled the world, run a half marathon in my first trimester of pregnancy, birthed our daughter, done a 10km ocean swim, completed a PhD and worked as an academic, and so much more. Subtle changes – cramping in my legs and fatigue when I exercised, tripping over my feet, loss of fitness, spasms in my hands – in recent months had propelled me towards my diagnosis. Now the changes rapidly escalated, with increasing fatigue and weakness and reliance on a succession of more and more items of equipment and help to manage less of what I had previously taken for granted. Within 27 months of diagnosis I had completely lost the ability to take a step forward while leaning on a walker, and spent most of my day in my power wheelchair. Densil and I had moved out of the bed we had shared for 23 years so that I could sleep in an adjustable hospital bed: raised to its maximum height, Densil or a carer could pull me into a standing position and plop me onto my shower/toilet commode – soon I would need two carers and a hoist to transfer. I was still reliant on my morning carers or family or friends to get me on and off the loo (cue 1986 song of the year): a suprapubic catheter the next month came just in time and at least addressed number one challenges (I will spare you the details of number two, except to say that I am not the repository of all wisdom) but also marked the end of the pleasure of hydrotherapy. My arms were well past the point of being able to hug my family, shower or dress myself, type on a laptop, lift a coffee to my mouth or sign my name, and my neck muscles could only support my head for short periods; but I could still, then, push my wheelchair joystick, drink from a strategically placed straw, type on a mini iPad, and with elbows braced against my armrests perform a two-armed manoeuvre to press the traffic light button. I could see the direction my body was heading in: I knew I was lucky to have made it through 27 months, and didn’t expect to reach four and a half years, let alone nine.

I certainly didn’t expect to make it as breathing became a struggle. In one of my early appointments with Dom I asked how rapidly my MND was progressing. “Too [alliterative participle] fast” was his short answer, softened with the advice that respiration, nutrition and hydration were the functions critical for life and these could be supported when the time came. Before each MND clinic appointment I spent the night with a fancy pulse oximeter gripping my finger to record my blood oxygen sats while I slept. The respiratory physician explained that respiratory muscle weakness usually manifests initially overnight as dips in oxygen and consequent disruption of sleep, and that in a “typical course” of three years, respiratory failure occurred for the last year. I was oxymoronicly both hyper vigilant to, and in wilful denial of, the accumulating signs that my breathing wasn’t what it used to be: needing my head elevated to sleep, puffing with the exertion of moving, delegating birthday candle blowing, waking tired, waning appetite and consuming my fat stockpile despite my crème brûlée regimen, quietening voice. And deepening dips in my nocturnal oximetry. A couple of months off my fourth diagnosversary, with the need undeniable, I started spending my nights tethered to a bipap machine, which supported my weakened diaphragm by pushing air in and out of my nostrils – a change which improved my physical comfort and undoubtedly prolonged my life but emotionally signified my approach to The End. Within 9 months, after three emergency admissions to hospital in serious respiratory distress, I was reliant on Masky McMaskFace around the clock. In March 2018, we eagerly watched an episode of Australian Story featuring Professor Justin Yerbury, who I had met talking about his MND research before and after his diagnosis with a hereditary variant that ran through his family, and who we learned was still alive thanks to having received a trachie two months earlier – something I had previously asked the respiratory physician about and been told it wasn’t done in Australia. In a subsequent meeting with my GP and neurologist we talked about this possibility – one that Dom emphasised that only a handful of his patients had pursued (I seem to recall a metaphor involving spheres and metal) but that opened the magical potential of making it to my next anniversary and more. We were able to talk and investigate and articulate our sense that life – even in this strange, utterly dependent, deteriorated and deteriorating body – was worth living. Thus, on the third of November, 2018, when plummeting oxygen and blood-poisoning buildup of carbon dioxide forced me into a sleep that was very likely to be my last, as my life dangled on a gossamer thread, my darlings Densil and 12-year-old Kimi when ushered into that sacred, scary hospital conference room, and Dom in a long phone call, told the Emergency doctors that I didn’t wish to quietly slip away, that they should try to resuscitate me. And (thank God, thank Science, thank diligent, expert medical care), after six hours of being on – maybe beyond – the brink of life, I woke up. In the next couple of weeks, of being transferred between hospital ICUs, talking with surgeons and specialists, having precious final conversations in what had become of my voice, our inclination to prolong my life crystallised into a decision to go ahead with a tracheotomy and laryngectomy. Within the week, surgery completed, a ventilator connected through a hole in my neck was breathing for me, I was speaking in the voice of Ryan, I was hydrated and analgesed via an IV drip, I was ingesting isosoy, drugs and coffee through a tube up my nose. I was alive. And making it to nine years was no longer an impossible dream.

