Aspects of Spirituality (Part 2): Life with a Terminal Diagnosis

The Diagnosis

All actual life is encounter.” – Martin Buber

In Part One of this series I started to look at the meaning of spirituality and proposed ‘openness’ as one of its key psychological attributes. The ‘openness’ was described as an attitude which allows “an expansion of perception”, a stretching of ourselves “towards what lays beyond our present limitations”. 

In previewing this second installment, I mentioned sharing some reflections from the perspective of having been given a terminal diagnosis. The diagnosis itself can sound pretty scary – Glioblastoma (GBM) is the highest grade brain tumor. This morning I was watching a documentary program where renowned neurosurgeon Dr. Charles Teo described it as “the worst and deadliest of cancers”. The average life expectancy after diagnosis is 12 -14 months. Treatment consists of radiation, chemo and surgeries for the recurrent tumors. To describe what doctors call ‘the progression’ of the disease would hardly make for more pleasant reading.   

But the openness mentioned in Part 1 has served me well, especially in terms of facing the most challenging aspects of a GBM diagnosis. This week my oncologist told me that 90 percent of patients with GBM pass away within 18 months of diagnosis. The fact that I am still alive after two years, and still relatively healthy and functional, is something I attribute to many factors, including the goodwill (and yes, prayers) of many people. But one of those ‘factors’ would be the beneficial effects to mind and body of this open aspect of spirituality.

Openness to All Possibilities

“Freedom is an openness to everything…the whole of concrete life with all its adventures, it’s absurdities and it’s incomprehensibilities.” – Karl Rahner

My basic approach involves keeping two thoughts in mind. On the one hand, I can respect the medical perspective and advices of the doctors (which I’d suggest is kind of necessary when a tumor is removed and then recurs to it’s golf ball-like size in a matter of weeks!). On the other hand, I’ve felt no contradiction in maintaining an openness towards possibilities whereby extraordinary things can happen. Things much bigger (and better!) than what can be processed within the medical model of thinking.    

And perhaps these extraordinary things happen more often when we are open. This kind of ‘openness’, however, is not just a matter of being open-minded (albeit a good place to start I’d suggest). It is rather something more receptive, more willing to trust that whatever happens in the future (in life or death) comes with these extraordinary possibilities. For me, the fact that I am doing so well at the two year survival mark is already the fulfillment of an extraordinary possibility. But I remain open to all possibilities. 

Being open to “all possibilities” means being open to both ‘desired’ and ‘undesired’ outcomes. Speaking for myself, dying definitely goes into the “undesired” category here! And dying anytime soon is something I would rate as ‘especially undesired’!  

Death is obviously not the sort of event that is adequately represented by a term as understated and bland as ‘undesired’. Undesired is a ‘category word’ here (putting all the unwanted things that happen in life into one category), and category words do tend to lack color. Category words are useful when we are trying to be ‘objective’ in an analysis, but they can hardly capture the actual ‘subjective’ experiences they refer to, such as the experience of directly facing one’s mortality. (I recall one patient in the cancer ward who was quite a ‘wordsmith’ in describing his condition ‘subjectively’, finding seemingly unending ways to link it four letter words).  

Openness to Extraordinary Possibilities

“The Universe contains genuine novelty and surprise and an elegant order which is not imposed but rather emerges as we trust the divine life within the chaos itself.” – Bruce Sanguin

When referring to “extraordinary possibilities” I do normally mean extraordinarily good things, (things that not only surpass, but go well beyond any ordinary expectations). But all kinds of undesired experiences seem to be a necessary part of the journey of life.  Heartbreaks and disappointments abound. And sometimes these mini and major tragedies set the horizon from which the extraordinary possibilities emerge.  

Some readers might think that I was ‘extraordinarily’ unlucky to get GBM cancer in the first place. For me that view is too small and disconnected from the context of my whole life (past, present and future). Regardless of how long I live, whether it is a long time or shorter than I hope for, I see it as important to be open to all things that can happen in a human life.  In other words, I can’t just be open to the things I want to happen.  

From a spiritual perspective, I think we have to consider this totality of a human life, and its meaning, before we dehumanize the diagnosis as sheer ‘bad luck’, as if it were some hapless kind of physiological misfortune. Even the label ‘terminal diagnosis’ has a dehumanizing sense of finality to it. But from a spiritual perspective, one kind of ‘terminus’ only prepares the ground for the next surprising development.  

There’s a plentitude of natural analogies for this point: seeds die before they sprout, leaves fall before they fertilize the soil, stars collapse and explode to release enormous amounts of energy, caterpillars undergo ‘metamorphosis’ to become butterflies. There are patterns here, veiled from our direct view, but patterns nonetheless. The apparent end-point or ‘terminus’ is the ‘staging area’ or where things are radically re-arranged. And nothing is lost except for form.  

