(I finished writing this the day after my anniversary, but I think that’s ok for a meditation on time)
Time is a funny old thing.
I remember the Monday I was diagnosed, exactly six years ago, as though it were yesterday. In fact, I remember bits of it in much more richly-textured, emotionally-laden detail than I remember yesterday.
I remember the neurologist swapping appointments while we were in the waiting room, signalling to a more experienced health consumer than my six-years ago-self that we were her difficult job for the day (Densil was more savvy than me). I remember her taking us through the results of my previous tests: the seemingly innocuous blood results; the beautifully clear – Look! – MRI; the nerve conduction studies and electromyography that I’d already sussed out as showing nerve innervation and de-innervation – that there was something neurological behind my weakened muscles, my cramping legs and hands, my falls, my fatigue, my weight loss (from a mercifully high base). I remember her asking me about my reading, what I thought might be wrong, and me rattling off a string of vitamin deficiencies and diabetic neuropathy and auto-immune diseases and syndromes (which I’d thought were possible diagnoses but should have realised by now had been excluded), then finally (the diagnosis I wasn’t ready for that day, because I’d read it took months, years, second opinions -not the month since I’d first been to my GP – to diagnose) I added ‘and motor neurone disease’. And then she told this hand-holding couple on the other side of the desk that I had motor neurone disease, the disease I’d always associated with Stephen Hawking, and had coincidentally read Dawn French describe as the ‘muscle eating monster’ in my cheery Christmas holiday reading.
She said she wouldn’t give us too much information as it was a lot to take in (truth). She told us (something I must have skirted over in my reading) that ‘typical progress’ is 2-3 years. Once I’d decoded those words, checking with Densil with tears overflowing – is she saying what I think she’s saying? – and then asking directly ‘are you saying I am going to die?’ and being told, accurately but not reassuringly, that there is considerable individual variability, my world crumbled. I thought of Kimi, our precious 6 3/4-year-old, soon to start second class, still anxious after the death of her grandpa, and my world crumbled. The floor, walls, ceiling, our world – everything – crumbled and fell away.
Across the corridor we sat with the refreshingly plain-speaking clinic nurse, who gifted us with the glorious expression ‘shit sandwich of a disease’. She asked if we had children, and empathised that was the hardest, the worst – true, but also, it turns out, the best, the most beautiful, delicious, inspiring, wonderful, very best. She gave us contact details for MND NSW, whose people have provided such fantastic support. And we made an appointment to see our now, and beloved, neurologist a whole, impossible month away (my contradictory feelings about that month a sign of my curious relationship with time, but more on that later, in its chronologically-sanctioned narrative place).
We talked during our Sydney-Summer-heated walk to the car and drive to my sister-in-law’s place, to debrief and collect Kimi. But more significant in my memory, as I unwittingly dragged Densil into this ‘in sickness’ phase of our marriage, was a renewed falling-in-love, just like the falling-in-love that accompanied the moment I watched him fall in love with his newborn daughter.
We greeted Densil’s sister (who is also a longtime friend and a GP, amongst other things) with our news and sat outside with her for an hour or two, talking about what we did and didn’t know about MND, about what was and wasn’t important in life. We knew that piece by piece I would lose my muscles, my walking and swimming, my typing and hugging, my standing and dressing, my speaking and swallowing, my breathing, my life. The rest of the day was filled with news-breaking, grief-spreading conversations: in person but circumspectly with Densil’s parents, where Kimi first heard those three words, Motor. Neurone. Disease; by phone, talking and listening through tears, with my mum, our siblings.
I went to bed but sleep refused me. So I got up (luk-shar-ree!) and walked to my computer at the other end of the house. Amidst the hours of googling and reading I found what I most needed: guidance from the MND association about how to talk to children about MND. The next morning as we cuddled in bed I could not ease Kimi’s bafflement at a disease the doctors can’t fix, but we could reassure her. Of our always love. Of her non-culpability. Of the safety of touching, of cuddles and kisses. That the scientists are on MND’s case.
Thinking of the month until our appointment with Dominic Rowe I had two contradictory feelings. I was desperate for the month to disappear, for the appointment to be here already, for wanted and unwanted confirmation of my diagnosis, without which I felt uneasy about having those difficult conversations with work, with collaborators, with friends. And also, in the face of ‘typical progress’, I wanted to anchor time to a snail, to stretch out each precious moment, for that month to never end. Somehow we muddled through that surreal contradictory month, juxtaposing feelings of impatience and disbelief and fear and grief with a sensational spontaneous Tasmanian expedition – art-gallery poo machines and waddly penguins and Eton Mess collaborations and gorgeous companions – along with the first of those conversations, difficult, languid, sacred, love-sharing conversations, and a heartwarming appointment with my wonderful GP, Anna. And at the end of the month, another conversation, our first with our kind, passionate, hard-working, expert, truth-telling neurologist. In the face of our confirmed diagnosis with unknowable temporalities, he gave us excellent advice: take things week-by-week and try to make the most of each day. Carpe diem, people. Carpe diem.
