Published by the 50/50 by 2030 Foundation, University of Canberra

Research and Stories through a Gendered Lens

The imperceptible line between life and death

May 10, 2022 | Trauma, Grief, Health, First Person, Long Read, Feature

Written by Gemma Carey

Content notification: This essay discusses grief and medical trauma. 

When my colleague died walking to work one morning, I passed an unexpected, though probably not universal, sympathy around: ‘When you are dying, you do not know you are dying’.

I’m not sure if that was the most helpful piece of information to share, but it seemed like the only gift I had to offer my colleagues in the face of such an incomprehensible tragedy. I wanted everyone to know she didn’t know, wouldn’t have known, what was happening. Ignorance is bliss, right? Or at least, bliss is being thankful that you don’t know that you are dying when you are dying. Though, that is not everyone’s experience.

For me, it was a very strange thing, this not knowing. Perhaps a protective mechanism of the mind. Or a physiological consequence of blood being draw to your heart and lungs and away from your brain.

The tricks, backflips and subterfuges our minds can perform to protect us from reality are astounding. Our minds can tell us a limb we have lost is still there. They can bury a dangerous memory so deep we may never find it again. We can disassociate, placing our minds out of our bodies when our bodies are not safe. In the short term, these neurological martial arts save us from the horrors of our lives. Like when you are lying crushed under a tree. Or in my case, bleeding to death internally.

The mind has a dexterity for self-protection that mirrors even the most athletic physical act. With one chamber of my heart collapsed, and sixty percent of my blood pooled in my abdomen, it never once crossed my mind that I was dying. That I was, in fact, moments from death.

Maybe it was my mind protecting me. Or maybe it didn’t occur to me because, like my colleague on her way to work, it happened on such an ordinary day. It happened without the warnings we think will proceed our death; a whisper of foreboding, an alarm that you are in danger. A sense that this day, this pain, this ailment, is different to all the others.

Sometimes, there is no warning.

❖❖❖❖

So it was that one afternoon, my left uterine artery ruptured. Not for any particular reason. And not with any hint it may be about to happen. I went to work, I sat in meetings, I walked back to a friend’s place for dinner. We played a board game. I excused myself to the bathroom, where all of a sudden I had to lay down on the floor – needing the cool tiles to sooth my flushed face – and thought ‘I feel very odd’. The room spun a little, my face flushed more. And I thought ‘oh my, I really do feel very odd’.

‘I feel very odd’ quickly turned to ‘I feel very sick’ and then ‘I feel unimaginable pain’. But it never turned to ‘I feel like I am dying’. And yet, I was.

Later, I learned that the collapse started gently. A tiny part of my artery just giving in – letting little bits of life seep out. Then, steadily, it gained momentum. Until I needed to lay my head on the cool tiles of a bathroom floor and think dully about the small bits of dust clinging onto the pipe that formed the stand of the bathroom sink. Wondering if my friend would be embarrassed that I had found this bit of missed dirt.

I know how my artery felt. Some days, don’t we all just want to give in? Step out of our lives and float, at least for a little while? And if you lean too far into that feeling, you’ll gain momentum, just like my artery did when it decided it had had enough. It can be a dangerous game.

When I reached ‘I feel unimaginable pain’, I did yoga, I swallowed a bunch of pain killers. I took a hot shower, sitting on the floor with my husband watching me on the other side of the water, whimpering from the pain, water streaming over my face. I  still didn’t think ‘I might be dying’.

When none of these things brought me any relief, my husband drove me to the hospital emergency department. Upon which, he and I sat, in a storage room of a Sydney hospital room while I was bleeding to death for five hours, untreated and ignored by a junior doctor.

Don’t be so shocked; decades of research has documented the ways in which women go undiagnosed and untreated. Women receive poorer health care, and often have poorer outcomes in emergency departments. We know that while women underrate their pain, and seem to be able to tolerate far larger amounts and of greater intensity than men, we also know, from the research, it is summarily dismissed.

