Following on from Article 1 In today’s article John Davis continues to recount his harrowing story of being admitted to hospital with gangrene in Phoenix and analyses his experience of having to repeatedly wake with the thought, ‘I wonder what the surgeons have cut off today’.
This type of gangrene is most commonly experienced by people with compromised immune systems. My wife had only seen one case like this in her 38 year career and that person had been Diabetic and the infection had been in the front not the backside (known as Fournier’s Gangrene). In the ambulance, en-route to the hospital, the paramedics asked me a whole set of questions that would make even the most open minded person blush. These questions caused much hilarity between myself, my wife and the paramedics. It turned out that sometimes this type of infection can occur in men who have experienced injuries inflicted during excessive sexual activity.
Prior to going on holiday, I had been working for weeks doing 12 hour shifts in my role as a Professor of Education, including weekends. So, we quickly ruled out excessive sexual activity as a possible cause. I had set myself the task of finishing a research proposal, setting up a new masters module and completing a UNESCO Chair application before going on holiday – so, rather than being caused by being too loved up, the infection had most likely found a good starting point in the fact I had weakened my immune system by working myself into the ground.
Madeleine Bunting has researched why we work too hard. Historical analysis links over work to low wages and a fear of hunger that manipulates us into being exploited for our labour. In my case, the burning hunger that fuels my work links with my social justice aim to support children and families to overcome adversity. With in the context of the current university culture f increased workloads, out of hours working and negative bullying cultures, it is easy to get sucked into patterns of overwork. Sick university working practices have recently been challenged by a strike that seeks to change our working conditions see link here,
Bunting also suggests that our work lives now involve a battle with time – the fact that I overworked for 16 years in a Russel Group University on programmes that are only taught in the evening and weekends, had eventually caught up with me. A year before ending up in hospital, I had moved to a different university. Moving jobs also took its toll, I got carried away trying to make too big a first impression. Over the years my increased workload included blurring the boundary between work and non-work by increasing the number of places where I place my writing. This blog, writing more for the print media and appearing on radio/TV added a lot to the average week’s workload. With the exception of coaching youth rugby, most of my free time went into campaigning for social change. Carie Wolfe critiques the humanist notion of ‘investment in self’ and the way that academics, through social media are sucked into developing their ‘brand’:
‘I think the simplest, most mundane answer to the question of why the Enlightenment idea of the self has been so hard to budge is that everything in our culture encourages us to invest in it, for economic and legal reasons that are not far to seek. We’re encouraged more and more to develop our “brand,” as it were, whether by accruing more and more friends on Facebook or by perfecting the kind of balanced “portfolio” between academic, athletic, and non-profit work that university admissions committees want to see’
I was not consciously developing ‘my brand’, but I did spend a lot of time promoting the social justice agendas of local community groups, new print media platforms and think tanks. As I have written previously in this blog, my selfishness is related to a need to appear selfless and be needed by other people. When you add this to my ‘never give up’ way of being that constantly pushes the boundaries of what is possible; and to my own personal hunger for recognition of my contribution to the life of others, selfish selflessness led me to over do things.
Revisionist approaches to the concept of humanism promote a need to balance individualism (too much of which might lead to egocentric narcissism) and universalism (too much of which might foster authoritarianism /oppression). Recent trends in universities have seen the development of a system that accentuates the worst aspects of individualism and universalism. Universal review of individual staff research performance has led to very individualistic working cultures and increased staff burn out. At its heart, the spiritual and meaningful nature of university life has been set aside for performance cultures that count or weigh our output as if it is a commodity that our superiors, governments and countries can harvest to preen their institutional vanity, to climb international league tables and to enable national economic gain.
In 2018 I had drawn my own conclusions about the dangers of my old work practices and had moved jobs to try to change my work habits. But, alas, I took steps too late to rectify things and after 6 months of easing myself into a new job, had, between January and March 2019, fallen back into my old ways of overwork.
