The Seven Year Itch

Can you believe it’s been seven years since you and I – for better, for worse, for richer, for poorer, in sickness and in health – pledged ourselves to each other, ‘til death do us part? Seven whole years.

Do you remember our wedding day? To be honest, I wasn’t ready. I knew something significant would happen when I booked that appointment with a neurologist, but I didn’t expect to get hitched, to you. We’d have dressed for the occasion if we’d known. I’d heard your name, of course, from your decades-long relationship with Stephen Hawking, but considered you, at best, an acquaintance. I hadn’t noticed it was you stalking me, running your deathly, long fingers down my spine, tracing each nerve, sending shivers down my muscles, then pulling out the ground from under me. For months, years, you’d been grooming me.

Tears toppled down our cheeks as Densil and I were formally introduced to you. The neurologist was clearly uncomfortable in her matchmaker role, procrastinating before naming you and obfuscating so that I had to ask if I’d understood correctly. Yes, she was telling me you’re a serial (and parallel) murderer of your spouses; typical survival is two to three years.

You’d think we’d have pulled out then, but we had no choice: I was already locked in to becoming locked in. It didn’t happen straight away. I didn’t notice a honeymoon as we were struggling with shock and fear and grief but, looking back, I still had my body then. I could still tap numbers into my phone and hold it to my ear and talk to my Mum, my siblings through tears, sharing this terrible news, and love. I could still tenderly hug Densil and our darling Kimi, snuggle together in bed, reach in to kiss her so-soft cheeks, and try to explain. I could still walk to the station and catch the train to the city and climb the steep theatre steps and sink my bum into the seat and convey the proffered malteasers to my mouth and join the standing ovation. I could still sit at my laptop and book an uncomplicated family holiday to Tasmania, and jump on a plane and traipse around the art gallery and rug up to enjoy little penguins waddling up the beach and lie supine in the grass to watch sunbeams and gum leaves dance. I could still meet up with friends for beer or coffee, and embrace and hold hands and weep and laugh and talk, about life and death and faith and uncertainty and love and work and ways to live. I could still go to the pool, adjust my goggles, and in communal solitude glide through the water, arms and legs working together, head turning sideways to gulp the air, then afterwards I could peel off my chlorine-scented swimmers, lather shampoo through my long hair, and stand under a hot shower to wash myself new. I could still work, collecting books from the library to read on the train, scribbling notes, meeting with PhD students, discussing drafts with colleagues, writing and rewriting, finding examples to make lectures engaging, circulating amongst students to answer questions, Skyping collaborators, speaking at conferences. I could still collect Kimi from primary school, pick up some groceries, decide what to cook for dinner, and sit eating in front of the TV. And when I felt exhausted, as happened more often, more quickly, I could still walk down the hallway, s(h)it on the toilet, wash my hands, brush my teeth, put on my pyjamas and occupy my half of the bed.

As you took over my body you took these things from me, from us. You have taken and taken and taken: my arms and my legs, my fingers and toes, my trunk and neck, my breathing and voice. You have not yet rendered my face an immobile mask or stolen my swallow but I know that these too are in your sights. A year ago you very nearly took my last breath. Through some combination of expert medicine and attentive care and family love and grace and luck I was revived. And compounding my good fortune, we were given the chance to have surgery and full-time care to enable life-prolonging ventilation.

After seven years with you I’m feeling the itch (actually, right now, it’s more the annoying tickle of something in my right eye; have you tried finding the words to explain how you want someone else to wipe your eyes?). I have had enough of you; I want a divorce, to go back to my old life.

But it’s here that the metaphor falls over. I know I can’t be rid of MND, but it turns out there is much to appreciate, enjoy, love about this life, even with MND. I am lucky to have had these seven years, a gift unimagined when we were given the diagnosis. I’m lucky to have such an excellent health care team. I’m lucky to have technology and equipment that allows me to to communicate, breathe, have my throat cleared, be toileted, showered, moved, sleep. I am lucky to have carers who attempt to implement my peculiar eye-wiping instructions, who (to quote Densil) ‘take the piss’, who care for me in so many ways. I am lucky to have had fabulous holidays, shows, outings, work and awareness-raising projects. I am lucky to have connected with such extraordinary people in the MND community (and grieve for too many gone). We are lucky to have had such wonderful, generous support and love and friendship from our beautiful communities. I am lucky to still live a life enriched with dad jokes and chocolate and art and birds celebrating rain and saxophone and feline closeness and beer and public broadcasting and niece photos and reading and puzzles and writing and coffee and visitors and more. And I am lucky, so lucky that my real family, my gorgeous Densil and Kimi, have been with me, and I with them, with love, kindness and cheekiness, for better, for worse, for richer, for poorer, in sickness and in health.

Nativity

Our family is celebrating its own special nativity this week, with the birth of darling Elspeth Iris Isolde Harley Train, our much anticipated, much loved niece and cousin (and grand/child). We’re joy-filled at your safe arrival into the world, delighted for your clever, besotted parents, Lexi and Tim, and thrilled to watch your ongoing becoming. We love you!

