I was moved to write this blog post after having read Stephen Pollard’s article ‘I’m frightened I’ll die of Covid-19.’
Here, Pollard writes that ‘the coronavirus has made me realise I was in denial about my leukaemia.
The coronavirus has brought home to me just how isolated and vulnerable I am, in every sense - social, financial, psychological, and physical. To cut a very long story short, I have at least two, possibly three, chronic health conditions – diabetes, heart disease, and hypertension – all brought on by an undetected condition of Asperger’s. I had been warned from a couple of places that I am in the ‘at risk’ and vulnerable group, which I knew. It was only when I did some research that the stark reality behind that warning sank in.
The risk can be broken down over an age-range. For patients over 80 years old, the mortality rate is 14.8 percent; for 70 years and over, 8 percent; for 60 years and over, 3.6 percent; for 50 years and over 1.3 percent; for 40 years and over 0.4 percent; for ages 10 to 29, a rate of just 0.2 percent; and for younger, there were no reported deaths — the latter representing less than 1 percent of patients.
For people who are already ill, the risks are also higher. The analysis shows a 10.5 percent fatality rate for those with cardiovascular disease, [that’s me], 7.3 percent for diabetes, [that’s me], 6.3 percent for chronic respiratory disease, 6.0 percent for hypertension, [that’s probably me, I suffer from anxiety disorder], 5.6 percent for cancer — and 49 percent for people already in critical condition.
The odds do not look good for me. I have been attending stress classes. Here, I learn how to manage stress, live in the senses, change how I react to problems, adopt breathing techniques and such like. I’ve been taught this before. That’s fine as far as it goes. In addition to all else going wrong in my life – my father recently died, my employment is uncertain, my income meagre, bills high, I live alone and am isolated – the new neighbours have started to play havoc in my front garden. Not that I expect much sympathy. It seems it’s not just the weak who are to go to the wall, but the good, whilst ‘society’ prefers to bend over backwards to accommodate the most wretched behaviours. I’m looking at this virus and wondering whether it is worth surviving. For what?
Of course the nature of chronic illness is that it can never get better, only worse. You take the medication and control your diet and exercise in an attempt to stand still. You are living with the knowledge that you are now on course for death. A chronic illness as opposed to an acute illness is that you are fighting a long defeat in the grip of a slow death. That can encourage the illusion that since imminent death is not on the horizon then you are OK. You are not OK, and the warnings issued with the coronavirus are a forceful reminder of the finality of your condition. I’ve been living with a knowledge of diabetes since 2014, when I was only diagnosed by accident. I had never visited a doctor since leaving school and frequently boasted as to how fit and healthy I was. I did 500 press-ups a day and would ramble for miles (I still do the latter). But I had to have a check-up before an operation, (that’s another story) and my high blood sugar levels indicated the near certainty I had diabetes, which was confirmed in due course. Then in December 2016 I suffered a massive heart attack. I was taken to hospital by ambulance in December 2018 with the symptoms of a heart attack. It turns out it was a false alarm, but rigorous tests were done. Over a period of months, ruling out physical causes of my condition, my doctor suggested Asperger’s as the cause of my deep and constant anxiety. This has yet to be diagnosed but I am 99.99% certain that this is correct. There’s good stress and bad stress. In trying to cope with the complexities of the world with an undetected AS condition, my stress has turned bad and potentially lethal. My only lifeline now is a diagnosis of AS. I have been referred. As I await appointment, the coronavirus strikes, no doubt putting everything back. Seeing as I am in the at risk category, I won’t be travelling by public transport to the hospital which is dealing with the referral.
In fact, at the moment, my only thoughts are on survival, finishing any outstanding pieces of work and writing I have lying around, and doing the best I can to reduce stress and focus on positive things, things I enjoy. It’s hard work. As any AS person can tell you, people are just flaming annoying and monstrously insensitive or just horrid. If I was to make the effort to get someone who didn’t have Asperger’s to understand what it is like to live with the condition, I would ask them to think of the chaos, the confusion, the bewilderment, and panic they may have felt – or witnessed - these past two or three weeks in the shops and then understand that is what normal life is like for me. But I am only guessing this from the comments people are making on panic buying. Having to experience that constantly in life and having to explain it to people who don't understand is incredibly draining.
