Off the streets

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

29!

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.

Glimpses

(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.

Eight precious years

On 7 January 2013, our Prime Minister was Julia Gillard, who would “not be lectured about sexism and mysogony by [that] man”. Macklemore and Ryan Lewis’s “Thrift Shop” topped the ARIA singles chart. Barrack Obama has been elected for a second term. A novel coronavirus, MERS, had been found the year before, and had killed a handful of people. On that day, any typical day, two Australians are diagnosed with motor neurone disease and two Australians die with motor neurone disease. On that day, that particular day, I was one of them.

Since then I have lived in this world for eight years, eight precious years.

    Year one saw the brief second coming of Kevin07, to be replaced by Tony Abbott, who gifted us with “the suppository of all wisdom”; the end of analog TV, which we were imagining back in the nineties; a large dog masquerading as a lion in Louhe, spawning jokes about the shih tzu; and the global screening of I AM BREATHING, the poignant doco about Neil Platt’s final stretch for MND awareness day.
    In year two Prof Maryam Mirzakhani was awarded the Fields Medal for her work on complex mathematics; knighthoods were introduced with the bonza choice of Sir Prince Phillip; beautiful, puzzling game, Monument Valley, was released; and the game-changing ice bucket challenge for ALS/MND made our hearts sing.
    Year three featured the arrival of Netflix; Matilda, the spectacularly joyous musical; Malcolm Turnbull sans leather jacket; Australia’s bizarre yet welcome inclusion in Eurovision; a black and blue or white and gold dress; and Tim Minchin and the SSO’s evocative depiction of MND in the Fading Symphony.
  • Then year four brought the 2016 Rio Olympics, reminding me of our holiday there four years earlier; the Census that didn’t quite go as planned; Pokémon Go; Trump’s election and the rise of the pussy hat; and the launch of the Deloitte Australia report on the economic cost of MND.
  • In year five we got covfefe, La La Land Moonlight, the televisual Handmaid’s Tale, marriage equality, the magpie’s victory over the “bin chicken” in the Guardian’s inaugural bird of the year poll, #metoo, and Prof Justin Yerbury was awarded MND Australia’s Betty Laidlaw MND Research Prize.
  • In year six: Greta Thunberg delivered her passionate address to the UN climate change conference; those young footballers were rescued from the flooded cave in Thailand; I dreamt I saw the lunar eclipse on the night of the century’s longest lunar eclipse; Kim Jong-Un crossed the DMZ; and Fight MND held its fourth Big Freeze at the G.
  • During year seven we saw banning of the Uluru climb, confident claims that Australia was “back in black” celebrated in a Liberal Party mug (withdrawn from sale with 2020 hindsight), the devastating Australian mega-fires, popularisation of the question “Does it spark joy?”, Jacinda Adern’s shiny leadership and beautiful community compassion in the wake of the horrific Christchurch murders, the fifth Firies Climb for MND, inspired by the magnificent Adam Regal.
  • Year eight featured Covid-19 (what a lot is captured by those four syllables), the gracious concession ugly decline of the orange one, further impetus to the international Black Lives Matter movement, Parasite, Sophie Townsend’s stunning “Goodbye to all this”, and MND Australia’s creative Covid-friendly fundraiser, Australia Moves 4 MND.

On 7 January 2013 I could move.

The day before we had driven home from beautiful holidays where I slept with Densil in a tent, walked through the bush, swam with Kimi, carried shopping, sat in a fast-flowing creek, stayed up late playing cards, and hung out the washing. On that day I got out of the car, stepped onto the kerb, walked into the lift and pressed the button for the second-floor neurology office.

Since then I have had eight years of moving, eight precious years.