And wishing y’all peace, love, joy and kindness this Christmas. Thanks to all the wonderful firies and everyone working today, including my fabulous carers!

Communication

On this first anniversary of my tracheotomy and laryngectomy (to quote my darling daughter Kimi, being stabbed in the throat and losing my voice), I am posting a piece commissioned by Control Bionics, about their technology which enables me to communicate, remain connected with family, friends and the community, and live an enjoyable life.

I wonder what you are doing as you read this. Perhaps you are sitting on the bus, scrolling down your phone with one thumb and lazily scratching your knee with the other hand. Perhaps you are lying on your tummy in bed, turning your head now and then to read out lines to your half-asleep partner. Perhaps you are sitting at your computer, pushing away the cat and sipping a cup of tea as you read. Perhaps you are ensconced in the smallest room in the house, the only way to have any peace. Or maybe – like me – you can’t do any of those things.

In January 2013 I was diagnosed with motor neurone disease (MND, or ALS), a degenerative neurological condition in which death of the motor neurones progressively affects the muscles we use to move, speak, swallow and breathe. Now I am almost completely paralysed, happily still able to smile and eat. A year ago I had life-saving surgery – a tracheotomy and laryngectomy – so that a ventilator can breathe for me. Without my voice box I can no longer speak.

When I was diagnosed my biggest fear was leaving our daughter, then aged six, without her mum. Next was losing the power to communicate, an ability deeply intertwined with my identity as a lecturer, writer, family member and friend. Many people worry about having others help feed them or wipe their bum (better than going without food or bum wiping I reckon); for me losing the power to communicate loomed as a much bigger challenge.

That year of diagnosis two things helped allay my fears somewhat. One was at an MND NSW information day seeing specialist speech therapists discuss the range of available technologies, from simple alphabet boards to iPad apps, switches and eye gaze. The other was watching an episode of Australian Story on ABC TV which featured Peter Ford and his invention, the Neuroswitch.

The Neuroswitch, now NeuroNode, has three sensors that sit on the skin over a muscle, in my case on my left forearm. When I try to twitch my thumb they pick up the electrical signal running from my brain down my arm, and the computer inside the NeuroNode converts that into a mouse click which is sent to my device using Bluetooth. When it is paired to my iPhone it uses the phone’s inbuilt switch control function so I can choose apps, scroll through the keyboard and select letters, get the phone to “speak” using its synthetic voice, Ryan, and – with patience – do anything you can do on a phone except have an old-fashioned conversation. It’s truly life-changing!

I am very lucky that I have been able to trial and use developing incarnations of Peter and the Control Bionics team’s technology, with support from my fabulous neurologist, Dominic Rowe, and the NDIS. The latest, the NeuroNode Trilogy, combines new technologies to massively increase the speed of writing (I have written to here in one two-hour session).

The main differences for me are the updated NeuroNode with internal battery and its combination with eye gaze technology to interface with a Surface Pro tablet. The previous NeuroNode used rechargeable batteries that theoretically lasted four hours but, as is their wont, degraded to the point where they needed changing every couple of hours. This was ok with carers (or during my long hospital stay, nurses) who were attentive and understood the critical importance of communication; not great when I woke with the battery dead and unable to call out for help.

The new NeuroNode 3 has an internal battery that lasts approximately 24 hours (more, in my experience). Each day, I spend about an hour in front of the telly with the NeuroNode sitting on its charger and a carer in the room in case I need suctioning, a drink or some other adjustment (this could be done during sleep).

The Trilogy also includes a Surface Pro with eye gaze cameras and Smart Box’s Grid 3 software. As I understand it, with conventional eye gaze, moving your eyes to a certain point on the screen moves the cursor to that point, and then blinking or holding your gaze for a set time is like a mouse click. With the Trilogy, my eyes move the cursor but, with a thumb twitch, my NeuroNode “clicks” the mouse, selecting the letter, word or function.

The Trilogy comes with a suite of apps, including some great ones for kids or non-verbal people, and, because this is cutting edge technology, Peter and the Control Bionics team have been helping to keep enhancing the functionality. The main speech app, Text Talker, has excellent predictive text (which learns from the phrases and sentences I use), and enables me to generate text about as quickly as my former able-bodied self could have typed it. This means that I can participate in conversations with my family and friends much more easily than before (one friend fondly described my previous delayed interjections as like a beer-fueled pub conversation). This app also comes with four voices, including my new default, “Lisa”, whose gently Aussie timbre is as clear, but less aggressive than, Ryan. The voices can be manipulated for Halloween-esque fun, and we have also enjoyed playing with the message banking function, recording select phrases in a variety of friends’ (or American President’s) voices. (If I had had this before my laryngectomy I could have recorded phrases in my own voice, something I would recommend to people with conditions like MND who know that they might lose their capacity to speak).

For writing (like this) I prefer to use the basic Notes text editor. When it first arrived, the onscreen keyboard had a curious anomaly – no comma (there was, however, a dollar sign – perhaps a metaphor for contemporary priorities!). Peter has since edited the keyboard. He has also set up WhatsApp and email as my main ways of communicating with others at a distance and sending text between the Surface and my iPhone. I’m still a novice, but exploring use of the Trilogy for web browsing, YouTube, Facebook and directly controlling the computer environment.

