November 2011

Hope Won't Leave Us Alone

I've seen the flame of hope among the hopeless
And that was truly the biggest heartbreak of all
That was the straw that broke me open

Bruce Cockburn, singer/songwriter
The Last Night of the World

Hope won't stay away, just won't leave us alone. It's everywhere and in places where we might least expect it.

We have a palliative care program here at Arkansas Children's Hospital called PalCare. The PalCare team follows children who have "life-limiting conditions"-very serious medical conditions which will likely cause them to die before reaching adulthood. Most of the children met don't come close to adulthood as they die within a year or two after the PalCare team meets them. Having a child with such a serious medical condition is a nightmare scenario and one of the heavier places in the world that we imagine. In the past three years we asked parents of these children to complete a few selected surveys to help us better understand their needs and concerns. One survey asked about different facets of hope in life and we have seen something extraordinary. Despite the burdens of having a child with an expected shortened life, the overwhelming majority of parents reported a strong sense of hopefulness in life on their surveys. Even in such challenging circumstances, it is hard to get rid of hope.

Now hope is a tricky one and can be covert. In difficult times, hope is not always obvious-it can go undercover, sometimes deeply undercover. When we look at life on the surface, we may not see any evidence of hope and doubt that hope survives. It's the discontent that we can see on the surface that lets us know that hope is present somewhere beneath the layers. Discontent comes because we, or at least part of us, believe that things could or should be better. To believe so means that part of us believes that it is possible for things to be better, and when we believe that it is possible that life can be better, we do so because of the presence of hope: hope disguised as discontent. Writer and therapist David Seaburn describes hope as the belief that the story can change. Our life and our story are not going well and the narrative trajectory is discouraging, yet hope says that the ending of the story is not yet written and something good can happen still. We feel discontent-frustration, anger, depression-because we have not yet given up on the possibility of a better outcome. If hope had truly disappeared, then discontent would lose its source.

We sell hope short too often because we think that hope can only take one form. Many times this form is that of a miracle cure or the rescue from death and its consequences. If that number one thing on the list doesn't come to pass or becomes impossible, then the temptation is to believe that hope is lost. Perhaps we lose sight of hope, but hope generally doesn't leave us-hope is not into abandonment. Instead, hope is both a shape shifter and reproduction machine. Hope can and does change form to fit a new reality and hope divides into different forms that can coexist. In a life-threatening situation, we can hope for the miracle cure, more good time if a cure does not come, less suffering, and a peaceful death all at the same time. Hope refuses to be pinned down and locked in.

Sadly, there are situations in which hope can't be found within a person. In these cases, despair and pain have left no room for hope, even in its discontent disguise. It is here where the risk of suicide is present as there may be no tempting thought that life can be better and no space found for hope. Hope is not one to give up, however, and it will find temporary sanctuary in the hearts and minds of others who hold hope for the despairing one. Hope is patient and waits for the first opportunity to fill the space left as pain and despair begin to lessen. Until that time, we can hold hope for another. This may be one of the few things we have to offer in this dark place, but holding hope is a powerful thing and not to be taken lightly.

Despite all the loss, illness, trauma and death in the world, most persevere because most have a sense that the last word has not been spoken, the last action not taken, there is more life to live, and maybe... well "maybe" is a sign of hope, and thankfully, hope just won't leave us alone.

Greg Adams, Director
Center for Good Mourning

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Arkansas Children's Hospital - Center for Good Mourning
1 Children's Way, Slot 690 - Little Rock, AR 72202
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The Center for Good Mourning is supported by the generous support of the Arkansas Children's Hospital Auxiliary.