On deciding to keep living with MND: A triptych

On Thursday 22 November 2018, a few weeks off the sixth anniversary of my diagnosis with Motor Neurone Disease (MND)/Amyotrophic Lateral Sclerosis (ALS), I had major life-altering and life-prolonging surgery. These three pieces of writing, originally shared with friends on Facebook, together convey my family’s personal experience of me living with – and almost dying from – MND, that is enormously challenging and different to the life we’d anticipated, yet full of love and meaning and joy, a life we wanted to continue

7 July 2018

It’s 5 and a half years since that life-upending Monday morning that Densil and I were told that I have motor neurone disease, with typical “progress” of 2-3 years; 5 and a half years – 11 semesters – since we had to confront the fear of leaving our darling then 6-year-old Kimi without her Mum.

Not long after my diagnosis I boarded a train and, supported by my walking stick, lowered myself onto a seat at the end of the carriage, joining a couple of other people with disabilities. I was suddenly hit with the realisation that I was, in fact, joining this group, and that my particular progressive disability promised a life constrained within increasingly smaller circles.

And the radii have shrunk.

Once, we could travel the world, lugging bags onto planes, whinging about jet lag, working and holidaying, exploring Bulgaria and Buenos Aires, Sweden and San Fransisco, Tokyo and Te Anau via museums and supermarkets, bicycle and train, avian and linguistic species. Then, holidays required more planning, hiring equipment and carers, wheelchair-friendly rooms and transportation, not straying far from the security of Medicare, but still delightful trips to Uluru and Kiama, Port Douglas and Bright, New Zealand and Newcastle. Now, leaving the house is a major undertaking, and I am thrilled that Densil and Kimi will have a few nights away – for the first time in over a year – during these school holidays.

Once, I could swim: laps in the pool with training buddies, salty Sunday-morning ocean and harbour events, 100m-per-year birthday celebrations, that 10km Fijian island circumnavigation, enjoying the rhythms, the journey, my fitness, the cool shimmery water. Then, there was gentle aquarobics and hospital-pool hydrotherapy, warm-water buoyancy promoting movement. Now, carers tilt back my commode to give me a hot shower, hair washing rushed by the need to replace my bipap mask so I can breathe.

Once, I stayed up late to meet deadlines or socialise or watch telly, or crashed early after too many late nights, snuggling beside Densil in our queen bed. Then, as every little movement became a huge effort, fatigue encouraged earlier trips to our head-elevating double bed. Now, carers arrive according to their weekly schedule to hoist me into, and next morning out of, my hospital bed; between their visits Densil pushes the hoist away to sleep in a fold-up bed, his exhaustion compounded as I wake him overnight to adjust my head, my mask, my blankets, my feet.

Once, I worked: lecturing, writing, supervising, analysing, marking, editing, collaborating. Then, I interspersed work with sick leave, prioritising projects and people I cared most about, lucky that I could. Now, I am a forty-something retiree, grateful for technology and sisterly help that allows me to tele-participate in MND association meetings.

Once, I celebrated the healthier, stronger – but also thinner – body I could produce with exercise and diet, enjoying an easier relationship with clothes. Then, I needed help to lift food to my mouth and my appetite floundered. Now, I make an effort to maximise easy-to-swallow calories, and yearn for the lost muscle and fat that kept my shoulders warm and my bony protuberances comfortably protected.

Once, I was on my feet, carrying my baby and her stroller up and down station steps, schlepping across campus, making nocturnal half-awake trips to the loo, hiking through the bush, running a half marathon. Then, I became reliant on a stick and then walker and scooter, and perilous falls more common. Now, I am only out of my wheelchair when hoisted, and most days only manage to travel as far as the lounge room.

Once, I could speak, chatting on the phone, giving conference papers, raising my voice in noisy classrooms, singing just for fun. Then, my public speaking focused on MND activism, but my faltering breathing muscles made it harder to be heard. Now, the bipap machine pushing air in and out of my lungs dictates the pace of my burpy speech and renders my “m”s and “n”s distorted “b”s.

Once, I looked after my bodily needs: I sat in solitude (or with traditional infant companion) on the loo, I blew my nose, brushed my teeth, scratched my itches, all without thinking. Then, I needed help getting up off the loo (and, when things went pear-shaped, the floor). Now, I need help with everything: carers do unspeakable things to my nether-regions () and feed me breakfast on the loo and Densil romantically sticks a tube up my nose to suction out the snot.

Once – oh once – I shared the load and the joys as a hands-on parent: I plaited hair and paired socks, I sang lullabies and packed lunches, I walked to school and read stories, I carried and cuddled, I dried her tears.

