Today is the second anniversary of the day I scared the shit out of my family (not literally, though I don’t know if the same can be said for me), by having a six-hour brush-and-comb with death. You can read about it and the decision that ensued here: On deciding to keep living with MND: A triptych

Today I am grateful.

For the family, carers, ambos, doctors and nurses who saved my life against the odds.

That my beautiful family wanted me to stay around, even with the sacrifices that meant and though I’m not the person I used to be.

That my neurologist, Dom, and his team bust their guts to support their patients to live their lives on their terms.

That I was able to have a trachie, so that a ventilator can keep me alive.

For the team who cared for me for 9 1/2 months in Macquarie University Hospital, and the friends I made.

That my ICU stint preceded Covid-19, so my mum and sister could visit from Victoria, and family and friends co-occupied Room 103.

For my wonderful, diverse team of carers, who enabled me to come home, including two who have recently had to step aside to deal with life, and the newest recruit, a young nursing student who is mercifully adept in her first caring role (if anyone nearby is looking for this kind of work let me know).

For their contributions to my ever-expanding lexicon for body parts that dare not bear (or bare) their proper name.

For being home on days like today – glorious spring sunshine brightening the room and entrancing our cat to his favourite warm windowsill.

For two years of family and writing and music and games and friendship and crosswords and tv and humour and coffee (better through a straw than an NGT) and radio/podcasts and occasional outings.

That in (tragically) longer than many people live with MND, deterioration of my facial muscles hasn’t yet led to losing my ability to eat Jaffa cakes and smile.

For my excellent extended family, in a week where we’re fondly remembering my Uncle Rob, who died peacefully on Saturday after a long illness, and thinking of his three kids and their families.

That I have been able to continue on the MND NSW Board, had unexpected opportunities to contribute to MND advocacy and storytelling (no-one expects the Royal Commission! https://www.croakey.org/for-people-with-disability-the-pandemic-has-brought-hardship-and-neglect-commission-hears/) and sociological thinking (Art tickle) despite losing my voice box and having less functional muscle than a decrepit teddy bear.

That amidst the terrible tragedies of Covid-19, the long, difficult, generous lockdown (plus compulsory mask-wearing) endured by Victoria has finally resulted in a string of “double donut” days, and yesterday I was able to exchange phone screen-mediated smiles with my gorgeous 10-month old niece as her parents carried her to meet other babies in a Melbourne park.

For the brave, resilient class of 2020, including my brilliant niece.

That I am part of the amazing, nurturing, grieving, sharing, encouraging MND/ALS community, including such truth-tellers as Team Reilly:https://youtu.be/BLhaYOOpNXc

That the dedicated work of many MND researchers around the world, including the team at Macquarie, is giving us hope (coincidentally this little video of us seeking support for their neurodegenerative diseases biobank was emailed today:

https://youtu.be/I1YdDy6Pzr4 (Jack and Emma filmed us; video by Joanne Stephan, Macquarie University)

For the ongoing love and support of Densil, Kimi and me by our family, carers and friends – visits, messages, plant cuttings, mandalas, jokes, prayers, meals, dress-making, chess games, science t-shirts, tick extractions, freshly laid eggs, and more.

For two more years with my loves, my Densil and Kimi, their love, teasing, music-making, interest in and knowledge of the world, adaptability, creativity, cat-communing, compassion.

For this evening: of sitting together, with my kind, attentive carer feeding and suctioning and taking my piss; of beautiful Kimi arriving home after band practice and enjoying chatting about her day, the relative merits of ice-cream and salad, and which of her clever lines qualifies as a good joke, before disappearing to her room for some combination of homework and secret teenager business; of watching two hours of ABC coverage of the impending US election, and hoping to God they don’t re-elect Trump; of the loud miaowing in response to the 8pm question: Do you want dinner?

Today, I am grateful that two years ago, after six terrible hours, I woke up.

On Thursday it will be a year since I arrived home from my long stay in hospital (Goodbye Room 103). I don’t need to tell you it has been quite a year!

