Staying Alive: nothing breaks like a heart (some reflections on surviving a near death experience)
This post is rather different from my usual writing. It is an attempt to make sense of some major experiences that I have been through in the past few weeks. It is mostly about how I carried on living, how I was lucky that I had access to a team of highly skilled surgeons through the Scottish NHS. It is also partly a reflection on the different realities that I experienced during the ‘near death’ event, and the porous gaps in my own sense of what was/is really real. Lurking behind this are bigger questions that I would like to explore one day around the experience of delirium, and my own mental bricolage that put together an experience and interpretation of the life-changing failures going on in my body.
I am having a serious struggle with reality at the moment.
In the past month I have lived two realities — one of which was brutal and very real for those close to me, but which I hardly remember. The second seems far more real, although I know it wasn’t.
The former is the ‘real’ reality — what others tell me really happened. And alongside that, there is the reality that I experienced, which is very different (although related).
The former is quite straightforward. I had an aortic dissection, from which I would most likely have died if it had not been for the efficiency and excellent clinical skills and knowledge of the Scottish NHS, and in particular the cardiothoracic team at Edinburgh Royal Infirmary. It came over me in mid January, whilst shopping in the supermarket Morrisons — I was on my way to pick up my daughter from after-school club, when suddenly I experienced what seemed so much what I’d expect a heart attack to be like that I assumed that was what was happening.
It wasn’t a heart attack. The main vessel that pumps blood from my heart (my aorta) was beginning to split open, perhaps because I have a bicuspid valve on my heart (with only two flaps instead of the usual three). The split was internal, that is the blood was leaking within the aorta. I am told if the split in the aorta had become worse, I would have bled out internally very quickly and that would have been the end of me.
I am extremely thankful for the many parts of this story that led to my recovery. I live in a small town, so I was able to get in my car and drive just five minutes up the road to the local hospital emergency department. I live in a country with (what is called in some places) 'socialised medicine' — i.e., it is available to all, regardless of ability to pay. I did not have to hesitate about the potential cost of whatever treatment I needed. My priority — and that of the medical team — was finding out what was wrong and trying to fix it. Very quickly I was injected with paracetamol in my heart and dispatched by ambulance to the nearby large hospital in Dundee for treatment.
However, once there I was referred onward, this time to an internationally renowned surgical team in Edinburgh (a further 50 miles away), who had the expertise to repair my dissection. I am not sure how I got there, some have suggested an air ambulance. In the meantime, my wife Isabel was having to chase after these emergency vehicles in her car across eastern Scotland, with no idea whether I would be alive when she finally caught up.
I recall very little of this, thankfully. I remember the CT scan in Dundee and something of the interior of the ambulances. The last thing I remember is entering the operating theatre (presumably in Edinburgh) as the anaesthetic kicked in, thinking that this really was it: this might be the last thing I remember.
The surgery (I am told) was complex. I needed to be cooled down, to slow down my heart rate and blood pressure, and then a mechanical ‘bypass’ needed to be established to divert the flow of blood from the damaged aorta. Once this was safely in place the aorta was replaced by an artificial tube (a stent). I shudder to imagine all this, with me lying opened up in the operating theatre for around 12 hours. Meanwhile Isabel was warned during this long wait that there could be no certainty that I would survive the extensive surgery.
Following that, I was put into a drug-induced coma and connected to a ventilator for several days to aid my recovery. I was not a passive participant in this process. Even though I was drugged up and weak from post-surgery, I resisted the tubes and the catheters. I tried to pull out the tubes from my mouth, at times I fought the nursing staff so I could (try to) get up and have some freedom.
But this isn’t the narrative arc I recall. I was in hospital in Edinburgh for two weeks, but I cannot remember anything from that time. None of it. I was first in the high dependency unit (HDU) on the ventilator, and as I came off that I was transferred to the intensive care unit (ICU). As I recovered, a decision was made to transfer me to my local hospital back in Perth. My first recollection is beng taken to the ambulance for that transfer.
For me, that was the point at which my life was rebooted.
Despite this, I have a rich collection of experiences and memories from during that time. That is what I remember as ‘really’ happening. It does not map onto the process very easily — it feels more like three weeks than the two that actually happened. During that time (I thought) I was in Manchester, Tillicoultry, and then later in the south of Italy.
First and foremost, though, I remember being in a bath (me as a normal person, with no scars, wounds, or stitches), overhearing a doctor explaining to Isabel how they had had to operate on me. My recollection of this is wondering where it left me... What was happening to me? How would this end up? Was I alive or dead?
Subsequently, I have been told that such experiences are quite common during heart-bypass surgery. It is generally called post-operative delirium. It was nothing like the classical ‘near death experiences’ that are familiar from popular culture. There was no bright light, or choice (to go or stay), or even an ‘out-of-body’ experience. I was sitting in a bath, listening to a conversation about the operation.
