Feeling Good

(I wrote this on 7 and 8 July, 7 1/2 years – 90 months, and counting! – since my MND diagnosis, and 6 years since my medical retirement).

Six years ago we sat around Mum’s dining room table, feasting on muesli with yoghurt and locally grown berries and vegemite toast and coffee, supplicant beagle at our feet. It was 18 months since my diagnosis with motor neurone disease, and as we gazed out at the glorious misty valley and distant snowy peaks, Nina Simone’s smoky voice filled my head. I was fee-ee-ee-eeling good.

We were about to get in the car and head back to Sydney, aware that the trip to Bright would get harder as my disease progressed, unsure how many times we could get there, unaware that I would live to see driving across the Murray outlawed against a future pandemic (we’re thinking of you, Victoria). We headed home so that I would be there for my last day of work before my medical retirement.

When I was diagnosed I was about to start a three year contract as a lecturer in Sydney University’s then Faculty of Health Sciences. I’d been excited about making a start on our new research project on health system navigation, teaching research methods and health sociology, continuing to support my wonderful PhD students, and working with Gary on our book about Australian sociology, with Kris on our edited collection about teaching sociology, and with Nick on editing the Australian Sociological Association newsletter. I was blindsided by this diagnosis, with typical life expectancy odds that meant my contract might well outlive me, and uncertainty about when I’d lose the ability to type, to walk, to catch the bus, to speak. I could see that working would become increasingly difficult, impossible, but I wasn’t sure when.

I was sad about the prospect of giving up work. It was work that I was lucky to (mostly) love. But I was (and am) lucky to also have my gorgeous daughter and husband, who I wanted to spend precious time with, along with lovely family and friends. And I was also lucky that I worked in just the right Faculty, with understanding colleagues and managers who promised to support me as long as I was able to keep working, workplace adjustments and generous sick leave, the opportunity to have an ongoing honorary role, and a superannuation fund with an inbuilt Total and Permanent Disability Pension. So my lingering question, given the uncertain timing and specific shape of my MND trajectory, was not whether to “retire” but when. (I know I am writing this at a time when many people, including university comrades, have lost or fear losing jobs or livelihoods: my heart goes out to you).

I sought advice from quite a few people on this question of timing. Several people said I’d know when it was time: to trust my gut. The other lucid piece of advice came when we visited dear friends Pauline and Susan for lunch. Susan stayed behind to keep me company as I was too tired and slow to join Pauline, Densil, Kimi and four-legged Cino on their postprandial romp around the bay. I remember articulating my dilemma: if I knew that I only had another year or less to live, resigning immediately to spend all my time with my loved ones would be a no-brainer; but what if I made the mistake of retiring aged 45 and then was one of the outliers with ten or more years to live? Susan wisely reminded me that most people anticipate long retirements, and this happening for me would not be such a terrible outcome!

And now, six years into my retirement, seven and a half years since my diagnosis, I can fully appreciate the value of both pieces of advice, and am happy about the timing of my retirement and so grateful for the life I have had since. I have written before about much of this: the sweet, sweet joys of being alive to watch our delightful Kimi grow, and growing old-er with my darling Densil; welcoming our Lucky Tiger, Torakkii, as a purry family member; wonderful families and friends who have bestowed a treasure trove of tangible and intangible gifts; joining the life-giving MND community of families, clinicians, researchers, volunteers, supporters and advocates, including many beautiful people who have died too soon; being given fun, empowering opportunities to share our story; fabulous holidays, excursions, and familial and community celebrations – golden memories; the incredible perspective-giving experience of having my life saved and a very long stay in ICU; and more.

And on these two anniversary days, how am I feeling?

Physically, there’s the pain of immobile joints and sharp bones protruding through atrophied muscle, the discomfort of a mysterious blister and eyelash adrift; dampened by pain meds and offset by heat packs, gentle massage, and delicious scalp-scratching hair brushing.

But existentially …

My carer-in-training is learning to read my facial cues and effortlessly joined in our running gags about open museums and lotteries

My sister Lexi sent a gorgeous video of her 6 month old’s feet exploring Bea’s silky fur and feline forbearance

I’ve been wearing comfortable new dresses made by Eleanor, geometric gumnut-print cotton and malachite marino

I’ve been enjoying my own gogglebox experience as the family watches TV, appreciating Kimi’s curious questions and Densil’s informed responses about what’s playing out on the ABC News and the history behind Operation Buffalo, and their critical analysis of the music on Masterchef

Dahl. And sticky date pudding. With cream

I’m proud that Karen and I sent in final corrections for our Health Sociology Review article, ‘Living with motor neurone disease: an insider’s sociological perspective’, and I have started a new writing project

Collective maths puzzles

Both my most recently saved phrase, “I fart in your general direction”, and our emoji stickers have proven to be versatile

Densil and Kimi returning from a walk with a single white jonquil from our garden

Watching Torakkii share affection with my loves

Birds flying high

Sun in the sky

Breeze driftin’ on by …

And I’m feeling good.