The point is that if you live with a chronic illness you are living with an extended death sentence. If you manage your condition well you can enjoy a good and enjoyable life, so much so that you forget about the inevitable death that awaits. As with everyone else. You get on with life. As with everyone else, you know that one day you are going to die, but just presume it’s not around the corner. I’ll bet most people who have died have never seen it coming when it does finally come. I don’t sit around pondering finality. The complexities of life keep my poor meagre mind occupied full time. I have difficulty enough surviving from one day to the next, let alone wondering about how and when the end would finally come. But the capacity of a chronic illness to convert quickly into an immediate death sentence has been made clear to me by the coronavirus. If I get this virus then it highly likely that it is curtains for me. I not only have a chronic heart condition, my heart attack in 2016 was so severe that one-third of my heart is dead. So there it is, the stark facts of life and death.
And hence my upset with the fact that the life I am living hardly seems worth the stress that has brought me to this. I have started to write as if every word I utter will be my last. Because it may well be.
As I shopped to make sure I have all the essential supplies for a one or more month confinement, it occurred to me that at any point I might actually come in contact with the virus and that I might well be dead and buried in just a few weeks. It’s possible. The hard facts and numbers on this say it is entirely possible. So are many other things, like getting run down by a car on my distribution job. You can’t live your life in fear of the end around the corner. I am, of course, taking advice to stay out of harm’s way and avoid contact with others and the outside world as much as I can. That’s been normality for me. I’ve never been one for contact. With AS, I have had to suffer people rather than enjoy them. I have found people to be annoying, irritating, boring, upsetting and a million more other things. I get the feeling I could spend my entire life in my room and be perfectly fine.
Given any number of problems mounting in my life at the moment – deaths in the family, housing, employment, bills, physical and mental health – I am only too happy to follow official advice and take time out from a social world that can only be described as wretched for me at the moment. I will gladly ‘shield’ myself from society and human contact as possible. I intend to follow advice and orders and stay indoors. I would be happy to stay indoors writing, exercising, cooking, keeping a wretched world at bay. I could do this for the next three years, let alone three months. In fact, I could live from my room, looking at the same four walls, with my nice tapestry of Elvis wearing that winning smile on his face, until kingdom come. Which might well turn out to be the case.
The coronavirus has made it clear in the starkest terms the real possibility that for people like me this could well be the end. So what? It is a reminder to me not to be too bound up with the stupidities and complicities of other people, who are forever planning and contriving their way to different futures through a magic thinking that avoids difficult, frankly intractable, issues. I can’t promise to tell it like it is, but I can promise to tell it like I see it. And I know that people won’t like it. But I have no interest in flattering their wishful thinking. I may not have the time they have, and I doubt they’ll learn by experience no matter how many years they have left.
When I was rushed to hospital with a massive heart attack in December 2016 I was told by the doctor who checked me on arrival that it was probably already ‘too late.’ I took this to mean that I was being taken in to die. I felt perfectly calm. I felt fine. I had a quick reflection on my life and drew the conclusion that I’ve done OK. I felt my written work to be OK, too. I’ve not done badly, I thought. Maybe the shock of finality had yet to sink in. Had I been given a week or a month to live I’ll bet I would have panicked a little more at first. Or not. Many don’t, they see out their days in calm. I don’t know. I had misunderstood the doctor in any case. He had been referring to the likelihood of permanent damage. He was right, hence my chronic illness. It was a slow death sentence that has now been pronounced again, with the threat of immediacy by the coronavirus.
I’ve been looking after and monitoring my health ever since. I’ve done as much as I can in terms of diet and exercise. I eat well – fruit and vegetables and little treats – and exercise well – exercise bike, 15km in 30 mins, weights, hikes. What I can’t do is put my social life on an even keel. And the problems keep mounting. I await this diagnosis to see if it can lead to a great turning. Without that, my life is on a lethal trajectory. I knew that long before the coronavirus turned up. This would be the case without the virus and will remain the case long after the virus has gone, if I am still here to find out.
