How bowel cancer opened a heart to happiness

Bobby Bertoli was diagnosed with stage 4 bowel cancer in May 2020. Here Bobby reflects on how his diagnosis has given him a new perspective on life.

The most important realisation I have had since being diagnosed with stage 4 bowel cancer in May 2020, has been that illness is a way of living. Not a lesser, unwanted life, but a full and unique form of being. Of course, finding out that you have cancer is terrifying. I now know depths of fear and pain that I could not have imagined two years ago. But illness has also opened a door to what I define as ‘Present Joy’. For me, this refers to a maximal, unaltered appreciation of everyday happiness. I was diagnosed with stage 4 bowel cancer in May 2020. Today, I am learning to acknowledge all of the joy in my life.

Living with long term illness forces you to recognise that all life is fragile. From the moment a cancer diagnosis is suggested, we have little option but to engage with our fear of death. Considering that, as a society, we would rather distract ourselves with the toxic manoeuvrings of reality TV contestants than discuss this very human, very basic phobia, any response to cancer is undeniably heroic. Whilst every person on the planet shares a fear of death, it is those of us that are physically most vulnerable that must face it head on. I cannot overstate how tumultuous and destabilising this confrontation can be. And yet, regardless, we move forwards. We do not spontaneously combust the moment we stop and accept how vulnerable our lives truly are. Often, the reality is quite the opposite. I can only speak to my own experience; all treatment plans differ and some leave little space to consider new forms of contentment.  However, I found that, amongst the emotional frenzy of a cancer diagnosis, there were moments in which I was able to move beyond my fear of death and towards a fuller appreciation of ‘Present Joy’ - a level of clarity and quietude that is most familiar to ill persons and those who care for them. I believe that, by the lived experience of pain and disease, we can finally bare the weight of our own mortality and release ourselves from the burden of illusionary invulnerability. It is in these moments that illness offers opportunities for renewal.

Arthur Frank compares this process beautifully to mountain hiking in his book ‘At the will of the body’: “Knowing that you walk on the edge is not just an experience of fear, it is also clarification. I have hiked trails high in the Rocky Mountains, climbing through thick fog. At a certain altitude the fog clears, and suddenly I can see all that lies below me. It may be a long drop to the bottom, but the view is spectacular, and it is only at the moment of clearing that I know where I am.”

I’m not ashamed to say that, when I first read this, I genuinely punched the air. Like I was in a Beano comic. This is not an easy process to describe but Frank does it so sincerely and with such poetry. ‘Present Joy’ is knowing the depths of our fear, tracing the outline of our mortality and seeing with great clarity that we are still surrounded by beauty. Once I had read ‘At the will of the body’, I delved a little further into the world of clinical psychology, discovering Kaethe Weingarten and ‘Reasonable Hope’ - a way of managing the demands we place on ourselves, emphasising love and cooperation. Our cultural inclination to stigmatise disease and disability started to look burdensome, steadily I gained an appreciation of the time and space cancer had afforded me. What is this … opposite land? In all seriousness though, when the roots of our happiness appear abundant and universal, illness is no barrier to wellbeing. What's more, once we begin to live for ‘Present Joy’, the physical restrictions of our illness become less important. We begin to experience love with full awareness and wonder. 

Many able-bodied people feel that happiness is fixed to health and mobility. In hindsight, this is probably how I felt prior to my diagnosis. Unfortunately, this means that a common response to discovering someone has cancer is to express horror as well as empathy. If I had a penny for every time I’d been told that I’m ‘going through hell’. Film and TV tend to reaffirm this view, with cancer diagnoses often marking the beginning of a characters brutal and swift demise. Another common narrative is that a cancer diagnosis will inspire people to do hellish, self-destructive things rather than face the reality of their illness. In these instances, cancer is used as a device with which to emotionally arrest viewers, casting long term illness as something no-one could possibly withstand or rationalise. In reality, the human response to cancer is unfathomably courageous and complex. 

Of course there is fear. Of course there is panic. But illness is so much more than that, we are so much more than that. We are learning to love and appreciate life in gorgeous depth. We are finding the roots of our happiness and nourishing them with all of our strength. But most importantly, we are still here, present and thriving in all of our joy.