Don’t you know someday somebody will come and find you?
If you don’t know who you are any more, they will remind you
We don’t see you around here any more, it’s okay
But I will say your name out loud
And you will be home
The National, “So Far, So Fast”
This latest entry has been one that I’ve been struggling to complete. Every time I sit down, I write a bunch, but when I look back over what I’ve written it comes across as rambling.
The problem is the subject matter. It’s a tough one, and there are so many parts of it that need to be explored. Far more than can be accomplished in a single entry. So I will try this in “baby steps.”
At the beginning of this year, I wrote out a list of resolutions for what could be my last full year of life. When I decided to check in around the half-way point, I couldn’t help but notice that there was one resolution that I had been avoiding: Prepare for the end. That reflection, combined with some setbacks and uncertainties has finally convinced me that I need to start of this work.
In that spirit, this week’s upbeat reading material has been “What Does it Feel Like To Die?” by Jennie Dear. I’m currently about two-thirds finished.
What’s notable about the early chapters is the book’s focus on trajectories. It discusses not just the physical trajectories we experience as we transition from living to dying in the modern age of medicine, but also the psychological trajectories experienced.
On the physical front, one of the possible life/death trajectories is the “cancer trajectory.” This is described as a period of general health, followed by a steep decline lasting 5-6 months. Although a sudden unexpected event or infection might interject and speed things up a bit, this is the most likely physical trajectory that my illness will take.
Facing this, helps me to face some of the end of life decisions that I will have to make. When I hit this decline, where and how do I want to spend this time? Where and how do I want to die? The following chapters discuss the various options and it becomes clear to me that home hospice care is the best answer. While acknowledging that I will not be able to control everything about my death, that would be my preference.
My last image of my mother was in an ICU, on a breathing tube, and discussions of being disconnected from life support. I don’t want that to be my family’s last image of me. I don’t want that to be the last discussion about me. With home hospice care, I am more likely to die at home and without the intervention of life support to begin with; saving my husband from having to make a choice to remove me.
That doesn’t mean that I expect everything to be pretty. I know that it will still be ugly. But it won’t be within the confines of a stale hospital room where there is no room to move, to linger, to visit. Not just with me, but with my husband, who will need all of the support he can get during this time.
And then there are the psychological trajectories that are commonly experienced by those of us who have been hit with that infamous “existential slap.”
I would love to tell you I’ve handled the psychological aspects of all of this uniquely, but the truth is that my response has been quite typical in many ways. I had about a 3-month period of full existential dread, followed by a period of processing my way toward some kind of acceptance. Interwoven throughout both, I experienced a cycling through Elisabeth Kubler-Ross’s five stages of grief. Not in file and rank order, but with different emotions popping up randomly. Sometimes even within the same day. I suspect that this was prolonged a bit unfortunately, because of false hope and setbacks.
As I mentioned in some prior posts, I am trying out mental approaches to help me get closer to acceptance. And they seem to be working for now. But as I write that, I am still keenly aware of the significance of my latest tumor marker reading. I am trying to guess what the latest tea leaves hold for my future. The acceptance has to come from knowing that whatever the next set of numbers brings, it will not be my fault. And whatever it says will not be within my control. I hope for one outcome, but accept that the other may still happen. It’s the only way to make what time I have left here not so much of a struggle.
I wonder whether it’s working too well at the moment. There have been more deaths in my support groups. Some from people who were inspirations; who have been keeping the beast at bay for years. Is accepting the unchangeable causing me to lose a bit of my fight? Is that why it has been so difficult to get this blog entry out the door?
I’ve gleaned from the reading that for patients on the “cancer trajectory” there is often a temporary return to the sharp edge of the existential slap once that final period of rapid decline commences I’m expecting that. This means that I have to work ahead on end of life plans. Now, while I can, before the emotional and physical consequences of that final step go into full swing.
There is one more trajectory that I need to finalize. And that is the story of my life. Dear’s book addresses the concept of life stages, and delves into Erik Erikson’s 8 life stages, in which we pursue mastering different crisis (trust, autonomy, initiative, industry, identity, stagnation, etc.). The stagnation stage is usually present in one’s 40s, 50s and 60s. It’s the stage that I was grappling with when all of this hit. It’s the stage where you are tasked with “creating something to outlast your own life, such as working to change your community or mentoring younger people.” After that, there is only one stage left. That of “reflecting on your past.. (and) finding satisfaction with the life you’ve lived, and through that contentment, wisdom.”
This last stage apparently begins automatically once you learn that you have a fatal condition. And it’s my task to conquer that now. It begins with defining the story of my life. It ends with writing it’s conclusion. In literary terms, this is referred to as the denouement. As I’ve discussed in the past, my story has been defined as one of growth for quite some time now.
I wanted to be able to conquer these final challenges that were holding me back. I wanted to be a survivor and to share my story with others. But life, luck and cancer had other plans. So am I finished growing? Of course not. Death’s unwelcome entry at only the halfway point of my life has served as an accelerator. It has forced me to push past those final roadblocks much more quickly than they otherwise might have.
And that, my friends is how this story ends. What’s left is to write out the details. To write out the letters to my family. So that they may know who I was. So that they may know how much that I loved them, and that I didn’t want to leave. And so that I might be able to communicate what I want for them in their lives to come. Because it will be their stories- their purpose, their love, their values, their happiness, that will be the most important ones of all.