For many it has been a devastating and traumatic year. Horrific, climate-change-fueled bush fires raged across large swathes of drought-desiccated Australia, threatening and taking lives, livelihoods, houses and habitats, and spewing toxic smoke. And then there was Covid-19, which, along with political responses and mitigation strategies, has also been wreaking havoc with health, lives, jobs and economies/societies.

Of course, I have not been immune to the impact of fire and pandemic. Friends living near the bushy fringes of our suburb were evacuated from a fire that had Kimi’s school in its sights; Mum was twice evacuated from her regional Victorian town; I couldn’t smell the smoke (as I don’t breathe through my nose) but could feel its effects on my lungs if the house was left open; and I grieved for friends who lost property and beloved animals, for strangers who lost loved ones, for creatures and bushland.

I have already written about my experience of Covid. You can read this piece published by the ABC (https://www.abc.net.au/news/2020-05-17/coronavirus-lockdown-ventilator-icu-motor-neurone-disease-help/12246700). And I have written and (with the help of my mate Ryan) robotically read a statement for this week’s special hearing about Covid-19 by the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. The hearing will be live-streamed on the Commission’s website, starting 10am tomorrow (Tuesday) and I am scheduled to appear at 2pm on Friday: https://disability.royalcommission.gov.au/

Even though this has been a strange and tragic year for the world, it has been a special year for me. A year of being alive. A year of being home. A year of being with my gorgeous family. A year of being a Mum, a wife, a daughter, a sister, an auntie, a friend, a third-rate cat cushion. A year of being cared for, and co-generating jokes. A year of coffee and cake. A year of writing, notably this Art tickle.

And I’ll end this post here, so I can get back to writing my talk for next week’s A world without MND webinar, a live update from Macquarie University’s Centre for Motor Neurone Disease Research, 6-7.30 pm AEST, Wednesday 26 August. Register https://event.mq.edu.au/world-without-mnd/registration/Site/Register

A couple of posts ago I mentioned that one of the delightful writing processes occupying my time was a collaborative health sociology journal article with my old colleague and friend, Karen Willis. It has now been published* and is available for your reading pleasure via this link (free until early September):

https://doi.org/10.1080/14461242.2020.1789487

We discuss:

• how I became a health sociologist and my diagnosis with MND;
• sociological work on meaning making and how reading and ideas such as ‘biographical disruption’ and the (Covid-19-friendly) ‘new normal’ have helped me make sense of my diagnosis;
• connections between my research and my experience, and specially how our work on ‘health care capital’ has enabled me to think about the unequally distributed and variable shittiness of dealing with MND;
• the way communication skills, empathy and patience complement clinical expertise in good health professionals and carers;
• the importance of communications technology in remaining a social being and of advocacy and support organisations for people with MND;
• the intended and unintended consequences of language and why I prefer to think of myself as an MND activist-pacifist (or passive activist) than an MND warrior;
• the ways in which a diagnosis like MND foregrounds and shifts our relationship with time; and
• in conclusion, some brief, suggestive thoughts about parallels between having MND and the collective experience of Covid-19.

* the formal deets:

Kirsten Harley and Karen Willis (2020) Living with motor neurone disease: an insider’s sociological perspective, Health Sociology Review 29(2): 211-25, DOI: 10.1080/14461242.2020.1789487

(I wrote this on 7 and 8 July, 7 1/2 years – 90 months, and counting! – since my MND diagnosis, and 6 years since my medical retirement).

Six years ago we sat around Mum’s dining room table, feasting on muesli with yoghurt and locally grown berries and vegemite toast and coffee, supplicant beagle at our feet. It was 18 months since my diagnosis with motor neurone disease, and as we gazed out at the glorious misty valley and distant snowy peaks, Nina Simone’s smoky voice filled my head. I was fee-ee-ee-eeling good.

We were about to get in the car and head back to Sydney, aware that the trip to Bright would get harder as my disease progressed, unsure how many times we could get there, unaware that I would live to see driving across the Murray outlawed against a future pandemic (we’re thinking of you, Victoria). We headed home so that I would be there for my last day of work before my medical retirement.