So in the societal I live in, it is in fact not shocking that forty-eight kilograms of thirty-something me was ignored when I said to the doctor in the emergency room, ‘I can’t breathe. I can’t walk. The pain is so extreme’.

His reply? ‘I think you’re hyperventilating’

‘My stomach is distended, I know you can’t see it but believe me I don’t normally wear pants that can’t do up… why would I?’. ‘

‘Do you think I’m crazy?’.

Oh, you do.

I know how the story gets told. When a young woman comes to emergency and says she’s in pain. Every woman knows how the story gets told. It’s all just an exaggeration.

Finally, when the junior doctor says ‘I’m pretty sure it’s just a muscle spasm. I think you can go home’, I lose it.

‘This is not a muscle spasm, I’m three shots of fentanyl down and I still can’t breathe or move for pain. GET-YOUR-BOSS’.

In my head I scream it, but I think it came out as a mumble. A mumble that saved my life. If I had gone home – believing the doctor, because don’t we all want to believe it’s really nothing – I would have died before I reached the front door. I would have bled to death in the passenger seat of our car. After five hours in one of the best hospitals in the country, driving through the medical precinct of Sydney to get back to our friend’s house, I would have died. Life is absurd like that, sometimes.

But I did not die this way. When I demand the boss, they wheel in an ultrasound machine.

Moving it over my stomach she says ‘Blood. Blood everywhere’.

‘To theatre, NOW’.

My eyes close. I let go. I lean back into the pain and the drugs, assuming whatever it is that has gone wrong they will now fix. My job is over. It’s their turn.

I have developed a love of general anaesthetic. Some people are afraid of it, I know I was the first time when I was sixteen and I had abdominal surgery. Now, twelve surgeries later, I love it. If it were a recreational drug, I would become addicted to it. I’ve never been addicted to any recreational drug; they’ve never held much allure let alone hold over me. But general anaesthetic is different; it calls to me.

As the anaesthetic kicks in, I know, for the next few hours, I am not my responsibility. Living in a body with chronic illness, a body that has housed death, is exhausting. The maintenance, the mindfulness. The vigilance of it. When I am put under a general anaesthetic it is the only time I can truly let go. I can hand over the weight of living in this body. ‘It’s your job now’, I think as the room begins to swim, and I know someone will now fix whatever has gone wrong with me this time: this is what I have feared, this is what I have longed for.

When they find that I am not in fact hyperventilating, but struggling to breathe because my lungs are surrounded by blood, a vast emergency surgery team is assembled. They take my hospital bed from the storage room and rush it to theatre. I’m lifted onto the surgical table where they perform an emergency general anaesthetic. I’ve seen my fair share of surgical tables, but let me tell you – this was something special.

When you have emergency – minutes to live – type surgery, you lay there on your back, while they pull the surgical gear that is usually kept out of view until you’re under, into place around you. One anaesthetist holds your windpipe shut while another, instead of giving you the normal sedatives, shoots you full of white fluid that stings in your veins as it runs up your arm.  An arm that is now more full of drug than blood. The blood has been pulled to the brain and the heart – the body working hard to keep itself alive.

I still do not think ‘I am dying’. Though, I do think – as they choke me – ‘I think this might be serious’. I also think ‘it’s your job now’.

❖❖❖❖

When I wake up, I stare at the clock at the end of the hospital bed and wonder how so much time could have possibly passed. Hours have passed. It is night now. I came to the hospital early in the morning.

Finally it hits me, ‘they had to keep me under for five hours’. I’ve had so many surgeries, none of them – even the big ones – have lasted five hours. ‘That could not have been a five-hour surgery. I just wasn’t stable enough to be woken up. I was dying’.

They come to my bed when they see I’m awake and they tell me I’m not to move. Later, on, on the ward,, they tell me I must stay still in the bed, that I shouldn’t walk for weeks. And I realise ‘Oh, I still sort of am dying’.

