Half her life

Today – 17 October – it is 6 years, 9 months, 10 days since 7 January 2013: the day we received my diagnosis. 2474 days, to be precise. It’s not an obvious milestone, except Kimi was 6 3/4 – 2474 days, to be precise – on that scorching hot day that she played innocently at her Aunty Anne’s while her mum and dad went alone, together, to receive the dreadful news that would bifurcate her life, our lives. Life before MND diagnosis. And life after MND diagnosis.

Your life before

You surprised us all by arriving a month early, to a family of parents, grandparents, cousins, aunts and uncles who already adored you. After an initial 12 days in hospital while your breathing and bilirubin were sorted, and a few weeks while we scaled the steep learning curve that is new parenthood, we settled into a first year of cuddles, books, train trips to hang out with mothers’ group friends at the park, train trips to Redfern to visit Mummy’s or Daddy’s office or friends in Newtown, or perch in your stroller beside the uni pool, your mum and swimming buddies taking turns to sit out laps and entertain you.

Then, the toddler years: new friends and childcare fun at Boundary Lane, where I got to sneak in for lunchtime feeds; the wonderful acquisition of language – you surmised my breasts were ‘nots’ from my instructions about (in)appropriate time and place – and humour – when I asked ‘What starts with S, what starts with ssss?’, you replied ‘a wee’; train commutes with books and conversations with strangers drawn to the smally (once, mid-scribble, you announced you were writing your thesis); Spider-Man gum-booted stomping through puddles, and scrunching autumn leaves in the local park; a social life of birthday parties and play dates; riding your balance bike; learning to count as we climbed station steps; and the odd tantrum, memorably when you discovered that the green gelato you’d chosen was pistachio, not choc mint.

There were lots of lovely outings and holidays. The long drive to Bright punctuated by visits to the Wagga Wagga wave pool and the doll museum, then long family walks and lunches, swims in the river and your first sight of snow, distributing birdseed confetti at Lexi and Tim’s wedding. Returning via Cowra with pizza picnics and the Japanese gardens, and the cafe where you (possibly with parental encouragement) cheekily rearranged the letters ‘SMILE’. Aunty and art time in Melbourne. South coast wallabies and Opera House tutus, Pearl Beach glow sticks and Three Sister sightseeing, Great Ocean Roadtrips and helping walk Cino, Playschool concerts and Newcastle breakwater, neighbourhood brunches and Sunday lunches, cold Vivid nights and Biennale extravaganzas.

And – a perk of having academic parents – a ridiculous amount of overseas travel! Volcano hikes and sunsets in Hawaii, accompanied by approximations to baby food prepared in a hotel room. Auckland zoo, museum and park adventures with dad. Paris via a dragonfruit-breakfast stop in Bangkok: canal rides and shopping, fromage and the Louvre with Bruce and Michael, sculpture gardens and a donkey ride, and a side trip to visit Tanja and Matthias in Switzerland (as you do). Then your first of many trips to Japan: Hanshin Tigers baseball, kids museum and incredible jellyfish with Saori in Osaka, Hiroshima Peace Park and museum (even more horrific than having to use squat toilets), the great Buddha and tag-guzzling deer at Nara, Kyoto golden temple and monkey mountain with Yu, Kobe onsen and shipping container art (remember the enormous bum?), Harajuku cosplay, Ueno Park guinea pigs and dinosaurs, Miffy-chan at Mieko’s and spectacular Hello Kitty show at Sanrio Puro Land, -10 degrees (snow in Japan!) and autumn leaves at Zao, manga and whale museums in pre-tsunami Ishinomaki, Yoshitomo Nara’s snow-capped giant puppy in snow-buried Aomori; and long stretches in Sendai, making friends, kindy, temples, river rowing, outdoor ice-skating, Loft, starlight pageant, earthquakes, Afternoon Tea, Anpanman. We also went swimming and saw starfish in Fiji. And in South America you saw the Christo and favelas in Rio, cute coati beside the thundering Iguazu Falls, and in Buenos Aires you tasted dulce de leche and submarino, shrieked to turn lights on at the art gallery, learnt about the ‘disappeared’ and slept through obscure opera at the Teatro Colon.

You were a shy but keen Kindy and Year One student, with gorgeous new friends and teachers Mrs Maxwell (chick hatcher) and McDowell (party-giver). Mr Lodge entertained everyone with his rambling story-telling and you gave speeches about your favourite food (mango-sushi-chocmint-icecream-pizza) and the strange stinkhorn fungi that had materialised in our garden. You loved art and Easter Hat Day and discos and cross country and Healthy Harold and progressed with your reading and maths, transitioning to chapter books via Diary of a Wimpy Kid.

In November 2012 we visited Gary, Jo, Max, Barbara and Farida in Freo. I am not sure if you noticed me struggling to unlatch the gate or step into the bath. We spent a beautiful day on Rottnest Island, communing with quokkas and making it halfway round the island before my tired legs, not yours, saw us abandon our bikes for the bus. In December instead of our normal family walk to and from your swimming lessons I made an excuse to catch the bus. Your dad was away when I first saw our lovely GP and a neurologist: as we did messy Christmas baking I told you it would be good to find out what was causing my falls, not that I was shit scared. Despite my fatigue and intrepidation we had a glorious couple of weeks being spoilt by Grandma, cousins, aunties and uncles at Bright, then camping with your cousin Aydin and family at Tumut, gaining refuge from the summer heat submerged in streams and the speckled shade of a pine plantation. On Sunday 6 January we drove home, with an unscheduled but cheerful delay in Goulburn when their car radiator announced it was much too hot for driving. That was the last day of that life.

Your life after

On that Monday, amidst swimming with your cousins and visiting your Gran and Grandad, you heard the words ‘motor neurone disease’. You must have mulled them over, because the next morning, as we all snuggled together in bed, you had questions: You’ll get better, won’t you, Mummy? But can’t the doctors fix it? How did you get it? And we, helped by my reading of MND Association booklets in the insomniac wee hours, had answers of a sort: This isn’t the kind of disease that gets better, sweetheart. The doctors and scientists are working very hard to understand it and make it better. They don’t know how I got it but we do know it doesn’t spread by touching or hugging or kissing and it’s not your fault. And whatever happens we will always love you.

As scheduled, we took you and your friend Mia into town to see a magical performance of Chitty Chitty Bang Bang, chain-skulling ice cream to cope with the sticky record-hot air. Before meeting the fabulous Dominic Rowe we instinctively followed his advice (take things week by week, try to make the most of each day, do it now!) and booked an overpriced long weekend trip to Tasmania: feasting on risqué art at MONA, freshly picked raspberries at Christmas Hills Farm, homecoming little penguins at Low Head, and a beautiful day of Cataract Gorge swimming, deep conversation, meringue smashing and Eton Mess gorging with Kris and Al and Lu and Nell, who nurtured you when those two wobbly front teeth finally made their bid for freedom.

