I had been talking with a friend via Skype when I realized he was right… again. I had mentioned to him that when I was working I would use the holiday week between Christmas and New Year’s to hunker down and read a novel, escaping the world and ignoring any intrusions. I would read nonstop, for a day or two, depending on the length of the book. I might even begin a second one if it was short. He asked why I would not still carry on that tradition. Good point, I later thought.
That night I pulled out a different kind of novel than what I used to read; When Air Becomes Breath by Paul Kalanithi is a memoir of a doctor who is diagnosed with cancer and dies. His wife Lucy writes the Epilogue. That is what I read that night, weeping at the sheer beauty and pain in her thoughts. Paul faced each stage of his illness with grace – not with bravado or a misguided faith that he would overcome or beat cancer but with an authenticity that allowed him to grieve the loss of the future he had planned and forge a new one, she wrote.
Many people have told me that I am facing my illness with grace and courage. I do not always believe it because I know my failings better than those who are on the outside looking in. However I cannot deny that I am given extraordinary grace and mercy. I had prayed for courage and I have received it time and again, but I also know my fears, my limits and my reality. I know when I am self-centred and this pains me. I hate not remembering things because of my fatigue and brain fog. I also am very aware that I do not want people to think I am unscathed by this disease. I want to be authentic, like Paul was, and to share my experience with people who want to know what it is truly like. As Brene Brown says, you have to earn the right to hear the story, but I do think it is so worth telling if people can bear witness to it.
I think that dying continues to happen behind closed doors and I am not sure that is the way it is meant to happen. I know it is uncomfortable to talk about death and dying and yet I find myself wanting to do more of that. This afternoon as I showed my new home to friends who had come to visit I explained some of my rationale for moving into this place. I do that with most visitors who come to see my lovely space. I talk about the view and how important it is for my soul. I say that I might put a hospital bed in the living room so that I can enjoy the view when I become sicker. I mention the second bedroom because I want people to know they can visit, but also that people can stay overnight if I do more treatment or when I need someone to finally care for me. I have had a couple of out of town friends say to let them know when that time comes and they will come and stay with me for one week. I also point out the en suite bathroom has a shower with easy access so that I can be bathed easily should it come to that.
Lucy writes about how Paul did not want to avert his eyes from death. She talks about our death-avoidant culture. Like me, Paul spent some time wrestling with the question of how to live a meaningful life. I think that one of the keys of dying well is to understand that each day I continue to choose to live with a purpose — I continue to engage in activities that bring joy, with people who I care about, for a God to whom all the glory goes. Lucy and Paul revealed that they knew one trick to managing a terminal illness is to be deeply in love – to be vulnerable, kind, generous, grateful. I think I would have liked Paul. He seemed to have the right attitude.
I think I do need to read more often. I find it good for my spirit and helpful to my brain. I will try to incorporate this small act of joy into my daily routine. This is one tiny task I can do for myself to bring happiness.
Do you have something you like to savour during a holiday time?
What trick about managing death would you have?
Dying you restored our life, Risen One. Do not let us avert our eyes from your death, nor ours. Grant us courage to face death with integrity and authenticity. Amen.