This moving and thought provoking post is from Kirsten Kaae. She posted this on October 16, 2011. Her insights are profound and capture the realities of my daily work and my own life....
"The
Pink Ribbon Blues essay “
Every Silver Lining has a Cloud” touched my heart in many ways. I wholeheartedly agree that failure to acknowledge suffering from breast cancer disrespects and trivializes the plight of those who are dealing each day with its effects. Having worked as a hospice nurse for 23 years, I have seen the devastation cancer can cause to the mind, body, and spirit of those who are directly and indirectly affected. Yet, I have cared for many whom, when their cancer recurred, felt a profound sense of failure that they were somehow responsible that they, in the end, were unable to “beat”cancer.
Acknowledging
suffering and despair is somehow viewed in this society as a failure. Yet, suffering is part of life. The poet Khalil Gibran talks plainly about the connectedness of joy and sorrow: “The deeper that sorrow carves your being, the more joy you can contain.” He says about joy and sorrow, that “they are inseparable. Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed.” So it is with breast cancer. Amidst the celebration of life is the ever present threat of re-occurring cancer, and perhaps the inescapable reality that one’s cancer is terminal, a cloud that will never go away.
The Monster In the Closet
In my work, I call the cloud of impending mortality, “the monster in the closet.” Reminiscent of that time in childhood when we couldn’t sleep because of a sinister monster lurking in the dark, the monster in the closet of anyone who is living with cancer is, of course, the fear inherent in knowing that cancer, for some, will result in death. When we were children, someone opened the closet door wide and turned on the light. Like magic, the monster was gone! Opening the closet door of cancer and turning on the light will not make this particular threat go away. Facing it, however, can diminish its power.
The monster analogy helps people to think about fear of the unknown and consider what may be gained or lost when one chooses, or not, to open that door and really look inside.
Choosing to open the closet door of terminal illness to acknowledge what it means for one’s life and death is a difficult choice to make. This choice is not made any easier by the lack of support for such decisions in a culture that tends to think in terms of survivorship. But the decision to open the door and consider one’s mortality has important consequences.
First, it takes energy to ignore and suppress an unwanted reality. The power of positive thinking is seductive in its proven worth. However, unless the reality of the potential life-threatening nature of cancer is acknowledged, positive thinking comes with a price tag called self-doubt. What if my positive thinking does not work? What if my cancer comes back anyway? Would that mean that I somehow failed? Would it mean that I did not “think positively” enough? Of course not, but keeping the door closed brings such questions.
Second, sometimes we are lulled into thinking that if we look our dread in the face and consider the “what ifs?” that we somehow bring something bad upon ourselves. Something as mundane as taking the snow tires off of the car might lead someone to believe she was singlehandedly responsible for causing an unseasonable blizzard! In the say way, facing the possibility of dying from cancer could seem as though a person had the power to bring a recurrence upon themselves. As a result, many people are encouraged to lock their fears away with the hope that avoiding them will make them less likely. We live in a strangely superstitious world.
Choosing to face the monster in the closet does not mean abandoning hope, giving up positive thinking, or (somehow) jeopardizing the outcome of treatment. After working for more than two decades with people at the end of life, I have seen that thinking about mortality is not morbid. It is prudent and affirming for many. Facing fears, asking the “what if” questions, gathering information, then making decisions and plans leave people feeling energized, relieved, and at peace. Facing the fear also diminishes the power it wields in one’s life.
What Else Might Keep Us From Wanting to Face What’s Next?
It isn’t easy to make the decision to acknowledge that one’s future is uncertain. Intense anxiety about facing what’s next can be almost immobilizing. I know. I’ve been there even though my monster is not breast cancer. Many people have visions of living to a ripe old age. The reality is that many of us don’t, and anxiety is a natural response when acknowledging that one’s life may be shorter than originally thought. Facing this anxiety with gentleness and honesty makes the feeling temporary. Then, we can go on to do what we need to do.
Many of us also have loved ones who may be invested in suppressing the truth about our prognosis. This too creates anxiety. After all, facing the mortality of those we love also forces us to consider our own lives, and our grief. Working with families in palliative care, I’ve seen that family members will often take their cues from the person affected most profoundly by the disease, even if it takes them some time to let the idea settle. Most will support open dialogue and even have a sense of relief when it is okay to talk about the future, and share the myriad thoughts and feelings that have to that point been left unspoken. Some people, however, do meet serious resistance from family members. If this happens, we may then have to decide whose comfort level needs honoring the most, and then act accordingly.
Those who have children at home may be especially hesitant about opening the closet door. The desire to protect our children from any harm and distress can be overpoweringly strong. As parents and grandparents it is our job to shield our children from harm. We bandage the scraped knee and fix the broken bicycle, but we cannot shield children from grief and loss. Nor should we. Doing so, no matter how well intentioned, can cause children to feel isolated, overlooked, and excluded. We all deal better with what we know than with what we can only imagine. The imaginings of a child who senses something is wrong, but does not know exactly what it is, can be much scarier than any monster lurking in the closet. Children of all ages are remarkably wise and resilient and possess a degree of understanding far beyond their verbal capacity.
The Power of Facing What’s Next
I think often of one of my hospice families where an older woman was dying of liver failure. She lived with her husband, had family close by, and her two teen-aged granddaughters visited regularly. One day I asked her husband: “What have you told the kids?” He answered: “Nothing – we did not want them to get all upset.” My next question was: “Well, when DO you want them to get all upset?” Later that week we had a family meeting and the girls were encouraged to ask whatever questions they had. They had already sensed that their grandmother was dying, but they had not felt free to ask about it. Their main concerns were that she not suffer any pain or other distress, and they needed reassurance that their grandmother would know who they were even when she became unable to communicate. The two granddaughters started to spend more time with their grandmother, cooking meals, and chatting at her bedside. She had a peaceful death with all of her loved ones around her. Her son wrote to me and told me that seeing his daughters at his mother’s bedside as she died had, for him, been “one of life’s beautiful moments.”
For those who live with terminal illness, facing that truth about what that means is understandably frightening. Yet it is empowering to be honest with ourselves and with those we love, and to plan for the future, no matter what it might bring. It gives a measure of control and enables us to live more freely and fully when we no longer spend precious energy suppressing or shutting away the reality od the hand we’ve been dealt.
Taking charge of our destiny by acknowledging the monster in the closet and making plans for the “What ifs” of life can lighten our hearts, strengthen our step, enrich and empower our entire being. By doing so we will not only honor our own reality, but also the lives of those who have moved on before us."
www.kirstenkaae.com