We kept up the while-I-still-can memory making, most extravagantly that year and the next. The Easter Bunny delivered a giant Kinder Surprise to our hotel room in Sendai, egg for Easter, toy for your coincident seventh birthday, and the heavens also joined the celebrations with an unexpected dusting of Spring snow as we returned from a luxurious onsen soak and birthday cake with friends Kazue and Tomokazu and Yuino and Sayuka. Friends and cake featured at each stop on that Japanese trip, along with theme parks and cherry blossom and baseball and parties and Disney Sea. With Aunties Lexi and Sonia and cousins we flew North for crocodiles and rainforest and reef-snorkeling and visiting your FNQ-domiciled uncle. With Kathryn and David and Aydin we experienced desert sky stars (so many stars!), and you helped push me around Uluru and Kata-Tjuta’s Valley of the (ahem) Winds; and twirled glowsticks beside the ocean at Kiama; and enjoyed the beach and boardwalk at Port Macquarie. And we cruised New Zealand and gianted over Cockington Green with Vicki and Kate and visited Grandma and hung out with Kate, Richard, Laura and Eddy in Newcastle and spent leisurely days eating and watching crowds of crabs at the Bay with Pauline and Susan. And we went to the aquarium and art gallery and footie and Easter Show and Bobbin Head and stand-up comedy shows and James Morrison and climate change rallies and Aida-in-the-rain and with Emma and Jen saw Matilda the Musical and had pedicures and went whale watching with Lizzie and Pete. And more, much more.

Your beautiful Year Two teacher, Kylie Williams, gently nurtured you, and us, through that first year. She asked Grace’s mum, Donna, to coordinate offers of assistance, and for five years she rostered families and the after school care centre to provide two vegetarian dinners a week, giving you and your friends a practical lesson in community (a lesson you’ve had in spades as family and friends have surrounded us, providing lifts and meals and play dates and house tidying and birthday cakes and visits and love). The one time you were uncharacteristically naughty she rang to explain you’d been seen offering to shout friends at the canteen using the contents of my wallet (that afternoon your dad rang me at work so you and I could talk about it; it took great effort to remain straight-faced, straight-voiced as you hurriedly gushed ‘Sorry Mummy, bye bye’). When you wanted to raise money for MND NSW, Kylie organised for you and classmates to sell hundreds of MND puppies, and excited the school for weeks with a crazy hair day fundraiser, which climaxed with Mr Cowley having his luxuriant long locks shaved off before a hall full of shrieking primary school kids.

A journalist from the local rag covered the fundraiser and rang to interview me. You were thrilled to read the article about the event you’d inspired, but came to a line about average life expectancy of 27 months. You’d already quietly observed my decline – from managing with walking stick to needing a mobility scooter or walker, my arms and hands weakening, the dangerous falls – and figured out this wouldn’t end well. But 27 months? (In response to your questions I didn’t take up the opportunity for a lesson in statistics, emphasising that many live longer, not that many die sooner.)

That was the first of many acts of awareness raising. Each year you helped with another fun primary school fundraiser until Warrawee was overrun with MND puppies. You chortled your way through our ice bucket challenge, your challenge prompting the MND NSW team and your cousin Hannah to tip ice on themselves. You stood beside me in (gone, but fondly remembered) Ian Davis’s video campaign, sharing the TV screen with the likes of Serena Williams. You starred in MND Australia’s social media campaign, talking about how having a Mum with MND has shaped you; and in an Aged Care Channel documentary; and were filmed in an ABC News story about the NDIS. You and other family and friends have supported me at a Firies climb, Macquarie Gala, Days of Hope and Remembrance and on many MND walks. Earlier this year you and your gorgeous cousin Susy bravely stood up in front of your high school community and gave a speech we’d written together. Thousands of people have heard about MND through you, darling girl. I couldn’t be prouder.

I am so sorry, my Kimi, that you have joined the crowd of Australians in families with MND. I am sorry that you’ve watched me lose my ability to walk, to stand, to swim, to write, to hug, to speak, to breathe. I am sorry that you’ve had to lose a mum who can make lunch and plait hair and laugh out loud and take you into the ocean and work and bushwalk and hug you and teach you to sew and travel and demonstrate secret women’s business and lie next to you on the trampoline. I am sorry that you’ve had to empty my weebag, take me to the toilet, help lift me off, get help when I fell. I am sorry that you’ve had to become used to people staring, or quickly looking away, when we’re out together. I am sorry that you’ve had to adjust your life around my schedule and a house full of carers, including occasional dodgy experiences. I am sorry that you’ve had to stay home with me during school holidays. I am sorry that you’ve had to comfort me as friend after friend after friend died (and wondered, when will this happen?). I am sorry that you’ve had to arrive from school to the news an ambulance has taken me to hospital. I am sorry that last November you lost me for six hours, almost forever, and with your dad had to tell the doctors to try to revive me. I am sorry that you’ve had to consider options, a mum with a trachie and no voice box, or a mum who is dead. And I am sorry that you had to live with me in hospital for nine and a half long months.

And I am grateful, so grateful, to have had these 2474 days with you. I am glad to have been with you as you pleaded with me for a pet, and chose and fell in love with our Lucky Tiger. I am glad to have been with you as you sang in the primary school choir and performed at the Opera House. I am glad to have been with you as you learned to play saxophone, exhibiting your dad’s musical genes as you’ve aced exams, won at two solo nights and enjoyed playing with six school bands and busking with your cousin Hannah. I am glad to have been with you as you have joined Guides and discovered the joys of camping and ice blocking. I am glad to have been with you as you have developed as a reader, together encountering Hogworts and the dystopian Panem and the girls high school of Erin Gough’s Amelia Westlake. I am glad to have been with you as you entered (and exited) the strange hairspray-intoxicated world of physie. I am glad to have been with you as you celebrated friends’ achievements, and experienced the intrinsic value and school acknowledgement for working hard and doing good work. I am glad to have been with you as you have loved working with your team to develop an environment-sustaining technology and made the finals of the Australian Innovators Challenge. I am glad to have been with you as you have improved as an artist, doing a beautiful first oil painting with Jenny’s guidance. I am glad to have been with you as you have moved through primary and into high school, making new friends and becoming a whiz at science and history and maths and Japanese. I am glad to have been with you as you have become increasingly engaged with the world, laughing at the ridiculous and celebrating breakthroughs in social justice. I am glad to have been with you as you have had wonderful older cousins and are thrilled to have a new cousin on the way. I am glad to have been with you as you and your magnificent dad have become such a tight team, teasing and helping each other as you rise above the challenges this shitty disease keeps throwing at you. I am glad, so glad, to have been with you as you have grown from that 6 3/4 year old to a beautiful, kind, thoughtful, loving, resilient, talented, funny, curious teenager. I am grateful for each day, and glad there will be more.

Ten pleasures of being home

My own bed (dubbed Chewbacca Junior), now with improved air mattress, in a room-cum-carers’-office beautified with new bluebird (of happiness) blinds and colourful mobile, and familiar penguin blanket, handmade paisley bed head, portrait by my cousin Jenny and Densil’s 2010 photo of three-year-old Kimi and my embrace, which melts my heart every day.

