Disen-what?
As David Eagleman, an American writer and neuroscientist, once said: “There are three deaths. The first is when the body ceases to function. The second is when the body is consigned to the grave. The third is that moment, sometime in the future, when your name is spoken for the last time.” The simple truth that this quote conveys hit me like a punch to the gut when Abigail Johnston paraphrased it in the outstanding third episode of our podcast honoring her friend, Emily Garnett.
These days my ADD has gotten so bad that something has to be extraordinary to hold my attention for more than 10 minutes. This episode was sensational and kept me engrossed for over an hour. It got me thinking about how we grieve when an MBC friend dies. It turns our that what we experience is not all that unusual and has a name — disenfranchised grief. Some of you are probably saying right about now: “Disen-whaaat?” This was my reaction as well when Abigail referred to it on the podcast. The term defines the type of grief experienced when one has been denied the right to grieve. Has anyone denied me the right to grieve? In the metastatic community we meet and become fast friends simply on the basis of what we have in common, our disease. We come from different geographic locations and socio-economic backgrounds. Our ages are vastly different, so is our marital status. Some of us have children, many don’t. We meet in support groups or online and share the most intimate details about each other, but are rarely introduced to family members. In fact, our existence is often unknown to them. I believe that we make a choice to keep it that way and separate our normal life from the cancer life. So it is not surprising that substantial time may elapse before we hear about a friend’s passing and we may even feel like outsiders injecting ourselves into their family’s private grief.
There is another consideration that we don’t voice, and may not be consciously aware of, but nevertheless is true. I believe that when we meet each other, there is a part of us that realizes that our friendships may be fleeting and are destined to end prematurely. So to put it plainly, grief is already baked into our relationship. And yet our metastatic community, just as any other societal entity dictates rules of how we are expected to grieve for our MBC sisters. This has been a particularly difficult year for me. It started with Emily Garnett dying during the height of the COVID epidemic and culminated with the passing of one of my dearest friends, Tatiana or Tanya as I called her. She was a special person, young enough to be my daughter. In the two years that I knew Tanya, we became exceptionally close. Her disease had been indolent at first but spun out of control in early February. It had become painfully clear that she would probably not be here to celebrate her 39th birthday in December. My friend spent her last month in the hospital heavily sedated and not alert. Because of the restrictions on the number of visitors allowed in a hospital during coronavirus, my time by her bedside was limited. When the news came of Tanya’s passing I was ready for it. I had thought and my friends, who knew how inseparable we had been, expected that I would be devastated and distraught by her death. My friends were kind. They called, texted, sent me cards and flowers. Yet I felt like a fraud. I did not have the need to cry. I did not grieve, I simply moved on with my life. What is wrong with me? Am I so cold-hearted? I don’t think I am. Yes, I take mood altering antidepressants, so that may be part of it. Those of us who have been living with stage IV cancer for a long time, have seen so much death that it is hard not to become numb. It is self preservation. I love Tanya and will remember her for as long as I live. I will grieve, even if I don’t understand right now what form it will take. For now, I am ok with moving on. One thing I am sure of is that as long as I am here, she will not die the third death.
