Erasing the Lines
“When I was dying.”
“While I am dying.”
“The next time I will be dying.”
These are phrases I say quite often. Indeed, this is the only way I refer to my first death journey seventeen years ago, the two other death journeys I have experienced since that one, and those I have not yet encountered. And every time I use such phrases I see looks of confusion on the faces of those around me. They may be wondering, “How could she have been dying and be here now?” Perhaps they would prefer for me to describe these times in my life with the phrase, “When I almost died.”
To be dying for so long does not seem to make sense to the contemporary Western mind; indeed, to “be dying” in our vernacular refers most often to the final moments, perhaps days, of a person’s life; and it almost always ends the same way – with a death.
My “being dying” is taking much longer than days or moments, and it has not yet ended with my death – although it certainly will someday. And I use phrases such as “When I was dying” with great discernment and intent. Every time I say them, write them, or think them, I am reminded of the divisions that have been erased for me through my journey with this condition. There are no longer strict separations between:
Ill and well
Life and death
Heaven and Hell
The one being cared for and the one doing the caring
Patient and physician
Me and you
One of the greatest beauties about terminal illness – and one of its largest challenges – is that it has the capacity to remove many of the boundaries we arbitrarily create in order to feel safe. If we allow it to, our death (whether it appears to be arriving tomorrow or decades from now) can become a portal through which we become able to eliminate these divisions.
In a culture that often reflects to me dualities, that presents information (particularly, in my experience, medical information) in black and white terms, encountering a terminal illness can confound us. During a time when boundaries between opposites become obliterated, the world around us continues to reflect those boundaries.
Ever since the first time I was dying, my path has been one of learning how to live and die consciously; and I have discovered that a foundation in contemplative practices is absolutely essential to this process. All contemplative paths invite us to practice for our death throughout our lives. Using my own experience, as well as those of the people I serve, this blog series explores the ways contemplative practices can benefit medical professionals, caregivers, loved ones, and those of us who are dying.
Because, you see, each of us is dying. People with terminal illness may be more acutely aware that they are dying; however every one of us is dying in some manner right this moment – physically and metaphorically.
Many of us just do not know that we are dying. And most of us do not know how to die or even why we might want to learn how to die.
How Do I Do This?
It was a seemingly endless summer the year that I met death the first time. Any stay-at-home parent with a young child has known the unique combination of lengthy days spent repeatedly feeding, holding, and changing that child and the feeling of time speeding by as clothes are outgrown overnight and new things are experienced at lightning speed. Yes, the growing up period, the learning to live period, can make time seem to stand still. So can the slowing down period, the learning to die period. And my small family was experiencing both that year.
During the summer of 2000, I was dying – not dying some eventual day, in the way that each living being always is; my physical body was in the process of dying. Initially diagnosed with Pulmonary Veno-Occlusive Disease, secondary to Fibrosing Mediastinitis, I found myself in a hospital bed in Rochester, Minnesota’s Mayo Clinic. My heart and lungs were, quite simply, very quickly losing their functionality as the entire middle of my torso was becoming calcified. My physicians back home had exhausted their options for my care; not knowing what to do with me, they sent me to Mayo in hopes of a miracle.
It was not only my physicians at home who did not know what to do with me during that time. I certainly did not know what to do with me. I spent hours sitting on my couch, nursing my one-year-old son and wondering what would be, wondering just how in the world I could manage this process of dying.
I had no teachers, no gurus to help guide me through this new realm in which I found myself. My experiences with death had been minimal and all very similar: A childhood friend who died one night from meningitis after playing with my brother and me all day. A high school superstar who fell asleep at the wheel of his car and left his peers in shock and confusion. My beloved grandfather, who kept his illness a secret so that no one in our family would feel the need to care for him during his final days. And, most recently, an uncle-in-law whose heart attack at a surprisingly young age devastated our entire extended family.
Each of these people had left my life quickly. Their deaths did not feel at all similar to the process I found myself in that year. From my vantage point, they were here, fully alive and filled with life, one moment, and then they were gone. They were no dying; they were merely alive one moment and dead the next. I did not watch as their bodies deteriorated. I did not witness them releasing attachments to these beautiful lives they had created.