Relaxing in our lounge room, freshly painted in a much calmer shade of green than its name – Grassy Knoll – would suggest, the display nook adorned with a delightfully kitsch assortment of obscure treasures and hospital artworks, watching Handmaid’s Tale and Les Norton, or belatedly joining the family Friday night Marvel movie project.

Settling in with my ever-present lovely, talented carers, learning together about my body – unable to move but with full sensation, unable to speak but with thoughts – and how to move, feed, clean, dress, medicate, evacuate and document it (in triplicate) with the additional complication of having to keep my artificial airway operating; also, sharing stories and jokes as we co-create language (f’rinstance, ‘front bum’ turns out to be easier to lip read than more accurate terms) and gently build an expanded sense of family.

I may no longer be able to swim, but after 9 1/2 months of bed baths and hospital showers, such bliss to be showered with actual hot water coming from a long-enough shower hose at high-enough pressure to actually reach my body, reclining in my commode while carers gently shampoo my hair, able to do so because of Densil’s relentless work in negotiating with the bathroom renovators, reminding them several times that accessible bathrooms can’t have steps.

Food, glorious food! Appreciating, while I can, the deliciousness of raspberries and blueberries, avocado and haloumi, green curry tofu, hummus with felafel, pumpkin feta pizza with a glass of beer, lentils with fresh asparagus (warning the carer who finds its pungent after effects challenging), and the fruit of our new coffee machine, accompanied by almond croissant or Cadbury chocolate fingers that look suspiciously like a number 4 on the Bristol Stool Scale.

We’ve been building up the distance I can travel from home: out in our garden, amongst daffodils and pink explosions of peach blossom, extension cord connected to my vent and humidifier; an al fresco pancake brunch, the sun stroking my face with her warm velvet gloves; battery-powered dry vent on to take me up the driveway, up the street, to peruse old haunts – local patisserie, supermarket, park – pondering the sociological implications of neighbourhood changes: a funeral parlour has replaced the gym, Annabel Crabb Quarterly Essay posters on billboards, and the appearance of Jatz chocolate; a first train trip to Hornsby; and, today, a first winding drive to Bobbin Head, beautiful in the crab-scuttling, iced coffee-guzzling, eucalyptussy, shimmery-watered, amongst-the-community present, and in the link to remembered adventures past and the promise of adventures future.

Since coming home I have had the opportunity to use Control Bionics’ latest piece of magic – the Trilogy.  The new Neuronode gets charged every 24 hours (often while I watch – I confess – the Chase);  instead of replacing batteries every 3 or 4 hours.  I can now connect it to a larger screened Surface Pro;  and use my eyes to move the cursor around the screen and the Neuronode to ‘click’ the mouse – so much faster;  specially with improved predictive text. I have a new voice; Lisa; who is less aggressive than Ryan; and pitch/speed options that will be great for Halloween. I’m still limited in the programs I can use (e. g.  apparently the text editor keyboard was designed by someone who thinks dollar signs are more useful than commas) but Peter and team are working hard to open up options for me.

The lounge room and garden have played host to lots of lovely visitors: sisters/in laws with crosswords and beloved indwelling niecephew; extended family gatherings with multiple conversations; some favourite hospital nurses; drawing sessions with Sallie as we plan #stillwithyou; hairdresser-friend Robyn giving me a pixier short cut than the short-back-and-sides I deserved when my 7-year-old self persuaded Mum to take me to the barber on gender equity grounds; and friends old and new sharing stories of their lives and delight at me being home.

Our beautiful Lucky Tiger, feline companion and confidante, hiding out in Kimi’s bed as his familiar gentle home was invaded by a raucous crowd of strangers, then persuaded into my presence with gastronomic and tactile incentives, and – quickly adapting to the busier household – smooching up to Kimi the second she arrives home from school, luxuriating on the laps or laptops of Densil and Kimi, and, finally – when their laps were unavailably vertical and/or in Japan – jumping uncoaxed onto me, his soft, warm presence bringing unfathomable joy.

You already know what has been, is, best of all. Being home with my patient, generous, adaptable, kind, hilarious, life-saving, creative, loving and beloved Densil and Kimi. Home, with them, asleep in the same house. Home, with them, intelligently unpacking the TV news. Home, with them, enjoying sax practice (so beautiful it can make me cry). Home, with them, sharing jokes 10 seconds or 32 years in the making. Home, with them, chatting about homework, work, our days. Home, with them, exchanging tender looks, words, kisses, love. Home, proudly, excitedly farewelling Kimi for a wonderful fortnight school trip to Japan; missing her like crazy, as Typhoon Hagibis flight cancelations mean a day, at least, gets added to their stay; but knowing soon we’ll be home, together, again.

Goodbye Room 103

From my bed, ‘Chewbacca’, I can see some of room 103, a largish room with fancy new-hospital ICU fitout. To my right is a dusky pink feature wall decorated with an inoffensive framed floral print, lime green box of disinfectant wipes, boxes of rubber gloves in three sizes, soap dispensers, and laminated A4 posters (with 11-step guides to properly washed hands and the five principles of cleaning); a stethoscope is draped over a keyboard/monitor which shows my O2 sats, heart rate and blood pressure, unless a nurse is logged in to check meds or add to the tome of notes about my bowel habits, sore toes, 17 kegfulls of wee, whether I know where I am, trachie secretions (nothing is secret), etc; there is a white sink in the corner, a bright yellow bin for contaminated waste, a frame holding a clear plastic bag of uncontaminated waste (much of it single-use plastic), a stainless steel trolley with my spare vent, portable suction machine and shower supplies, a chair burdened with spare pillows that make way for visitors, a trolley table and a pile of cardboard boxes breeding under the sink. A reflective black TV screen is in the top right corner of the room: I usually ask for it to be turned on for ABC’s Wednesday night comedy, the crackly sound whispered into my ear by the handset on my pillow, but choose the superior audio of my phone for News Radio broadcasts of Q&A and Insiders, plus a host of wonderful ABC radio programs and other podcasts. The wall on my left has a door through to room 104, occupied by a succession of neighbours, heard but not seen; a blind covers the window unless a nurse has to watch both of us at once. Another monitor is attached to my blood pressure cuff, and against the wall is a phone, emergency call button, and a bench and several sets of drawers for personal belongings, medications and carefully ordered nursing paraphernalia. Above me is an LED light on an extendable arm, designed for a room in which trachie stomas need inspection, not designed for a room in which a hoist is required to get a patient in and out of bed. And in front of me is a clock, its finest red hand ticking down the seconds, and a large doorway part-covered with a magical bacteria-repelling curtain.

Not long after I arrived I learned that these curtains have a limited shelf – or rod – life, as one beige/brown checked curtain was replaced with another. Then, one May morning, a fellow appeared and as he was extracting the old I attempted a joke about whether he was upgrading the colour. My joke fell flat, not just because of my synthetic voice Ryan’s deadpan delivery, but because he was, indeed, upgrading the colour. To an oceanic hue fondly known in our family as Harley Green – our colour – a perfect match to the green and periwinkle blue balloons that gorgeous nurses Tania and Tianna had selected to decorate my room as a 50th birthday surprise. Discovery that the whole ICU had been similarly transformed only reinforced my embrace of the change as a metaphor for having been welcomed, accepted, loved, in this ICU home away from home, by my ICU family.