Human life, too, provides many opportunities to accustom ourselves to the processes of loss and renewal. In the metaphorical language of the spiritual writers, a single lifetime generally contains many ‘deaths’ and ‘resurrections’. These writers are not just referring here to the changes that take place by themselves (say, from the ‘loss’ of childhood to the ‘gains’ of mature adulthood). They are also referring to the whole breadth of human experiences, and the deeper transformative processes whereby parts of ourselves necessarily disappear for the new and better dimensions to emerge.    

So when it comes to thinking about death (or the ‘medical forecast’ of a terminal illness) I’m inclined to mostly consider it in terms of the connections between living and dying. Death is such a universal event (affecting all of us) that we cannot logically separate it from how we think about life. And although I try to make some of these points logically, I’m really referring to an attitude here, an attitude that accepts death as a part of life, but then strikes out for the higher ground.  

The ‘higher ground’ is where we get some kind of view of life being much more than any of the things which can bother us (including the very natural fear of death). It is where life is experienced as ultimately being too strong, ‘too spirited’ for anything to permanently extinguish it. By all accounts, the pathway to the higher ground has a lot of twists and turns. And I’d suggest that we don’t get there (nor stay very long there) without some supportive loving relationships with other people. 

  

The Challenges of an Authentic Spirituality

“What we need is a cup of understanding, a barrel of love and an ocean of patience” – Francis de Sales

Spirituality, however, isn’t always about how well we can function on some kind of ‘higher plane.’ One of the paradoxes of spirituality is that sometimes “‘down is up’, and so people who have somehow fallen are often the ones who have the most extraordinary spiritual experiences. But then authentic spirituality also isn’t dependent on having such amazing experiences. The most basic and ordinary experience of everyday life is where we make the all-important contributions that come from the heart.

Because we don’t necessarily always feel spiritual things, sometimes spiritual practices can seem quite ‘flat’. And at these times openness (or any kind of spiritual practice) can seem like a waste of time. But whatever the experience, genuine spiritual practices are never a waste of time. Spiritual practice is always time well spent if we consider it as the time we give in attending to the core matters of our existence.  

It is this attention which allows the spiritual life to be so richly rewarding. But if there is to be any realistic expression of what ‘openness’ actually means then it has to include some openness to the undesired experiences of life. All the greatest sages have taught that the spiritual pathway can be a radical and transformative process, too expansive to be contained by the comforts we normally seek for our satisfaction. 

Of course the suggestion that spirituality is “an openness to everything” does not mean that we don’t need to have boundaries of any sort. Openness is not a matter of just tolerating anything that comes our way. But openness does not insist on controlling things we can’t control. Openness is ultimately a matter of freedom, we are more free when we accept that life can be everything we have experienced it to be, and also much more. (In my case, that experience includes a terminal diagnosis, but with the emphasis on “so much more”).  

In describing how there’s more to life than meets the eye, Richard Rohr writes: 

Most people confuse their life situation with their actual life, which is the underlying flow beneath the everyday events.” 

I’m inclined to think of deep spirituality as some kind of on-going, open-ended attempt to attune oneself to that “flow”. The flow (or whatever we prefer to call it) can also be understood as an energy or divinity which is not just ‘beneath’ but also ‘within’ and ‘beyond’’ ourselves and the everyday events of our lives. It’s all part of the essential mystery of life.

In Part 3 (coming soon) of ‘Aspects of Spirituality’ the focus moves to what I call our “life orientation”. I think this is a crucial aspect of spirituality and the basic psychology of our wellbeing.

 


GUEST WRITER’S BIO

Life with a Terminal DiagnosisDr Geoffrey Arnold is an experienced counsellor who has worked with people with anxiety and depression issues (including ‘at-risk’ of suicide), grief, and general adjustment to life’s challenges. He is also a marriage counsellor and educator. He has a multidisciplinary PHD in education, philosophy, psychology and theology that focused on the big topic of ‘wisdom’.

To me, Dr Arnold goes by the name of Dad, Dadsie, Daddy, or Daddo. He is my rock. The person who I’ve always been able to rely on. The person who has been my guiding light through every crisis, small or large, that I’ve ever experienced. He is the most caring and giving person I have ever met. The first person to help loved ones, and strangers, who are experiencing difficulty. The ultimate advocate for the underdog. He has saved more lives than he will ever know. He is my hero, in every sense of the word. I’m so happy to be able to share some of his knowledge with you on my blog.

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  • Ah! I love this. So eloquent and curious amidst what must be a strange time. I particularly love this: ‘I’m inclined to think of deep spirituality as some kind of on-going, open-ended attempt to attune oneself to that “flow”’. Thanks so much for sharing you experience, Geoff.

    • So ‘spot on’ Ceri, there is a strangeness to what I am experiencing, and the part about ‘the flow’ is actually the key to where the whole article was heading. I do appreciate your comment.