  • During my first year: I walked with a stick (skipping queues at Tokyo Disney Sea), then walker, and was pushed in a wheelchair for long walks, at the aquarium, airport, Walk to D’Feet MND; I got in and out of bed, cars, seats, buses, trains, the pool, with help; I hugged, scratched, lifted, turned pages, tugged sheets; I started riding a “Cool!” mobility scooter for school pick up; I (approximated) swimming and aquarobics, floated over the Great Barrier Reef, was liberated by the warmth of the hydrotherapy pool; I was helped up when I fell.
  • During year two I walkered short distances, rode my mobility scooter on the train (grateful for station lifts), sat in our MNDNSW raiser recliner, and was pushed around. I transitioned to my power chair in time for our cruise and on my last flight was glad Ellie and Jo could help when airline staff used trial and error to fit it on the plane. Lynne helped with a local pool variant when hydrotherapy finished and we recruited a hoist or ambos when I fell.
  • Year three: I lose the ability to take a few supported steps, and then to remain standing, so am hoisted between bed, commode and wheelchair, making up for never having got my licence with my new driving skills. My sisters and their families take us for my last glorious float in the ocean, thanks to the accessible pool at Watson’s Bay.
  • During the fourth year I got new, more sensitive wheelchair controls for my weaker fingers. I became reliant on others to press traffic light buttons: when someone appears on the opposite side of the road I try signaling that I need help; unfortunately they probably think I am trying to call them a wanker!
  • For year five someone else drives my wheelchair from behind.
  • Year six: in ICU I spent most of my time in bed and having a shower was an adventure.
  • In year seven, we managed a lovely day trip to Pauline and Susan’s, and caught the train into town for the Firies Climb.
  • At the end of year eight I can still move my face – smile, blink, mouth words, dance with my eyebrows – hurrah!

On 7 January 2013 I could communicate.

I told Kimi stories, enjoyed conversations and jokes with family and friends, ordered coffee, gave classes and talks, scribbled notes as I read, went to meetings, filled out forms, exchanged emails. I loved writing, the (at best) beautiful, almost magical, process of finding just the right word, and watching meaning become clear as you fashion and refashion sentences and paragraphs. That day, I answered the neurologist’s questions as she edged cautiously towards delivering the diagnosis.

Since then I have had eight years of communicating, eight precious years.

  • Year one: with my strong voice I have many profound, lovely conversations as I share our news. My generous uni sick leave and colleagues and arm supports that cradle my arms as I type enable a relaxed, fun teaching schedule, and somehow I continue contributing to our healthcare maze project, Gary and I submit our Australian Sociology book manuscript, Kris and I edit our special issue on teaching, and Nick and I the TASA newsletter. I out myself on Facebook before my first public talk about MND at an I AM BREATHING screening and join the MND NSW Board.
  • In year two I officially retired to concentrate on time and conversation with family and friends, with the luxury of ongoing research contributions using a wireless keyboard or iPad plonked on my lap. I did interviews for a TV story about the ice bucket challenge and for MND fundraisers.
  • During my third year Kimi and I read the first Harry Potter Book to each other, me on an iPad mini. I can still speak clearly, and do some radio interviews about the Fading Symphony.
  • In year four I gave talks at Parliament House and the Day of Hope and Remembrance, alternating between the efforts of finger on screen and speech to text.
  • Year five: I can speak clearly but quietly without my Bipap mask, or with my mask have a louder, distorted voice. I can sometimes get my finger to the desired part of my iPhone screen. It took time, team effort and hopefully not an ABC news story to convince the NDIS that communications technology was worth funding.
  • During year six I rely on the NeuroNode strapped to my wrist to control my iPhone; my voice becomes almost unintelligible to those not closest to me, and then, with my laryngectomy, it is gone.
  • Year seven, in hospital I become attached to my synthetic voice Ryan and get used to slowly typing what I want to say. I exchange text messages with my loves, and my friend Julie helps me set up this blog.

On 7 January 2013 I could breathe.

Bilateral breathing every third stroke and holding my breath for the tumble-turn; gently inhaling Kimi’s sweet scent as we hugged; puffing up a steep hill; slowed steady breaths as I slept. On that day I expelled mucus with my tears as she told me I have motor neurone disease, that typical life expectancy is two to three years.

Since then I’ve had eight years of breathing, eight precious years.