Life events are not going my way. I suffered the recent bereavement of my father, my little job offers few hours at low pay, nothing like enough to pay bills and keep a roof over my head. In addition to my chronic conditions, there is the continuing inability to shake off the anxiety disorder attendant upon an almost constant stress. I need support from people, instead I am always expected to be ‘on’ politically, intellectually, philosophically. The Lord alone knows, I have dropped heavy enough hints about listening to Elvis and talking about Elvis, but I am allowed no relief, no outlet, no joy. Nothing. One thing I know through counselling is that negativity undermines the immune system. I am doing my level best to raise my spirits. People have to keep interfering with problems. The constant stress mounting in my life, in other words, is impairing my already impaired immune system. Whilst that may be obvious to me, it is less obvious to others. I am fighting like Hell to find people who can lighten the load, even just a little. Instead, as I come face to face with a virus that is tearing through nations and communities, promising to turn my long death sentence into an immediate one, I am expect to be making future housing and employment plans. There are short odds I may not even be hear in a couple of months, and the more I get distracted with talk of future plans, the shorter those odds get. Sat here alone in my house, I am seeing myself as a character in a tragedy unfolding in the minds of others. Well, if I am going out, I am going out saying what I mean. And I don’t give a damn for your pathetic fallacies and delusions, your workarounds, your collaborative politics based on nothing but wishful thinking and hot air. I switch on the news and social media and all I hear is that time is up for people like me. 'Underlying conditions' .. and how wonderful it is to read of brightly coloured dolphins that now flying over The Thames as a result of the disappearance of humans. Every time I switch on, all I seem to read is a message from all places telling the likes of me not merely to go home and disappear, but just die. I'm going to see about volunteering where I can, it will have to be in safety and at safe distances, because I can't risk contact. But making some kind of contact with someone who needs it somewhere may well give me the uplift I need.
Pollard writes that ‘the coronavirus pandemic has upended almost everything for almost all of us. But it’s upended one particular part of my existence – that section of my mind which has been dealing with my mortality. After the initial shock of the leukaemia diagnosis, my reaction has been a form of denial.’ I was never in denial when it comes to the combination of diabetes and heart disease. Where I have been in denial is with respect to human beings. I have thought them to be better than they are. If I am gone in a month or so, I don’t doubt a few will lament the loss. I’ll just ask them to ask themselves where they have been when I have needed help, by which I mean help of a certain kind. But, of course, in large part that is my own fault for not seeking out like-minded individuals for company. But that’s what happens to people with AS.
What I want to nail once and for all is the lie that I never listen and never do as I am told. I have followed the medical advice to the letter and kept up all the exercises I learned in rehab. I’ve been a very good patient and have done everything I have been told to do and done it right. I have developed good habits and maintained good practices. I’ve done my best to correct much else that is wrong in my social existence. It may not be good enough, but my mentally and physically exhausted state bears incontrovertible testimony to the fact that I have done my best. I have needed to work better rather than harder, for certain, but I have needed others to help me on that. I haven’t needed others to keep setting me impossible goals and targets. I have had a lifetime of that, hence my pronounced tendency to withdraw and isolate. My only worry at the moment is that I have come in contact with the virus as I have shopped in preparation to isolate myself. The isolation holds no terror for me. I have found that is people and society to be far more terrifying. And terrible.
So I am not actually in denial of death; I am in denial of life, because in the main it hasn’t been great for me, not outside my family circle, ever narrowing as time passes. Pollard writes that he has ‘spent the past five years deliberately trying to avoid thinking about the prospect of dying early.’ I have spent a lifetime trying to avoid thinking about the impossibilities of taking my place as an Aspie in the surrounding neurotypical society. I have only come to that realisation in recent months. Even with chronic illness I have not been obsessed with avoiding thinking about death. I obsess over my written work. I decided at Christmas time to issue several works I have had in store. They need to be properly edited and supplied with proper citation and bibliography, but as I wrote on my blog at the time I had a feeling that many things were ending and that many things were changing, and events have proven me to be correct.