When I was diagnosed I was about to start a three year contract as a lecturer in Sydney University’s then Faculty of Health Sciences. I’d been excited about making a start on our new research project on health system navigation, teaching research methods and health sociology, continuing to support my wonderful PhD students, and working with Gary on our book about Australian sociology, with Kris on our edited collection about teaching sociology, and with Nick on editing the Australian Sociological Association newsletter. I was blindsided by this diagnosis, with typical life expectancy odds that meant my contract might well outlive me, and uncertainty about when I’d lose the ability to type, to walk, to catch the bus, to speak. I could see that working would become increasingly difficult, impossible, but I wasn’t sure when.

I was sad about the prospect of giving up work. It was work that I was lucky to (mostly) love. But I was (and am) lucky to also have my gorgeous daughter and husband, who I wanted to spend precious time with, along with lovely family and friends. And I was also lucky that I worked in just the right Faculty, with understanding colleagues and managers who promised to support me as long as I was able to keep working, workplace adjustments and generous sick leave, the opportunity to have an ongoing honorary role, and a superannuation fund with an inbuilt Total and Permanent Disability Pension. So my lingering question, given the uncertain timing and specific shape of my MND trajectory, was not whether to “retire” but when. (I know I am writing this at a time when many people, including university comrades, have lost or fear losing jobs or livelihoods: my heart goes out to you).

I sought advice from quite a few people on this question of timing. Several people said I’d know when it was time: to trust my gut. The other lucid piece of advice came when we visited dear friends Pauline and Susan for lunch. Susan stayed behind to keep me company as I was too tired and slow to join Pauline, Densil, Kimi and four-legged Cino on their postprandial romp around the bay. I remember articulating my dilemma: if I knew that I only had another year or less to live, resigning immediately to spend all my time with my loved ones would be a no-brainer; but what if I made the mistake of retiring aged 45 and then was one of the outliers with ten or more years to live? Susan wisely reminded me that most people anticipate long retirements, and this happening for me would not be such a terrible outcome!

And now, six years into my retirement, seven and a half years since my diagnosis, I can fully appreciate the value of both pieces of advice, and am happy about the timing of my retirement and so grateful for the life I have had since. I have written before about much of this: the sweet, sweet joys of being alive to watch our delightful Kimi grow, and growing old-er with my darling Densil; welcoming our Lucky Tiger, Torakkii, as a purry family member; wonderful families and friends who have bestowed a treasure trove of tangible and intangible gifts; joining the life-giving MND community of families, clinicians, researchers, volunteers, supporters and advocates, including many beautiful people who have died too soon; being given fun, empowering opportunities to share our story; fabulous holidays, excursions, and familial and community celebrations – golden memories; the incredible perspective-giving experience of having my life saved and a very long stay in ICU; and more.

And on these two anniversary days, how am I feeling?

Physically, there’s the pain of immobile joints and sharp bones protruding through atrophied muscle, the discomfort of a mysterious blister and eyelash adrift; dampened by pain meds and offset by heat packs, gentle massage, and delicious scalp-scratching hair brushing.

But existentially …

My carer-in-training is learning to read my facial cues and effortlessly joined in our running gags about open museums and lotteries

My sister Lexi sent a gorgeous video of her 6 month old’s feet exploring Bea’s silky fur and feline forbearance

I’ve been wearing comfortable new dresses made by Eleanor, geometric gumnut-print cotton and malachite marino

I’ve been enjoying my own gogglebox experience as the family watches TV, appreciating Kimi’s curious questions and Densil’s informed responses about what’s playing out on the ABC News and the history behind Operation Buffalo, and their critical analysis of the music on Masterchef

Dahl. And sticky date pudding. With cream

I’m proud that Karen and I sent in final corrections for our Health Sociology Review article, ‘Living with motor neurone disease: an insider’s sociological perspective’, and I have started a new writing project

Collective maths puzzles

Both my most recently saved phrase, “I fart in your general direction”, and our emoji stickers have proven to be versatile

Densil and Kimi returning from a walk with a single white jonquil from our garden

Watching Torakkii share affection with my loves

Birds flying high

Sun in the sky

Breeze driftin’ on by …

And I’m feeling good.