Hence, the potential causes of this ailment were not as heroic as being war wounded, nor as funny as what Scots folk might refer to as ‘death by prolific shagging’ – my ailment was a form of overwork induced self-harm. I had, as we Scots might say, ‘been an arse’. By putting my work before my health I had opened myself up to the infection. I had actually ‘worked ma arse off’ to the point that I was wheeled, on several occasions, in and out of theatre to have parts of my arse removed (please note that in Scotland the word ‘arse’ is pronounced more like the word air with an accentuated capital A and that the letter R is rolled as much as you can as in; ‘Airrrrse’).
The early questions about the cause of my condition set a gallows humour type tone for my whole experience. Humour is often used by working people as a shield to protect themselves from shame, to distance/disassociate their mind from the worst of their experiences and, collectively, to boost each other’s spirits when times are bleak.
As well as my sense of humour nursing and medical staff seemed impressed that I was positive, forth-right, open-hearted and approached their questions without any sense of shame. When they asked where I got my strength of character from, I explained that for many years I had worked in the Disability field and that this work had taught me how important it was to challenge notions of shame that are associated with physical, cognitive or emotional impairments. I told them that negativity couldn’t help the situation and if this was my last day on this earth, I was dammed if I was going to feel ashamed of who I was, where I came from, or, what was happening to me.
I also explained that we all had to believe this was going to work out because to think otherwise was to create a self-fulfilling prophesy and negative climate that might bring about the worst. In the present context of the virus induced lockdown , it is worth remembering this sentiment – hope is our greatest friend Do not think of yourself as ‘isolated’, a ‘victim’ or ‘stuck’. Think of yourself as connected to lots of people who have had to also make stark changes in their lives. If you are struggling, reach out, tell your story and seek collective support. We must not allow the weight of this crisis to break our ability to support each other’s cause and, if and when we get the virus, there should be no shame associated with that outcome.
What medics do to our body can only work if we and the people and organisations around us create the optimum environment for our recovery. Even then, sometimes, that is not enough and our time is done. We rarely get to choose the date we enter the exit lounge – but if we arrive there with a clear conscience and having done our best, we will have lived an exceptional life.
I learnt in the hospital that we should avoid judgemental approaches. And that this includes the need to avoid judging our lives by how many plaudits, baubles or medals we have accrued. I went into the first operation knowing that if I did not come out the other side, I could rest assured that, on the balance of my strengths and failings, I had done my bit for humanity, my family and my friends.
Our bodies can never be separated from the cultural, social and psychological aspects of our identities and lives. My arrival in life’s exit lounge was not precipitated by a single cause. At this stage we did not know what had caused the actual infection, but we could work out what had made me susceptible to infection. A combination of individual, work and health related circumstances reduced my ability to fight the infection off. I have to take responsibility for my own limitations and Ester Rose’s song Don’t Blame it On The Moon helps me to do this. I was too much in love with the idea of helping other people to help myself:
I hope I’m worth all this heartache
Outside the bar at 2 A.M., again
I thought I saw the writing on the wall
but it was lying
Why does flying feel like falling down
If you can’t tell the sky from the ground?
Don’t blame it on the moon
Tell me what’s a soul to do?
Don’t blame it on the moon
I’m just in love with you
But, equally, the institution I worked for 16 years was a sick place; with poor working practices. Research by the local union demonstrated that working conditions meant that staff were kept in a constant state of hyper vigilance, trying to meet the demands of students, management regimes and research funders. Hence, our health issues can never be separated from the social aspects of our lives. And, here lies a message for how we fight the Corona Virus.
The virus has to be met with a transdisciplinary combination of social, medical and economic responses. Our bodies, our health, and our well-being can never be separated from the circumstances that surround them. The world is changing in front of our eyes and key questions that confront us are, ‘Why were we not more prepared for this’, ‘What is it about our societies that mean certain people from specific communities will die in greater numbers?’ and, ‘How can we ensure that our social, health and economic systems survive and change in ways that ensure such a crisis can never happens again?’