And now – lucky, lucky us – there have been 6 years! 72 months! 313 weeks! 2191 days!
What is six years?
Is it: the span of high school; eight seasons of Mad as Hell; the writing of a PhD (more, ahem, or less); Gillard-Rudd-Abbott-Turnbull-Morrison; two workplace contracts; a long or short relationship; the blink of an eye; a lifetime?
In that first month since diagnosis, and even – I’ll admit – a year ago, six years felt like an impossibly bountiful, barely-dared-to-hope-for, improbable dream of a post-diagnosis life. The loss way too early of way too many beautiful friends, mothers and fathers, sisters and brothers, daughters and sons, centres of communities, testifies to the f**king unfairness of this shitty disease.
Six years is my surgical transformation from human to cyborg: weeing through a tube into a bag; menstruation halted by an endometrial ablation; breathing with a machine via a tube through a hole in my neck; typing with a bionic device strapped to my wrist sending muscle-twitch signals through the air to my phone; and talking through a speaker in Ryan’s synthetic American voice. As I adjusted to my diagnosis, my question wasn’t the typical ‘Why me?’, but ‘Why now?’ at age 43 and Kimi so young. Of course it would have been lovely for us all to have had another 10 or 20 years of pre-MND life (though some have 10 or 20 years less). But how fortunate are we to have coincided with life changing technology like the Neuronode and game-changing ice bucket challenge, the long-awaited NDIS (more on that another day) and inspiring campaigning by so many in the MND community.
Six years is a series of losses and losses. Of wiggling toes and functioning fingers, of standing legs and moving arms, of indiscriminate swallowing and intelligible speech, of head-supporting neck muscles and unassisted breathing. Of household privacy and family autonomy, of equal adulting and childhood innocence, of uninterrupted sleep for Densil and me. Of walking and working, swimming and singing, cooking and coffee-buying, hugging and holding, and more and more. But six years is also a settling in, a being-at-peace, an adaptation to adapting, appreciating the beautiful carers and health professionals and family and friends and colleagues and funding and equipment that help make life easier in this ‘new normal’ (thank you, Leigh Sales).
Six years is a richness of loving and living. It’s a fantastic crew of family and friends who surround us with love and visits and meals and lifts and solutions and messages and enjoyable conversation and understanding and humour and innovative 500 games and more. It’s love-soaked memories: holidays-while-we-could and magnificent celebrations and adoption of our Lucky Tiger and comedic outings and more. It’s loving everyday pleasures of family music and ABC radio and medicinal tiramisu and rainy-day birdsong and silly phone game achievements (so inspiring 🙂 and pun-filled conversation and TV chilling and pride in niecelings/nephews and more. It’s participating in the beloved MND community: story-telling, here, to beautiful primary school kids, in Parliament House, on the telly/interwebs; enjoying MND walks, the firies’ climb, Fading Symphony and fancy fund-raisers; attending meetings and research days, and more.
Six years is perspective for this ICU holiday, 66 days (so far) only 11 per year. For a life-saving, voice-stealing laryngectomy and tracheotomy, two failed barium swallow tests, and another small procedure. For nasal ingestion of isosoy goodness and nostril-warming espresso, a camera probing places unfathomable, irregularity and bedpan gymnastics, and 4 kinds of suctioning of bodily fluids (all above the naval, in case you were wondering). For a terrifying, then tedious, summer for my family, rearranging and painting at home in my absence, dealing with paperwork, and ferrying supplies and their beautiful selves to the hospital. For the unexpected pleasures of room 103: a blossoming collection of fabulous artworks; interesting insights into the ICU as workplace, appreciative admiration for the best of the staff – nurses and cleaners and porters and doctors and caterers and therapists who bring kindness and humour and patience and care – and special respect to those who have migrated, bringing a welcome diversity plus tenacity and skill; the post-laryngectomy co-creation of language, encoding mouth clicks and eyebrows with meaning and sometimes hilarious predictive-text-guessing-games (is it spa? No. Spandex? No. Spaniel? No. Spanish!); multiple Christmas importations of rellies, a 15-strong carol choir and Boxing Day waiting-room feast; and the welcome reprieve of visitors, with music and company and crosswords and love.
Six years are heart-melting years, proud and (#-free) blessed and joyous years, of being with Densil to watch Kimi grow, from gap-toothed prep-schooler to almost-a-teenager! Watching her grow in compassion and empathy, curiosity and bravery, a heart for the world. Watching her grow as groovy musician and artist, clever punster and scholar, kind cat-lover and friend. Watching her grow as cousin and granddaughter, niece and neighbour, student and friend, giving and receiving, loving and loved. Watching her grow as MND comrade, activist, helper, consoler, explainer, sacrificing much for more years with her mum.
Six years are just the beginning …