How do we cope in the face of uncertainty after remission or a terminal cancer diagnosis?
When the late journalist and broadcaster Clive James knew he was dying, he started saying good-bye – for a number of years. He lived on for a lot longer than first expected. In his poem, ‘Sentenced to Life‘, he speaks of how his experience of the advanced stage of terminal leukemia and emphysema opened his eyes, mind and heart to the life he had led, the life he had now and the ending ahead.
How do we deal with terminal or life-shortening illness? What do we do, if it is us, a loved one or someone we know?
There is no off-the-shelf answer; there is no simple solution. It is a journey we may find ourselves on unexpectedly and unprepared, or we may already be on the way, knowingly or unknowingly.
Clive James took stock of the choices he made and talked of sadness, grief, guilt and love. He talked of memories and a newly found capacity to see and appreciate life and nature around him, which he may not have noticed in the past. Despite the decaying body (‘lungs of dust’), his brain had not been ‘dulled’. His mind was alive and ‘bask(ing) in the light I never left behind’.
If we are given the diagnosis of an untreatable, terminal or life-shortening disease, then our way of coping may be complex and it may change over time; rarely is it linear.
We may recoil in fear and helplessness; we may deny the inevitable and continue with our life as if nothing has happened; we may feel physical and emotional numbness – an armour to protect us from the traumatic pain; we may feel angry and outraged over the unfairness of it all; we may feel guilty and bad for life choices which may have contributed to the illness; most of all we may feel extremely bereft and forlorn for the loss of life they way we know it, and for the hopes and ambitions we had for our future.
If we only live the life we have left from the perspective of what has and what could have been, then chances are, what is left may feel like being on death row without the prison walls. In that state of mind every experience we have will be filtered through the lens of loss of control and loss of choices.
Everything is covered by a dark and thick layer of outrage, fear and grief over the utter uncertainty we find ourselves in. Every check up, every medical consultation, every single day, every look in the mirror, for some it is every visit to the bathroom, everything we took for granted has lost its carefreeness and innocence. Every day, minute or hour might be all that stands between life and death. And this feeling does not reduce, if we are lucky enough to outlive a time-limited diagnosis.
Like Clive James we may take stock and not like what we see: about the choices we have made, the way we have lived our life, and the way we have treated and perhaps hurt loved ones. We may realize that our values, ethics and even friends are of little help now.
We may find (and may be lucky in that respect), that like Clive James, not only has the decaying illness stopped outside the gates of our mind, but we have also retained the ability and freedom of choice to do as we please with the vast landscape of our mind, and by association, our heart.
We have the right and capacity to think and feel soul-destroying thoughts and banish all hope from our mind and heart. We can suffer in silence or scream with outrage at our loved ones. We can feel overwhelmed by pain and hopelessness. We can resolutely refuse all participation in our destiny and improvement in our quality of life.
Yet we can also allow moments where we may add purpose to the suffering, give it meaning and we may even find something of use to pass on to others (friends, children, family, strangers), who may already be or soon find themselves in a similar predicament of being sentenced to watching their lives coming to an end.
A sad man, sorrier than he can say.
But surely not so guilty he should die
Each day from knowing that his race is run:
Yet I, despite my guilt, despite my grief,
Watch the Pacific sunset, heaven sent,
In glowing colours and in sharp relief,
Painting the white clouds when the day is spent,
As if it were my will and testament –
As if my first impressions were my last,
And time had only made them more defined,
Now I am weak. The sky is overcast
Here in the English autumn, but my mind
Basks in the light I never left behind.
(Based on an article first published by Huffington Post)
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