As i have been writing this, on and off, over the past month and a bit, I have been feeling grateful for nine years, for my ninth year, for this baker’s dozen last month, for each of these 3321 (see what I did there?) days.

The past year has been a terrible one for so many, in a no-longer-unprecedented way. Despite Ryan’s pronunciation, the effects of Omicron have not been micro. For those of us in the MND and broader disability community, Covid has brought extra challenges and fears – vulnerability to the disease, the health of loved ones and carers, safe access to essential supplies, what happens if we, family or carers become sick or have to isolate, policy settings and rhetoric that dismiss the lives of people with disabilities, availability of healthcare and hospital beds, evaporation of opportunities to carpe diem, compounded mental health issues, and more – with the minor compensation of online delivery and community empathy. But the year also held treasures, amongst them: occasional visits from dear masked friends; Grace Tame, Brittany Higgins and other brave women speaking out; rainbowfication of our Hills Hoist; our excellent MND and videogames team and other research/writing projects; Bruce’s weekly mandalas and lovely nieces’ artworks; Wordle; Ishiguro’s Klara and the Sun, Lohrey’s The Labyrinth and other wonderful audiobooks plus much good radio and telly; joining the Your Story Disability Legal Service Advisory Group; beautiful new dresses (thanks Eleanor); our cat, shorn by the vet as part of – mercifully successful – treatment for paralysis tick, choosing my foot coverings as a preferred cosy spot to nestle (which lost its gloss when, two weeks on, he performed his telltale dance and, tail aloft, peed on me); and witnessing little Elspeth’s delightful explosion of meaning-making during our weekly family FaceTimes and, finally, RAT-proofed face-to-face family gatherings.

The shiniest, richest, most glorious treasure of this year has been another year with my Densil and Kimi. I fell in love with Densil 35 years ago, when we were practically babies, and this year will be our thirtieth wedding anniversary. I still love, like, admire and enjoy him – his wisdom, cheeky smile, eclectic interests, gentleness, astute insights, perfect pitch, care, subversive wit, practical problem-solving, deep intelligence, lustrous locks, world-knowledge, forbearance, quirkiness and creativity. I’m so thankful that I have been able to watch Kimi grow from a beautiful, kind, friendly inquisitive six-year old to a beautiful, kind, friendly inquisitive fifteen-year old. She has transformed from a well-behaved junior primary schooler two years in to a motivated, bright senior high schooler in her second last year; from a reluctant classroom speaker to my superb co-opener of last year’s national conference; from a Frozen and Deadliest 60 watcher to a sophisticated appreciator of Tarantino, Insiders, the Three Colours Trilogy and Mad As Hell; from a recorder squeaker to a grade 8 alto and bari sax funkster; from littlest cousin to enthusiastic big (and not so little) cousin; from a fan of Diary of a Wimpy Kid to a reader of Barthes and Silvey and Honeyman. She is wonderful, they are wonderful.

I know how very lucky I am to have had these nine years.

Nine years of family. Nine years of friendship.

Nine years of learning. Nine years of teaching.

Nine years of social change. Nine years of community.

Nine years of loving. Nine years of trusting.

Nine years of laughing. Nine years of crying.

Nine years of awareness raising. Nine years of celebrating.

Nine years of observing. Nine years of contemplating.

Nine years of writing. Nine years of playing.

Nine years of caffeinating. Nine years of adventuring.

Nine years of hoping. Nine years of remembering.

And amongst all the shit and joy, best of all, nine years of partnering, nine years of parenting.

I haven’t written here for quite a while but I have been busy – at least what counts for busy in this time and this (busy)body of lockdown.

