Memoir… My stroke story

‘I tried to stand, but fell back in the chair deflated, puzzled and detached…’

How much of what follows is true I can’t honestly say. Memory is no longer my best friend.

Among the known knowns is the fact that it started in London at lunchtime on Tuesday 9 October 2012. I was eating a sandwich in a quiet part of my workplace when a buzzing sound came to my right ear.

At first it was simply annoying, then it became a pest, a real fucker of a noise. Faster, louder, harder, the sound drilled on and on to become an ugly grind. I gripped my skull with both hands, as if that might make it go away. No.

Something was wrong. I felt nauseated. My vision became blurred. I tried to stand, but fell back in the chair deflated, puzzled and detached from any familiar reference points I might have found useful in making sense of these sensations.

My left arm would not do as it was told. My left leg wouldn’t move. The grinding noise in my ear was now a horrible, evil gouging.

I self-tested. I raised my left arm to place a finger on the tip of my nose, but poked my eye instead. I was having a stroke.

Somehow I managed to raise the alarm. Through the blur I saw Alex, an IT whizz. He once helped me fix a busted PowerBook.

Alex listened to my garbled plea and first-aiders arrived soon afterwards. Plus someone from HR.

I wanted to throw up, so I did, on the floor, between my legs. A close colleague, Maggie, walked by. Her face turned ash grey.

I gagged and started to throw up again. Like a shot from nowhere, the HR person grabbed a green recycling bin nearby and pushed my face into it.

By now I had an audience. Several of them were talking on mobile phones. Where were the paramedics? Who was going to call my wife? What is her phone number?

I felt left out, so all I did was try my best to not cause any further embarrassment.

The paramedics arrived. They spoke in sympathetic tones, strapped me into a chair and whisked me away promptly. This was “dealing with it” in a way I could understand, and it was comforting.

We cut through the traffic to the nearest A&E (Accident & Emergency), at University College Hospital on Euston Road, London. By now I was in a state of surrender.

There are five paintings in which I have attempted to describe my stroke story from the beginning to the present day.

Text I included on the first image (above) tells what happened next: “Same stupid questions over and over. Do you know where you are? Can you feel this pin I am sticking in your toe?”

There was some commotion when I’d been lying in A&E reception longer than government regulations deem reasonable, and a comedy scene unfolded when I was wheeled briskly around the hospital’s corridors to eat up time until a bed could found for me.

Once I had a bed I came off one list and joined a different one, no longer an embarrassing statistic showing that NHS emergencies were not being handled efficiently.

Eventually I went into surgery. An artery carrying blood from my heart to my brain had ruptured, and blood was leaking into an area of my brain called the cerebellum. In short, the leaking blood had drowned the brain cells that control the balance, coordination and fiddly finger movement of the left side of my body.

Long story a bit shorter, I had two lots of emergency brain surgery, spent three weeks in intensive care and was finally admitted to a stroke ward. Other complications followed (my brain swelled and became “soggy”), but I only flatlined once during this precarious time.

Nowadays my wife occasionally opens a sentence ominously with, “When you were in hospital…” This signals the start of a revelation of something I did or said that maybe I should be ashamed of. She then goes on to remind me how I mistook the heart monitor at the side of my hospital bed for a television showing a football match. “What’s the score?” she claims I asked.

On another occasion I got very frustrated at not being able to find the download on my iPod of James Joyce’s ‘Ulysses’, with Andrew Scott playing Leopold Bloom. Then I threw a minor tantrum when Hamlet was similarly misplaced. Friends laughed when they learned that my go-to Shakespeare play was the one about the madman. I thought it was a perfectly normal response to my predicament.

There’s another painting in the stroke series that tells of these days/weeks (above). I was heavily medicated and at one point contracted pneumonia. I looked forward to the next drug-induced hallucination/delusion. My wife Jane was preparing to marry a 17-year-old himbo and the nurses were organising a hen party. I thanked them for their kindness and asked them to make sure Jane got home safely.

In my head the whole hospital had actually been built on a sophisticated giant raft that could journey with ease in the world’s oceans. We cruised/floated between Spain and Florida, supplementing hospital food by catching fish. I devised a surefire baiting system for our rudimentary fishing wires that yielded a hefty catch at every cast.

Again I remember self-testing. Where did this urge to study come from? Was it a throwback to the impulse that led me, at the age of 15, to learn the Periodic Table of Elements off by heart?

I needed to know how alive I was. Over and over I’d recite the words to Edward Lear’s ‘The Owl And The Pussycat’ and to the Spike Milligan silly verse ‘On The Ning Nang Nong’. I would invent character voices for the owl, the pussycat and the piggywig, and mouth the words “the monkeys all say boo” as if I were Marilyn Monroe singing to the US President. I “performed” Bob Dylan’s ‘Knocking on Heaven’s Door’ in a Scouse accent. I could recite my secondary school register with ease: Andrews, Baker, Beckwith, Bennett…

If this counts as progress, I was on a roll. Successfully using a bedpan was a rare moment of bliss.

Eventually I became a patient in the hospital’s NRU (Neuro Rehabilitation Unit). There I took part in regular physio sessions in which I started to re-learn things such as how to stand from a seated position. I had occupational therapy that included washing and drying dishes or placing tins of soup on a cupboard shelf. I had sessions with a social worker to determine my needs when I was discharged from hospital. I had a feisty disagreement with a psychologist who tried to persuade me to redefine failure as “learning”. Many years later I felt foolish offering the same advice to a friend.

I was in rehab for eight weeks. This is a tough time for most patients, caged as they are in an institutional and psychological limbo-land. The painting for this time (above) depicts a robotic figure with its head just above water, its left leg being dragged down into the vasty deep by a ball and chain. Rehab patients just want to get home, to get away from the muck they call food, to watch some proper telly. Me included.

But something else happened in that joyless hospital day room, in the shower and on the toilet under the gaze of an occupational therapist, in the torture married to a sense of triumph at waking each morning to discover I wasn’t dead. It’s something I will forever be unable to describe. My best shot is the word love.

My recovery hinged on the partnerships I made with doctors, nurses, therapists, therapy assistants and auxilliary staff. They, of course, were just doing their jobs, as they told me often. My job was to get as well as I could, so we worked together, had fun building the ‘New Billy’, as my wife (also an active member of our collective) came to call me. We all got a lot from the experience. I came to see us – me, Jane, Linda, Coralie, Anne, Claire (2), Arancha, Joanne (2), Caroline, Kate, Fran and Niamh (yes, your saviour is very likely to be female) – as a gang, a band, an awesome tearaway team that would not stop until we’d won the game. This was a special kind of togetherness.

I still visit NRU at the National Hospital in Queen Square every year at Christmastime to deliver a card, plus macaroons and Vin Santo for the nurses and the therapy team. I relish the opportunity to visit at other times, too. If there is ever a day they stop me climbing that big deep staircase to the second floor, then gazing fondly into the day room and the gym, I will have lost something of myself.