‘I tried to stand, but fell back in the chair deflated, puzzled and detached…’
I can’t honestly be sure how much of what follows is true. Memory is no longer a good friend. Among the known-knowns is that it started in Kings Cross, 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 into 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.
Something was wrong. I felt nauseated. My vision was 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 was misbehaving, out of control. 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 G4 PowerBook. I figured I could cry for help straight into his face and he’d step up to the mark. I really didn’t have much choice.
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 nearby green recycling bin 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 should call my wife? What was her number? I felt excluded, so all I did was try not to 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, at University College Hospital, Euston Road. By now I was in a state of surrender.
There are five paintings in which I tried to describe My Stroke Journey from the beginning to the present day. Handwritten text 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’m sticking in your toe?” There was some commotion when I’d been languishing on a trolley in the hospital reception too long and a comedy scene unfolded in which I was wheeled briskly around the hospital’s corridors to eat up time until a real hospital bed could found for me. This was obviously a ruse to make sure my extended presence in A&E did not count as a bad mark, showing that the hospital was failing in its duty of care.
Eventually I went into surgery. An artery carrying blood from my heart to my brain had ruptured. Blood had leaked 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”), and at one point I was not expected to survive.
Nowadays my wife occasionally opens a sentence ominously with the words, “When you were in hospital…” This signals the start of an embarrassing revelation about something I did or said that maybe I ought to be ashamed of. She likes to remind me, playfully, of the time I mistook a heart monitor 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 my download of James Joyce’s Ulysses, with Andrew Scott playing Leopold Bloom, on my iPod. 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.
There is another painting in the My Stroke Journey series that tells of these days/weeks (above). I was heavily medicated and at one point suffered from pneumonia. I looked forward to the next drug-induced hallucination/delusion. My wife was preparing to marry a 17-year-old hunk and the nurses were organising a hen party. I thanked them for their kindness and asked them to make sure she got home safely.
Some of the fantasies were totally surreal. In my head the whole hospital had actually been built on a sophisticated giant raft that could journey with ease around the world’s oceans. We cruised/floated between Spain and Florida, supplementing hospital food rations 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 repeated bouts of self-testing. Where did this urge to 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 would 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 ruck 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 ‘My Stroke Journey’ 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.