Before peeking beyond the curtain, there are more signs that Room 103 has been my home for more than 9 months. My phone, through which I communicate thanks to the wonder of NeuroNode, is clipped onto an IV pole which has become a mini art gallery, currently showing drawings of an elephant and a richly symbolic version of our home by Kimi and a lion by talented porter-turned-carer Jack (his sketches of a couple gazing at the ocean and a pair of travelling penguins also adorn the window) and Lexi’s glorious embroidered celebration of our former Prime Minister’s phrase “suppository of all wisdom”. Dangling from my phone stand is a beautiful black omamori from a Japanese temple sent by Ming and Heena’s gift of a yellow lucky cat who smiles at me and tinkles as she moves. When I am turned to my right I see one of Susy’s beautiful paintings, a head of blue-green hair, illuminated by the rainbow glow of the Bluetooth speaker Peter brought to project Ryan’s voice. There are other artworks – the mandala that arrived from Bruce in Germany on the day of my laryngectomy, nephew Aydin’s pastel portrait of a woman (me?) and Yuxiao’s of our lucky tiger, Kimi’s maturely detailed drawing of a bird in flight and Heena’s paisley pattern. There are also beautiful cards from relatives and friends old and new, and photos, from Susy’s trip to Vietnam and Cambodia, Sarah’s picture of a delicate hibiscus (taped to a box that has been custodian of many treats), and Densil’s snap of my bedroom, freshly painted and with new bluebird blinds, still holding his beautiful photo of a pre-MND me hugging 3-year-old Kimi and my gorgeous cousin Jenny’s portrait of me. Scattered around the room are other gifts: a box of floral creams from Ro and fancy Korean hair product and a sheepskin from Robyn, a jar of seashells and the remains of Christmas hairclips from Heena (many others have donated hair elastics: they disappear here as mysteriously as they do at home), Katie’s plastic orchid, that eluded the ICU floral quarantine system unlike most of the flowers others attempted to bring (with my witty Kimi’s packet of (MND) cornflour and a few other unnamed but appreciated exceptions), a colourful pile of stretchy clothes designed and made by Eleanor, Lexi’s crocheted rug, and scarves chosen by Sonia, Sally and Peter, and my dear D & k. These objects join many more intangible signs of the love and friendship that has grown and grown, that has given me joy, that has kept me going these 9 1/2 months in Room 103.

Room 103 is located at the end of the corridor via which people arrive. I see nurses arriving for shifts, brightening the lives of those they care for, discussing treatment plans with doctors and each other, comforting families, dealing with bodily emissions with grace, humour and air freshener, rushing off to emergencies. I see doctors doing rounds, ICU consultants and specialists carefully checking their patients and doing their best to make them well; physios, encouraging and supporting patients as they clear their chests or stand and walk round the unit; porters heading into rooms to help turn or transfer, gently cheerful, or pushing embedded patients in or out; cleaners, politely checking before dealing with ordinary cleaning and the special hygiene challenges of an ICU; X-rayers (‘Hi Kirsten’) and phlebotomists, doing their best to collect their prey with minimal pain; dietary staff, checking menus and delivering coffee with a smile; and managers, rushing round, sorting out rosters and unexpected changes, helping patients and thanking staff. Many of these people have become my friends. I also see the arrival and departure of patients’ families and friends: anxious first-timers, searching for their loved ones, afraid of what they will find; groups hugging with reassurance; irrepressible small children lifting everyone’s spirits; long phone calls to update relatives; discussions with doctors and nurses about DNRs and transferring to the ward; familiar exhausted faces who have settled into the routine; and joyous departures. As people approach my room they often smile: perhaps at the “cappuccino please” sign Danny taped outside, perhaps at the residual balloons and Happy 50 1/4 th birthday sign hanging behind me; perhaps at me, a stranger; perhaps at me, a friend.

At the far end of the corridor is another room, dark behind another Harley green curtain. Sometimes, when the room is occupied, a bright light shines towards me. I think of Jay Gatsby, gazing across the bay, at the bright green light on Daisy’s dock. I think of my dreams, not of Daisy, not of things American (God forbid), but of a non-orgiastic future that intertwines with the past: forward and back home, forward and back to my amazing, beautiful, heroic family, forward and back to the new normal of living in this paralysed body, without a voice, a machine breathing for me, surrounded by carers 24/7.

And tomorrow it’s happening – after 290 days I am going home! I have blubbered every day this week as I’ve said goodbye to some of the gorgeous people who have cared for me here. I’m so grateful for their care and love, for coffees and cake and hairdos, for outings and jokes, for training my new team of carers, for getting me to this point. I’m not sure if I’ll miss Room 103 but I will miss the people. But overriding my sadness is excitement: being with my family at home, witnessing our cat appear from his hiding place for cuddles with Kimi when she arrives home from school, hearing saxophone practice, seeing the jonquils sprout from the lawn, sleeping in my own hospital bed (newly labeled ‘Chewbacca Jr’ – they get it, my family; they totally get it), settling into new rhythms. It is good to be alive.

The patient patient

(It turns out I finished writing this on the 6 1/2 anniversary of my diagnosis, another reason to celebrate each month, each day. Artwork by Lexi.)

As of 3 July it’s been 8 months. 34 and a half weeks. 242 days since this ICU adventure started in Spring. In ICU nursing terms, that’s 484 12-hour shifts – enough time to learn a thing or two.

I have learned some language of ICU. Arriving patients are ‘hearts’ or ‘spines’ or ‘neuros’ (as well as being treated as human individuals); intubation generates ‘tubies’; NGTs and lines and drains and IDCs/SPCs send fluids in and out. When trying to lip-read ‘gown’ nurses often think I want my COW adjusted, because a computer-on-wheels is loitering outside my room. Pressure areas are rated on a 4-point scale (I’ve received more than a lifetime’s supply of compliments on my good-looking bum; I assure you that’s only relative to my bad-looking bum from before the side-sleeping, pillowcase-underlaying regime wrought improvements). I have also become familiar with the Bristol Stool Chart (be proud, residents of Bristol!) and know that Code Blue is more serious than Code Brown.

I have learnt the music of ICU. The patient-call buttons that encode urgency with tempo. The different tunes of monitor alarms, ventilators, IV pumps, defibrillators, beds and calf compressors seeking attention like hungry baby penguins. The solos: wandering nurses plaintively singing ‘keys’ to obtain access to the medications room; particular nurses’ voices resonating across the ICU; bold calls of ‘X-ray!’; Ryan’s tuneless tenor; occasional tortured cries of patients confused after surgery, and perhaps before (luckily I’m in Room 103, not 101). The choruses of consultants with their underlings, gatherings of giggling nurses, patients’ families anxiously pianissimo or building with relief. The delightful wind accompaniments of bodily fluid suctioning and other winds (always the patients, apparently). For percussion, the rhythmic rumbles, swooshes and clickety-clacks of wheeled beds, machines and trolleys and recognisable staccato footsteps.

