My own bed (dubbed Chewbacca Junior), now with improved air mattress, in a room-cum-carers’-office beautified with new bluebird (of happiness) blinds and colourful mobile, and familiar penguin blanket, handmade paisley bed head, portrait by my cousin Jenny and Densil’s 2010 photo of three-year-old Kimi and my embrace, which melts my heart every day.
Relaxing in our lounge room, freshly painted in a much calmer shade of green than its name – Grassy Knoll – would suggest, the display nook adorned with a delightfully kitsch assortment of obscure treasures and hospital artworks, watching Handmaid’s Tale and Les Norton, or belatedly joining the family Friday night Marvel movie project.
Settling in with my ever-present lovely, talented carers, learning together about my body – unable to move but with full sensation, unable to speak but with thoughts – and how to move, feed, clean, dress, medicate, evacuate and document it (in triplicate) with the additional complication of having to keep my artificial airway operating; also, sharing stories and jokes as we co-create language (f’rinstance, ‘front bum’ turns out to be easier to lip read than more accurate terms) and gently build an expanded sense of family.
I may no longer be able to swim, but after 9 1/2 months of bed baths and hospital showers, such bliss to be showered with actual hot water coming from a long-enough shower hose at high-enough pressure to actually reach my body, reclining in my commode while carers gently shampoo my hair, able to do so because of Densil’s relentless work in negotiating with the bathroom renovators, reminding them several times that accessible bathrooms can’t have steps.
Food, glorious food! Appreciating, while I can, the deliciousness of raspberries and blueberries, avocado and haloumi, green curry tofu, hummus with felafel, pumpkin feta pizza with a glass of beer, lentils with fresh asparagus (warning the carer who finds its pungent after effects challenging), and the fruit of our new coffee machine, accompanied by almond croissant or Cadbury chocolate fingers that look suspiciously like a number 4 on the Bristol Stool Scale.
We’ve been building up the distance I can travel from home: out in our garden, amongst daffodils and pink explosions of peach blossom, extension cord connected to my vent and humidifier; an al fresco pancake brunch, the sun stroking my face with her warm velvet gloves; battery-powered dry vent on to take me up the driveway, up the street, to peruse old haunts – local patisserie, supermarket, park – pondering the sociological implications of neighbourhood changes: a funeral parlour has replaced the gym, Annabel Crabb Quarterly Essay posters on billboards, and the appearance of Jatz chocolate; a first train trip to Hornsby; and, today, a first winding drive to Bobbin Head, beautiful in the crab-scuttling, iced coffee-guzzling, eucalyptussy, shimmery-watered, amongst-the-community present, and in the link to remembered adventures past and the promise of adventures future.
Since coming home I have had the opportunity to use Control Bionics’ latest piece of magic – the Trilogy. The new Neuronode gets charged every 24 hours (often while I watch – I confess – the Chase); instead of replacing batteries every 3 or 4 hours. I can now connect it to a larger screened Surface Pro; and use my eyes to move the cursor around the screen and the Neuronode to ‘click’ the mouse – so much faster; specially with improved predictive text. I have a new voice; Lisa; who is less aggressive than Ryan; and pitch/speed options that will be great for Halloween. I’m still limited in the programs I can use (e. g. apparently the text editor keyboard was designed by someone who thinks dollar signs are more useful than commas) but Peter and team are working hard to open up options for me.
The lounge room and garden have played host to lots of lovely visitors: sisters/in laws with crosswords and beloved indwelling niecephew; extended family gatherings with multiple conversations; some favourite hospital nurses; drawing sessions with Sallie as we plan #stillwithyou; hairdresser-friend Robyn giving me a pixier short cut than the short-back-and-sides I deserved when my 7-year-old self persuaded Mum to take me to the barber on gender equity grounds; and friends old and new sharing stories of their lives and delight at me being home.
Our beautiful Lucky Tiger, feline companion and confidante, hiding out in Kimi’s bed as his familiar gentle home was invaded by a raucous crowd of strangers, then persuaded into my presence with gastronomic and tactile incentives, and – quickly adapting to the busier household – smooching up to Kimi the second she arrives home from school, luxuriating on the laps or laptops of Densil and Kimi, and, finally – when their laps were unavailably vertical and/or in Japan – jumping uncoaxed onto me, his soft, warm presence bringing unfathomable joy.
You already know what has been, is, best of all. Being home with my patient, generous, adaptable, kind, hilarious, life-saving, creative, loving and beloved Densil and Kimi. Home, with them, asleep in the same house. Home, with them, intelligently unpacking the TV news. Home, with them, enjoying sax practice (so beautiful it can make me cry). Home, with them, sharing jokes 10 seconds or 32 years in the making. Home, with them, chatting about homework, work, our days. Home, with them, exchanging tender looks, words, kisses, love. Home, proudly, excitedly farewelling Kimi for a wonderful fortnight school trip to Japan; missing her like crazy, as Typhoon Hagibis flight cancelations mean a day, at least, gets added to their stay; but knowing soon we’ll be home, together, again.