On five years since my MND diagnosis. And being lucky.

Six months ago as I lay in bed in hospital being treated for respiratory failure, I thought about how lucky I was to have survived 4 and a half years since my MND diagnosis. Since then in my overnight waking hours I have reflected about how ridiculously lucky much of my life has been. And today, 5 years! So here, assisted by my beautiful k and d and kaf and lex, is an incomplete list of the reasons why I feel lucky.

I was born (!) in Australia and have benefited from multiple intersecting forms of structural privilege. Many aspects of my life have been unfairly and unconsciously easy for me due to growing up a middle class, white-skinned, able-bodied, well-educated, English-speaking, urban-dwelling Australian citizen

I grew up in a family with parents who loved us and each other fiercely, gorgeous best-friend sisters and the special companionship of a twin brother. I knew 3 of my grandparents and Nanna was matriarchal glue to a wonderful bunch of talented cousins and aunts and uncles who celebrated special occasions with too much food (and plonk), serious conversation and fun. Our families have grown with lovely and loved spouses and offspring.

Our parents gave us many gifts: a sense of humour, love of reading, role models for feminine strength and intelligence and masculine friendship and sentimentality, overt affection,  resilience to public embarrassment, tuition in cake baking, bed making, cryptic crosswords, sewing and knitting (also room tidying but I was not a good student), pride in our achievements, a changing menagerie of pets, freedom to roam the streets with neighbourhood kids, and encouragement and practical support to pursue multiple extra-curricular activities – swimming, macrame, ballet, brownies and guides, diving, gymnastics, tennis, etc. Also, family adventures, camping trips with giant slugs and treacherous pit toilets, long squishy car trips punctuated by visits to real estate agents, outings on boats, beautiful bush walks, lazy afternoons and nights visiting family friends, the big family overseas holiday in New Zealand, campfires and horticulture at Canyonleigh and endless trips to the beach, where Malcolm and I were lucky that lifesavers rescued us from a rip and Dad was lucky that he too was rescued, as he attempted to save us.

My parents sacrificed to send us to fancy-(navy blue or bottle green)-pants schools, where some of my teachers loved and inspired me and most forgave me for being a smart arse. Beautiful lifelong friends did too. Maths, reading and writing – hence most things academic – came early and easily and provided pleasure. Through sheer fortuitous happenstance my academic troughs during patches of laziness or distraction or boredom or incompetence (why did I persist with French?) were overshadowed by peaks-when-it-counted, so that high school scholarships and maths prizes (and maths club ànd summer school – lucky I was comfortable with my nerdy self) and HSC geology surprises paved an easy path to university, where in turn medals and HDs and scholarships edged lacklustre science degree results off my academic CV.

As a 12 year old I followed Sonia into Christianity. A sustaining thread of faith and grace has run through my life since then, changing from youthful black and white (apologies for my obnoxious smugness) through periods of doubt and fragility, to rainbow strands of love and acceptance in the midst of uncertainty. Smucfat, TUC, Crusaders, EU, Pitt Street and neighbourhood group have provided, for times, communities of faith and friendship (including a certain friend with benefits).

At Smucfat I met a fellow whose name rhymes with pencil and starts with a d. I was charmed by his fierce intelligence, triple layer puns, luxuriant locks, cheeky grin, knowledge of the world, prowess with a bass guitar, gentleness and kindness. After a couple of years of friendship and a day where we spent eight hours on the phone (back in the day when landlines made phone calls a family experience) we started going out. I am so grateful that our lives have been intertwined since then, and for all that we have shared: a Blue Mountains honeymoon with an Elton John soundtrack, quiet moments, ordinary working days and holidays and wonderful welcoming families and tears and laughter and bushwalks, bushdances and more. Densil has made me a better person.

Amidst long caffeinated conversations and Wentworth donuts and learning to play bridge and tetris and clubs and societies and occasional classes came the casual suggestion that I should run for the Student Rep Council. I did things arse-about, becoming perhaps the least experienced vice president ever and then developing my politics. I’m lucky to have been surrounded by good people, who were patient with me, for the chance to work together and have a lot of fun.

When I finished that science degree I applied for a crazy variety of jobs. I was lucky that the guy interviewing me for a computer finance job told me honestly he didn’t think it would be a good fit. I was lucky to land an anomalous entry level job at the ABC based on a degree in computer science/student politics and casual work as a photocopier-cum-vacuum cleaner for a gay poet. I have had a (mostly) charmed run on the career front, helped along by a series of fairy godparents, moving into new areas of audience research, policy, government relations, research and teaching, alongside fantastic colleagues, doing work that is mostly interesting and meaningful, with relatively good pay and security and in retrospect occasional hilarious moments (like the time I was interviewed by the federal police).