I have learnt the temporalities of ICU. The lights snap on at 6am with the arrival of porters. Nursing roulette is played with each shift changeover at 7:15 (which nurse do I score for the next 12 hours and will they be happy or anxious to have me?) with the Chinese Whispers/Telephone game of handover. Doctors do rounds, meal trays arrive at 8am, 12:30 and 5pm (‘Careful, this side is very hot’), followed by coffee, and each patient has their regime of medications, obs, physio and other treatments. For several weeks a neighbouring patient endured round-the-clock hourly shouted injunctions to open her eyes; if she complied at 2am she would witness the hands of the clock fast-forwarding through 12 hours in its daily reset – just the thing for patients struggling to connect with reality. Each week brings a change of intensivist (that’s a job title to covet!), and the flow of the week is shaped by his (yes) personality and the patient mix, only partly predictable by which surgeons are working.

I have learned about the camaraderie of ICU. Skilful doctors and nurses, porters and therapists, cleaners and food staff, students and managers, blood collectors and technicians work together. Most of the time there is a quite beautiful sense of teamwork: real consultation to tackle tricky problems, respect for each other’s expertise, listening and communicating, uncomplainingly helping out, including patients and our families as part of the decision-making team. The mix of cultural backgrounds, languages, genders, religions, politics, sexualities and life experiences outside work seems to me to strengthen the team. So does shared chocolate and laughter.

I have learned about the compassion in ICU. I have witnessed the everyday compassionate care of staff as they tend to patients and families: fetching warm blankets and cups of tea, gently explaining medical procedures, smiling as they deliver meals and drinks, carefully turning and washing, apologising for invasions of bodily integrity, encouraging progress, acting quickly when there is an emergency. One of the beautiful cleaners checked recently that I was ‘getting enough loving’ here. I am indeed, with hers amongst the thousands of acts of loving kindness: my neurologist brings cappuccinos each week, along with his jokes and problem-solving; one of the gorgeous porters added his sketches to my artwork collection; nurses have cut and dyed and braided my hair, and baked cakes, and delivered reports of my Mum’s progress after surgery, and collected flowers and seashells hermetically sealed in jars, and adorned me with Christmas hair clips, and facilitated and photographed fun outings; the diet supervisors laugh each fortnight as they tell me asparagus strudel is on the menu and without needing to ask note that I instead want chickpea curry; a huge team collaboration of managers, doctors, nurses, porters and more enabled us to go to Tim Minchin’s show, the lovely nursing unit manager and ward clerk anxiously bearing responsibility for safely negotiating taxi bumps and theatre crowds; the surprise decoration of my room for my 50th birthday, and various staff taking up my birthday challenge; the duty manager telling me about trekking to fundraise for MND; and more. Compassion on a stick! And this all on top of the loving brought into this room by my gorgeous family and friends, who are in turn cared for by those who work here.

I have learned some stories in ICU. I have heard stories as part of the normal conversation that happens when two people spend time together, about trips to Europe and children’s antics and Tiananmen Square and hiking adventures and eBay transactions and homeland disasters and university studies/teaching and election reactions and partners’ jobs and migrating to Australia and weekend entertainment and new houses and swimming lessons and podcast recommendations and ridiculous diets and Duterte’s merits and sporting injuries and religious experiences and favourite foods and more. And – perhaps because my quiet presence and concise questions encourage a deeper level of revelation, or maybe this is normal for nurses? – I have become the suppository repository of all secrets – pregnancies, disgruntlements, interviews, relationships, and hopes and dreams. As ‘Ryan’ says when the bright spotlight is turned on over me, ‘No matter how hard you interrogate me you won’t make me talk’.

I have learned to use my new voice in ICU. When I was diagnosed with motor neurone disease, the bodily loss I most feared was not my arms or legs or swallowing but my speech. As I lost walking and dressing myself and scribbling notes and swimming and toilet solitude and hugging, but was still able to speak, in public, with friends and family, I dared to hope I might keep speech to the end. But ‘to the end’: aye, there’s the rub. It turns out that when push came to shove, I opted for a longer life without my voice. And I have learned to use my new voice, my words appearing on my phone screen through the magic of NeuroNode, and sometimes emitted from my speaker as Ryan. We have learned to communicate with this new voice. I can still tell terrible jokes. I can still chat with Kimi about schoolwork and friends, and Densil about the Guardian vs Australian’s take on the world. I can still discuss Australian politics in extremely polite terms in text messages with my neurologist. I can still do cryptic crosswords with my sister and sister-in-law, and play Words with Friends. I can still share in the up-and-down lives of dear extended family and friends who visit or exchange messages from afar. I can still write, and I have learned to write for this blog. And I can still make friends, friends I hope to keep beyond this hospital stay: gorgeous, funny, kind nurses (one of whom is being trained as a carer), sweet, clever, gentle porters (one of whom has been trained as a carer), another patient’s generous, gregarious, empathetic daughter, who brings jaffa brownie and beers to share, and more.

I have learned to be patient in ICU. I have been here so long that I rarely have new agency nurses. But one recently told me, several times, that I was testing his patience. It does indeed require patience to care for me, waiting as I painstakingly type instructions, letter by letter, about how to position my head, pillows, glasses, vent tube, shoulders, sleeves, right arm, right elbow, right hand, left arm, left elbow, left hand, smooth pillowslip, hips, knees, right leg, the other right, left leg, feet, catheter, sheets, bed height, phone, to minimise my discomfort and give me a shot at sleeping for a few hours of his 12-hour shift. My patience, at having to give such instructions, usually sits in the background, with perhaps a mutual acknowledgement that patience is required on both sides, but has been something I have been conscious of since that impatient nurse (and, y’know, eight months!). What boosts my patience is the love and patience of those around me, specially my gorgeous family, who have lived with me in hospital for eight months, taking the time to visit several times each week, sometimes waiting futilely for me to wake up, patient with my slow communication, patient as bedpannery or blood pressure checks take priority, patient as I was in hospital for their prize-winning solo night performance, for presentation night, for the summer holidays, for Escalade, for Christmas, for New Year’s, for the start of Year 8, for Densil’s birthday, for Kimi’s 13th birthday, for the autumn holidays, for Easter, for her first stage band performance on baritone saxophone, for our wedding anniversary, for the winter holidays. That, my friends, is patience. (Have I told you how proud I am of those two?)

I am keen to get home (understatement of the year!). But I am grateful to have lived and learned these eight months, and to all those who have shone light and love and laughter along the way.

Thankyou!

Despite my parents’ best efforts I have never been good at translating my genuine feelings of gratitude into timely thankyou notes. It is remarkable that I began writing this on 3 May, just one day after I turned 50, and six months since that life-defying, death-defying day that precipitated this ICU sojourn; and appropriate that I’m finishing this instalment on 7 May, 76 whole months since my MND diagnosis. So I type, 50 times:

Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou! Thankyou!

