This is the first of a series of articles where John Davis recounts his experience of receiving life-saving surgery whilst on holiday in the USA and explains how the Social Model of Disability helped him negotiate his way through an emotionally and physically shattering experience. This story covers 12 harrowing months in the writers life and seeks to exploring issues of illness, disability, health, love and loss in ways that may be meaningful for those struggling with the impact of the Corona Virus.
These series of posts seek to convey the writer’s lessons learnt from a tremendously difficult set of life experiences. It attempts to do so without being overly dramatic or seeking to offend. But, please proceed with care as the events described here are not for the feint hearted or squeamish.
The three surgeons stood bookended by the green screens of the emergency admission bay. They apologised before saying, ‘your chances are at best fifty-fifty’. ‘You’ve been very unlucky, this type of thing is incredibly rare in fit and healthy people like you’. I was distracted for a second, I suppose I now presented as fit and healthy, but up until the last 2 years I had been very over weight. I asked if my recent regime of increased exercise and a strictly healthy diet had anything to do with my present predicament. They replied, ‘No, it’s a good thing, indeed it gives you more of a chance of surviving the procedures’. Many people had asked me why I decided to lose weight. Mainly it was opportunism, I was moving jobs and I set myself the task of leaving my work place at least the same weight as I had taken up the post 16 years previously. The weight loss was to act as a symbol of me reclaiming my body back from the unhealthy environment that Universities have now become (see here for UCU research on increases in referrals to occupational health). In the back of my mind there was another reason I felt it was time to get fit again, a distant feeling that there was a reason I needed to drop my weight. There is a cliché that middle aged men lose weight because of their vanity. But, my feeling was that a specific answer to ‘why now’ would be revealed to me over time. And, now, the meaning became clear. I had been preparing for this moment. Where my body needed to fight for my own life.
As I write these words, we are in the midst of the Corona Virus and thousands of people are facing such fights on a daily basis. Hopefully, my story will have some meaning for them or any other person that experiences life changing circumstances, isolation and the prospect of death. I am of that age where lots of my friends and their loved ones are making use of health services, where loss is an ever present and where we search for dignity among the ruins of our emotions. Many men find it difficult to talk about such things, and in some ways I am no different. I have spent a year trying to write this post, It has not been easy, yet I seek not your sympathy, I seek your attention and understanding. Your eyes. ears and hearts. For there may be something for you here that will give hope in the bleakest of times.
As I looked into the surgeons eyes, on a warm Phoenix day at the beginning of April 2019, I discerned no sense of evasiveness nor anything resembling patronising sympathy. There was just the faintest glimmer. An inkling of hope. ‘Hey!’, I thought to myself ‘I might just survive this’.
The youngest of the surgeons, had a generous and honest face. I interrogated him for the smallest flicker of doubt or shame that might intimate that I was not being given the whole story – there was none. He looked straight back in a friendly and supportive way, awaiting, respectfully and earnestly, for my reply as to weather the operation should go ahead.
It was early morning of our third day of our stay at our Phoenix Arizona holiday apartment when 2 fire trucks and an ambulance turned up with all horns blaring and planted themselves between the palm trees and telephone poles that rose up the incline from the coroner of E. Cheryl Dr and N. 12th St. As I exited the apartment, a crowd had formed, but, possibly to their disappointment, the fire trucks had only come as part of a training exercise – there was, as yet, no fire here. Just me, a middle-aged man, In what American’s call a Henly T-Shirt (Buttons – no collar) and rugby shorts being lifted on a gurney (stretcher) into the back of an ambulance.
Our travel insurance company had advised a call to 911 when 3 to 4 day flu like symptoms had given way to signs of an infection. My wife, a specialist nurse, was concerned about the potential for sepsis.
That morning, upon waking from a torturous night’s sleep, I could barely raise myself from the bed of the upstairs room that I had slept in. Yet within a few minutes of the ambulance arriving, I had to gingerly step down a set of steep steps to the ground floor of the apartment; when the crew from Phoenix Fire Department Station Number 7 found their equipment could not fit in the tight space of the stairwell. The slow excruciating process was facilitate by their encouragement; including jokes and stereotypes about Scot’s folks Brave Heart spirit.
I had shrugged my shoulders when they asked me if I could walk, ‘I’ll give it a go’. Collapsing on the trolley/gurney, the paramedics hooked me up to check my vitals and looked for veins in which to connect IV drips. I closed my eyes to go to sleep, only to be immediately awakened to provide my details and answer questions about my symptoms.
At times like these, it helps to be Scots and have family links to Ireland. Rapport was quickly achieved with the paramedics who had visited places where I had lived or worked and they employed their considerable comedic ability to tease me about having to now provide them with free accommodation when they next visited Scotland. Indeed, as would be expected in the USA, Station Number 7 had crew members with heritage and family links to a whole host of countries and continents. The care they provided was outstanding and the warmth and human generosity they demonstrated owed much to their ability to draw from the best aspects of those cultures to connect with you on a human level.
The crew found it particularly funny that I had put up with my symptoms for so long, ‘You Scots guys must have some pain threshold, American’s would have been calling for the medics way before now’, was the general theme. They used their sense of humour to keep me conscious, raise my spirits and instil in me the idea that I had at my core the ability to fight the ailment that had taken hold of me.
Even In the ambulance I was thinking, ‘I’ll probably need IV anti-biotic for a week and then ill be ok’. But, it did not turn out that way. You know you have gotten your-self into some kind of serious shit when, within an hour of arriving in hospital, you’ve been: blood tested, x-rayed, scanned, put on medication and have more lines coming out of you than a DIY home entertainment system.
