This Is The One About Death

I suspect that I think about death more than most people do. I have aging parents facing reality of how much time they have left in a way most of us don't think about. I have clients that come to me to process the death of loved ones or talk about their own feelings around wanting to end their lives. I have known, do know, many ill people some of whom do not have a terminal diagnosis but who nonetheless are relating to their mortality in a different kind of way. I wouldn't say that I have personally experienced death more than most, though, at least by my age. I've lost grandparents and pets and some peripheral friends but I've known many for whom death seems a constant companion. But like other things I talk about at work; the taboo subjects that people struggle to address like sex and money and bodies and feelings, I'm comfortable talking about death.

I have a client right now that is dying. I've known her for over a decade and her story is the most tragic I have ever heard in nearly 20 years of practice. And now, after a lifetime of inexplicable and incomprehensible trauma, she is dying. She just turned 40. This client, like other with cancer, has an enormous team of people working with her. Not just her cancer team but teams that have formed to try to address all kinds of other medical and psychological issues and treatment plans for her. But what I find absolutely and unforgivingly shocking is that no one is talking to her honestly about death. Her death is inevitable and will likely come this year. And yet there is no one on any of her teams that addresses it directly with her. They focus on possible next steps and options and ideas to address symptoms. They talk to her about potential benefits and side effects of medications that may briefly prolong her life. They talk about literally everything but the fact that she is going to die and about how and when that could happen and if she wants that to happen a certain way. How she feels about it. What she needs, who she can talk to. I have become the only person she feels safe talking to about it. And she was very afraid to talk about it with me when the thoughts went to not wanting to live anymore because of her fear that I would have to report her. As counselors we are legally required to do so if a client discloses plans or intent to harm themselves. And while I understand that, who the hell are people supposed to talk to honestly about this if not their therapist? She took a risk talking to me about all of these things because I am the only one she knows won't judge her, won't try to convince her that she has to keep fighting or can't give up. The one who reminds her that her life and her body are her own and that she always has choices and that we can talk about her death whenever and however she needs to.

When my father was in the hospital with a heart attack and subsequent complications that brought him very near to death's door I witnessed the same thing. At the times when things looked the worst, when it seemed most likely that we were reaching the end, still, no one brought it up. They carefully danced around the word and even the idea. It made me feel crazy. That what I was so obviously witnessing seemed to be actively ignored, avoided. I spoke to a friend at one point during these grueling weeks who is a nurse and she told me that they really aren't allowed to discuss it. That it's a liability and that doctors must do everything in their power to keep their patients alive regardless of their quality of life for a set period, maybe a month, before they are "off the hook" so to speak if they do die. But I couldn't and still can't get over the show that was orchestrated around acknowledging the possibility of death. I get that not everyone is qualified to have these conversations. But no one? No nurse, no social worker? Maybe the priest, whose services are offered would hold space for it but those who don't want a conversation guided by a spiritual practice that they don't believe in usually decline this offer.

When my mother's husband went in for brain surgery, a procedure that resulted ultimately in his death, the doctor never said to her at any point that he might not survive it. She had no chance to prepare things like documents or updated wills or the sharing of passwords. When my husband's brother and mother died 2 days apart and for unrelated reasons, he had no warning. We didn't know and still don't know why his seemingly perfectly healthy mother was suddenly gone. His brother who had cancer was not in hospice so while we knew remission was unlikely we had not known that one infection not immediately treated would likely lead to his death. My uncle died years ago, likely of cirrhosis. He knew he was dying. But his fear around death and refusal to talk about it meant he had no will and that his only child and only grandchild were left with nothing of the small fortune he had amassed.

All of this is to say that death is clearly a subject we culturally do not know how to talk about. Don't want to think about. And yet it something that waits for all of and touches all of us many time before our own time comes. Part of our discomfort with it is that it's natural for most of us to not want to think about painful things. Frightening things. Another part is that culturally, at least in America, we have no real relationship to death. It's a mystery and if we are lucky just an unpleasant consequence of growing old, something else we hate to think about. We have no real rituals or ceremonies, no honest celebrations or narratives that weave life and death into something more cohesive. Those with a strong religious affiliation may have an idea of what happens when we die but most of us feel pretty lost and confused about it. All we know is life. The absence of that, seems to many to be nothingness. A sharp drop of a steep cliff into darkness and unbeing. We fear being alone or being forgotten. We grieve the lack of meaning and understanding or of purpose and value or the loss of love.

