I really didn’t know how fucked I was. There was me, the painkillers, 24-7 nursing care, and imaginary elevator music happening somewhere deep in my mind. What need did I have of any realisation of what would soon become some very unpleasant truths?
Part 3: Too Dumb To Die
I was trying to kill myself. There are few options available to a suicidal, bed-bound patient with cognitive problems, so I was using the cord of the bell-push that I usually used to summon a nurse when I was in need of one. It was a bulky cord and it wasn’t adapting particularly well to the purpose for which I was employing it.
I’d wrap it around my neck and pull hard on it, but the moment I flaked out from lack of oxygen, the tension in the cord would release, and the strength of my automatic bodily responses meant that I’d be breathing again in a heartbeat.
I couldn’t get it organised to do otherwise. A decent knot was beyond me or my materials. I managed the complex process three times before exhaustion made me give up amid tears of frustration.
I just didn’t want to continue to be me – and where and how I was being me. At that moment I had no future, I thought. I had just been brought face-to-face with everything. The result wasn’t pretty.
Early on a Friday morning, a week after my admission to Auckland Hospital, I had been moved to Rehab Plus, just off Carrington Road. It was a few kilometres in physical difference, a very short trip on the North-Western Motorway, but decades different in terms of immediate physical surroundings.
I don’t mean to be precious, but these things do matter, particularly when all you have are environmental cues.
From a contemporary crisis unit, I was moved to a rehabilitation unit that was around forty or fifty years old. It was in an industrial area. It was down a dead-end road, past warehouses. It was shabby. There was green enamel paint on the walls, brown synthetic fibre carpet down the corridors, heavy linoleum on the ward floors. The ceilings were low. The fittings much used.
It felt like a bad place compared to the antiseptic, electronic world I had come from, with all its sensors and the gentle beep of its heart-monitors to lull and comfort.
I felt abandoned.
I also had to confront several things.
I had no control over my excretory systems. I wet my disposable adult nappies and the bed at night. I was re-experiencing the warm and sodden feelings of very early childhood. I couldn’t get it together to push the summon button to call a nurse when I needed a piss. Half the time I even didn’t know I had a summon button, let alone where it was.
I was also learning that in spite of my belief that my world-view matched up to reality, it didn’t. I was being tested by rehabilitation staff with an eye to finding out where the problems were and what needed to be done. Simultaneously, I was learning just how big a malfunction I was experiencing and how much of my brain was affected.
The tests were excruciating. They were American tests. There were American cities like Chicago and states like Minnesota in their titles and people did American things in them. You wondered a lot about vacations and Fall and candy.
Most often, in the beginning, I couldn’t do them at all. Though I did know they were simple, and that other people could probably understand them easily. I just couldn’t find the keys that would unlock the answers that I knew were deep in my brain.
There was ‘before’ and ‘after’ to deduce, relationships to discover, names to remember, things to count, spaces to explore. I hated these problems without exception. They became a nightmare ground on which flat characters with names like Sidney and Kate faced confusing situations and raised questions that I mostly couldn’t answer.
Physically, I couldn’t walk. I could feed myself, with my left hand just managing a fork or a spoon. I could barely talk. There was a glitchy stuttering that somehow ruined every perfect mental sentence I constructed on its way out.
Measured against technology, I was also unfitted for a modern environment. I couldn’t operate my mobile phone. It was a Nokia, but even Nokia’s allegedly intuitive interface didn’t survive my own personal stroke test. My iPod did, but only just.
I had actually turned my phone off, because I no longer knew how to answer it when it rang. I couldn’t have dialled a number myself and I certainly couldn’t text. If you consider a mobile phone to be an integral part of a contemporary lifestyle, then this was an epic fail.
Put all these things together with a sense of hopelessness and abandonment, at the mercy of bad architecture and institutional decor, with adult diapers and hospital food and no more opiates on demand, and in my case it resulted in an unsuccessful, though no less heartfelt, suicide attempt.
It was fury that would finally bring me out of it.
Wetting yourself at night was always an issue, for you, and for the staff. I learned, through nurses talking, that there was a whole unsuspected language around bed-folds and bed-linen. There were draw-sheets, macs, cuddlies...
And there was also a Kylie. It is the brand name of a mattress protector, so every time a urine-soaked bed was changed around me, I ended up being forcibly reminded of the bubbly Australian pop singer. “What about the Kylie?” one nurse would ask another over me as I sprawled there on my stomach, sodden with cooling urine at 2:00am.
I was contemplating Kylie a lot over those first weeks, for the ten minutes or so it took to restore the bed to dry.
