My carer training – two carers working alongside my nurse from 10:30 to 2:30 each weekday – has so far been rostered through to 2 May, my 50th birthday (otherwise known in Australia as Happy Bowelcancerscreeningkitday). Given the skills needed to transfer me, look after my trachie and vent, communicate, deal with emergencies etc, I’m anticipating that an additional fortnight or three of training will be needed (though 6 months in ICU on my birthday would be a mathematically neat time to go home).
I’ve always been a fan of birthdays as a celebration of the accumulation of years. Our rambunctious childhood birthday parties always involved blowing out the right number of candles on the cake. When I notched up a quarter century my work with ABC audience research meant that I noticed my demographic shift from the compact 18-24 years to expansive 25-39 years categories employed in radio ratings. Six years later I observed another shift, as (mostly older) colleagues sharing my birthday cake suddenly no longer asked my age: I was a bit affronted by their politeness with its implicit assumption that I wouldn’t be comfortable revealing my post-thirty age (that birthday’s celebration also included a beautiful rainy evening climb of the Sydney Harbour Bridge, during which lovely friend Penny and I inexplicably donned terrible Yorkshire/Scottish accents along with our grey overalls, and Densil may have pretended not to know us).
For my 35th birthday I had the inspired idea of swimming 100 metres for each year of my life. A small group of us swam in the refreshing Victoria Park Pool on a sunny autumn afternoon (such a glorious feeling!). As I accumulated each pair of laps I remembered something of that year of my life. The 3.5 km swim thus held my 35 years, as well as being a pleasurable experience that took time and effort and bodily strength in itself, a real celebration of aging. I continued this tradition through the rest of my 30s, sometimes opting for the indoor university pool where we normally trained, and delaying my 3.7 km until I was ready to spend that much time in the water away from my baby, who’d been expected the day before my birthday but arrived a month earlier.
For my 40th a group of us swam in the buoyantly salty water of North Sydney Pool, where a turn of your head to breathe might be rewarded with a magical glimpse of the imposing Harbour Bridge or the faint drifting sound of happy screams from nearby Luna Park. My 4 km was punctuated by cuddles with now three-year-old Kimi and pool-end chats with Densil and fellow swimmers. For some laps, most notably the last few symbolising our birth day and Kimi’s lifetime, I swam with her – breaststroke with her on my back, arms clamped (too) tightly round my neck; me on my back holding her hands, both (or one) of us kicking; short bursts of tandem dog paddle. As we celebrated our intertwined lives I delighted in my capacity to carry her and keep her head above water.
As I thought ahead to future milestone birthdays I acknowledged that at some point this tradition that demands increasing distance of my aging body might prove unsustainable, but I thought that would be decades away. I had, after all, experienced how Just. Keeping. Going. could get me to 10 km. I had no reason to doubt that my 50th could be celebrated with a swim. I did manage 4.3 km three years later but it was a huge effort to lift my aching arms forward, to pull them through the water, to keep my tired, cramping legs kicking. I berated myself for this loss of fitness but found in coming months that I struggled even to manage a single kilometre. My body was beginning to fail me.
After my MND diagnosis I kept immersing myself in water as long as I could: a Herculean 100 m swim; floating prone over the coral and fish of the Great Barrier Reef then hauled back onto the boat by my strong-armed family; another, final, glorious ocean-float with sisters and our families – Kimi by now able to keep herself aloft – thanks to the aquatic wheelchair at Watson’s Bay Baths; hydrotherapy, with friends pulling on my swimmers and wheeling me in and out of the pool. For two years there was something. But by my 46th birthday I had to be content with being showered; for the last 5 1/2 months twice a week (on a good week) in the piss-weak ICU shower.
I miss swimming, miss my strong arms and legs, miss being able to move, to float, to turn my head, to breathe. Damn I miss it! But I haven’t missed birthdays. I turned 44. And 45. And 46. And 47. And 48. And 49. And on the 2nd of May, I will turn 50. I think of friends who haven’t been so lucky, who – like me – have been carried by beautiful family, friends, carers, health professionals, MND associations, but didn’t get to 50.
I am hoping that the days around my birthday will include hospital visits (scheduled around carer training), and there might be something more after I am home. But I would like to invite you to help me celebrate my 50th birthday in lieu of my 5 km swim.
I invite you to enjoy doing 50 of something in April or May. If swimming’s your thing, swim: 50 x 100m, 50 laps, 50m. Or something else that is your thing. Bake 50 biscuits. Eat 50 biscuits. Snap 50 photos. Walk 50 km. Plant 50 seeds. Tell 50 jokes. Do 50 sit-ups. Persuade 50 voters. Play 50 notes. Pray 50 prayers. Twirl 50 pirouettes. Expel 50 expletives. Catch 50 winks. Draw 50 lines. Give 50 hugs. Breathe 50 breaths.
Please, let me/us know about your 50: what you have done, and, if you like, something about how it felt or what it meant.
And if birthdays make you want to spend money, consider a donation to the MND/ALS cause. Options close to me include:
- MND NSW, which provides vital care and support to people living with MND: https://mndnsw.asn.au/donate.html
- the MND Research Institute of Australia, which provides competitive research grants to MND researchers: https://m.mndaust.asn.au/How-your-donation-helps.aspx
- the Macquarie University Centre for Motor Neuron Disease Research, which works alongside Dominic Rowe and my MND clinical team: https://www.mq.edu.au/connect/supporting-the-university/why-give/motor-neurone-disease
- the University of Wollongong MND research group led by Justin Yerbury: https://www.uow.edu.au/giving/mnd/index.html
- Or your personal favourite. Thanks!