I wasn’t one of those people born with itchy travelling feet but I have loved the wonderful opportunities I have had to explore many parts of the world, alongside Densil, and as one of the perkier aspects of academic life. Relatively close to home, highlights have included leisurely drives to Mungo National Park and Flinders Ranges and circumnavigations of Kangaroo Island and Tasmania – such beauty!

Japan has become almost a second home to us, with good friends and its own special kind of beauty. I have learned that in Parma “pesto” means raw horse mince (shortly before I became a full-fledged vegetarian). We’ve seen the Aurora Australis on our way to South America, stayed at THE YMCA in New York City, spent hours exploring the sites by foot and art galleries in Europe, been escorted around beautiful Sri Lanka, shared the DMZ-as-tourist-experience, enjoyed the Canadian extremes of Prince Rupert bear sanctuary and West Edmonton mall, and more.

A few years into full-time work I decided I needed to go back to uni and study statistics (as you do). I was lucky that my somewhat random subject choice included sociology, and lucky to be generously nurtured by my teachers. Somehow I lucked into a succession of the world’s best supervisors and interesting topics for both my honours and PhD. TASA became another wonderful community and gave me opportunities to think about the nature of the discipline, especially while editing the newletter with Nick, and teaching sociology, especially with Kris. Post-PhD, I fell into a postdoc in the new (for me) area of health sociology, which proved to be the perfect place for me to end my working life. I’ve had the luxuries of conferencing, teaching and writing, and loved so much working with Gary on our book. The more relaxed pace of PhD life (well, perhaps my flexible interpretation of deadlines) provided opportunities to re-engage a little in student politics with SUPRA and pub trivia and to return to the swimming pool after years of sloth.

Lexi dragged me along for her first-swim-of-the-year, and I was happy to discover that 2km wasn’t far out of reach. I kept going, delighting in my increasing fitness and the sheer pleasure of moving through water. Wanting to try out ocean swimming, I looked around campus for guidance, and happened upon the triathlon club, whose generous engineering student/coach/president, Karl, and team-mates, pushed my swimming further and taught me to run. On one of my swims near the Sydney Opera House, I won a lucky-drawer prize to a swimming event in Fiji, where one of my life triumphs was coming gloriously last in the ten-kilometre round-an-island swim. At my peak fitness, I felt like I could run for ever, and in my first trimester of pregnancy ran a half marathon through the streets of our beautiful Syd-er-ney.

We are blessed beyond measure that this pregnancy happened, and that it continued, and turned into our darling Kimi. I’m so grateful that she survived a somewhat hairy month-early birth and for the fantastic care we received at RPA. She’s proven a source of so much joy as she’s grown from the wee toddler who worked out that my breasts were called “nots” (“not now”, “now til we get home”, “not on the train”, “not in front of the vice chancellor”) to a shy kindy student, to a lover of books, a maker of friends around the world and at home, an observer of the world, a curious questioner, a comrade who laughs at the absurdities of Australian and American politics and who feels very strongly about justice, an animal-loving fellow vegetarian, a punster, an advocate and helper, and a total cool cat at the saxophone. One of the bonuses of being a parent has been making friends with and being supported by other parents and kids: specially at mothers’ group, Boundary Lane, and Warrawee.

Noone would describe being diagnosed with Motor Neurone Disease as lucky. It is perhaps the shittiest of diseases. We were told that day of diagnosis that while there is individual variation, “typical progress” of this disease is two to three years. It started with seemingly innocent cramps, then falls, and has piece by piece stolen my muscles, my ability to move, to hug, to wipe my bum, to dislodge a tickling hair from my cheek, to chew and swallow with abandon, my ability to breathe. But today it is five years – five years! Kimi is 11 3/4 and ready for high school. I can still speak. So in many ways I am lucky still: to have been diagnosed quickly, and treated by a compassionate, expert team, including my neurologist, Dom, who told me the other day that he has kept people alive for years by blowing air up their schnoz. And I’m lucky to have joined an amazing community of people with MND (sadly too many gone), lucky to have had great support from MND NSW and, through some coincidental connections, a chance to serve on their board. I’m lucky to have had this disease now, during a period of escalating awareness and research and technological advancement, and here, in Australia, where health and care receive public funding. Lucky to have (mostly) had the equipment and good carers we need. Lucky to have had such stellar support from those around us. And I’m lucky that this shittiest of diseases has given me opportunities to do lots of cool stuff, like wearing my slippers to speak at Parliament House (at least I wasn’t wearing lycra like a certain former prime minister we spotted jogging the corridors), hanging out with genuine rockstars (Tim Minchin!), co-starring with Kimi in various meeja and social meeja campaigns, and attending exhilarating school fundraisers and MND research days.

The coolest, the luckiest of all, through this whole crazy journey so far, has been the people. My Densil. Our Kimi. Our families. Friends, so many fabulous friends, from childhood, from adulthood, from these last few years. They, you, have given me a lucky life. They, you – with generous practical support, companionship, messages, tears, laughter, love these last five years – have made me lucky still.