Fourteen today!

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

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

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

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

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

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

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

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

Social isolation strategies

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

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

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

Before or after?: that is the question

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

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

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!