Today I have been home for 290 days – the same amount of time I was in ICU!

No-one expects the Spanish Inquisition. And I wasn’t expecting my first months home to include an apocalyptic combination of bushfires and pandemic, or what may be revolutionary protests against racist violence and injustice. These have been intense and heartbreaking times for our world, but nonetheless times when I’ve wanted to be in this world, and super grateful to be home.

I haven’t posted anything here for a while, mainly because I have been doing writing of a relatively unbloggy nature.

Actually, a fair chunk of my writing always has a distinctly prosaic bent: listing supplies we need from the chemist, asking carers to move a tickly hair off my cheek, emailing about details of my carer roster, describing symptoms to my GP, ordering groceries, introducing trigonometry mnemonics, saying good night. My admin writing load has been boosted recently as I prepared for my 6-monthly NDIS plan review meeting, with a new coordinator of support and a new occupational therapist. And we have been training a new carer, requiring me to explicitly spell out instructions.

There have been a few other writing and other projects that have been keeping me busy since I last wrote for the blog.

On the appropriate May day I thought (and wrote) motherhood thoughts. And ate these delicious scones made by Kimi, which was not only a delight in the moment, but a connection to remembered moments. Devonshire teas at countryside cafes, when the biggest challenge of going away was getting all our marking done so we could switch into holiday mode. Our Blue Mountains honeymoon. Dad asking for extra cream because he was deprived as a war baby.

I have also been enjoying working on a health sociology journal article with my old colleague-friend Karen. There is something exquisitely satisfying about the process of sorting out thoughts and turning them into words, and watching the piece of writing form as it passes back and forth between us.

And I wrote this piece for ABC News:https://www.abc.net.au/news/2020-05-17/coronavirus-lockdown-ventilator-icu-motor-neurone-disease-help/12246700

I always celebrate getting older (as you can see A 50th birthday invitation) but wasn’t particularly excited about turning 51. However my gorgeous Kimi and Densil surprised me with one of the best presents ever, a beautiful book they made for me.

Its pages of poetry, drawings, music and puns speak of our long relationship and how well they know me, each one a personal, humour-filled tribute to my passions and our shared life together. I don’t think I will ever tire of looking at it.

(Knock knock. Who’s there? Europe)

And I have been dancing! In lieu of conventional MND week fundraising activities, Australia’s MND associations conjured up a campaign suitable for the Covid-19 environment, Australia Moves 4 MND #AM4MND. My sisters and I heeded the call and reformed Harley’s Angles (not a typo), pledging to dance daggily each day for a month.

It turns out that dancing with your face is heaps of fun. I’ve been brow boogie-ing to Bowie, eye-rolling to “I’m too sexy”, syncopated smiling to Simone and doing the facial fandango to “Fernando”. And I’ve been jiving along as Densil and Kimi jam. When Sonia came for her first visit in ages, we had to celebrate by dancing together. And some of Lexi’s dances have been accompanied by her baby and chickens (not at the same time).

Our pledged month has finished but I’ve decided to keep wiggling my face every day. And we’re very grateful for your generous donations to MND NSW:https://www.am4mnd.org.au/my-fundraising/79/harleys-angles

Thank you!

I know many of you are feeling the loss this long weekend, of church services and holidays, Easter and Passover meals with family and friends, and trips to the Easter Show. So are we. (I was particularly looking forward to seeing Kimi’s first entry in the Arts and Crafts exhibition, but their loss is our lounge room wall’s gain).

But as someone who feels particularly vulnerable to the threat of Covid-19, I want to say a huge thank you to everyone for giving up physical closeness and togetherness for the sake of protecting our community. I haven’t wanted to take precious time from busy – themselves vulnerable – health professionals to quiz them about the extent to which my MND-paralysed, ventilator-dependent body would be more likely to succumb to this Coronavirus than a typical 50-year-old’s, but I assume it is non-trivial. The reported Covid-19 death last month of Craig Ruston, a 45 year old dad, less than two years after his MND diagnosis, gives weight to these fears.