I’m so grateful to be alive, for this life, with Densil and Kimi, who came on Thursday with stories and jokes and presents and dinner and a burpday coke; with other family who have visited or will with deliberately dissonant happy birthdays and hugs and laughter and a beautiful crocheted rug; for nurses who surprised me by festooning my room with ocean-blue balloons, and happy birthdayed me with cake (and another night-shift piece for good measure), who tend to my body as well as our hearts; for friends who sent cards and messages, who are helping behind the scenes, who have visited or will; and for all of you who responded to my birthday post (A 50th birthday invitation) with warmth and generosity and creativity, elevating me and raising awareness and funds with your 50s and Michaela’s spontaneous radio interview organisation and your donations. As always, I am grateful for the wonderful MND community, which lost another shining star in Adam Marcus, way too young, this weekend, and my heart aches for his wife, kids, parents, brothers and other family and friends. We need a cure for this arsehole of a disease (to quote my favourite neurologist).

Thank you for your 50s, so far including:

1. A 50km leg-testing bike ride (S), 50 minute ride (J) and 50 rides started (J)

2. 50 carefully spaced dots (M & A)

3. Compost meditatively mixed from 50 ingredients (K)

4. 50 dog pattings (E)

5. 50 unwitting bodily eruptions: sneezes (R), burps/minute (L), and bottomly contributions (P)

6. 50 day-brightening smiles for friends and strangers (R)

7. Selection of 50 acoustic covers (D)

8. Sharing 50 memory-soaked photos of an MND-stolen grandma (K)

9. A 50-minute Taronga Zoo visit watching Sumatran tiger cubs frolic (S)

10. Documentation of 50 reasons for gratitude (A, H)

11. Parental help with 50 maths problems (P)

12. 50 good deeds – including supplying me with chocolate mousse! (P)

13. A magnificent 50 x 50 photo montage celebrating our long friendship (B) [see illustration, Bruce Long]

14. 50 dizzying cartwheels (N)

15. 50 biscuits baked (J, L) and (is it possible?) 50 jaffa cakes eaten (K)

16. The complimenting of 50 strangers’ actions (I)

17. Awareness-raising solicitation of 50 retweets – exceeded! (S)

18. 50 runs (L: I fondly remember some we ran together) and 50km of running accumulated (G, K)

19. 50 hours of door knocking for the fabulous Jordan Steele-John (M)

20. 50 thanksgivings (C, H)

21. Plantings: sweet peas (V, reminding me of k’s quick response when I said ‘Thanks sweet pea’; ‘Are you talking to me or the pee?’); native violets (N); blue gums (D); assorted veggies (L)

22. Centennial Park collection of 50 pieces of discarded rubbish (C)

23. 50 Camino candles lit (J) and 50 candles extinguished (B)

24. 50 Indochinese offerings anticipated (C)

25. 50 sit-ups with a smile (G, Y)

26. Walking – the simple, physical pleasure – 50 sandy strides (M), 50 mindful meanders by month’s end (K, S), 50km of Sydney-side walking (L, J), 50km per week (J)

27. 50 furry friend photos by pet-sitting world travelers (T)

28. 50 pages per day of book-reading (S)

29. The harmonious layering of 50 Jubilate Deos (I)

30. 50 hearts collected, a symbol of her brave loving struggling heart (L)

31. Floral photos (breaching the ICU no flowers policy): with botanical names (J), from neighbours and her veggie patch (M), from our neighbourhood and garden, a wonderful glimpse of home (J)

32. 50 skips, on the to do list (C)

33. 50 (only?) *%¥*s (S)

34. The ascent and descent of 50 quadrangle stairs (R)

35. The puzzling of 50 puzzles (S)

36. 50 strong push ups (J, S)

37. The scribbling of 50 beautiful words (N)

38. 50 dances (J)

39. 50 exercise repetitions (B), lunges (T) and squats (D)

40. Consumption of 50 pieces of licorice, whereas I’ll stick with my delicious doses of aniseed flavoured Gaviscon (D)

41. 50 bassoon practices-make-perfect (A)

42. 50 photos (R, S)

43. 50 hand written cards (S, L)

44. 10 days x 5 minutes of yoga warm-up (J)

45. Crocheting 50 art installation flowers (L)

46. 50 acts of kindness to complete strangers (R)

47. 50 hours (who’s counting?) up ladder painting (J)

48. Swimming (hurrah!): the big 5km to be attempted (A), and 50 laps of various pools (E, E, H, J, R)

49. 50 hugs (E, M, M)

50. And, some with a 50 theme, some not, MND donations – thank you!

I’d love to hear about your 50s that haven’t made this list, or have moved from conceptual to implementation phase. And, again, thank you!

A 50th birthday invitation

My carer training – two carers working alongside my nurse from 10:30 to 2:30 each weekday – has so far been rostered through to 2 May, my 50th birthday (otherwise known in Australia as Happy Bowelcancerscreeningkitday). Given the skills needed to transfer me, look after my trachie and vent, communicate, deal with emergencies etc, I’m anticipating that an additional fortnight or three of training will be needed (though 6 months in ICU on my birthday would be a mathematically neat time to go home).

I’ve always been a fan of birthdays as a celebration of the accumulation of years. Our rambunctious childhood birthday parties always involved blowing out the right number of candles on the cake. When I notched up a quarter century my work with ABC audience research meant that I noticed my demographic shift from the compact 18-24 years to expansive 25-39 years categories employed in radio ratings. Six years later I observed another shift, as (mostly older) colleagues sharing my birthday cake suddenly no longer asked my age: I was a bit affronted by their politeness with its implicit assumption that I wouldn’t be comfortable revealing my post-thirty age (that birthday’s celebration also included a beautiful rainy evening climb of the Sydney Harbour Bridge, during which lovely friend Penny and I inexplicably donned terrible Yorkshire/Scottish accents along with our grey overalls, and Densil may have pretended not to know us).

For my 35th birthday I had the inspired idea of swimming 100 metres for each year of my life. A small group of us swam in the refreshing Victoria Park Pool on a sunny autumn afternoon (such a glorious feeling!). As I accumulated each pair of laps I remembered something of that year of my life. The 3.5 km swim thus held my 35 years, as well as being a pleasurable experience that took time and effort and bodily strength in itself, a real celebration of aging. I continued this tradition through the rest of my 30s, sometimes opting for the indoor university pool where we normally trained, and delaying my 3.7 km until I was ready to spend that much time in the water away from my baby, who’d been expected the day before my birthday but arrived a month earlier.

For my 40th a group of us swam in the buoyantly salty water of North Sydney Pool, where a turn of your head to breathe might be rewarded with a magical glimpse of the imposing Harbour Bridge or the faint drifting sound of happy screams from nearby Luna Park. My 4 km was punctuated by cuddles with now three-year-old Kimi and pool-end chats with Densil and fellow swimmers. For some laps, most notably the last few symbolising our birth day and Kimi’s lifetime, I swam with her – breaststroke with her on my back, arms clamped (too) tightly round my neck; me on my back holding her hands, both (or one) of us kicking; short bursts of tandem dog paddle. As we celebrated our intertwined lives I delighted in my capacity to carry her and keep her head above water.