Then, I had to explain to our six-year-old daughter that MND is not the kind of disease the doctors can fix but the scientists are working very hard to understand it and find a cure.

Then, I got to watch her magnificent father take on a triple load with love and care and humour and style.

Then, we got to share the experience of our beautiful community of family and friends surrounding us with love and practical support: rostering meals and visits, sorting clutter and designing dresses, delivering kettle stands and postcards, crafting artworks and scrubbing ovens, ferrying me to appointments and her to adventures, traveling interstate for family celebrations and bedroom respite, bringing flowers and caffeine, sending messages and prayers, fundraising and fun-raising, sharing crosswords and lightening hospital tedium.

Then, together, we became part of the wonderful MND community: swapping jokes and learning language from our gifted neurologist, experiencing compassionate support and comradely events with MNDNSW, welcoming helpful health/care workers and technical wizardry, sharing stories in person and electronically with other MND families, admiring awareness-raising endeavours, grieving far too many.

Then, we made memories: age-inappropriate comedy shows and art gallery genius, Disneyfied breakfasts and glowstick-lit evenings, humour-filled rallies and junior band concerts, Bobbin Head fish-feeding and mystery adventures, penguin homecomings and star-studded outbacks, painting of portraits and the felicitous arrival of our Lucky Tiger. And Densil’s fiftieth birthday party with the best speech ever. Period.

Then, I watched with pride as she became an MND campaigner: selling puppies and crazy hair day-ing with gorgeous teachers and friends, chortling as she ice-bucketed me before taking the challenge herself, standing beside me in promo videos and being disarmingly insightful in media interviews, writing profoundly for school and MND walking, and continuing to welcome my public presence beside her as my freaky elephantine appearance attracts both embarrassed avoidance and curious stares. And felt her support for me as I took opportunities to speak out, with bonus soliciting of autographs from the likes of Tim Minchin and Richard Di Natale.

Then, as I Iucked into being one of those on the positive side of life expectancy statistics, I have been extraordinarily, heart-burstingly fortunate to watch her grow, developing in maturity and confidence, as a talented musician and artist, as a kind friend and conscientious student, as a punster and thinker, a beauty inside and out.

Now, I can’t hug her. But she hugs me.

Now, she dries my tears.

The circle of my life is smaller, but, filled with love, is still big enough. I love my life. I am hungry for more.

10 November 2018

What’s worse than a long stay in hospital?

A short stay in hospital.

This is my version of what precipitated this stay in hospital one week ago.

(Content warnings: life and death themes; mild coarse language; amateur understanding of medical concepts and procedures.)

I remember some of my first half hour of Saturday – struggling to breathe even with my bipap machine helping my MND weakened muscles to push air in and out of my lungs, gasping the word ambulance and my phone passcode to my terrified carers who called Densil and Kimi back from their walk to sax lesson, trying trying to breathe, seeing the ambo oxygen probe on my finger read 60% (later it went lower), then nothing.

Six hours later I opened my eyes, a bipap mask covering my nose and mouth, trying to work out where I was. I was in a white gown, my hands crisscrossed with cannulas and probes. There was an out-of-focus clock in front of me (later, when I had my glasses on, it would be joined by the back of a computer monitor with the deadpan stickered instruction: “Do not insert batteries”). Gradually, people materialised: My beloved Densil; “hello mumso,” said darling Kimi – the sweetest sound in the world; precious sister Sonia and niece Hannah; an ICU nurse; later dear sisters-in law Anne and Kathryn, and David and Aydin, and news that my lovely Mum and sister Lexi were on their way from Victoria, and that beautiful friends Lizzie and Pete, who’d planned one of their regular weekend visits, had left the waiting room and would be back the next day.