I have had some turnover of carers, with 3 lovely peops heading off to concentrate on careers in social work, architecture and cheese vending, and new people learning the ropes of dealing with my machines that go ping and moody silences, the tricks to safely handling my weak, betubed body, the complexities of my input and output, a new or newly inflected vocabulary, and distinguishing essential from malleable routines.

I have been occupied by some interesting collaborations with excellent people, including a research project about procrastination inclusive video games for people with MND that I will write about in a separate post.

And Kimi and I were honoured to be invited to give the opening address to the biennial national MND Australia Conference, co-organised by MND Australia and MND NSW and held on 3 September. It was such a delight to collaborate on this with my awesome daughter, reflecting on our shared and different experiences of living with MND and distilling what has helped us.

One of the advantages of having “Ryan” voice my words is that he can motor on regardless if I find myself laughing or blubbering, both of which happened as I watched Kimi’s mature, poised, thoughtful, generous performance. I wish I hadn’t brought MND into our little family, but I couldn’t be prouder of Kimi and Densil or more grateful that I have had the opportunity to witness Kimi’s transformation from that shy, bewildered 6 year old to this sensational 15 year old. I greatly appreciate everyone who has supported us along the way.

As Kimi articulated so perfectly:

MND is hard. It’s furious, and fierce, and unrelenting. But, even more so, are we.

You can watch the video of our presentation here: https://youtu.be/wMc6oKAIwrQ

The conference fell on the 34 month-versary of my perilous trip to hospital with catastrophic respiratory failure. I wouldn’t have been able to share the experience of doing the conference talk with Kimi, or the last 34 months, if my life hadn’t been saved that day and if I hadn’t been given the chance to have a tracheotomy and laryngectomy so that a ventilator can breathe for me.

After my trachie I was approached by Gabe, a beautiful, determined woman with MND who was exploring having the same procedure so that she too can stay alive with her closeknit, beloved family. Gabe asked questions of me and other ventilated MND people over email, communicated with Dominic Rowe and other experienced doctors, and she and her carers had video calls with me and mine. She did her research, and she was really well informed and sure that this was the path she wanted to take.

I think often those looking in at the MND experience must consider it intolerable. And don’t get me wrong – it’s not the life that anyone would wish for, and I recognise that many – perhaps most – come to a point where they don’t want to extend their lives with MND.

But Gabe and I also both know that despite our malfunctioning bodies and needing carers to tend everything from our machines to our euphemisms, life can be wonderfully worthwhile. We can still explore our rich inner worlds; appreciate beauty and humour in the everyday; use technology to communicate, connect, create and for leisure; maintain relationships and contribute to our communities; and delight in our loved ones. We can still love and be loved as parents and children, partners and siblings, aunties, nieces, cousins and friends.

Tragically whereas my wonderful neurologist supported and facilitated my choice to have this life-saving surgery, Gabe has faced a very different response. Despite asking and arguing and having the Human Rights Commission on her side, Queensland Health are denying her the surgery.

You can watch Gabe’s story in this A Current Affair feature for which we were also interviewed: https://youtu.be/0RUJs8SU_iw

And you can support her quest by signing this petition created by one of her friends: https://www.change.org/p/i-support-gabe-s-surgery-choice-and-her-right-to-live

This weekend Densil and I (plus my carer) had a rare and beautiful outing to consider our next investment celebrate our notching up of 29 wedded years.