For many users, and perhaps – down the track – me, the Trilogy will work as the sole communication device. Personally, I prefer to move between that and my iPhone. The Trilogy is far superior for writing, quickly and easily, but I also like being able to use the smaller phone screen, which doesn’t need to be directly in front of my face, for when I want to play games or check social media or order dinner while I listen to a podcast or watch TV.

I may have lost my ability to move and talk and breathe by myself. But I am so lucky that this technology enables me to communicate, write and play!

Another year

A year ago my family and I had a bad day, but things turned out ok.

I woke up in respiratory failure, probably caused by aspirational pneumonia, and had lost consciousness before the paramedics and carers had worked out how to get my paralysed body into an ambulance. The inability of my bipap-assisted breathing muscles to expel gas led to such carbon dioxide necrosis that I am lucky to have only lost six hours. That precipitated our decision to extend my life with a tracheotomy and laryngectomy, and what turned out to be nearly ten months in hospital.

I am feeling pretty darned lucky to have had this year. I recently challenged my nephew to write 50 things he is grateful for, which is why my list, from the last year, isn’t longer:

The sight of a fat skink soaking up the sun.

Beautiful dresses designed and made by Eleanor.

Hearing Kimi chortle as we introduced her to Black Books.

The shiny, compassionate leadership of Jacinda Adern in the aftermath of the Christchurch murders.

Fine physios and doctors, some of whom share a fondness for ocean swimming.

The trinkets on my stand (Heena’s yellow cat, Ming’s black omamori, Helen’s red heart, Lexi’s embroidered ‘suppositories of all wisdom’ and

Densil’s perennial Halloween spider).

Cold beer with Goan take away.

Cryptic crossword sessions with Anne, Sonia, Sallie, Dave and Estelle.

ABC Listen.

Espresso through a nasogastric tube.

Kimi becoming a teenager.

The sisterhood of nurses.

Walking in my dreams (and doing sit-ups in Fran’s).

A roomful of Christmas caroling relatives.

Our cat’s sudden appearance when Kimi arrives home.

Tania and Tianna accompanying us to see Tim Minchin’s hilarious, clever show at the State Theatre (my first outing, on day 147).

My beautiful Mum coming to Sydney to have her hip replacement in the same hospital, and being much more comfortable afterwards.

Bruce’s weekly mandalas, linking us across the world.

Not being able to smell my own or others’ farts – a happy side effect of the trachie – though a loud one can still wake me in the dead of night.

Having the opportunity to vote from my hospital bed.

The arrival of packages with furniture-on-wheels and interrogation spotlights and mirrors ordered by Densil to improve the workability of our house.

Crumpets with Emma’s lemon curd and chocolate hagelslag.

My wonderful neurologist Dom’s care, and sweet transformation to Papa Dom.

Visits by cousins and uni friends and school friends and work friends and parenting friends and overseas friends and interstate friends and coffee friends and church friends and carer friends and friends made in hospital.

Podcasts: Chat 10 Looks 3, Wilosophy, and swapping suggestions with Eva.

Being included in parent/teacher night via FaceTime.

Steve the coffee guy bringing special packets of Madeira cake.

Julie (recently named Australia’s most influential woman for her important, thoughtful work on vaccination) taking the time to suggest and create this blog.

Sweet Sydney tap water.

Texting and Tele-listening to continue my work on the MND NSW Board into a 7th year.

Visits by nieces and nephews – Zoe, Ian, Jonty, Marty, Hannah, Susy, Aydin – with (variously) tales of work and study, excellent jokes, statistical interpretive dance, empathy and art (Why did the Little Mermaid start wearing sea-shells? She grew out of her B-shells).

Margaret assigning ‘Bring many names’ at Pitt Street.

Homemade cake from Bob, Andrea and Nordi.

Body Shop lip balm.

Meeting more gorgeous people in the online MND community, and Alexandra and Luke face-to-face.

All the wonderful, creative, life-affirming sets of 50s done by so many to celebrate my birthday, including MND Australia planting 50 cornflowers outside Parliament House.

Last precious conversations with dear family and friends.

Advice and encouragement from Justin and Rachel, who preceded us down this trachie path.

The joy of sax: Densil and Kimi jamming at home, videos of solo night and busking, and live, with stage band, at the Wahroonga Food and Wine Festival.

The evolution of NeuroNode, which enables me to communicate, and Peter’s cheerful support, even at 3am.

Updates about Lexi’s pregnancy. The best.

Conversations with Jack, expert lip reader and mind reader.

The soft, gentle drumbeat of a feline tail on my arm.

The closing of the Uluru climb (my God, the grace and patience of the Anangu traditional owners).

Waking to Danny’s smiling face and knowing it would be a good day.

Alex and Kristina and Dom’s smoothing of the NDIS waters.

Flowers from Tokiko and Aunty Meg and Kathryn and Liz and Pete and G and Chris and Amy and J’s mum.

The liberation of my nostrils from my bipap mask.

My carers learning to work well together.

Densil and Kimi’s witty banter, and knowing they’re ok.

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.