My family is made more vulnerable because I am dependent on a team of carers to do everything for me – from hoisting me out of bed to wiping my eyes (and arse), from feeding me lunch to suctioning my airway clear, from keeping my comms technology charged to repositioning sore joints at 3am. It’s impossible to be isolated with this team of nine carers who work shifts in our home, or to keep 2 metres away from the people who are washing my charmpits or tipping condensation from the tube that pushes air in and out of my lungs. The absence of paid sick leave that is a shitty fact of life for casual workers becomes a frankly dangerous disincentive to staying away and waiting to be tested if they develop symptoms. And it’s best not to contemplate what would happen if infection of a team member or their contact necessitated all of us quarantining.

Like others in the MND community I have a particular interest in the flattened curve. I want ICU beds to be available not only for the fraction of people contracting Covid-19 who need them, but for others needing hospital care to give them a shot at staying alive. I have been one of those people several times in my seven years with MND, some times with a little notice, such as when I had a supra pubic catheter inserted just before I lost the capacity to stand up from the loo, even with help; more often catapulted in by a respiratory crisis.

My most recent ICU ‘holiday’ started with losing 6 hours to near fatal carbon dioxide narcosis (which, I believe, Covid-19 can also cause), continued with a life-saving tracheotomy and laryngectomy, and finished with a long, slow period of recruiting and training carers (On deciding to keep living with MND: A triptych). That 9 1/2 months, along with my 87 months living with MND, have turned out to be good preparation for the current restrictions. Being physically unable to touch my face with potentially contaminated fingers isn’t the only benefit of being locked in during lockdown. I have learnt to appreciate the gift of life, to find pleasure in small things, to accept derailment of plans, to adapt, to live in the present, to be grateful for (immense) kindness, to connect with others online, to be patient, to cope with loss of control, to try to make the most of each day, to forgive myself when I fuck up, to welcome help, to laugh, to manage confinement – to Room 103; my immobile body, to trust, to view modest outings as a treat, to enjoy the life of the mind, to know how wonderful it is to be home. I know how much my beautiful family loves me, and I love them. My heart goes out to those dealing with recent MND diagnosis – a mortality rate of 100% – in this time of isolation. Please spare a thought for those trying to process this devastating news now, forgoing closeness and hugs when they are most needed, missing out on what might be their last opportunities to swim or work or go to the pub or attend family weddings or travel, making memories for their kids in the shadow of what will become our global collective memory, not able to meet face to face with other people with MND or MND association advisers, contemplating death at a time when funerals are limited to ten people.

And so as a potential beneficiary I say thank you to everyone responding responsibly to this novel Coronavirus. Thank you to our political leaders working together to make difficult decisions (and a gold star goes to Jacinda Adern). Thank you to healthcare workers for doing what you can to minimise mortality: I hope you can be safe. Thank you to health communicators and broadcasters like Julie Leask and Darren Saunders, Norman Swan and Tegan Taylor (Coronacast), Leigh Sales (7.30) and Hamish MacDonald (Q&A) and their teams for constructive information and interjections. Thanks to essential workers for providing care, teaching, producing food, making masks, delivering pizza, researching, selling toilet paper, troubleshooting technology, first responding, collecting garbage and more. Thank you to those who are finding themselves or their businesses reliant on welfare: I sincerely hope that our taxes are raised and our safety net widened and permanently strengthened. Thank you to comedians, musicians, writers and actors for spreading joy. Thank you to everyone who is being kind to those around them. And thank YOU, this Easter, for staying home.

I couldn’t be prouder of our Kimi, or happier to be alive.

Birthdays – indeed life – in this time of Coronavirus aren’t what they used to be. Like most teenagers, she misses her friends like crazy, and was sad as her full schedule of activities and events was cancelled, but she is handling this iso-plus-mask regime with her usual cheerfulness, empathy, resilience, humour and style.