As was we go forward, we will need responses that enable grass roots folk to set up new systems of support, economies and collectives that utilise our interdependencies as a locus for survival, awakening and change. Humour and collective belief will be a key tool of survival, as will acts of empathy, kindness and care. We live in a social media age where nastiness is constantly around us. Where, at the click of a keyboard, vile sentiments can reach the homes of thousands of people. But, in reality, and at a local level, the virus has been met with a million acts of kindness (see article here in USA Today from my pals in Ireland and the USA) . As the virus progresses we will all be tested. When you are tested you need to find your best self, and, as this song tells us, you have to treat folk with Kindness, . A Kindness · Justin Peter Kinkel-Schuster
My forth-right approach to my medical issues was aided by my experience of working in hospitals on disability issues. People who work in hospitals use a type of gallows humour to protect them-selves from the harsh realities of their jobs. So it was natural to fall into a relaxed, positive and yet quick witted way of interacting with the medical staff in America. These humorous exchanges with staff were important to me, as they prevented me slipping into any type of defeated state. Not that in making this statement I would judge any other suffering soul who cannot overcome their health circumstances. During these bleak times, I lent a lot on my Scottishness. Being hospitalised in the USA, felt like I was representing my kin folk and our nation. If I was going to pop my clogs, then I was going to go out in style. With a smile and a laugh that would let everyone know what Scots folk are made of. Putting my best side forward included letting my creative and strong sense of self stand as a wall upon which to take the weight of what was happening.
The social model of disability places our life problems not within our bodies but within the way that society is structured around us e.g. when it builds inaccessible buildings; the cultures that create barriers for us , or, the notion that people with impairments are victims; and/or, the way people impose their discriminatory attitudes on us e.g. by calling people with impairments names like cripple, spaz or mongo. Cultures of blame seek to define people who experience impairments as abnormal, deficit or lessor. The Social Model of Disability explains that impairment is something to do with the body and that disability occurs when people do stuff that discriminates, inhibits or creates barriers to people’s full inclusion in work places, social groups or everyday spaces.
In particular, discrimination occurs when we assume, in hierarchical ways, that people who experience impairments are ‘not like us’, are ‘blighted’, are ‘damaged’, or, are ‘dangerous’. None of my disabled friends ever asked me if I was going to be ok. They never talked in ways that sought to deny my experience. None of my disabled friends sought reassurance that my impairments were not severe in a, ‘get over it your OK now’, type of way, that suggested they themselves couldn’t cope with the idea I might have permanent impairments. None made comments regarding the likelihood I make a full recovery or said, ‘I am sure you will be fine’. For to do so would have been to foster attitudes that seek to deny the reality of our impairments.
The surgeons sought to remove the infected tissue, but they could not ‘cure’ me from the experience that I went through. Similarly, we will one day have a vaccine for the Corona Virus but that will not ‘cure’ us of what we have gone through. This situation is something we have to experience, endure and survive. The pressure of the experience will bring about new ways of thinking, being and doing. Now and later, we may be able to learn from the experience. Our learning will not bring back those that we have lost, but, it may bring some kind of closure; if we can ensure that others never have to go through what we have had to endure.
When I have discussed my experience with disabled friends, our discussions have centred on whether I was listened to by professionals, could make choices in the hospital and was supported to experience reasonable adjustments that took into account my views. These discussion focused on the social barriers that needed to be removed and the support I have received from staff, colleagues, friends and family. The wonderful support I received has made my experience less gruesome.