The news at first sounded ok, ‘the scan has shown some spaces, pockets of air, at the top of your legs, into your buttocks’. Air is like a healthy word, isn’t it? We need air to live, don’t we? Air in the butt seemed to sound ok. Apparently, the presence of air is not always healthy. Apparently, when the air is in the part of your arse that should be nice and fleshy – the air is a sign of dead flesh. Basically, the grim reaper has a death card that top trumps the healthy aspects of air. This was not simply sepsis, this was Gangrene – Necrotizing fasciitis (NF).
Gangrene conjures up images of war injuries, infected troops, etc. But, at its simplest, it can be caused by a lack of blood flow or a bacterial infection. Until the surgeons could cut me open they wouldn’t know the extent of the damage and whether I had a chance of survival.
I chose my words carefully with the intent of focussing all our energies: ‘You guys look to me like you know your job.’ They all nodded. ‘My only chance is to cut it all out.’ They all nodded. Have you done it before?’, ‘Just the once’, said the lead surgeon. I paused one last time to enjoy the irony that, in recent years in Scotland, we had been talking a lot about hope over fear and wasn’t this just a very good example when hope and trust was needed. I replied, ‘Ok, go for it. All I ask is that you back yourselves and give it your best shot.’
You hear about people phoning their loved ones at times when they are staring death in the face. The love of my life – was sitting right next to me. She had spent most of her career as a specialist nurse. Her mantra was and is: don’t let the diagnosis define who you are. Work with what you can control, your way of being, your positive sense of self and your aspirations for what-ever time is left for you on this earth.
I knew instantly that this was the time for us to practice what she preached. Writing this post I was reminded of lines an American Aquarium Song: Into The fire:
The load is heavy and the road is long
And we’ve only begun to fight
We just can’t give in, we just can’t give up
We must go boldly into the darkness
And be the light
We didn’t know how far the Gangrene had progressed. The surgeons needed to cut me open to find out and once operated upon, they found that the infection was incredibly aggressive. They immediately carried out a debridement operation to remove some of the dead flesh and concluded that it might be possible with two or three further debridement’s to cut out all of the infect tissue.
The tricky thing was that I would not know until the end of a weeklong process whether my life had been saved, what bits had been cut off and what parts inside would still be working. Even after the operations, I would need to avoid a post-op infection for many, many, weeks to come.
Each time the surgeons operated, there was the potential to find that they had missed some of the infected tissue and/or that there was nothing more they could do because the infection had progressed to somewhere that couldn’t be cut out e.g. a vital organ/s. Each time they operated, it was a coin toss as to whether I would survive the procedure. The odds were lousy, I was, at best, an 8-1 dog in a two horse race between life and death. On the positive side, had I not gone into hospital, I would have been dead in under 24 hours.
After the first operation, the medics came out to see my wife who had been waiting ages. Their response was that it had went well but I wasn’t out of the woods yet, there was a long way to go and we wouldn’t know for a couple of days until after the other operations whether they could stop the infection. My wife went for a seat outside, a sudden storm got up and blew a tree over onto her, the staff from A, and E ran out and lifted the tree up. The main branches had just missed her and she was very lucky. At that point, it was difficult not to think ‘we’re cursed’ We had had a run of bad luck stretching back a few years to when our son had gone through a life threatening operation and beyond that to much more tragic family events. Recently, our run of bad luck had included being forced into temporary accommodation for 6 months having been Gazumped on a property. Even though Gazumping is supposed to be impossible in Scotland, the sellers had put impossible conditions on the sale until we had to give up. From my wife’s perspective this series of events did not bode well for my prospects. She had watched me work myself into the ground the previous year doing up our home to put on the market.
Before the first operation I had no time to say anything meaningful to my wife other than I loved her and to tell the children, if anything happened, that I was so proud of them. The lyrics from Dylan LeBlanc’s song entitled Unanswered Questions kind of some up what was going through my mind if my time was up:
I’ll find You
In the next life
Let it bring sweet peace to your mind
There’s no need to cry
Don’t ask yourself why
We’re all here on borrowed time
I have always thought that when tragedy strikes it is dangerous to ask why and that down that never ending road lies a path to madness. In his song, Dylan le Blank captures the need to accept what life throws at us, none of us have a right to live on anything other than borrowed time. After each operation I was returned to intensive care. After the first operation, I awoke, and asked almost disappointedly, ‘Am I still alive’. The feeling of death had gone away whilst I was under the anaesthetic, when I woke up it returned, along with a wall of pain. It would have been easy to throw my chips in there and then. A bit like the Karen and the Sorrows Song, There You Are, I had a feeling that the dirt was reaching out for me;
Let these vines grow over me
Let these branches be my bones
Let this sun be all I need
Let this dirt become my home……
There you are
There you are, there you are, there you are
If you brought me pain
Then pain is what I needed
And if I can’t be saved
Then let me be defeated
I was unable to move. They had made a long incision between the top of my left leg and bottom of my left butt cheek, through my perianal region and, then, across the line between my right butt cheek and the top of my right leg.
If the vines wanted to grow over me there was nothing I could do about it. The flesh that was removed included my pushing and clinching muscles that you use for running, side stepping, dancing and jumping. Those fun things that prior to the operation I had taken for granted. Tune in in a couple of days for the next instalment of Don’t Let Me Die in Phoenix to hear what happened during the subsequent operations.