“Be courageous enough to remain alongside families ‘into that place of unknowing'”. – Words spoken by Sister Frances Dominica this week during her opening address to the Inaugural International Children’s Palliative Care Network Conference in Mumbai, India, sharing her story of opening the first children’s hospice, Helen House, in Oxford in the UK. I wonder how many of us feel we have this courage in our daily caring for patients with life limiting and threatening illness.
How often each day do we feel able to walk alongside families into the ‘place of unknowing’? Do we know when it arises? Can we recognise when we are being present to that moment that demands we remain alongside families we care for into that place of unknowing, often a place of fear, uncertainty, pain, suffering, and distress. Mindfulness helps us turn toward each moment, no matter the difficulty, and stay present for ourselves and for our patients and their families, and their very particular needs that only arise when we make space for the unknown; the unknowing of this moment as it unfolds.
Courage seems to be the theme today. The theme of what is demanded of us when we dare to be present for whatever arises in our daily lives of being present to ourselves as well as to the families we serve. Not only spoken to by Sister Dominica in her opening address, but also raised in discussion of an upcoming talk I am being asked to give and how being mindful is not about creating a wonderfully rosy life, but is about engaging with the life we already find ourselves living with courage and conviction. Cultivating the capacity to be present with the– at times extremes of– difficulty and not turn away from the suffering and distress that may be present. This takes courage indeed.
If you have been following these weekly articles the past three weeks and practising being with breathing, eating, attending to a daily routine task, and engaging with the body scan with curiosity and kindness and patience, you may have started to notice moments opening up that have felt unburdened by constant thought or difficulty, but just were present– even at times in the midst of difficulty itself. That once we start paying attention to the small unfolding moments and allowing them to be just as they are, there are perhaps many more moments of wonder that we may have otherwise missed.
One evening a couple of years ago I was called out by a young family, new to me, in distress, who having returned home precipitously from a brief holiday as their child’s pain had increased dramatically, could not coax him out of the car once home and back inside the house, who refused to have anyone else come, and so they patiently waited until I arrived to render the hoped-for miracle. Distressing it was for all involved, a fearful pain-ridden child huddled in the back of the car, anxious adults all around, a moment of anxious unknowing for all of us.
Climbing carefully into the back seat of the car, I surrendered to that place of unknowing, gently inquiring, reassuring, problem solving, medicating, waiting for effect, and during that time even sharing some silly laughter at the expense of all of us crowded in and around the back seat of the car.
We were preparing for the moment of choice, the moment of action, of difficulty we all knew would come. And in the moments of staying with the unknowing, with the difficulty, we too could be open to the brief moments of joy, moments that might have been easily missed, the glimpses of laughter that made the unbearable moments to come bearable, able to be held and turned toward, and then let go of once it had passed. Moments of courage to remain alongside the unknowing and be present for what was needed.