At times I felt defeated, but there were enough people around me to lift me up. During the Corona Virus crisis, it is incumbent on all of us to reach out and support those who feel defeated. Sadly Bill Withers died recently. His song ‘Lean On me’ is very apt for these times. Withers never got sucked into the excesses of fame. He argued that as he had not become famous until his 30s he had grown up a regular guy and did not need to be anything else:
Sometimes in our lives we all have pain
We all have sorrow
But if we are wise
We know that there’s always tomorrowLean on me, when you’re not strong
And I’ll be your friend
I’ll help you carry on
For it won’t be long
‘Til I’m gonna need
Somebody to lean on
When waiting for a diagnosis, it is tempting to fall into the trap of thinking in terms of a hierarchy of impairment. E.g., you might make deals with your-self that you can cope as long as they don’t have to cut off X, Y or Z. I did not have the luxury of any such ways of thinking – they had to do what they had to do and I had to live with the consequences. When you are dying – the medical model tends to get first dibs on you and your body so that you can be kept alive. As a friend I used to work with, that is now a professor in disability, pointed out to me, you don’t say, ‘ I can’t have that medical intervention because I am a social model purist’. Equally, once you have taken your medicine, your recovery is very dependent on socio-relational things like having people around who support you. There is not an either, or, choice between medicine and social support – we need both.
Each time I woke up, the medics had removed more of my butt. Each time I woke up I asked the staff if the surgeons had cut off anything important and they told me that nothing crucial had gone. It seemed like a miracle. And, yet, in a contradictory way, the miracle did not seem to matter at all. Such was my debilitated state and pain levels that I was reduced to a complete feeling of nothingness. As a response to the shock of invasive surgery, as a result of the anaesthetic and in order to fighting the infection, my body had shut everything down. I was limp and my mind was only working very slowly. I had to wait until all the operations were over before I might move from that state of nothingness to a place where being alive might actually have some meaning.
Waiting for a diagnosis can be a very personal and individual thing. In my work, I have seen many examples where loss, illness and impairment have split up families and led to further tragedies. Often folk can not cope with the changes in status, role and responsibilities that come with life’s hardest experiences. There will be discussions going on in households across the country about how families cope with this present crisis. Having gone through such a process, my advice is: do not hold onto sacred cows, accept that all your plans have changed and try and take small steps until you find yourself in a better place. Charley Crockett’s– “The Valley” teaches us just to find a away to take that first step:
My daddy didn’t know me
My brother rolled the dice
My mama kept on working
And my sister paid a price
Darkness did surround me
Trouble everywhere I turned
Then one day I started walking
Everything I’ve got, I earned…
Now you know my story
I bet you got one like it too
May your curse become a blessing
There ain’t nothing else to do
Coming around between operations in a medicated haze, that gives way to shear agony, has little to recommend it. All I could do was make the curse a blessing. The nursing staff were exceptional and the intensive care nurse seemed to be psychic. At times, I could hardly speak, but she would come in and sense exactly what I needed and turn me, change my dressings, give me a drink, or up the medication, depending on how she read my body’s requirements.
The picture that I have featured for this article, shows me on the 5th day of my stay in intensive care. It was the first time they had taken the oxygen off. I was neither asleep nor awake. I wasn’t aware the photo had been taken, but I was aware that someone was there. My hand is across my chest towards my heart for a reason. I had finally found a position that enabled me to, sort of, meditate with the pain. It didn’t make the pain go away, but something about the touch of my hand near my heart drew out warm and loving thoughts as a counter to the pain.
I fall in love with people on a fairly regular basis, because I love to connect with the best in people and support them to flourish. But, even for me, each time I think of the care that the intensive care nurse provided, the feeling of love that I feel is quite overwhelming. It brakes my heart to think of what the intensive care folk in Phoenix (and across the world) are now going through with the Cornoa Virus. As I write, that nurse is now risking her own life to support the lives of others. My thoughts are with her and her colleagues at this time.
Lots of nurses and physios (both male and female) also cared for me with an ethics of love. I have kind of amalgamated all these people into a poem below. The amalgamation includes the significant loved ones who gave me a reason not to give up. The health professionals came from different back grounds, had different life experiences but at their heart they believed in and respected their own and my abilities.
