My blog posts on The Riddle of Hope hint at the complexity of hope. To address hope and the desire for certainty, let's explore further the story of Esther and Dan Levy, parents who gave up hope of their son's recovery (When Do You Give Up on Treating a Child).
We generally perceive hope as a positive, life-enhancing feeling. The Levy's story points out the costs of having hope. Their hope that a bone marrow transplant would save Andrew’s life cost the whole family months of nightmarish pain and loss in every sphere--physical, emotional, psychological, social, financial and spiritual.
They enjoyed a great reward of hope that the transplant would save his life: remission. Then they paid the ultimate price of having nurtured that hope: dashed hope due to recurrence.
Everything about the parents’ subsequent decision to stop treatment was agonizing, except one: The sense of certainty of what lie ahead: Certainty was comforting.
When the boy inexplicably showed glimmers of recovery, other people celebrated them as miracles. Esther felt angry at the “evil tricks,” lamenting, “’Are we being spared nothing?” In an emotional outburst later, she said, “’I needed not to have hope in order to function.’”
Hope can be burdensome. For hope to help us get good care and live as fully as possible, we need to acknowledge the many costs, one of which is living with the inescapable uncertainty. We need to find ways to accept the uncertainty and, if possible, embrace it.