  • In the first year I breathed harder as short walks required more effort.
  • Year two: I slept with my head elevated on pillows to keep my diaphragm functioning overnight.
  • In year three I migrated from marital to hospital bed and my blood oxygen levels started dipping during REM sleep.
  • During year four reduced exhalatory force quieted my speech, and my breathing muscles were supported with the introduction of a bipap machine overnight.
  • Year five: serial emergency admissions with racing heart and respiratory distress leads to a quasi diagnosis of pyrexia of unknown origin, treated as if it were Familial Mediterranean Fever; meanwhile, I am tethered to the bipap machine pushing air in and out of my nose and lungs for increasing stretches of each day.
  • During year six, I breathed out with the help of the bipap machine, its mask prongs occupying my nostrils 24/7 apart from hurried moments when carers lifted my dress over my head or suctioned out mucus – the discomfort of stuffed nostrils briefly replaced with the discomfort of breathlessness. Then, suddenly, my bipap-supported chest muscles were not enough: my oxygen levels plummeted and carbon dioxide poisoned my blood. After my life was saved I was given a life-saving tracheotomy and laryngectomy so that a ventilator can breathe for me.
  • During my seventh year, we learned about inner cannulas, suctioning and all of the rest. As we settled in at home, we figured out how to do transfers without blocking the vent airflow, after an unintended carer training session in emergency bagging.
  • While year eight has witnessed the inevitable ongoing weakening of my breathing muscles, the ventilator has kept me safely aerated.

On 7 January 2013 I could (arguably) look after myself.

As usual I got up, went to the loo, ate my muesli, had a shower, got dressed, brushed my hair and teeth, and checked my handbag supplies. I didn’t consider any of this a major achievement (tidying up, another story). That day, I pulled out a tissue and wiped the tears off my face.

Since then I have had eight years of being cared for.

  • Year one: I manage with a few adjustments (and occasional accidents) – a front-fastening bra, elastic waists, chunky-handled cutlery, electric toothbrush, raised toilet seat and bidet – and become familiar with the geography of (sometimes aptly named) accessible toilets.
  • In year two we installed a shower ramp and welcomed my first lovely carers to help me get out of bed, accompany me and my walker to the shower chair, wash and dress me, initially two mornings a week. I often take a lucky relative or friend with me to troubleshoot getting off the loo.
  • Year three brought several exciting developments! I can no longer get myself between wheelchair and toilet and a team of friends helps with daytime wees until I am equipped with a two litre bladder (my golden handbag) via a suprapubic catheter. Discovering an allergy to an ingredient in some medical tubing added to the adventure. I now need two carers to hoist me from bed to commode, where they insert a microlax and feed me breakfast to encourage a daily motion, and I add bum-wiping to the growing list of tasks I’m too lazy to do for myself. In the evening I am hoisted back to bed, by Densil (mostly) or a carer. And I have another trip to hospital, for an endometrial ablation to keep Aunt-Flo-on-her-white-horse at bay.
  • Starting in year four a carer stayed with me for a few hours one day per week, adding to the schedule of family and friends who chat, help with outings, coffee, food and weebag-emptying and make sure I am rarely alone.
  • In the fifth year, my attachment to the bipap machine added a layer of complexity to my transfers and its insistent alarm added to my quiet calls for help – to move my head, my arms, my legs, my feet; to scratch an itch or adjust my mask nosepiece or strap; to add or subtract a blanket; to evict the cat – so that Densil rarely had an uninterrupted night’s sleep.
  • In hospital during year six I became accustomed to nurses’ favourite question – Have you opened your bowels? – and said opening happening in bed, preferably after a porter and two nurses can be enlisted to turn me so the shit hits the pan.
  • Year seven: my hospital stay stretches out, month after month, as a new team of carers is recruited and trained, not only to position, move, feed, medicate, wash, cream, dress, toilet, monitor and understand this strange creature with tubes emerging from my neck and my belly, but to keep my communications tech, ventilators, humidifiers, suction and cough assist machines running, keep my airways clear and deal with emergencies.
  • In year eight carers are now an everpresent part of my life, our lives, attending to me day and night. They are a diverse, kind, multitalented, patient bunch. At best they are not only skilful at keeping me relatively safe, comfortable and healthy, and tolerate (if not share) my sense of humour, ABC habit and asparagus-scented output, but help me be myself, as a mum and wife, relative and friend, MND activist-pacifist, sociologist and writer.