From the incomplete picture I have gleaned of those missing hours, I have realised it was much tougher for those I most love than it was for me. This is what I think I missed. I missed the initial team of ambos call in a second, better equipped to deal with this degree of serious shit. I missed Densil and Kimi arriving home – saxophone lesson abandoned – to answer ambos’ questions, pack medications, and set off to hospital. I missed myself being transferred to the ambulance stretcher, pushed into the ambulance, driven up the Pacific Highway (sirens on? I have no idea), and rushed into the “Resusc 1” bay in Hornsby Hospital’s Emergency Department. I missed Densil’s texts and calls to our families, and their calls to each other, communicating an unknown degree of seriousness. I missed having my dress cut off, ECG dots stuck to my body, a cold, hard board sandwiched behind my back for the chest X-ray (I guess they skipped the usual instruction to hold my breath), a hospital gown draped over me. I missed Densil and Kimi being ushered into a private counselling room, being asked my wishes, being given the burden and opportunity of saying that I wanted to keep living with MND, we wanted them to *try* to save my life. I missed the Emergency doctor’s phone conversation with my wonderful neurologist, Dom, who affirmed that this one of his 300 MND patients wanted to keep living with MND, that I wanted them to *try* to save my life. I missed – not such a bad thing – the insertion of cannulas and arterial lines, the former to pump drugs and fluids into my system, the latter to measure the buildup of carbon dioxide that my failed breathing was not managing to expel, that was turning my blood to acid, my face puffy and red. I missed hearing the term “CO2 narcosis”, the numbers (>180, <7), and only understand because the doctors who have seen them have told me, incredulous, that people don’t come back with blood that acidic, that they have never heard of anyone surviving with such high levels of carbon dioxide. I missed the arrival of relatives, coming and going between Emergency and the cafe, hugging and crying, being there with my darling, scared, brave Densil and Kimi (I can hardly bear to think what it was like for them – too much for a devoted husband and beautiful 12 year old who have already lost so much of their wife and mother to this shit sandwich of a disease). I missed the heroic doctors and nurses working miracles, with the hospital bipap machine, a mega-hit of steroids and I-don’t-know-what-else, to bring me back, to save my life against the odds. I missed being wheeled through hospital corridors to ICU, my quadriplegic body rolled from uncomfortable bed to ICU air mattress. I missed the hours of lying in the ICU bed, a dedicated nurse watching over me. And then – miracle of miracles, doctoring of doctorings – I woke up.

I am not sure why or how I was given this chance to spend a long time in hospital. Yes, I wanted to live. Yes, I have an extraordinary daughter and husband, who wanted me to live. Yes, we are surrounded by a wonderful community of family and friends, whose love and support and hopes and prayers sustain us. Yes, my carers, the ambos, the doctors and nurses mustered their expertise and energy and care and did all that they could. But these things are true for other people, special people, good people, cherished people, for people who don’t come back. And so, we are left feeling lucky and grateful, and working out what comes next.

21st November 2018

Moving (paralytically) forward.

After the recent disastrous failure of my breathing and the heroic work of doctors and others to save my life, and having been transferred to the ICU at Macquarie University Hospital, where I am being cared for by my fabulous neurologist and a dedicated team of nurses and doctors, we have had to make a final choice between the three breathing options available.

Option 1 – Status quo: I go home on bipap and Masky McMaskface and hope that next time aspirational pneumonia or something else triggers a desaturation, circumstances again conspire to keep me alive. If we take this option, I must remember to say “I love you” to Densil and Kimi before my carer puts me to bed each night, and we must accept the high risk of my imminent death. This is, for us, sub-optimal.

Option 2- Tracheotomy and mechanical ventilation: this involves intubation and surgery, then relying on a machine to breathe for me. It requires 24+ hours/day care. It allows some preservation of speech (given how hard it is to understand me now, this is less of a bonus than it once would have been). Escalating weakening of my swallowing muscles means that choking and aspiration (even on saliva) and pneumonia remain high risks.

Option 3 – Tracheotomy plus laryngectomy with mechanical ventilation: as option 2, except the voice box is also removed. This is more serious surgery, and has the effect of separating the alimentary (eating) system from breathing, rendering swallowing safe. It also takes away normal speech. This is the Stephen Hawking option.

Twelve-year-old Kimi insightfully put the choice (between options 1 and 3) like this:

“Mum, do you want to be stabbed in the throat and not able to speak, or do you want to be dead?”

My reply:

“Kimi, do you want me to be stabbed in the throat and not able to speak, or to be dead?”

Being here for this girl, who wants me in her life even if the price is invasive surgery and my ability to speak, is reason enough to choose option 3. Being here to watch her grow up, to see her talents and interests develop, to share her transition into teenage years, to – perhaps – even be here as she finishes and goes beyond high school, to be here with and for her beautiful father, is more than reason enough for me to choose the tracheotomy and laryngectomy. And adding to the ledger our beautiful community – grand/parents, siblings, cousins, aunties and uncles, nieces and nephews, friends old and new – who have loved and supported us in so many ways, who are cheering me on to live, simply bolsters this choice.

In my early stages with MND, when deterioration of breathing was one of several future losses to look forward to, I was aware that options 2 and 3 were taken up by approximately 10% of people with ALS/MND in the US, but not done in Australia (or so it seemed).

