The patient patient

(It turns out I finished writing this on the 6 1/2 anniversary of my diagnosis, another reason to celebrate each month, each day. Artwork by Lexi.)

As of 3 July it’s been 8 months. 34 and a half weeks. 242 days since this ICU adventure started in Spring. In ICU nursing terms, that’s 484 12-hour shifts – enough time to learn a thing or two.

I have learned some language of ICU. Arriving patients are ‘hearts’ or ‘spines’ or ‘neuros’ (as well as being treated as human individuals); intubation generates ‘tubies’; NGTs and lines and drains and IDCs/SPCs send fluids in and out. When trying to lip-read ‘gown’ nurses often think I want my COW adjusted, because a computer-on-wheels is loitering outside my room. Pressure areas are rated on a 4-point scale (I’ve received more than a lifetime’s supply of compliments on my good-looking bum; I assure you that’s only relative to my bad-looking bum from before the side-sleeping, pillowcase-underlaying regime wrought improvements). I have also become familiar with the Bristol Stool Chart (be proud, residents of Bristol!) and know that Code Blue is more serious than Code Brown.

I have learnt the music of ICU. The patient-call buttons that encode urgency with tempo. The different tunes of monitor alarms, ventilators, IV pumps, defibrillators, beds and calf compressors seeking attention like hungry baby penguins. The solos: wandering nurses plaintively singing ‘keys’ to obtain access to the medications room; particular nurses’ voices resonating across the ICU; bold calls of ‘X-ray!’; Ryan’s tuneless tenor; occasional tortured cries of patients confused after surgery, and perhaps before (luckily I’m in Room 103, not 101). The choruses of consultants with their underlings, gatherings of giggling nurses, patients’ families anxiously pianissimo or building with relief. The delightful wind accompaniments of bodily fluid suctioning and other winds (always the patients, apparently). For percussion, the rhythmic rumbles, swooshes and clickety-clacks of wheeled beds, machines and trolleys and recognisable staccato footsteps.

I have learnt the temporalities of ICU. The lights snap on at 6am with the arrival of porters. Nursing roulette is played with each shift changeover at 7:15 (which nurse do I score for the next 12 hours and will they be happy or anxious to have me?) with the Chinese Whispers/Telephone game of handover. Doctors do rounds, meal trays arrive at 8am, 12:30 and 5pm (‘Careful, this side is very hot’), followed by coffee, and each patient has their regime of medications, obs, physio and other treatments. For several weeks a neighbouring patient endured round-the-clock hourly shouted injunctions to open her eyes; if she complied at 2am she would witness the hands of the clock fast-forwarding through 12 hours in its daily reset – just the thing for patients struggling to connect with reality. Each week brings a change of intensivist (that’s a job title to covet!), and the flow of the week is shaped by his (yes) personality and the patient mix, only partly predictable by which surgeons are working.

I have learned about the camaraderie of ICU. Skilful doctors and nurses, porters and therapists, cleaners and food staff, students and managers, blood collectors and technicians work together. Most of the time there is a quite beautiful sense of teamwork: real consultation to tackle tricky problems, respect for each other’s expertise, listening and communicating, uncomplainingly helping out, including patients and our families as part of the decision-making team. The mix of cultural backgrounds, languages, genders, religions, politics, sexualities and life experiences outside work seems to me to strengthen the team. So does shared chocolate and laughter.

I have learned about the compassion in ICU. I have witnessed the everyday compassionate care of staff as they tend to patients and families: fetching warm blankets and cups of tea, gently explaining medical procedures, smiling as they deliver meals and drinks, carefully turning and washing, apologising for invasions of bodily integrity, encouraging progress, acting quickly when there is an emergency. One of the beautiful cleaners checked recently that I was ‘getting enough loving’ here. I am indeed, with hers amongst the thousands of acts of loving kindness: my neurologist brings cappuccinos each week, along with his jokes and problem-solving; one of the gorgeous porters added his sketches to my artwork collection; nurses have cut and dyed and braided my hair, and baked cakes, and delivered reports of my Mum’s progress after surgery, and collected flowers and seashells hermetically sealed in jars, and adorned me with Christmas hair clips, and facilitated and photographed fun outings; the diet supervisors laugh each fortnight as they tell me asparagus strudel is on the menu and without needing to ask note that I instead want chickpea curry; a huge team collaboration of managers, doctors, nurses, porters and more enabled us to go to Tim Minchin’s show, the lovely nursing unit manager and ward clerk anxiously bearing responsibility for safely negotiating taxi bumps and theatre crowds; the surprise decoration of my room for my 50th birthday, and various staff taking up my birthday challenge; the duty manager telling me about trekking to fundraise for MND; and more. Compassion on a stick! And this all on top of the loving brought into this room by my gorgeous family and friends, who are in turn cared for by those who work here.

