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.

• In my eighth year I continued NeuroNode-writing, including a health sociology journal article with Karen and a piece for the ABC. I have been pleased to find that with Ryan’s help I could resume public speaking, giving evidence to the Disability Royal Commission, and some TV “interviews” most recently for this story by The Project showcasing Peter Ford and his life-changing NeuroNode invention: https://10play.com.au/theproject/exclusives/2020/the-incredible-innovation-helping-motor-neuron-disease-sufferers/tpv201215hcbtr

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.