As I thought ahead to future milestone birthdays I acknowledged that at some point this tradition that demands increasing distance of my aging body might prove unsustainable, but I thought that would be decades away. I had, after all, experienced how Just. Keeping. Going. could get me to 10 km. I had no reason to doubt that my 50th could be celebrated with a swim. I did manage 4.3 km three years later but it was a huge effort to lift my aching arms forward, to pull them through the water, to keep my tired, cramping legs kicking. I berated myself for this loss of fitness but found in coming months that I struggled even to manage a single kilometre. My body was beginning to fail me.

After my MND diagnosis I kept immersing myself in water as long as I could: a Herculean 100 m swim; floating prone over the coral and fish of the Great Barrier Reef then hauled back onto the boat by my strong-armed family; another, final, glorious ocean-float with sisters and our families – Kimi by now able to keep herself aloft – thanks to the aquatic wheelchair at Watson’s Bay Baths; hydrotherapy, with friends pulling on my swimmers and wheeling me in and out of the pool. For two years there was something. But by my 46th birthday I had to be content with being showered; for the last 5 1/2 months twice a week (on a good week) in the piss-weak ICU shower.

I miss swimming, miss my strong arms and legs, miss being able to move, to float, to turn my head, to breathe. Damn I miss it! But I haven’t missed birthdays. I turned 44. And 45. And 46. And 47. And 48. And 49. And on the 2nd of May, I will turn 50. I think of friends who haven’t been so lucky, who – like me – have been carried by beautiful family, friends, carers, health professionals, MND associations, but didn’t get to 50.

I am hoping that the days around my birthday will include hospital visits (scheduled around carer training), and there might be something more after I am home. But I would like to invite you to help me celebrate my 50th birthday in lieu of my 5 km swim.

I invite you to enjoy doing 50 of something in April or May. If swimming’s your thing, swim: 50 x 100m, 50 laps, 50m. Or something else that is your thing. Bake 50 biscuits. Eat 50 biscuits. Snap 50 photos. Walk 50 km. Plant 50 seeds. Tell 50 jokes. Do 50 sit-ups. Persuade 50 voters. Play 50 notes. Pray 50 prayers. Twirl 50 pirouettes. Expel 50 expletives. Catch 50 winks. Draw 50 lines. Give 50 hugs. Breathe 50 breaths.

Please, let me/us know about your 50: what you have done, and, if you like, something about how it felt or what it meant.

And if birthdays make you want to spend money, consider a donation to the MND/ALS cause. Options close to me include:

    Or your personal favourite. Thanks!

Third cubic anniversary

27 years ago we held hands in St Margaret’s and pledged our love for each other, whatever might come.

26 years ago we moved into our current home.

25 years ago we fell in love with the first of our nieces and nephews the moment she was born.

24 years ago you transformed polished steel and giant pipes into a visceral MCA soundscape.

22 years ago we met up in an expensive, dingy room at the Greenwich Village YMCA.

18 years ago you supported me in the transition from the ABC to Network Insight.

15 years ago we spent 6 months away, in Auckland, Parma, San Fransisco, Kobe and Seoul, and you helped out as I ignorantly ordered extra pesto.

13 years ago, today, we caught a taxi home from RPA with our tiny precious k.

11 years ago you cheered me on as I swam around Plantation Island.

10 years ago you cunningly scheduled our 3 months in Sendai to start the month after my PhD submission deadline.

9 years ago we drove to Victoria hoping to farewell Dad, and on the way home you detoured to Canyonleigh to take beautiful photos and collect stones for his funeral.

8 years ago we walked k to her first day of school.

7 years ago we looked out an aeroplane window at the Southern aurora.

6 years ago we held hands as we received the dreadful news that I have motor neurone disease.

5 years ago we returned from a wonderful cruise and had some precious time with your Mother Mary during her final weeks.

4 years ago we welcomed our furry lucky tiger.

3 years ago we wheeled and walked our annual stretch of the Bright rail trail.

2 years ago we got used to emergency trips to hospital.

Almost 6 months ago you and k helped save my life.

Yesterday I asked if you could bring another dress in to hospital.

And today you did.

Thanks for everything, dearest Densil. I love you.

Next gen MND awareness

My gorgeous niece Susy is in the high school leadership team that decided to organise an MND fundraiser. In lieu of me speaking – because, y’know, the whole no-larynx-bed-103 situation – Kimi and I wrote this for Susy and her to read in assembly. To say I’m proud of these two doesn’t come close!

*****

We were going to ask Kirsten Harley, my auntie and Kimi’s mum, to come and talk to everyone about motor neurone disease. But in November she had her voice box removed as part of life-saving surgery to connect her to a ventilator, and she is still in hospital.

So she and my cousin Kimi have written this and weI will play some video from 2 years ago.

*****

Everyone, put your hands in your lap. While this is being read, imagine that even if you try your hardest, you can’t move your arms.

Now, imagine you have an itchy nose, or a hair tickling your cheek.

Now, imagine that you also can’t speak.

This is some of what it is like to have motor neurone disease.

*****

Motor neurones are the cells in our brains and spinal columns that carry messages to the muscles that enable us to move, speak, swallow and breathe. In motor neurone disease, some combination of environmental and genetic factors causes those cells to start dying. At first, one part of the body starts to weaken: my Auntie/Mum had cramps in her legs and started falling over. Then, it spreads, piece by piece, until the person can’t move, speak, swallow or breathe. It can be very quick or more gradual. Kirsten is lucky to have survived 6 years since diagnosis; many people die within 2 years; most die within 5 years.

More than two Australians per day are diagnosed with MND. And more than two Australians per day die with MND.

There is a lot still unknown about what causes MND, and no treatments – yet – that significantly slow its relentless progress.

*****

There are lots of things my Auntie/Mum can’t do any more.

She used to do ocean swimming and running. Now she can’t even stand.

She used to love her work teaching at university, but she had to retire when she was 45.

She used to grab a coffee on her way to the station. Now she has to be fed mushy food that is easy to swallow.

She used to hug, and travel, and dress herself, and sing out of tune, and adjust her glasses, and lie on the grass, and catch buses, and cook. She can’t do any of those things. She can’t move or speak or breathe by herself.

But:

She has amazing technology that means she can use minuscule thumb twitches to control her phone, to blog and write and text and play and even speak with a disturbing synthetic American voice called Ryan.

She still has deep friendships and support from carers and feels surrounded by love.

She still has a sense of humour.

She still loves being a mum and auntie.

And we all feel gratitude and hope when we witness funds being raised for research, that it will lead to a future without MND. Thank you!

*****

Now you can have your arms back. Use them for good!

