Ben's story

For the first 27 years of his life, Ben McKelvey didn't spend too much time thinking about his brain, nor much about trauma. He was fit, carefree and happy working as a magazine journalist and doing celebrity junket interviews.

Then one day, while boxing, he suffered a stroke. Two years later, aged 29, he had a startling heart attack.

This is an extract from Ben's book, A Scar is Also Skin: A memoir of stroke, heart attack and remaking, about the day the best-selling author's brain changed forever.

I can’t remember arriving late to work on 16 July 2004, but I probably did. I would have gossiped and joked through the morning, perhaps replying to some emails and ignoring others. What work was done at Ralph was usually done in the afternoon. I took an early lunch hour with some of the other editorial staff, heading for the gym across the road, under the Catholic Club.

I was in the gym when it happened. I was hitting the heavy bag: straights to the top of the bag, hooks to the middle, bashing at imaginary kidneys. I felt good – free and young and strong – but inside of me a blood clot, which had developed in my hip days or weeks before, had broken free from its vascular mooring and was wending its way through my bloodstream and up my body.

As a digital timer above a mirror counted down the seconds, I watched my form as I punched. The timer counted down to zero and then dinged three times. I shook the lactic acid from my arms. A large fan blessed me with cool air. My t-shirt was matted against my chest and my neck and face were hot and crimson. I felt great.

I slowly shadowboxed as 2Pac’s song ‘California Love’, one of my favourites, came over the stereo.

The timer’s chime struck twice and I was at it again. As I’d been trained to do, I breathed out sharply as I punched, creating abdominal pressure and transverse force into my glove.

Psht-phst.

THWACK-THWACK.

I would find out later that this is called the Valsalva Manoeuvre. I would also find out later that a by-product of this manoeuvre can be an unusual haemodynamics, with blood travelling in an unusual direction in the body. Unusual but almost always harmless. Almost always. The clot from my hip smuggled itself up to my chest and then gushed into my heart with some blood, entering the cardiac chambers through my aortic valve.

My heart pumped, sending oxygenated blood through my chest, neck and up towards my brain. The clot followed. I kept hammering away at the bag. Left, right, hook-hook. Psht, psht, psht-psht. I worked and boxed and sweated and the clot jerked around the vascular highways of my brain with each heartbeat, before wedging itself into a tight blood vessel a few inches behind my mouth. The clot was stuck, the vessel was clogged and blood that should be feeding a section of my brain with oxygen was trapped. The cells in my brain started to choke and die. My mind started to change.

I had been rapping in my head as I boxed, until the words of ‘California Love’ blew away as though they were dust.

Soon only the bouncing beat remained. Butterflies waltzed in my vision. A splotchy thought was in my head, one that I could only later define. Strange.

That thought continued as I searched for the words to the song that rolled on without me. I couldn’t catch any of them in the front of my consciousness, not even the words ‘California’ or ‘Love’.

Strange.

I stopped boxing and pulled my gloves off. I spun my wraps out. I was confused. I knew this song well.

Strange.

I stood naked in a cold shower. The waltzing butterflies in front of my eyes became kites of spotted light and colour.

Strange.

I managed to clothe myself and fill my gym bag. I walked out onto the street.

Strange.

The street seemed familiar but I didn’t know where to go.

Strange.

A face appeared in front of me, also flushed red from gym work. It’s a familiar face yet there’s no name associated with it. Strange.

The familiar face recognised me. He was a friend. I knew I should say something, but there was nothing to say. I didn’t have any words accessible to me. I tried anyway. Something came out of my mouth. Verbal sludge. I understood the language of my friend’s face.

Panic.

Something was wrong. I tried again to say what was happening and again I couldn’t. I could tell my friend was shocked and scared.

I could tell he was scared for me. Another emotion surged through my brain like a tide.

Sad.

I didn’t know then what I was losing, but I knew it was a lot. I was disconnected, so much so that I couldn’t account for exactly what and who I was disconnected from. The disconnection hurt very badly.

Sad.

Tears grew in my eyes then built and burst. They streamed down my cheeks. I looked at this friend, this stranger. I shrugged, palms upturned. The taste of my tears as they ran into the corners of my smile is a memory that endures.

For the next hour or so, I was at a medical centre on Pitt Street in Sydney, staring blankly at an irritated receptionist and a medical consent form. I was told later she was convinced my brain was addled on ice.

The strong emotional journey my brain had gone through in the first minutes after the event was likely mostly over. I say likely, because I only have grabs of memory after leaving the gym. In the medical centre, I remember the traffic outside, a sign with red letters on a white background, and my friend pleading for an ambulance.

I also remember one strong emotion. I’m not sure I can exactly explain the nomenclature of the emotion but it’s the feeling I used to have when, as a little boy, I’d be in bed in a darkened room with heavy skin and a fevered forehead, and I’d hear life continuing outside – the postie pushing letters into the letterbox, kids on their bikes laughing, Dad collecting his things as he prepared to go to work. Jealousy, FOMO, envy – I suppose it was all those things but none exactly describe the feeling. Can disconnection be an emotion?