One night I wet myself twice running and it was such a performance – the bed-changing with me still in it, the positioning, the rolling – that on the second occasion I certainly wasn’t my normal chatty little self with the night-nurses.
I can remember lying there sullenly, soaked, furious at having to deal with sopping disposable nappies and wet sheets again, two nurses rolling me over because I couldn’t do it myself, and making a firm resolve to never, ever have this happen to me again.
From that second onwards I kept urine bottles within reach. I used them when I didn’t need to. I squeezed every last drop of pee from me before bedtime.
Strangely, this and remembering to do this was the beginning of the rest of my life.
Even though my head was still a mess inside, judging from the pictures that specialists consulted on their computers like they were some sort of nasty porn collection, even though my memory was shot, even though I was having real problems talking, even though my head ached pretty much without respite – at least I wasn’t wetting the bed.
Now I simply needed to learn to walk again, and things would definitely be on the up-and-up.
Part 4: Gravity And Other Objections
I had hit the floor twice.
It was a particularly unforgiving floor, designed for hygiene and not comfort. You really felt its concrete underlay when you fell onto it. It really hurt.
I can’t fully remember the first time. It was too early in the progress of things and my brain was still smeary with the haemorrhage, so I do not recall the how and why, except that it happened and it hurt.
The second time, though, is still vivid. I was getting out of a wheelchair and being helped back to my bed. It was only a step away, but it might as well have been in Libya as far as I was concerned.
I was being impatient because these transfers from wheelchair to bed were driving me nuts. If I did them in the authorised way, they took forever. So I skipped a step and – wham – I was suddenly on my stomach inspecting the floor from a bare few millimetres above it.
It never happened again. Fear of falling was something I needed to learn, and my two lessons had really sunk in. They didn’t stop me doing things, but they really made me consider my actions.
By now, the wards and corridors at Rehab Plus were slowly becoming my home, even if I never quite knew what direction to take when I left the ward to go to the toilet or to eat.
One of the subtle consequences of the blood-burst in my brain, I had discovered, was to affect my recall of space and direction. I had real trouble composing the layout of the rehab unit in my thoughts.
Rehab Plus was – and still is for me, to a degree, even now – a strange hieroglyph imposed upon space. Its passageways and wings, its rooms and offices, gyms and wards, were impossible for me to organise in my mind. I never managed to keep a functioning model of this immediate environment in my memory.
It wasn’t helped by the mirroring tendency of the architects, where one ward-wing was laid out very much like another.
It was like living in one of Piranesi’s Carceri d'invenzione etchings, in which the Sixteenth Century artist visualised impossible spaces and architectures – where corridors multiplied and turned back upon themselves, where the shadowy green-painted rooms had depths and distances that you did not suspect, and where there was always the possibility of getting lost in an endless, institutionally-carpeted maze.
I was learning to deal with the instability of my recall. It was being nicely phrased for description by therapists. I knew that my pre-existing problem with people’s names was now multiplied by a million.
I was living more firmly in the present than ever before. Up to the instant of my stroke, most things were reliably imprinted in my neurons and retrievable, but everything that had happened after was far more fluid and elusively sketched.
But there was always daily routine to hang on to...
My days began when I was woken by my partner, John, around 7:00am. He works afternoons and nights as a chef in a city restaurant; so really, the mornings were the only time we could share. It was outside traditional visiting hours, but despite a bit of muttering by one or two staff members about me relying upon him instead of learning ‘independence’, his morning wake-ups were the firm beginning of things.
I’d rouse with him standing by the bed in the dim ward, holding the morning paper under his arm. I’d then transfer from bed to wheelchair, go to the shower, transfer to a bath chair, and shower with him in attendance, just outside splash range, ready to help me dry myself and help me get into my day clothes.
This process was chatty and filled with laughter.
We’d beat the morning rush, when the other patients were woken and toileted and washed. I was still impatient. I hated waiting. My stroke had done nothing to modify this character trait. I was happy to get up early if it meant I missed the delay.
I had my favourite Pears soap. In the antiseptic morning, surrounded by infection control protocols, it was also nice to be able to spray on Chanel’s Cuir de Russie post-shave, with John laughing at the way my face inevitably looked startled and I blinked as the perfume spritzed.
We’d breakfast in the still silent meal room, with the New Zealand Herald, even if most of its stories were a mystery to me. Then, as my fellow patients were getting up, we’d venture to the Point Chevalier shops, John pushing me the half-kilometre in my wheelchair, and we’d enjoy a real coffee in an early-opening coffee bar.