On 7 January 2013 I could eat.

Contrasting textures in a garlic lemony felafel roll, warm fruit and nut bread with coffee, a colourful fresh salad, crunchy chips with beer, spicy veggie stew with brown rice, a perfect crisp apple, too much chocolate. On that day Densil bought pear bread and coffee at Harley’s (no relation) Cafe after our appointment, but I barely tasted it as a confusion of shock, fear, grief and uncertainty spilled out of me.

Since then I have had eight years of eating, eight precious years.

  • In my first year I savoured food, an enthusiastic adherent to the medical advice to try not to lose weight, and we are grateful for Donna’s roster of delicious vegetarian meals provided by Kimi’s primary school community.
  • Year two: Swallowing remains mercifully unproblematic but the physical process of getting food and drink to my mouth becomes more difficult and tiring. I combine the strength of both arms to lift food and drink through a straw.
  • With year three I become fully reliant upon others to feed me and become grateful for my fat reserves.
  • In my fourth I avoided difficult textures and my appetite waned. My MND clinic dietician endorses the coffee milkshakes the local patisserie makes for me.
  • Year five: I eat slowly and carefully in an effort to avoid choking and aspirating. Crème brûlée is my friend.
  • Ending year six I spent more than a month after surgery with a tube running up my nose and down to my stomach, through which I was fed nutritious Isosoy and a daily medicinal espresso shot.
  • In my seventh year my remaining hospital stay brought a progression of dietary milestones: ice chips, water, coffee, beer, gradations of mush, lentils, soft veggies, Jaffa cakes, vegemite toast!
  • Year eight: As I settle into home my appetite rebuilds, and I am softly repadded on a soft-food diet. I enjoy food, knowing that my swallowing muscles continue to decline, most obvious now when food heads up my nose instead of going down.

On 7 January 2013 I had a wonderful community of family and friends.

Our siblings and parents and niecephews and cousins, friends I saw regularly and friends far away, old friends from childhood and new friends via parenting, strictly IRL friends and social media friends. That day, Kimi played with her cousins while we went to the appointment. When we arrived to collect Kimi, Anne saw the news on our faces and invited us in; we talked for a couple of hours about what it might mean, how we might live this new life.

Since then I have had eight years of love and support, eight precious years.

  • In the first year, as I went through the process of telling family and friends, I was buoyed by waves of love and practical support: meals, useful gadgets, visits, lifts, sewing,help with Kimi, and generous donations. I started meeting fabulous MND families through MND NSW and Macquarie events and later Facebook- a crucial source of advice, encouragement and support, including far too many who have died.
  • In year two, friends gently helped with decluttering, meetings and appointments. I was invited to join a local coffee group, new friends who became adept weebag emptiers, and I was accompanied to a conference trip where I could hang with my sociology besties. There was a beautiful joint birthday celebration for Mum’s 75th, Sonia’s 50th and Zoe’s 20th, and Mother Mary is kind, generous and gracious to the end.
  • Year three (and others): lifts and play dates for Kimi and some lovely extended family gatherings and holidays. My cousin painted me for the Archibalds.
  • In my fourth year, every year, a crew of family and friends came regularly to look after me and keep me company with chat, coffee and crosswords; and attended or supported MND events and fundraisers.
  • Year five:Kimi’s primary school held their fifth fundraiser and a lovely group of parents and teachers continued providing meals.My fabulous GP Anna and neurologist Dom kindly start visiting me at home.
  • During the sixth year I start making new hospital friends. A friend with sewing superpowers starts making me dresses; an old church friend scrapes baked plastic off our oven innards; and an overseas friend who has made me digital mandalas every week since my diagnosis posts one hope-filled mandala, which arrives hours before I lose my voicebox.
  • In year seven (and during earlier, shorter stays) our families and so many friends visited me in hospital, broughtfood and coffee, decorated my room and told me how they’d celebrated my 50th. Lexi’s belly magically grows! Before Covid intervened, special friends who live far afield have spent quality time when here, and amongst visitors were school friends bearing memorabilia and an artist friends for drawing sessions.
  • Year eight: all this time there has always been non face-to-face support – calls, cards, flowers, pictures, messages, packages, behind-the-scenes advocacy, links – and this has become more the norm in the age of Coronavirus. A highlight this year has been weekly FaceTime sessions with my mum and sisters, starring my wonderful 12 month old niece.

