From my bed, ‘Chewbacca’, I can see some of room 103, a largish room with fancy new-hospital ICU fitout. To my right is a dusky pink feature wall decorated with an inoffensive framed floral print, lime green box of disinfectant wipes, boxes of rubber gloves in three sizes, soap dispensers, and laminated A4 posters (with 11-step guides to properly washed hands and the five principles of cleaning); a stethoscope is draped over a keyboard/monitor which shows my O2 sats, heart rate and blood pressure, unless a nurse is logged in to check meds or add to the tome of notes about my bowel habits, sore toes, 17 kegfulls of wee, whether I know where I am, trachie secretions (nothing is secret), etc; there is a white sink in the corner, a bright yellow bin for contaminated waste, a frame holding a clear plastic bag of uncontaminated waste (much of it single-use plastic), a stainless steel trolley with my spare vent, portable suction machine and shower supplies, a chair burdened with spare pillows that make way for visitors, a trolley table and a pile of cardboard boxes breeding under the sink. A reflective black TV screen is in the top right corner of the room: I usually ask for it to be turned on for ABC’s Wednesday night comedy, the crackly sound whispered into my ear by the handset on my pillow, but choose the superior audio of my phone for News Radio broadcasts of Q&A and Insiders, plus a host of wonderful ABC radio programs and other podcasts. The wall on my left has a door through to room 104, occupied by a succession of neighbours, heard but not seen; a blind covers the window unless a nurse has to watch both of us at once. Another monitor is attached to my blood pressure cuff, and against the wall is a phone, emergency call button, and a bench and several sets of drawers for personal belongings, medications and carefully ordered nursing paraphernalia. Above me is an LED light on an extendable arm, designed for a room in which trachie stomas need inspection, not designed for a room in which a hoist is required to get a patient in and out of bed. And in front of me is a clock, its finest red hand ticking down the seconds, and a large doorway part-covered with a magical bacteria-repelling curtain.
Not long after I arrived I learned that these curtains have a limited shelf – or rod – life, as one beige/brown checked curtain was replaced with another. Then, one May morning, a fellow appeared and as he was extracting the old I attempted a joke about whether he was upgrading the colour. My joke fell flat, not just because of my synthetic voice Ryan’s deadpan delivery, but because he was, indeed, upgrading the colour. To an oceanic hue fondly known in our family as Harley Green – our colour – a perfect match to the green and periwinkle blue balloons that gorgeous nurses Tania and Tianna had selected to decorate my room as a 50th birthday surprise. Discovery that the whole ICU had been similarly transformed only reinforced my embrace of the change as a metaphor for having been welcomed, accepted, loved, in this ICU home away from home, by my ICU family.
Before peeking beyond the curtain, there are more signs that Room 103 has been my home for more than 9 months. My phone, through which I communicate thanks to the wonder of NeuroNode, is clipped onto an IV pole which has become a mini art gallery, currently showing drawings of an elephant and a richly symbolic version of our home by Kimi and a lion by talented porter-turned-carer Jack (his sketches of a couple gazing at the ocean and a pair of travelling penguins also adorn the window) and Lexi’s glorious embroidered celebration of our former Prime Minister’s phrase “suppository of all wisdom”. Dangling from my phone stand is a beautiful black omamori from a Japanese temple sent by Ming and Heena’s gift of a yellow lucky cat who smiles at me and tinkles as she moves. When I am turned to my right I see one of Susy’s beautiful paintings, a head of blue-green hair, illuminated by the rainbow glow of the Bluetooth speaker Peter brought to project Ryan’s voice. There are other artworks – the mandala that arrived from Bruce in Germany on the day of my laryngectomy, nephew Aydin’s pastel portrait of a woman (me?) and Yuxiao’s of our lucky tiger, Kimi’s maturely detailed drawing of a bird in flight and Heena’s paisley pattern. There are also beautiful cards from relatives and friends old and new, and photos, from Susy’s trip to Vietnam and Cambodia, Sarah’s picture of a delicate hibiscus (taped to a box that has been custodian of many treats), and Densil’s snap of my bedroom, freshly painted and with new bluebird blinds, still holding his beautiful photo of a pre-MND me hugging 3-year-old Kimi and my gorgeous cousin Jenny’s portrait of me. Scattered around the room are other gifts: a box of floral creams from Ro and fancy Korean hair product and a sheepskin from Robyn, a jar of seashells and the remains of Christmas hairclips from Heena (many others have donated hair elastics: they disappear here as mysteriously as they do at home), Katie’s plastic orchid, that eluded the ICU floral quarantine system unlike most of the flowers others attempted to bring (with my witty Kimi’s packet of (MND) cornflour and a few other unnamed but appreciated exceptions), a colourful pile of stretchy clothes designed and made by Eleanor, Lexi’s crocheted rug, and scarves chosen by Sonia, Sally and Peter, and my dear D & k. These objects join many more intangible signs of the love and friendship that has grown and grown, that has given me joy, that has kept me going these 9 1/2 months in Room 103.
Room 103 is located at the end of the corridor via which people arrive. I see nurses arriving for shifts, brightening the lives of those they care for, discussing treatment plans with doctors and each other, comforting families, dealing with bodily emissions with grace, humour and air freshener, rushing off to emergencies. I see doctors doing rounds, ICU consultants and specialists carefully checking their patients and doing their best to make them well; physios, encouraging and supporting patients as they clear their chests or stand and walk round the unit; porters heading into rooms to help turn or transfer, gently cheerful, or pushing embedded patients in or out; cleaners, politely checking before dealing with ordinary cleaning and the special hygiene challenges of an ICU; X-rayers (‘Hi Kirsten’) and phlebotomists, doing their best to collect their prey with minimal pain; dietary staff, checking menus and delivering coffee with a smile; and managers, rushing round, sorting out rosters and unexpected changes, helping patients and thanking staff. Many of these people have become my friends. I also see the arrival and departure of patients’ families and friends: anxious first-timers, searching for their loved ones, afraid of what they will find; groups hugging with reassurance; irrepressible small children lifting everyone’s spirits; long phone calls to update relatives; discussions with doctors and nurses about DNRs and transferring to the ward; familiar exhausted faces who have settled into the routine; and joyous departures. As people approach my room they often smile: perhaps at the “cappuccino please” sign Danny taped outside, perhaps at the residual balloons and Happy 50 1/4 th birthday sign hanging behind me; perhaps at me, a stranger; perhaps at me, a friend.
At the far end of the corridor is another room, dark behind another Harley green curtain. Sometimes, when the room is occupied, a bright light shines towards me. I think of Jay Gatsby, gazing across the bay, at the bright green light on Daisy’s dock. I think of my dreams, not of Daisy, not of things American (God forbid), but of a non-orgiastic future that intertwines with the past: forward and back home, forward and back to my amazing, beautiful, heroic family, forward and back to the new normal of living in this paralysed body, without a voice, a machine breathing for me, surrounded by carers 24/7.
And tomorrow it’s happening – after 290 days I am going home! I have blubbered every day this week as I’ve said goodbye to some of the gorgeous people who have cared for me here. I’m so grateful for their care and love, for coffees and cake and hairdos, for outings and jokes, for training my new team of carers, for getting me to this point. I’m not sure if I’ll miss Room 103 but I will miss the people. But overriding my sadness is excitement: being with my family at home, witnessing our cat appear from his hiding place for cuddles with Kimi when she arrives home from school, hearing saxophone practice, seeing the jonquils sprout from the lawn, sleeping in my own hospital bed (newly labeled ‘Chewbacca Jr’ – they get it, my family; they totally get it), settling into new rhythms. It is good to be alive.