What I realised, during this time, was that you can have all the health procedures, systems and funding structure you like but an ethics of love in your healthcare system heals most. An ethics of love is not what we see when politicians praise health care staff in front of the press and then cut their funding, do not provide enough equipment and freeze their pay or even reduced it in real terms.
When I use the term Love, I am not talking about something sexual or something trivial, I am talking about our appreciation of each other that comes from the heart. A belief in self and other. I have tried to capture this concept of care/love here in this poem. Where I juxtapose an old Loretta Lynn country song with the idea of a Phoenix. I do so, to represent the care I received that enabled me to rise again and cheat death. The version I have on my ITunes is sung by Vanessa Niemann of the band Gal Holiday and the Honky Tonk Revue and this song, more then any other, kept me going through those terrible Phoenix days and nights.
The Phoenix Amongst The Flames – A Love Letter:
Gal Holiday spoke to him
Through his headphones,
Brought him back
To a moments reality
What hope her music might ease his pain
‘I’ve seen him as he awakens in the morning
He reaches out his hand and without a word
As his fingers softly fall upon my face
He lights the flame of desire
And makes me want him
Then – the money line:
‘Love is the foundation we lean on
And all you need is love
To ease your mind…..’
Lying there wounded, chased and hurt
He looked up to see
A pair of brown eyes,
A calm and careful Phoenix of a nurse
When the pain was at its worst,
She would instinctively be there,
Compassionately traversing his world.
As if the only thing of beauty in a bleak universe of pain.
A glistening tour de force; bringer of care
Tae cure any manner of his despairs.
Five in the morning nae chance to sleep
Tears runnin’ doon his face
Yet, he couldny greet
How he yearned fae his heart and soul tae sleep
Then this Phoenix would arrive tae turn bitters tae sweet
She reached out to him in the moments he was most pain blind
Holding his hand
When he was lost of body and mind
Offering hope to repair his lifeline –
Each piece of frayed twine after each piece of frayed twine
He held on and on and on
Tae this image in his mind
Tae this healing entity so generous and kind;
Creature, being and essence entwined
A spirit of nature gifted to humankind
This magnificent incarnation of calm and composure
Reached out to heal his wounds
Over and over
Love, care and a compassionate shoulder
From the most gentlest of hand holders
Ever circling with moving intent
Ever ready to swoop down to lift him when spent
Ever present to ease his suffering
Ever there to guided our traveller back
From that place he almost went
As sleep finally washed over him
Gal Holiday’s voice played out in the back ground:
‘One more time now,
Love is the foundation we lean on
And, all you need is love to ease your mind….
The nurses reached out with a desire to care and heal. Not a sexual desire, but a loving, caring, desire. There are different kinds of love and there are different kinds of desires. The point of the poem is that love heals. However, you should note that it is very important not to put the people you love on a pedestal, because such forms of worship diminish your own sense of self. Hence, love only heals if we share and do love as equals.
The nurses that cared for me were all, in their own ways, flawed human beings. Bu,t I loved them for their awareness, professional care, kindness, generosity and humour. I generally looked past their flaws and foibles. I tended to view the staff’s idiosyncrasies in a very positive way. The different staff members’ idiosyncrasies brought a lovely colour to the bland uniformity of the hospital
At my most incapacitated, all I could offer the nurse was a look of thanks. Yet, something about the nurse’s way of caring helped me to feel appreciated, as more than a bundle of impairments, as more than simply the nothingness that the infection had reduced me to. Tune in next time for Article 3, to learn how many operations were carried out, what happened after the last of the operations and how, from the bleakest of processes, hope began to emerge. P.S. Many thanks for your supportive comments on social media regarding the first post.
You have been reading an article from the Don’t Let Me Die In Phoenix Series. Follow the links below to access the other articles in this series.