On 7 January 2013 I was proud of my gorgeous Densil and Kimi.

Kimi was a shy, funny, caring, creative, friendly, Diary-of-a-Wimpy-Kid-reading, vegetarian, ridiculously world-travelled 6 3/4 year old on the cusp of second grade. Densil was a quiet, clever, witty, musical, knowledgeable, photographic, black-wearing, hard-working acoustics academic, my husband of 20 years. That day, Kimi overheard the words “motor neurone disease”, so the next morning as the three of us snuggled in bed.

Since then I have had eight years with my loves, eight precious years.

  • Year one: We celebrated Kimi’s seventh birthday in Japan and those two festooned our lawn with Spring bulbs and MND cornflowers. Keen for a cure, Kimi inspired an excellent crazy hair day fundraiser.
  • In year two, Densil added saxophone to his repertoire as Kimi started playing in the beginner school band. Kimi chortled as her Dad helped tip iced water on me, and she cunningly challenged “every single person who watches this video”.
  • Our family year three highlight was the adoption of our beloved, shy rescue kitten, who has since adapted to our busy household of carers.
  • My fourth year: Kimi asks for pierced ears and Densil demonstrates his parenting skills by googling maggot earrings. During a fun family holiday, they cheerfully exhibited their practised adaptability.
  • In year five, Densil cracks up the crowd with his Trump-etting 50th birthday speech, the best speech ever. We go as a trio to a fancypants restaurant for our 25th wedding anniversary. Kimi gives a gorgeous interview and we are filmed as a family for an MND Australia campaign.
  • Year six was the year Kimi transitioned to high school with maturity, sociability, hard work, talent and style. It was the (first) year Densil accompanied her with a glorious solo night performance. And it was the year my loves sat in a private hospital room and urged doctors to try to save my life, wanted me to have the trachie knowing it would be a hard road ahead.
  • Year seven: hospital visit after hospital visit, again and again and again, bringing stories and jokes and maths homework and love into my ICU room. Meanwhile they painted and reorganised the house and endured bathroom renovations in preparation for my return home. And at father daughter talent night Densil received a gong for his acoustic performance titled “Embarrassing Kimi”.
  • This eighth year has been a strange and unexpected, dare I say unprecedented, one. Yet amidst the global tragedy: Kimi was disappointed but understanding as her full, fun extracurricular schedule dissipated, enjoyed learning and opportunities to connect with friends, and ended the school year receiving an award for the student who best represents the ideals of public education; Densil supplemented zoom meetings with gardening and bought mini keyboards that Kimi and he played; and we were alive and together and loved each other.

Eight years, eight precious years.

3 November

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.

A World Without MND

In August I participated in a Macquarie University webinar, hopefully titled ‘A World Without MND’.

A recording is now available here: https://youtu.be/wrivF56tfX8

After introductions by Prof Dominic Rowe (aka my neurologist, Dom), Macquarie, there were presentations by:

  • Prof Ian Blair, Macquarie, on genetic discoveries (starting approximately 7 minutes into the recording)
  • Prof Justin Yerbury, Wollongong, on proteostasis and implications for therapy development (23m)
  • Prof Julie Atkin, Macquarie, on disease mechanisms (36m)
  • Me (wearing my Sydney School of Health Sciences hon hat), on living with MND, text pasted below (48m)
  • Dom, on trials to slow and stop MND (58m)

Back when I was tethered full time to a bi-pap machine and losing capacity for my voice to be understood, I couldn’t imagine being able to do any more talks or interviews. I am so thrilled that technology has allowed it, and to Justin for inspiration – even if Ryan needs to work on his comic timing (Communication).