I have learned some stories in ICU. I have heard stories as part of the normal conversation that happens when two people spend time together, about trips to Europe and children’s antics and Tiananmen Square and hiking adventures and eBay transactions and homeland disasters and university studies/teaching and election reactions and partners’ jobs and migrating to Australia and weekend entertainment and new houses and swimming lessons and podcast recommendations and ridiculous diets and Duterte’s merits and sporting injuries and religious experiences and favourite foods and more. And – perhaps because my quiet presence and concise questions encourage a deeper level of revelation, or maybe this is normal for nurses? – I have become the suppository repository of all secrets – pregnancies, disgruntlements, interviews, relationships, and hopes and dreams. As ‘Ryan’ says when the bright spotlight is turned on over me, ‘No matter how hard you interrogate me you won’t make me talk’.

I have learned to use my new voice in ICU. When I was diagnosed with motor neurone disease, the bodily loss I most feared was not my arms or legs or swallowing but my speech. As I lost walking and dressing myself and scribbling notes and swimming and toilet solitude and hugging, but was still able to speak, in public, with friends and family, I dared to hope I might keep speech to the end. But ‘to the end’: aye, there’s the rub. It turns out that when push came to shove, I opted for a longer life without my voice. And I have learned to use my new voice, my words appearing on my phone screen through the magic of NeuroNode, and sometimes emitted from my speaker as Ryan. We have learned to communicate with this new voice. I can still tell terrible jokes. I can still chat with Kimi about schoolwork and friends, and Densil about the Guardian vs Australian’s take on the world. I can still discuss Australian politics in extremely polite terms in text messages with my neurologist. I can still do cryptic crosswords with my sister and sister-in-law, and play Words with Friends. I can still share in the up-and-down lives of dear extended family and friends who visit or exchange messages from afar. I can still write, and I have learned to write for this blog. And I can still make friends, friends I hope to keep beyond this hospital stay: gorgeous, funny, kind nurses (one of whom is being trained as a carer), sweet, clever, gentle porters (one of whom has been trained as a carer), another patient’s generous, gregarious, empathetic daughter, who brings jaffa brownie and beers to share, and more.

I have learned to be patient in ICU. I have been here so long that I rarely have new agency nurses. But one recently told me, several times, that I was testing his patience. It does indeed require patience to care for me, waiting as I painstakingly type instructions, letter by letter, about how to position my head, pillows, glasses, vent tube, shoulders, sleeves, right arm, right elbow, right hand, left arm, left elbow, left hand, smooth pillowslip, hips, knees, right leg, the other right, left leg, feet, catheter, sheets, bed height, phone, to minimise my discomfort and give me a shot at sleeping for a few hours of his 12-hour shift. My patience, at having to give such instructions, usually sits in the background, with perhaps a mutual acknowledgement that patience is required on both sides, but has been something I have been conscious of since that impatient nurse (and, y’know, eight months!). What boosts my patience is the love and patience of those around me, specially my gorgeous family, who have lived with me in hospital for eight months, taking the time to visit several times each week, sometimes waiting futilely for me to wake up, patient with my slow communication, patient as bedpannery or blood pressure checks take priority, patient as I was in hospital for their prize-winning solo night performance, for presentation night, for the summer holidays, for Escalade, for Christmas, for New Year’s, for the start of Year 8, for Densil’s birthday, for Kimi’s 13th birthday, for the autumn holidays, for Easter, for her first stage band performance on baritone saxophone, for our wedding anniversary, for the winter holidays. That, my friends, is patience. (Have I told you how proud I am of those two?)

I am keen to get home (understatement of the year!). But I am grateful to have lived and learned these eight months, and to all those who have shone light and love and laughter along the way.