About a year ago my husband a hosted a salon in our home with friends around the topic of death. One important message that came out of the conversation was the idea that how you live is how you die. Do you feel fulfilled and loved? Have you given love? Have you lived with fullness and openness and curiosity or with anger and resentment and fear? Are you grateful for what you were given and what you gave or are you trapped by the belief that it wasn't enough?

Grief around death, both our own and others, seems to open up a hole in us. A hole that slowly closes then expands open again when we experience another loss. Out of that hole come all of them; all the deaths and losses asking for our attention again. Grief is like an ocean. Sometimes you are so far under in the dark and the cold and your chest is so tight, your lungs so strained that you are sure you will drown. But then you see the reflected light of a sun and surface. You take big gasping breaths, drawing in heaps of air and maybe you tread water for a bit. Maybe you swim to shore. Maybe you get pulled back under.

One of the most disorienting this about grieving the loss of a loved one is the remembering. The remembering every morning and many times throughout the day that they are gone. Because you do forget in moments, at least when time or sleep has taken you somewhere else. But you always remember again and again and each time can feel like a new shock. The world around you still looks otherwise the same but you, you have stepped to the side of it somehow. You observe life, unaffected, continuing on. People going about their day as you struggle to make sense of it all. It's surprising who shows up for you and who doesn't. Having been through this several times before it still continues to surprise me how often it's those who you really thought were friends who disappear and those who weren't as close that show tremendous compassion, patience and generosity. Maybe it's about knowing what it's like, having experienced something similar themselves and having a better sense of what is needed. But no one waits for you forever and eventually people return to the comfort of their less death afflicted lives.

I don't know much about the way other countries and peoples relate to death but I do know that in the US most of us don't have a deep sense of our culture, traditions, or even beliefs and in this sense we are disconnected from a collective past or community. Things that tie us to our human identity and give us a framework for understanding life in a bigger and I guess more existential context. We live independently and are told that is the best way to be. The idealized American standard is "rugged individualism" which of course is BS because we are in fact forced to be dependent on those who control power in all its forms. It's also BS because not everyone has the same opportunities, resources or care. Yet we adhere to these norms because we don't understand that it doesn't have to be that way. That life can and should be enjoyed and appreciated (even in the suffering) from start to finish and that there are themes and stories and experiences that are universal to our time here. These are the core components of what help us lead an actualized and authentic life. One that is fully lived and can maybe leave us feeling more prepared to die.

Most of us have a lot to be grateful for. I get that it's hard to truly have perspective but it's likely that none of us were born in a war torn city falling asleep to the sound of bombs and the constant reality of death. We probably weren't trafficked and thinking about taking our own lives. Hopefully we never hid under a desk during a school shooting or witnessed the murder of someone by ice or police. But we know these stories. We see them and we hear them and they infiltrate and saturate our feeds and our news reports. Death is more visible to us than ever before. The sensational deaths and the quieter more normal ones. Yet still, we don't talk about it or try to soften the language around it if we must. Passed or departed or gone instead of died. What strange games we play around something we all experience.

I'm not here to offer a solution, just an observation. One that I hope we can all do a little better around. Because people need a lot of support when they have lost someone or when they are facing their own death and they shouldn't only be able to talk to their therapist about it, which many won't anyway because of the risk of liability. Because families are often fractured and complicated it also can't always be family members. Ideally, our entire cultural narrative and relationship to death would change. But I'm always overly ambitious in my dreams for the world and I know that won't happen. I think something we all can though do is to spend a little time with it. Get a little more comfortable with it. Talk about it a little more. There's a lot of power in things that remain hidden and once we bring them into the light and talk about them, they lose some of that power. Talking about death doesn't bring it any closer or make it happen any sooner for us. It just makes it all less isolating. Ultimately talking about death is talking about life. We don't have to know what to say about it or have any answers, we just have to show up to the conversation.