*****

This is a short video MND Australia made two years ago, when Kirsten could breathe and speak and Kimi was a lot younger.

https://youtu.be/wZrZkiV5H6w

Dad

9 years since evil mesothelioma snatched away the loving love of Mum’s life and our dear Dad and proud Grandpa and uncle: extravagant friend, self-confessed glutton, psurfer (silent p), extroverted raconteur, messer-about-in-boats (and caravans and cars), sneaky dog feeder, Liberal-turned-refugee-activist, nature lover, loud reader of real estate ads, softy, pipe dreamer, Luddite, family man, and Avant-garde photo bomber.

The NDIS

In 2012, when I was part of a team teaching Health Science students about Australia’s healthcare system, I attended a guest lecture by John Della Bosca, campaign director for the National Disability and Carers Alliance’s Every Australian Counts campaign, about progress towards a National Disability Insurance Scheme. Like most Australians, I was excited about the prospect of improved support for those who picked a disability parcel out of life’s lucky dip. However, even with popular goodwill, the political and organisational challenges were daunting, and with my sociological hat on I considered the central notion of enabling people with disability (PWD) to enact choice was laudable but problematic.

As I munched on my tofu salad baguette and we chatted with John after his lecture I had no inkling that the NDIS would be personally relevant. I thought little of my cramping legs, and blamed my new glasses, tiredness, plantar fasciitis for the fact that I’d tripped and fallen a half dozen times so far that semester. I did not yet know that by the time symptoms first appear, some 70% of motor neurones have already died; nor that motor neurone disease would keep on taking.

Between the Gillard Government’s introduction of the bill to establish the NDIS in November 2012 and the passage in March of the National Disability Insurance Scheme Act 2013, I received the diagnosis that would relocate me into the PWD camp. Even so, the Scheme felt more of social and theoretical than personal interest. In workshops organised by colleagues I heard about the mix of fabulous new support, variability and chaos that was happening in trial sites (as you’d expect with a pilot, from which all the learnings would be learned and improvements made, or perhaps not). The mid-2016 date flagged for national rollout of the Scheme felt both (excuse me being a sceptic-pants) unlikely to be achieved and well beyond the horizon of typical life expectancy within which I was living.

As 2016 arrived, and I was increasingly disabled but still very much alive, I started to take seriously the possibility that I might actually become a beneficiary (to focus on the upside) of the Scheme. We were already struggling at the limits of Homecare available under the existing State Government Scheme, which I was hoping would be rectified. I was sad that I would lose access to my fabulous NSW Health allied health team. I was less than reassured to receive several NDIA phone calls for someone entirely different due to a mixup in paper(less-office?)work.

After a session with my MND NSW regional adviser to talk through the kinds of support that I should request in my plan, I had my first planning meeting in October 2016. We met with a Local Area Coordinator, who listened and empathised and asked that my MND association rep send her documentation. As far as I can tell, she then passed on – something – to a black-box-enclosed mystery planner, who generated my first plan.

From looking at it, I could see that our arguments for a six-month plan and coordination of support had washed: a win! I was perplexed by the disparate figures on the printed plan and online portal (I’ve heard people say you need a PhD to disentangle NDIS plans; turns out it doesn’t help), but there was funding for extra hours of care. As I’d heard was standard for people with MND, some basics were missing and we lodged an immediate request for plan review, which fixed the problem. My allied health team conducted reviews and lodged reports with quotes for equipment that would enable me to continue communicating and be safe.

Come March 2017, I was lined up for an interview with Dan Conifer for an ABC News story about the NDIS and people with neurological disabilities. In a preparatory phone chat I discussed my experience to date, mentioning that I was waiting to hear back about the communication equipment and shower/toilet commode. In a piece of exquisite timing, in the day before our interview I received correspondence denying the former on grounds including ‘value for money’: bluntly, it seemed the decision-maker wasn’t convinced I would live long enough to justify the cost. Needless to say, this became its own ABC Online news story (my post with links is here: NDIS meejah interview). The commode was approved after a shitload of extra paperwork by my occupational therapist, then its arrival delayed by a few more months because, as far as I can tell, the funds had been allocated in a way that the NDIA accountants found too complicated to deal with!

It took us some time to regroup and build a successful case for comms technology (delayed at the start by some pesky surprise hospital admissions; delayed at the middle/end by some no-surprise NDIA delays). Possible ingredients of the recipe-for-success included: trialling different technologies, alignment with my NDIS plan goals, exhaustive reporting using the NDIA’s form de jour about the pros and cons of different options, supportive letters from my medical team, general education of the NDIA about the needs of people with MND by the state and national MND associations, behind-the-scenes lobbying of persons within the NDIA, presumably some work by bureaucrats within the NDIA, and (perhaps) the aforementioned news story. I am incredibly grateful to all those involved and that funding of the NeuroNode was finally approved in 2018. Without it, I would be not only paralysed but unable to communicate: the classic ‘locked in’ condition that MND imposes.

Since then, my interactions with the NDIA have been uniformly positive, assisted by my wonderful coordinator of supports, Alex, from MND NSW. Planners have come to meetings at home and have created plans with adequate support.

My most recent planning meeting, held in the ICU room in which I have now been encamped for three months, was high stakes. Getting home to my beautiful family after my tracheotomy and laryngectomy is contingent on having in place around-the-clock care, with carers ready to suction my trachie, deal with machines that go ‘ping’ and the like, as well as all the exciting personal care that I required in my pre-ventilated life. Funding for this was in the process of transitioning from a State Government scheme to the NDIS, so there was a risk of being caught in the middle. Background negotiations by my fab neurology team clarified the NDIS was our best shot.

I was dressed to impress for the planning meeting in a fetching blue gown, subtly accessorised with a nasogastric tube. The IV stand holding my phone boasted a new artwork by my daughter, Kimi, a quickly sketched representation of my goal destination, home. The planner and his offsider, Alex, my husband Densil, my neurologist Dom and MND clinic nurse and several senior ICU nurses crowded around my hospital bed (my mum, who had spent the night in ICU after a hip replacement, also made a brief appearance, waving from her bed on her way to the ward). The planner came prepared: he had read the documentation, made an effort to understand my needs – as a person with advanced MND on mechanical ventilation, as a mother and wife, as a writer and community member – and had thought about the best fit between the NDIA guidelines and our situation. He was empathetic and careful, and the plan we received a few days later reflected this, including – of note – the required 29 hours per day of carers (with two carers needed for hoisting, morning and night) and funding for ventilation equipment! Hurrah!

I don’t have the words to express how deeply grateful I am to those who worked to make it happen so smoothly, and Australian taxpayers for funding the NDIS. Despite my whinging about some of the frustrations of dealing with the NDIS, I appreciate how lucky I am that I have lived long enough to have its support, and that its support will enable me to continue living a meaningful life, and (once carers are recruited and trained) return home to my family. I understand how difficult it must be for those whose MND diagnosis at age 65+ means they must battle the greater frustrations and constraints of the aged care system. And I sincerely hope that my experience of an increasingly user-friendly NDIS isn’t solely due to the excellence of my advocacy team, but signifies improvements across the board. Ordinary life is extra challenging for those of us with disabilities: the NDIS should help, not hinder.