Then, early this year, I saw on Facebook that Justin Yerbury (a lovely MND researcher I’d chatted with a few times at MND association events and research days, and who had more recently been diagnosed with a particularly terrible familial form of the disease that has struck or will strike half the members of his family) had been ventilated. Justin had a tracheotomy and laryngectomy partway through the filming of an episode of Australian Story about his life and work, after a rapid decline in his breathing meant this was the only way to stay alive. Medical complications and getting things in place to return home meant that he was in hospital for a gruelling six months after the procedure. I had eagerly been awaiting the broadcast of an updated Australian Story, showing Justin back home with his gorgeous wife Rachel and girls and back at work searching for a cure for this monstrous disease, when my own flirtation with death thrust me into making a similar decision. Justin and Rachel have been generous and unflinchingly honest in sharing their experience with Densil and me. The first four months were the bleakest of his life, which is really saying something given Justin has lost so many of his immediate and extended family to this evil disease. We know from Justin and Rachel that the aftermath of the surgery will be incredibly challenging. But we also know that it is possible to come out the other side, together as a family and able to keep contributing to and relying upon the community.

One thing that will make the loss of my voicebox a little less traumatic than it was for Justin, and also that gives me confidence in my ability to keep contributing, is the fact that I am already using amazing communications technology, including to type this from my ICU bed. I am so grateful that the NDIS funded the NeuroNode, invented by passionate Australian Peter Ford and his Control Bionics team. It is strapped to my wrist with sensors in contact with my skin. Each time I want to move through menu items or letters on my phone I give a minuscule twitch of my (otherwise useless) thumb, and the sensors pick up this signal and convey it by Bluetooth to my phone. With different apps I can write (and “speak”) text, receive and send emails and text messages (including to request help from the ICU nursing team), interact with friends on Facebook, web-surf, read news and books, listen to podcasts, play and much more. While I’m sure there will be frustrations, I won’t have to be left in an uncomfortable position, or needing my weebag emptied or to be put on the bedpan, helplessly waiting for a nurse to notice and interpret my silent cry. I will be able to tell my family that I love them. And I will be able to keep sharing my experience of living with MND, developing my role as an MND advocate, raising awareness that is essential for attracting funding to support people living with, and research towards a cure for, this arsehole-with-haemorrhoids of a disease.

Like many of the good things in my life, opportunities to join others in awareness raising and advocacy for the MND community have been a result of luck, rather then strategy. Soon after my diagnosis in 2013 I contacted MNDNSW asking about their plans to screen the documentary ‘I am breathing’; the upshot was that I helped introduce the screening at the University of Sydney, where I taught health sociology. Subsequently I was invited to join the Board of MNDNSW, and later MND Australia’s Research Development Committee. I had the immense delight of speaking at a joyous crazy hair day fundraiser at my daughter’s primary school; along with sharing my story at an MND Australia event at Parliament House, as guest speaker at an MNDNSW Day of Hope and Remembrance, and in a filmed chat with fabulous rockstar comedian Tim Minchin before he performed the Fading Symphony with the Sydney Symphony Orchestra. I have also been interviewed for a Macquarie University MND Research Group fundraiser, an online story about NeuroNode, for several radio, TV and print media stories, and featured with my beautiful family in a documentary for the Aged Care Channel and an MND Week social media campaign.

There are many ways to live with the series of losses that is MND. Mine, by and large, is to be grateful for the many kind people in my life, and to tell stories.

Since my diagnosis I have craved, and hoovered up, stories: stories of those who had gone before, stories of those who walk/roll alongside me, stories of what might happen to my body, stories of parenting with increasing disability, stories of grief and pain and loss, stories of joy and humour and peace. I have been thrilled to add to these stories, primarily through Facebook. My sense is that our stories resonate beyond the MND community, because they remind us to appreciate what we have, of the interdependence of human life, the surprising power to adapt, the possibility of living a meaningful life in unimaginable circumstances. I am excited about continuing opportunities for storytelling, particularly encouraged by recent discussions about several collaborative projects-in-development.

Currently, my body is paralysed. I need a machine to breathe, but that is perilous. My speech is slurred and difficult to decipher, and swallowing is risky. I need help with all physical activities. My mask makes me look like an elephant.

I/we choose option 3: my body will remain paralysed. I will need a machine to breathe, safely. I will use technology to speak, but swallowing will be safer. I will need carers watching me 24+ hours per day. We have decided that my breathing tube will make me look like a (very attractive) anglerfish.

But I will still be able to love and be loved.

I will still be able to parent.

I will still be able to tell stories.

And I won’t be dead.

9 thoughts on “On deciding to keep living with MND: A triptych

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