I was even able to say a few words yesterday as the human interest component of Channel Nine’s news story on the latest research “breakthrough” – one of many, many needed towards achieving a world without MND.

https://www.cell.com/cell/fulltext/S0092-8674(20)31161-2#.X34gnsb0wqE.twitter

https://www.9news.com.au/national/motor-neurone-disease-breakthrough-australia-could-add-ten-years-to-lifespan/1e74af37-8e7d-4be0-b62e-c959f661c8ec

Living with MND

(Talk for Macquarie University webinar, A World without MND, 26 August 2020,

Hi, I am Kirsten Harley, an honorary lecturer in the Faculty of Medicine and Health at the University of Sydney, and one of Dom’s patients.

I am speaking with the help of the NeuroNode strapped to my wrist and my synthetic voice friend Ryan. You can blame Ryan for any uncouth language.

This evening I’m talking about my experience of living with MND. I will be drawing from my paper with Karen Willis, ‘Living with Motor Neurone Disease: An Insider’s Sociological Perspective’, published in Health Sociology Review last month , as well as my blog, kirstenharleymnd.home.blog.

Eight years ago I was nearing the end of a post doc at the University of Sydney. My husband, Densil, and our six year old daughter, Kimi, had flown home from Buenos Aires after a delightful family holiday. I was walking to a cafe to prepare for a conference session on health care choice. I tripped, and fell flat on my face.

There were other falls. And cramps when I stretched my quads after exercising. A few months later, after Karen Willis, Fran Collyer, Stephanie Short and I had been awarded an Australia Research Council grant to examine how people navigate healthcare, I noticed tired cramping hands. Then I fell, once, twice, three times while walking to a post-conference dinner with a friend.

I knew that my body was seriously misbehaving.

I saw my gorgeous GP, Anna, the following week, and after a careful examination and blood tests she rang Dom. His new colleague was able to see me the next week and initiated a series of tests.

On Monday 7 January, 2013, Densil and I held hands in the neurologist’s office and were told that I have motor neurone disease. We were told that life expectancy varies but typically people die within two to three years.

I thought of Kimi, our precious 6 year old, soon to start second class, and my world crumbled. The floor, walls, ceiling, our world – everything – crumbled and fell away (Six years!).

We were, of course, shocked and afraid as we started to process the news. As we tried to comprehend that I would lose the ability to move, to speak, to swallow, to breathe, with an unpredictable order and pace of losses. As we started to tell family and friends, in difficult, sacred, love-sharing conversations. As we snuggled in bed with Kimi, and explained that MND is not the kind of disease that doctors can fix, but scientists are working very hard to understand and cure it.

There isn’t a single right way to live with MND. Some prefer solitude. Some like to fight. Some keep working. Some hit the road. Some pretend it’s not happening. Some get blindsided by its terrible rapid progression.

Personally, I have sought out information and stories and community. I have learned to accept the reality of MND and generous offers of help. I have become something of an unintentional activist, and been so proud to watch Kimi become an amazing awareness raiser (Harley & Willis 2020: 220-21).

We also instinctively took on Dom’s advice – take things week by week and try to make the most of each day – and started a series of memory-making holidays with a glorious Tasmanian long weekend of friends, raspberries, penguins and poo-machine art.

As I tried to make sense of my diagnosis, I turned to our research project, ‘How Australians Navigate the Healthcare Maze: The Differential Capacity to Choose’.

Theoretically, we developed the sociological notion of healthcare capital to understand how the different kinds of resources, or capital, available to people might open and close different pathways through Australia’s healthcare maze (Collyer et al. 2015). Following sociologist Pierre Bourdieu (1986), we understood capital as multifaceted, including the economic, cultural, symbolic and social. We added the significance of place in the context of Australia’s healthcare system, where access to healthcare resources is shaped by one’s location (Lewis et al. 2018).