29 years of wedded love and walking up the world’s steepest street and “do you want dinner?” and laughter and thesis slog and multimedium jewellery making and music and weekend sleep-ins and Christmas Eve Taizé and family and San Fran eclipses and surprise award ceremonies and adaptation and getting left behind on islands and (not trying then trying and trying and wonderfully) making an excellent person and companionship and bridge-crossing for reconciliation and Murray River camping (intense!) and grief and Mad Hatters Bushbanding and Bulgarian fat stew and entertainment and Spring bulb resplendence and Godzilla and parenting and scrap metal furniture and “You can smirk in Hell” and uncertainty and dinner with friends and teatowel-wrapped lebkuchen and encouragement and sound art installations and cockatoo communing and creativity and parent teacher interviews and concert hall tours and adventure and picnics in the park and train commutes (getting off at Redfern) and compromise and farewelling loved ones and Lawson grocery shopping and communication and theatre gallivanting and Pescal and sacrifice and sax/bass/keyboard jamming (lagerphone anyone?) and voting yes and aging and Neufchâtel clockwork and meeting new niecephews and silliness and hanging out washing and Bluey the (purportedly male) ovulating budgie and hope and pizzabeerTV nights and cherry blossom and teamwork and (insert swear words of choice) MND and family birthday celebrations and complacency and Escalade pot-smashing and Hanshin Tigers baseball and joy and Canyonleigh walks to the dam and finding Super Dickmann’s in Paris and despair and media appearances and swell ferry trips and intimacy and the Good Weekend quiz at Roger Bakery and long marking sessions and patience and Bright starlit nights and emergency hospitalisations and disruption and the snow-buried Aomori art museum and water’s edge penguins and comfort and an enigmatic pet kumara and beginner Italian/Japanese classes and peace and Pitt St neighbourhood group and Spohr’s Four Paws poetry and bliss.

(Photo of cockatoo trying to deprive me of privy privacy)

Last week included the usual stuff – beautiful, fun, fascinating conversations with my clever loves (how good is the year ten curriculum!); background thinking for some writing projects; a demoralising backlog of tedious admin that speaks, in part, to the huge difference between an excellent NDIS planner who understands my situation and one who doesn’t; dedicated carers and machines working round the clock to make up for my body-that-can’t; musical accompaniment by Densil on keys and Kimi on sax; appointments with health professionals; and an unhealthy amount of screen time (don’t tell the kiddies), often accompanied by wonderful ABC audio or podcasts (currently the gobsmackingly compelling In the Dark).

Plus, these things.

Monday: a power outage stops the thermomix mid-flight, revealing that tepid mushed lentils, Brussels sprouts and zucchini makes a palatable dinner by candlelight. Our cat, who normally tries to poach vegetarian morsels from Kimi’s plate, disagrees.

Tuesday: I finish watching West Wing, all seven seasons of which I had missed back in the day. It has been a soothing, deftly crafted antidote to recent American politics, with an unexpected neurodegenerative subplot.

Wednesday: Anne and I, doing the cryptic crossword, deduce that a titlark is a kind of bird and resolve to exploit this fact in Scrabble games and conversation (see what I did there?).

Thursday: Alan Kohler’s casual incorporation of the verb “spifflicate” into his ABC News finance report gave me much joy. As a kid I thought Dad had invented this (never realised) threatened punishment, which, accompanied by air-tickling fingers, elicited paroxysms of giggles.

Friday: Sonia and I watch my carer’s beautiful film school major work and I cry and think about lives and stories; I note the date (12/02/2021, or more succinctly 12/2/21), but decide I don’t have to research the history of palindromic (and as friend James pointed out, ambigramic) lunar new years.

Saturday: not for the first time I received my carer’s feedback on the state of my nether regions with momentary regret, before reminding myself that my pre-MND body also couldn’t see some parts of itself. Later, catching up on the week’s Tegan-captained Coronacast, I heard my lifelong and excellent friend Julie Leask giving lucid, constructive, evidence-based advice about vaccine communication, and I fondly remembered our Barrie St adventures.

Sunday: as my two carers uncovered and cuff-pressure-checked and shoulder-massaged me from sleep I became conscious of the date, the eleventh Valentine’s Day anniversary of Dad’s death from mesothelioma. My grief has mellowed such that I am grateful to have so many happy memories and be aware of his lasting imprint on my life. As I was fed breakfast on the commode (you know it makes sense) I joined the end of an in(ter)continental zoom call with schoolfriends and heard about Nat’s life in lockdown Toronto and Sonya’s and Halfy’s reliance on communications technology. We acknowledged Dad during our weekly family FaceTime – my remarkable tech-savvy, community-building mum and Lexi with her digital-native, increasingly verbal (actually nominal) 420-day-old littlie in (hopefully snappy) lockdown Victoria; Sonia with cat and us in Sydney. I wondered how my soft-hearted, gregarious, self-confessed Luddite Dad would have coped with this age of Coronavirus. And I wonder what effect it will have on my niece and her generation.