Three and a half years ago my partner, who worked as a physical therapist for Kaiser, received a catastrophic diagnosis of Multiple Myeloma, an incurable blood cancer. At that time I was already working at Kaiser part-time as an acute care chaplain and soon after I joined the Palliative Care team.
Our lives changed overnight and everything associated with her diagnosis and treatment took place in the building I worked in and across the street: Bone marrow biopsy, scans, lab tests, surgery, radiation, chemo, office visits. And there was chaos, fear, worry. Feeling alone in the big Kaiser system even though I worked here, difficult treatment decisions, the search for an oncologist that was a good match for us, grief, and anger.
Anger at how the diagnosis was given, with no guidance to prepare us for the shock. Anger at having our lives turned upside down.
I was angry all the time. I was desperately sad. And then I had to go back to work where every day my job was to sit with patients and families who faced their mortality, while we faced ours at home. I always had loved my work, but now I felt lost. Unmoored.
When my mom died five years ago I was in the middle of my chaplaincy residency. I learned there how to return to work while actively grieving. My supervisors EXPECTED me to NOT walk into hospital rooms and serve patients until I was ready. After my week of shiva, when I was ready, I walked into one room and stayed until I couldn’t any longer. When I left I cried and reflected with my supervisor how that was. The next day I took a deep breath and saw more patients. My supervisors expected me to listen to my grief and to pace myself. I learned how to let my grief guide me so I could be an even better chaplain and rabbi.
At first when I returned to work after Judith’s diagnosis I turned away from patients with Multiple Myeloma. I couldn’t bare seeing what might be coming down the road for us.
Over time, I came to understand and serve seriously ill patients in ways I hadn’t before. I was a provider, AND I was also the family member of a patient facing a life-threatening disease. I learned to sit with patients as I wished my providers would have sat with us. With presence, patience and kindness. My work gave me purpose, meaning, confidence, calm, and connection with patients and family members in new and even more rewarding ways than ever before. I learned how to pace myself, just like I had after my mother had died.
Four months after Judith’s diagnosis my father died on the two year anniversary of my mother’s death. I felt supported when my coworkers showed up to my father’s funeral. When I was surprised at my exhaustion or when I forgot things, my coworkers reminded me that I was grieving and to pace myself.
I feel supported by people who ask me how Judith is doing and they listen.
I wonder why more people who know what we are going through don’t ask me about how it is going. I especially felt that way during the weeks and months of Judith’s stem cell transplant at Stanford. I wonder if it is because we take such good care of our very ill and often dying patients and don’t have anything left for each other. Or maybe I look like I am “fine” and don’t need anything. I just don’t know. I often wonder, and worry, how it will be when Judith is in the hospital bed in my workplace, and I am the family member.
Thank God I eventually found the support of the outpatient Palliative Care program where I can talk about our journey and get help seeing the bigger picture. Resilience also comes through creative expression. Judith wrote and performed two excellent one woman shows about her experiences with her diagnosis and her transplant. They are funny and deeply moving. I have a blog where I write about my grief and insights. I share what I have learned with other medical providers, patients and families in a variety of venues. Creative expression is life saving for me.
I am not afraid of my grief. I am not afraid to cry with my patients or to sit with them in their pain. I have learned that their pain and stories are not mine.
My story is still unfolding.
*an adaption of this talk was given at a work meeting