It doesn’t land like a stone, this knowledge. It lands like a feather. Later, it lands like a punch in the teeth.

❖❖❖❖

In the days that followed in the intensive care unit, I imagine the scene when they cut me open. All that blood gushing out, onto the table, onto the floor. Litres of it. My blood, my life, spilling out over everything while they pump me full of new, strange, blood. I walk around for months afterwards feeling a stranger’s blood run through my veins – I want it out, but if it is out then I am dead and so I must live with this stranger inside of me. I try not to think about it. Or that really, it is a thousand strangers inside of me.

When I woke up from the surgery there was no blood. In all my hours of bleeding to death and being pumped full of new blood, I never saw a drop of it. The evidence of what had happened, gone. When my colleague, Allison, died under that tree it was the blood being hosed off the pavement that made it real – the fluid connecting our knowledge with our emotions in a way that we could begin to make sense of what had happened.

When I lost one of my babies, it was the blood that covered the hospital bed that made me understand that it was really over. It was the blood that lasted for weeks, a slow small flow by then, that held me to that loss – ensuring I was unable to ignore or separate myself from it. Where there is blood, we must pay attention.

On the hospital ward in the days and weeks of my recovery from blood loss, as different surgeons and nurses came to visit, I would ask them about the blood; ‘what did you see?’. I was trying to reconstruct the five hours of my life where six surgeons worked to save me, but of which I have no recollection. By asking about the blood, I was trying to cut through my disbelief, connect with the fact that I had nearly died.

Finally an aestheticist seemed to realise that this was my way of trying to make sense of the incomprehensible.

I needed the facts of those five hours.

‘I saw a full artery rupture. I saw blood spirting full force into your abdominal cavity.’

I nod. I begin to comprehend.

Gemma writes that although her body has never been reliable, "I embrace all that I have." Photo: Supplied.

Gemma writes that although her body has never been reliable, “I embrace all that I have.” Photo: Supplied.

When you come within a hair’s breadth of death on an ordinary day, it does strange things to you. Like blood, you split; when you put blood in a centrifuge its spins into its separate parts. Has my life similarly cracked, like oil in water?

In the weeks after the surgery I began to obsessively think about my missing artery.  This part of my body I’d never given a moment’s thought to. I’m not even sure I knew it was there. But now it’s gone, it haunts me.

I’ve lost other parts – wisdom teeth, tonsils, appendix. None of them followed me around like a ghost afterwards. This is different.

There is the absence. A strange sense of knowing a part of me is missing.  I know this partly because now I can feel the place where that artery was in a way I couldn’t before.  Seven staples, their tiny metallic arms bound around my severed artery, sitting on a nerve that runs down your leg left me for a long while periodical shooting pains down my leg. A reminder that those foreign objects.

But it’s also different because I shouldn’t have lost my artery – had the doctors’ identified the problem when it was just a flow, when I said I couldn’t breathe, or move, an agony so powerful my husband had to lift me from a wheelchair onto a hospital bed in a storage room, it could have been saved.  And I wouldn’t have to know what it feels like to be filled with blood from your pelvis to your shoulders.

I’ve experienced a great deal of pain in my life – surgeries, broken bones, chronic nerve pain. Debilitating pain. Filled to your shoulders with blood pain? It has an intensity like nothing that had come before. Your body goes rigid. It has to – every muscle movement, every tiny bit of air you draw, intensifies the pain. The only word I could think, the only word I could form and push out of me – agony following it out into the air of the hospital storage room – was ‘Help’.

My mother was a chronic pain sufferer. Her specialist used to ask her to describe her pain, but she could never find the right words for it. Musically trained from a young age, she eventually said to him – ‘I can’t describe it, but I can tell you what note it is. It’s a D flat’. He immediately understood, and when she told me I nodded ‘yes’; a dull pain, low, constant – an undertone to life, as you go about your day.