Kimi was remarkably magnanimous when I had to cancel her 5th birthday party because I had pneumonia; I still felt the need to assuage mother-guilt by bunging on a rainbow extravaganza the following year. A strategic game of ‘sleeping lions’ provided a few minutes’ reprieve from a hallful of sugared-up primary schoolers.

A few months after my MND diagnosis we went to Japan, where the heavens conspired to deliver an unseasonal dusting of 7th-birthday-cum-Easter-Sunday Spring snow, and each meeting with friends became a tanjoubi celebration. We had planned a small expedition to Luna Park on our return to Sydney, but (in today’s corporatespeak) had to agilely pivot, replacing rained-out rides with birthday cake in the bar.

Kimi’s Guide-leader Aunty Anne and cousin Susy hosted a ‘messy’ 8th birthday party, in which several games featured chocolate and donuts, and the kids painted pots and took home daffodil bulbs. For 9, we took a handful on a mystery adventure: train to Milsons Point, a scoot round Coney Island (Kimi’s cousin Hannah stepping in as wrangler while I awaited an undignified rescue from a toilet floor topple), ferry to Circular Quay, ‘Is it ice cream time?’, the scale model of the city under Customs House’s glass floor, an amble past outdoor sculpture installations, and the surreptitious maths puzzle of setting the girls loose in a lolly shop with a lolly bag budget.

We continued with small groups for the next few years. Double digits were celebrated by traipsing off to the local pool, then compensating by scoffing pizza. The following year we had ‘sophisticated’ takes on kids party games: ‘pin the tail on the donkey’ wearing upside down glasses, pass the parcel on the trampoline, musical whoopie cushions.

With high school (and my tethering to a bipap machine), Kimi and her few-days-older neighbour-friend took to organising their own combined parties. For 12, I was able to contribute feline themed party favours, and the group negotiated the wheelchair inaccessible journey between next door and our place so I could be present for the cake. Kimi became a teenager five months into my stint in ICU. A wonderful collaborative effort by hospital staff enabled a family escape to the city to see Tim Minchin’s comedy show. But I wasn’t involved in the birthday party with friends, which Kimi reported as ‘chillaxed’.

And now she is 14! Kimi opened her first present before online-school at my bedroom door, as carers started getting me up. A carer brought home made banana bread. Deliveries from local businesses arrived at fortuitous times, so that Kimi emerged from her bed/class-room to a lounge room festooned with balloons, and later birthday cake. There were more presents (and apologies for the gift voucher offering at best delayed gratification), and lovely FaceTime happy birthdays, cards, drawings and messages from others in iso. Densil, as always, took photos, and marked her height on the door frame. No face-to-face time with friends, but I trust Kimi knows how special and loved she is. Happy 14th!

Part of the advice for dealing with social isolation is to practise a hobby. Our cat has adopted unboxing.

Also, those wondering how to celebrate special occasions in this time of COVID-19 might wish to adapt what I did last year for my 50th birthday, in the midst of my long stay in ICU: A 50th birthday invitation

I was greeted with a beautiful, creative, diverse display of loving community, some of which is catalogued here: Thankyou!

After my morning ablutions one carer pushes me, enthroned on my commode, while the other follows with the attached vent stand in a stately procession down the hallway to the lounge room. Via a complicated series of tucks and leans and pulls and pushes a sling is arranged around me and I am hoisted up so that my head reaches the dizzying height it used to when I could stand. Whilst thus suspended, one carer crouches to “freshen up” and apply cream to my undercarriage then pull the back of my dress forward to cover my derrière; the other is tasked with carefully watching my face in case the movement affects my head position or breathing. I often wonder what is the appropriate facial expression for this overly intimate situation, and whether my face is adopting it.

During this morning’s levitation I watched our cat as he sprawled on the carpet and performed his own private ablutions. He suddenly realised he was being observed and his face immediately transformed in a way that reminded me of the meme above. I’m feeling the feline affinity, and will attempt to emulate him tomorrow.