Reflecting on some of the times when being together mattered the most…
Through these last few months as Arlene’s cancer has taken everything from her one step at a time. Durning long nights on baby monitor duty to keep her safe, when she would get up 5 or 6 times a night to make a grueling 10 minute journey 15 feet to the bathroom. Shadowing every painful step she made with the walker because she had become a terrible fall risk. Never to make it in time, but to take the journey anyway. Being with her in the face of miserable agony, and her experience of loosing independence and dignity. Helping her change her soaked diaper while she cried on the toilet and told me I would be a good father because I was patient and calm.
When she was finally bed ridden, all the nights I stayed up with her so Mark could finally get some rest… Holding her so the aids could change her and make sure she was clean and dry. She was miserable, indignant and sometimes delirious… sometimes I could be with it. Sometimes I could hold her and her suffering as perfect. Sometimes loving her, god and the universe exactly as we were unfolding in those precious moments… and then we would laugh. We would laugh while we changed her diaper.
There are a hundred other stories of Arlene Bollt from these last many months, and a thousand from all the years before of how she has suffered. As I got closer to her I became present to a degree of emotional distress I did not know was possible. While being with my mother in her agony for months… really being with her… time and again laughter and tenderness would break through. The three of us laughed a lot through all this pain and cancer and diapers and drugs. We laughed, and it was like light through a window in a dark room… enough light to keep one precious flower in bloom.
Sitting next to Arlene in hospice right now. Just a few days ago the whole world changed. She’s not waking up or eating anymore. I didn’t see it coming. I wanted this, for her to stop suffering. Mark and I helped make it happen… I still did not see it coming. Suddenly in a flash (of horrible emptiness) I see how I could have loved Arlene better and more fully. I see how simple that would have been. I see how I could have reached out more and shared the light of my world. I thought I was open and loving. Only now that it’s breaking, do I see how much more heart I have to give. Death is permission to open completely and to love fully.
These last few months I have been closer to my Arlene and Mark than since we were kids. These months of suffering have been a gift. I would give anything to be chasing her around on her walker and changing her diapers again.
Recently Arlene taught me some of the most valuable lessons I have ever learned. I’m realizing that even our suffering is a gift… when we experience it together. Our suffering is wrapped around this miraculous gift of being.
I’m deeply grateful to all of you who have loved Arlene, who have known her, who have laughed with her, and cried with her. Thank you for being part of her life journey.
Love always, David