My later experiences became more complex. I put this down perhaps to the processes of recovery after the intense surgery, particularly the drugs used to stabilise me, including quetiapine and morphine. This didn’t just take me to southern Italy, it also involved my two black cats at home becoming (what I took to be) ‘shamanic’ custodians, doing graceful sliding backward walks somewhat like Michael Jackson’s moonwalking.
At one point I also had to make a stand against the neo-liberalisation of hospitals by (of all things) defecating in a waste bin. As far as I recall, this actually happened — but I am told it did not. None of it.
(The fact that this did not happen is something of a disappointment to me. Not only was I proud of my principled stand against privatisation, it also led to a very interesting discussion with a Franciscan priest and an NHS middle manager [who in my view had an uncanny resemblance to Steve Buscemi] about neo-liberalism, colonialism, Fanon, and resistance. It also led to a number of further layers of experience, including the ‘ninja’ cats and my finding a way of travelling easily between Edinburgh and Perth. But this only happened within the confines of reality within my own experience.)
And this brief account merely scratches the surface of a very detailed — and visceral — series of events that I was part of.
These two experiences of reality intersected with each other for two weeks, until I returned to Perth Royal Infirmary for the last stage of my hospital recovery. I am now back in my own home (out of hospital), with the prospect of another six months of trying to get better. I am much weaker than I was before, I have to take things slowly — such as walking, taking the stairs, washing, everything. My legs are about half the width they were before, and for some reason much of the muscle on my right shoulder has disappeared (probably due to the work that was done to replace my aorta). I become breathless easily, and I’m often prone to tears (either at the relief of surviving, or the thought that I may not have been here for those I love).
I have a long recovery ahead… But at least I can and will recover.
But this is not my story alone. Much of my survival and recovery was made possible by my wife Isabel, who had to make the long drive from Perth to Edinburgh and back each day for a fortnight (approximately 150 miles), only to watch me prone on the ventilator or otherwise spouting what sounded like nonsense from my delirium. At one point I told her we had to get out of the place, that she should go get the car ready while I made a run for it. I recall the moment from my delirium, it was horrendous and I really needed to get away. In my delirium I did not have the tubes and support, nor even the catheter. I wouldn’t have got very far.
At another point, I think when I was coming out of the coma, I have a very real memory of Isabel speaking to me directly, telling me I was recovering — and of my feelings of happiness to see her, as at the time I thought I was alone in Italy.
I am also overwhelmed by the health service that I put myself into for treatment. I am astonished by those who denigrade what we have in Scotland as ‘flawed’ and ‘socialist’. If that means it has somehow managed to avoid the brutality and racialised cruelty of private health care, then so much the better. Even so, I recognise that my life, and my survival is part of the privilege of living in a country with the means and wealth to invest in such an excellent system.
I am also overwhelmed by my experience not only of the surgical support I received. Much of my experience of my recovery in hospital was through the nursing staff — both during the times in Edinburgh that I do not recall (in HDU and ICU) and later in general recovery in Perth. The nurses that monitored me, fed me, washed me, and sometimes had to grapple with me (to stop me trying to escape) all played a very important part of my recovery.
The past year has been a very stressful one overall, particularly due to my taking on two part-time jobs at different universities to do something I love — teaching. The stress has come not from the jobs themselves, but from the way in which those jobs are structured, as marginal and precarious, on the edges of the university in many ways (whilst also being central, ‘core’ courses). Being paid salaries that are fractions of what I would be paid full time, with none of the support of a full time member of staff. It was my choice to do this, as I enjoy the work so much. But I would so much like to see a return to the idea of a university that treats its staff (both full and part timers) in a humane manner, rather than as disposable cogs in a large, exclusive machine. And I say it knowing there is nothing unique about myself here, that there are hundreds, indeed thousands of marginal and precarious staff across universities in Britain struggling to keep the dysfunctional system working.
But alongside this, my main problem was a dysfunctional body, being pulled apart in this system. I was overweight, diabetic, with high blood pressure, and a bicuspid valve on my heart which possibly made me prone to the dissection which happened.
Again and again I remember how lucky I am to still be here, alive and with a future ahead of me.
But I am also left with a difficulty in engaging with reality — what was (and is) real, and how much reality was created within my head? I recognise that some major agents and influences were at work, powerful drugs and physical interventions such as heart-bypass surgery. But I cannot lose hold of the sense of what I thought of and experienced as reality — even if we call it delirium to make it seem more manageable.
What happened is now past, and I am still here, thankfully. And I have a lifetime now to try to make some sense of it.
Malory Nye normally writes about religion, particularly on his Religion Bites blog. In the past few years he has held short term and precarious posts at the Universities of Glasgow and Stirling, but he is currently without any position or salary.
He can be found on Twitter (@malorynye) and on his website, malorynye.com. He produces two podcasts: Religion Bites and History’s Ink.
Malory Nye is also the author of the books Religion the Basics (2008) and There Shall be an Independent Scotland (2015). He is currently working on a new edition of the Religion the Basics book, together with a new book on Race and Religion, which will be published by Bloomsbury Academic.
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