Ever since childhood, I had been drawn to cemeteries, spending hours studying tombstones in hopes that I would somehow understand the dying process and feeling some subtle yet undeniable pull toward the topic of death. Then, as an archaeologist, I had excavated grave sites, unearthing treasured objects people in prehistoric Greece had placed in loved ones’ tombs and attempting to reconstruct religious rituals related to life and death. And during my years spent in academia, teaching Art History and Archaeology, the subject of death was considered regularly in both my classes and my writings. After engaging in countless discussions of death within various cultural contexts, I found myself with little information that actually was useful to my experience of facing my own dying process.
The only guidance I had received related to navigating terminal illness had come from the world of entertainment and the media. Television programs dramatized the dying process. Movies portrayed loving, peaceful deathbed good-byes. Novels detailed dramatic family reunions just before the moment of death. And countless news stories revealed intimate details concerning the deaths of people I would never know.
But how was I actually to do this? How to leave behind everything I had known? How to say goodbye to my son, who would never remember me? How to leave my husband alone to raise him? How to release this body, this mind, this being – this life? And the most confounding question of all, the one that seems to trip up our incessantly active minds no matter what angle we approach it from: how to use this me to come to some understanding of and acceptance of the end of this me?
Information Does Not Change Us; Practice Changes Us
My entire life had been spent consciously walking a spiritual path. And each portion of that path, each separate tradition I had encountered, had something to say about death – often immense amounts to say about death. But what I discovered is that they had not taught me much about death at all.
I was raised within the Christian tradition, at the center of which is a death narrative. This tradition had instructed me that I must “lose my life to save it” and continually guided me back to a path or surrender; yet it never actually showed me how to walk this path. In fact, sages from all times and every portion of the globe have advised us to practice for death. Just as Jesus taught us to “give up our lives to save them”, Mohammed said we must “die before we die”. What do these things mean? Why would we want to practice for our own deaths? Medieval Christian monks would whisper in one another’s ears, “Remember: you will die”. And contemporary Buddhist practitioners spend hours on their meditation cushions experiencing death in their healthy bodies. So how can we do the same thing; how can we practice dying?
I have met countless people who have studied death and examined death and read and written a great deal about death but who seem to have a paucity of wisdom about death. They may have watched others die, perhaps even helped others to die; yet their experience with death remains in their heads, shrouded in information and thoughts and words. They have not actually pulled any of that information or those experiences throughout their being by taking themselves personally into the realm of death. Rather, they stay on the surface, trying to describe death, loss, and surrender from the outside.
In contrast, I have met many people who have not read one book about death and dying, who have not been at the bedside as beloveds have taken final breaths. Yet when their time to “be dying” arrives, they seem somehow to know how to do it, to know how to surrender their lives. Each of these has encountered opportunities to practice for their eventual deaths, and they have taken those opportunities.
You see, it is practice that changes us, not information. Reading more, discussing more, gathering more data do not cause transformation. Only practice has the power to transform us, to transform both the way we are dying and the way we are living, which actually are the same “way”.
In this blog series, I will be exploring several practices that form the foundation of living and dying for me. I have culled them together over the past seventeen years, studying them, witnessing them, and most importantly implementing them in my own life.
I am honored to be participating in Naropa University’s Conference “Compassionate Approaches to Aging and Dying: Transforming the Paradigm of Care”:
For me, creating and extending compassion with aging and dying begins with my learning to be dying and extends outward to transform how we care for one another individually and collectively.
Please join me here to learn more about my work with “How Contemplative Practices Support Dying Consciously,” where I will share some Views from My Deathbeds.
Therese Croteau - November 7, 2017 at 1:20 am
My friend died two weeks ago. She recovered twice from cancer, but had enough chemo and radiation. A week before she died she asked me to help her to the table. She said, “I don’t understand what is going on.” I wasn’t clear what was going on for her and I guess I was afraid to ask so I said the only thing I’d heard about following the light. Should I have asked?
Amy Agape - November 7, 2017 at 5:30 am
Therese, I’m so sorry your friend died. It’s very challenging to lose people we love, and it is very challenging to watch them endure terminal illness. I trust that you said what she needed to hear. I think “Following the light” is always good guidance, whether we understand that light in terms of the afterlife or the light that is readily available here in terms of love and friendship. Knowing that you were there with her provided great comfort, I am sure. I’m sending you blessings as you grieve.
Craig Bergland - November 14, 2017 at 6:45 pm
I love your statement that “information does not change us: practice changes us.” This is so true, and so needed in an overly intellectual culture that prefers to read more and think more rather than feel more.
Amy Agape - November 14, 2017 at 7:02 pm
Yes, Craig! That is exactly my experience. Hopefully, we can change that. Thank you for reading and replying.