Filled up with blood to your shoulders pain is a screaming high note. The type that makes you want to cover your ears and scream too, like somehow adding noise to the situation will make it better. It won’t, but you can’t shake the impulse.  That note makes your vision go blurry with its awful noise. It drowns the world out. There is just this note – piercing everything, on and on. And you say softly: ‘Help’.

I think hearing that note changed me. Like the artery now gone, it haunts me. I didn’t want to know that the body can experience so much pain. And that it can happen out of nowhere. And people will be cleaning your blood off floors, off sidewalks.

 ❖❖❖❖

Truth be told, it’s never been a reliable body. I collect autoimmune diseases the way my grandfather collected coins.

It is impossible to talk about autoimmune disorders without invoking metaphors of suicide. It is, after all, the body attacking itself. At its extreme, it is your body killing itself.

Not a gentle giving up, like a sigh; like my artery. Autoimmune disease is trench warfare. Relentless, dirty, exhausting with the ever-lingering threat of being buried alive.

After my artery burst, I wrestled with these two truths. My body is waging war on itself, and the parts that aren’t under attack can simply give up the ghost at any moment. And a question swirls in my head – ‘how do I live in this body?’.

In Swimming Home, Deborah Levy’s protagonist says to another in the opening scene, “life is only worth living because we hope it will get better and we will all get home safely”. Did I get home safely? What else did I lose on that day?

I came home. After a long stay in hospital, and a longer stay in an apartment near by – just in case. When I was well enough to travel the three and a half hours from Sydney to Canberra. When, weeks later, I was allowed to try and walk again. I made it home.

I made it home, but I’m not sure I got there safely. I didn’t come back the same.  In the 1600s they believed blood carried the physiological and psychological traits of its owner. A stag’s blood could make you proud and fearless.  Give the blood of a subdued dog to an aggressive one, and it should become a docile lap animal. While obviously disproven, these early beliefs about blood offer up the perfect metaphor; through my three blood transfusions I have a jumble of tens of thousands of personality traits, along with the remnants of my own, pumping through my body. Jostling for position.

How do I live in this body? I wonder this when I lie in bed when unwell. I wonder it when I walk through the mountains near my house, and people jog past me and I look on longingly at what their bodies can do. My body can’t run. But it can survive the seemingly unsurvivable. It can endure the unendurable. Maybe those joggers, with their perfect training regimes, don’t have bodies that can do that. Maybe there is solace in this knowledge.

❖❖❖❖

Soon after losing my artery, I fell pregnant. Pregnancy made me realise how alone I have always felt in my body – with its never-ending war. ‘We both have to live in here now’, I’d say to my baby. For the first time ever, I have a true comrade. It was a relief, to have someone else live in my body with me – to have to rely on such an unreliable thing for survival. For the first, and maybe only, time in my life I was, we were, in it together.

Though, my baby was fighting his own war. One he did not survive.

And so I am alone again. More alone, by the contrast; comrades in war no more. I think – can I give in? Step out of my life and float? Can I lean into that feeling, like my baby? Like my artery?

I know death intimately. I have seen death in the faces of the doctors as they chocked me, in the eyes of the nurses who came to my room to hug me after the surgery. I have had death inside of me, as I walked around for days with my baby after he lost his war without being able to tell me. I know it so intimately I am not afraid of it. I know it so intimately I know I do not need to seek it out. It will find me, as it has before. And when I can fight no more, I’ll relax into its embrace like I do my lover’s. I will surrender my war. I will rest. When I think of this I do not know whether to call this feeling sadness or joy.

And so I keep my obituary current. I embrace all that I have.

I walk under trees, and I listen to blood move through the arteries I have left with the steady thump of my heart.

  • Please note: Feature image at top and directly above are stock photos. 

 

 

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Gemma Carey is a Professor at UNSW, and author. Her work has featured in Meanjin, The Guardian and she appears regularly on the ABC. Her memoir ‘No Matter Our Wreckage’ is published by Allen and Unwin.

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