If so, it was that. This was something I would feel many times, and in varying degrees, in the weeks and months to come. I was eventually deposited at the emergency ward of St Vincent’s Hospital, close to Kings Cross. The controlled rush of too much work and too few medical staff was all around me. The rush was exacerbated as a junkie was brought in, screaming something I either couldn’t hear or couldn’t understand. I was led to a partitioned area that served as an examination room and there I waited, alone. The admitting physician arrived. My heart rate and blood pressure seemed fine, I had no pain nor mobility issues and there seemed to be no issues with my coordination – I was able to follow a pen with my eyes and mimic movements with my fingers when prompted. I could take instruction after charades and prompting, but I couldn’t understand any verbal instructions. I was almost wholly disconnected from language.

The doctor decided that something was going on – probably not the drug reaction that was suspected – but I appeared to be stable. He decided that I was not in imminent danger of dying and I found out later that he issued an initial diagnosis of infection in my cerebrospinal fluid.

I was taken to a corner of emergency and there I watched a silent television. The news came on and I saw a house on fire, a uniformed policeman behind a microphone, traffic seen from the air, swimmers in a pool, a medal ceremony. I tried so hard to force a narrative onto the images I saw that I developed a migraine.

A nurse came and took some of my blood. I smiled blandly. Time passed, but I couldn’t really parse how much time. Some friends arrived and I realised they’d finished their workday and it was evening. They would be going home or out for dinner. I would not be. I had that disconnected feeling again.

I knew my friends’ faces, but not their names. Another doctor came in and started speaking to me. As he spoke, I smiled and nodded in the way a toddler might when being spoken at: understanding the cadence of the language but little of the content. I still couldn’t speak nor comprehend well what was going on. A friend persisted with me until I understood that I would be taken to a ward where they’d administer a spinal tap, also known as a lumbar puncture, so they could draw some cerebrospinal fluid and test it.

I remember the smell of the lumbar puncture – acrid and medical – and the sound: the scrape of needle against spine. I remember a doctor, young and serious. I remember his sweater, very colourful like a Ken Done painting and clearly knitted by a loved one. I remember smiling like a dolt and I also vividly remember a shining moment of hope.

My friends were talking and joking over me as I lay on my hospital bed. I didn’t really understand their words, but tried to keep up as best I could so I would smile or chuckle, nod or shake my head when appropriate. I found myself staring at one friend’s t-shirt. Across it was one word, with illustrations around it. Through the idle chat of my friends, I focused on the shirt’s words and pictures with intensity. I couldn’t read the words, but I understood the pictures. There were mountains, snow-capped, and there were black bears. I tried to read the word, I managed to read a letter. The first letter: V. I put the sound of the letter in my mind and rolled it around as you might roll a hard candy in your mouth.

I managed to pull some other letters from the t-shirt and put those in my mind also. I tried to put the letters together, and then the sounds together. I added the pictures.

V-V… black bears … an-an … snowy mountains … V-V-Van … Vancouver!

The word on the shirt was Vancouver. I said it out loud, but quietly. I remember an instinct not to be embarrassed. I tried to put together a sentence explaining my revelation. None came, so I didn’t say anything.

It felt good knowing that word. Hopeful.

That night, I was given a bed on a ward. I was already getting better, and I was understanding more and being able to say more. I was still confused by most sentences but questions like ‘Do you want some tea?’ could be answered with ‘Yes, please’ or ‘No, thank you’.

In the relative quiet and dark of the hospital night, I understood that the doctors believed a virus was affecting me. That was something I thought I could handle. I’d had viruses before, and they’d run a predictable path: sickness and then less sickness and then little sickness and then no sickness. This incident I was experiencing had roughly run that path also and I was already in the less-sickness stage.

After finding that my cerebrospinal fluid was normal, and after a CT scan and then an MRI scan, it was decided that I hadn’t suffered a virus but a stroke.

This was a few days after my admission. I don’t remember exactly when I was first given this information, but I remember doctors saying the word ‘stroke’ to me when listing the things that probably didn’t happen to me, and then when listing things that may have happened to me, and eventually it was described as fact.

An older doctor came to me one day, with a group of studious-looking men and women who were all younger than I was. They crowded around me while the older doctor rattled off a long string of descriptors to his students. The word ‘ischaemic stroke’ was wedged in the middle. As he was about to move on to the next bed, I touched his arm.

‘Stroke?’ I asked.

‘Yes.’

‘I had a stroke?’

‘Yes.’

‘You sure?’

Flipping through the file at the end of my bed, he hummed until he found what he was looking for. ‘Yes. Stroke,’ he said.

He patted my hand and moved on.

Ben Mckelvey is an award-winning author, journalist and editor. Ben's memoir A Scar is Also Skin: A memoir of stroke, heart attack and remaking, from Hachette Australia, is available now.