Right now, my main concern is to finish reading through a set of notes I have on Lewis Mumford, morality, and modernity and just put it out. I am not happy with it. It is long and repetitive, it is disjointed, and for long stretches it is difficult to see what the point and purpose is. It has the makings of an excellent book, on the lines of Eugene McCarraher’s The Enchantments of Mammon, and I find the fact that it written before McCarraher’s excellent book is galling. I have not been allowed to work solidly so as to bring these projects to speedy conclusion. The same with the book on Dante I have been writing since February 2017. It was largely finished by the end of 2017, but one thing after another has stopped me working. Now I have one, two, or even three months off, and I intend to take them. And state my mind, taking the view that this might be the last chance I get.
Pollard also puts himself in the position of telling it like it is. He describes himself to be a rational person who has no religious faith, worshipping only at the altar of science and humanity’s capacity for learning. I go the other way, claiming it is the transcendent hope attendant on religious faith that incites the innate, God-given capacity for learning. If not, why bother if it’s all just accidents and monkeys? I’m being short and nasty now. It’s my way of saying I really have no time and less interest in those ‘debates.’ I’m more interested in what Pollard says next:
‘So I have told myself that I’ve dealt with the diagnosis by parking it at the back of my mind, accepting the consequences but not yet dealing with the emotional impact. Why do that now when there is no need yet? I’m 55 now, and if the treatment works, I could have decades left. Wait until I need to start with the morbid stuff.
It turns out that is all utter rubbish. I realise now — now that my cancer is no longer just a chronic inconvenience which poses a vague threat to my life but something that could lead to my dying within days — that I have been dealing with my death already. I’ve just refused to admit it to myself.’
I’ve not been in denial and have taken my chronic illnesses seriously. The hard part I’ve had is in persuading ‘life’ to play ball. It doesn’t, and neither do people. Because who really gives a damn? Nature could care less. Goodbye, good-riddance, it happens to all in the end. And the end is always coming.
Pollard says he has started crying at night this past week. The advice that we need to avoid overloading on the news runs in the contrary direction to keep up to date with the latest developments. ‘News is my oxygen,’ Pollard writes, claiming that he lives for news. But now he admits to ‘blubbing,’ despite not being a cryer. I always liked the line in Lee Marvin’s Wandering Star:
‘Mud can make you prisoner, and the plains can bake you dry;
Snow can burn your eyes, but only people make you cry.’
And they do, some intentionally, but others not so. The salt of the Earth.
Pollard continues:
'I’ve got a 10-year old girl and an 8-year old boy and, while I might not be the best father in the world, I am their only father and I don’t want them to have to confront losing me. I don’t want to have to think about not hearing my daughter sing again or my son play the cello. I don’t want to have to contemplate never cuddling them again. Over the past few days, I’ve had to do all of that and more. Because it’s now a real possibility.'
I don't really have that much. I did used to have budgerigars, who I'm sure would have missed me. And dogs. So what do I care about? Right now, finishing my Dante book. Dante never finished any book he started except his last one, The Comedy. And the end of that had to be put together after Dante died shortly after writing the last word. And that’s how I now go into isolation, using last second of time and drop of energy I have to finish my book, Dante’s Sweet Symphony of Paradise. That’s where you’ll find me. Before that I am rush issuing a book on Lewis Mumford, Morality and Modernity. It is fragmented and incoherent, but I am out of time. It goes out now, in that form, or never.
Pollard concludes with the wonderful line in Woody Allen’s Love and Death. Allen’s character asks Diane Keaton’s, “Sonja, are you scared of dying?” She replies: “Scared is the wrong word. I’m frightened of it.”
‘Honestly, I am frightened of dying,’ Pollard writes. ‘Specifically, of dying now. I can live with the cancer killing me, as it were. I’ve spent five years adjusting to it. But Covid-19? That’s just not fair.’
And whoever said that life is fair? The coronavirus will the weakest and most vulnerable people the hardest. Ask yourself why societies are so divided and iniquitous. Nature distributes its gifts unequally, and could care less. But society? Why is society so unfair?
My answers are in the Dante, and it is to that work I now turn. With T.S. Eliot, I believe that Dante's Comedy is one of those precious few books which one grows up into at the end of life. Dante was the last project that William Blake worked on. It may be mine. It may not. Either way, it is Dante Day tomorrow, 25th March, and I shall celebrate it by returning to my Dante notes and materials in the determination to finish the book I have been working on since 2017. As the great Elvis sang "it's now or never" (a song itself derived from the Italian "O Sole Mio."