Wrestling with Mortality
Mary Beth is a curious person. The discovery after many years of medical uncertainty that she does in fact suffer from a variant of ALS hardly answered her questions. In fact, it became the occasion for even deeper exploration. This was not how she imagined her life would unfold as she cared for her young son Nico while producing films from her home base in Los Angeles as a visual anthropologist. She’d traveled the world, always exploring, always asking questions. Her’s has been a wonderful life of adventure, a life filled with friends and creative opportunities. But now she confronts a fundamental question about life. What is she to make of this latest chapter? What does coming to terms with this debilitating disease mean for her?
The phrase “wrestling with mortality” came very early in my conversation with Mary Beth She’d known of the Living/Dying Project for some time and contacted us over a year ago when it remained unclear what exactly was contributing to her unrelenting physical challenges. She’d gone through two surgeries of her spine and a bone marrow transplant, but neither the pain she’d experienced nor the weakness that seemed to envelope her were diminished. The first doctor who’d treated her after sh’d twisted her ankle and fallen on the trail suggested the problem might stem from ALS. But other doctors disagreed and multiple attempts were made to address the problem with her ankle, and then her fatigue.
Eventually, her fatigue made it impossible for her to continue the life she’d tried to maintain in Los Angeles and she moved with her young son to the home of a dear friend she’d known since the second grade. It was in that home where I met her in my role as Intake Coordinator for the Project. She’d worked with a new doctor earlier this year who confirmed the diagnosis of a variant of ALS that involves growing debility of her lower extremities but allows her to continue to speak. At the time the doctor suggested Mary Beth might have only months to live but later tests of her lung capacity indicated this journey will be a longer one, perhaps as much as a year or more.
I brought to our meeting the two year journey I’d shared with a man who also confronted ALS. I wrote about my journey with Denlow in three annual newsletters. I understand just enough of this territory that I can listen with an attentive ear and offer support in the face of this unrelenting disease. Of course, Mary Beth is immersed in her own journey, measuring her capacity and willingness to meet the challenges that lie ahead. What she learns about others who’ve confronted this disease will not answer all the questions she encounters.
The one given is her love for her son who sleeps in the same room where her hospital bed sits. Artifacts of childhood are scattered around the room and mounted on the walls. This is at once a boy’s bedroom and a sanctuary in which the deepest questions about living and dying are examined.
When I suggested to Mary Beth that I’d be interested in writing about her journey, the part of her that has for so long been committed to the creative process was intrigued and we had a conversation about how we might collaborate to tell a story that would both speak to readers of our newsletter and offer some insights that might prove useful for her son. She brought out her digital recorder and we began, despite her natural reticence about being the focus of attention herself. She is more comfortable asking questions than answering them and much prefers being behind the camera instead of in the limelight.
In these early months of getting to know one another it has become clear that first and foremost on Mary Beth’s mind is how her illness and death will impact her son. It saddens her that she will not be present in his life to offer guidance as he grows up. The question is how best to prepare him for what lies ahead as well as how best to provide for him when she is not longer able to offer guidance in person. But she is also concerned how the physical deterioration associated with this disease will affect Nico. There are no easy answers here.
It was many months into our work when Nico asked his mother forthright questions about her illness and her death. The conversation was very matter of fact. Nico was comforted when Mary Beth responded to his question about where she would be buried. She offered the possibility she might be buried in nearby Olema. Some months before she and I had visited a small cemetery adjacent to Highway 1, nestled against adjacent hills. She appreciated the informality of the place, the simplicity.
As Mary Beth approaches the time when she will need additional care her questions made me think of Denlow’s wife Melissa who had handled all the logistics of his care. I asked Mary Beth whether she would wish to talk with Melissa and when she said yes, I contacted her. Melissa agreed. That will surely be a fruitful and possible emotion laden conversation.