It’s tax season and I’m buried. No time for writing much of anything but expletives on the bathroom wall, so the next few posts will be an excerpt from the book. I’d love to know what you think!
Chapter 5: A View From The Edge
…I lay there on the hard ground in the cold and dark, peering up into a universe unimaginably deep, and watched as the stars shifted and flowed across the heavens. I was comforted—remembering I’m a part of something far bigger than just this ordinary, deeply beloved world. And it’s like that for me, again, in the dying world. Where I get the opportunity to peek out beyond this small life, if even just for a moment, at something that’s both so vast and yet impossibly, delightfully hidden most of the time–disguised by our bodies and abilities, memories and choices.
By everything we keep mistaking as ourselves.
With the advent of palliative and hospice care we’ve seen the first glimmers of change but, by and large, the modern, western medical paradigm still looks at dying as a failure and a waste. The metaphor I hear employed most frequently outside of hospice, by medical professionals, media, friends and neighbors, is that death is the enemy and all of us must wage a war against it. Either individually within our own, dear body or as a group using the big guns of scientific advancement and policy change. The metaphor of war is a powerful one, invaluable for generating the will necessary to marshal our resources for a single minded, all out attempt to get better–to survive and thrive as an individual or a society.
But what many don’t realize is that the cost of a martial metaphor is a high one. In a war whose sole aim is to preserve life, those who perish anyway die as casualties and losers.
It was always difficult to watch—the myriad ways this sense of failure manifested in the people I helped care for. Some felt bewildered and abandoned by a system that only seemed interested if there was still a possibility of cure. Others, that dying was their own fault and a punishment of some kind—because they didn’t get a second opinion, have more insurance, take better care of themselves, screen often enough or for the right disease. Some felt unlucky because they didn’t respond to the drugs or treatment the way they were supposed to. Others felt guilty because they’d just grown too exhausted and frail to fight anymore.
It seemed more than a little strange to me. Dying is already such hard work. Why in the world would we adopt a way of looking at it that actually increases the suffering involved? Perhaps it’s the natural outcome of our separating dying from life, of deeming the first as a terrible and monstrous thing and the second as our only sanctuary from it. Whatever the cause, an unintended outcome of focusing wholly on the protection and preservation of life—of regarding our natural transition into death as a sinister and horrible collapse—is that we’re unwittingly multiplying everything about dying we fear most.
It’s ironic. While the duration and quality of life have unquestionably improved over the last century, the quality of dying has been in a corresponding decline. All our efforts to delay and defeat death have unintentionally prolonged the process so that it now takes longer than ever. It involves new and novel layers of suffering caused by an ever-multiplying array of interventions, requires increasingly complex—sometimes unbearable–choices, and costs so much more that it frequently not only strips surviving loved ones of any remaining resources but leaves them crushed under a staggering burden of debt.
Over the years I noticed that frequently, especially in the case of a last minute referral, by the time a dying person and their loved ones washed downriver to us, we were among the first people they’d encountered who weren’t afraid of the mists gathering around them. Every good hospice team has a host of important jobs to do but one of the first is the simple act of trying to normalize what’s taking place, to convey in both words and demeanor that in fact, everything is still okay. We see and welcome whoever it is wholeheartedly because they are, regardless of what’s happening, still alive and vibrant and real. If there’s enough time, if they’ve been referred for end-of-life care early enough, that wild, spinning-out-of-control feeling people so often experience in the deteriorating pursuit of a cure has a chance to stabilize, allowing them to find firmer ground so they can return to the rest of their lives. It can make all the difference between someone fully embracing whatever time they have left or just gritting their teeth while sliding over the cliff.
I began to wonder if the transition from living to dying need be quite this traumatic. Could there be some way to weave the acceptance of dying still largely unique to hospice and end-of-life care into the branches of medicine which focus primarily on cure? I started casting about in my mind for a bigger metaphor than that of war I could employ, one that would contain both my longing and reverence for life as well as a deeper wisdom and regard for death.
Something that would not only arouse and inspire me to live but also reassure and cradle me when I die.
* * *
In the fall of 2001, after years of navigating the ups and downs of a deep depression, I decided to try a new and novel treatment option. I was nearly paralyzed again—all the diverse and multiplying anxieties that had flourished in me over time eventually consolidating into a single, more efficient terror of just leaving the house—and one day it occurred to me that I was at a threshold. I was either going to have to take some drastic, even reckless action to counter the trend or else surrender to life as a shut-in.
So the day my husband suggested that we hike into the mountains separately for a spiritual retreat, to spend three days and three nights alone with God at 9,000 feet in autumn during bow-hunting season without flashlight, fire, or food, something desperate leaped up inside me shrieking YEEEES! Cal had been doing this kind of thing for years, had invited me to join him every time he’d gone in the past, but somehow it never held much allure for me. So it took him off guard at first when I agreed–he thought I was just messing with him. But once he realized I was serious he became so excited that later, when I came to my senses, I didn’t have the heart to back out.
To be honest though, deep down I didn’t want to back out. I’d reached the point where the constant, chronic fear I was living with finally seemed worse than anything that could conceivably happen. It no longer sounded as bad to me; freezing to death, being impaled on a stray arrow, mauled by a drought-starved bear, trampled by a rutting, bull elk, falling off a cliff, going into hypoglycemic shock from lack of food, burning alive in a forest fire, being struck by lightning, buried in a snowstorm, or captured and toyed with in unspeakable ways by some caricature of a deep-woods crazy. Nothing I imagined anymore could possibly be worse than spending the rest of my life locked in the bedroom cowering under a blanket. It had become unbearable, losing access to everything I loved drip by drip, the slow suffocation of walls closing in. The time had come to summon all my fears to sit down in a circle with me–time to either break the back of the depression or die trying–and frankly, I didn’t care anymore which one.
It can be both a devastating and invigorating place to reach, the feeling there’s no longer anything left to lose.
Next week: Chapter 5 Part II
copyright 2010 Dia Osborn