The gloriously truth-telling Macquarie Neurology nurse who saw me on that first day aptly described MND as “a shit sandwich of a diagnosis”.

MND truly is a shit sandwich!

It has taken from me arms that could hug, turn pages and swim. It has taken legs that could run, climb stairs and kick off blankets.

It meant I had to ‘retire’ at age 45.

It has steamrolled over our family life, rearranging our home, schedules and activities, and stealing our confidence in my longevity.

It has killed our friends.

It has taken my voice and breathing.

It means I need others to get me out of bed, to shower and dress me, to feed and move me, to scratch my itches and keep my machines running.

And I won’t talk about the actual shit!

It has been a shit sandwich, for me, Densil and Kimi, our families and friends.

But, in reflecting on our project about how people navigate healthcare, one of the things I realised, in a very real and personal way, is how much more of a shit sandwich this would be for me if I didn’t have my family and friends. I’ve learned, firsthand, how each of the elements of healthcare capital has made a difference in navigating this challenging journey (Harley & Willis 2020: 215).

We’re lucky in Australia to have an excellent public health system, which has offered me free, life-saving emergency care, and universal Medicare and PBS. The support of MND NSW and similar organisations helps level out the playing field and, unfortunately only for people under 65, the NDIS can make a big difference, including funding my round the clock care (The NDIS). But in terms of economic capital, I’m also aware how much harder this would be if we didn’t have sufficient economic resources to pay for things like out-of-pocket costs and home adjustments (2020: 215-16).

My cultural resources, boosted by years of university education, and specifically my research and teaching in health sociology, have helped me to make sense of what is happening: to find and read the research, to understand the statistics, to appreciate the different roles of the team of health professionals involved in my care, and to theorise and write about the experience (2020: 216).

I can see that place has made a huge difference. Living in a part of Australia where I have access to good health resources contributed to a relatively fast diagnosis and led me easily to my exceptional neurologist, Professor Dominic Rowe, and his fabulous multidisciplinary MND clinic at Macquarie University close to where I live.

Dom exemplifies what makes an excellent health professional. Clinical expertise is obviously critically important. But it is equally important for health professionals to recognise the limits of their knowledge, to understand that knowing the disease is not the same as knowing this particular person with the disease, and to be comfortable asking questions and seeking advice, collaborating respectfully with both colleagues and the patient and their family (2020: 216-17).

I can see that this would be harder without the kind of symbolic capital that facilitates comfortable interactions and mutual understanding with health professionals (2020: 216).

Most of all, I’ve experienced firsthand the way that social capital, the network of wonderful family and friends around me, provides access to a collective wealth of emotional and practical support, expertise, advice, knowledge, contacts, stories, research and experience that overshadows and leverages my own personal resources (2020: 216).

Even though MND is a shit sandwich, I have an amazing, kind, strong daughter and husband. And the love, care, support, coffee, humour and joy that I receive from the beautiful family, friends, carers and health professionals around me help make my life very much worth living.

Thank you!

References

Bourdieu, P. (1986) ‘The forms of capital’, in J. Richardson (ed.) Handbook of Theory and Research for the Sociology of Education, Greenwood Press: NY.

Collyer, F., Willis, K., Franklin, M., Harley, K. & S. Short (2015) ‘Healthcare choice: Bourdieu’s capital, habitus and field’, Current Sociology, 63(5): 685-99.

Harley, K. & K. Willis (2020) ‘Living with motor neurone disease: an insider’s sociological perspective’, Health Sociology Review, 29(2):211-25. https://doi.org/10.1080/14461242.2020.1789487

Lewis, S., Willis, K. & F. Collyer (2018) ‘Navigating and making choices about healthcare: the role of place’, Health and Place, 52: 215-20.

First Homeversary

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

Art tickle

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

Feeling Good

(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.