It’s a Dying Shame – an essay

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Please Note: This essay is adapted from a journal post entitled Messy Snapshots – Reader Beware.

It’s a Dying Shame  A shout out to the less honored side of facing death – when more public grace and stoicism are shoved aside and the darker emotions take hold. What do we hide, and why? What do we lose?  What do I lose if I hide?

I heard a story about the Buddha being approached for counsel on the best way to handle news of one’s own approaching death. Buddha, apparently, began to flail around in deep, loud, uncomfortable hysteria for several long minutes. Observers had no idea what was happening. Just as suddenly Buddha sat back up, done with the outburst, and said, “There is no right way to die.”

This story gives me solace.

People love to say to the terminally ill, “You are so stoic, so graceful. I could never handle this so well.”  Perhaps not, but the greater truth is you may have no idea how well or badly we, the dying, do handle it.

People I am in casual contact with believe I comport myself well. Even though I lack the energy for hysteria or the time for despair, I certainly feel both.  When in treatment with chemotherapy I have the solidity of bodily discomfort to remind me there is an effort underway to keep me alive, and it might just work – in other words, I have HOPE. And with hope my daily life can be oh-so-fine.

When I am not in treatment but need treatment, I sink, hour-by-hour, deeper into a very dark well. It’s the well I found myself in when diagnosed two-and-a-half years ago with metastasized cancer. There were times when I could see some glimpse of sky. But when the sky was obscured, the basic activity of breathing took all my energy.

A message arriving from the larger world – a photo, a mundane tidbit, cookies – allows me to find some sky, whether for thirty seconds or an entire day. That is the power of a tether to the world I fear leaving. That is the power of small acts of reaching out – not fearing to say the right thing, but instead opting to say something.

Since August 2011, when the rising numbers of my blood tests could only indicate recurrence, I have had episodes of complete darkness. The tests and the waiting that surrounds them wrings me out like a shirt hand rinsed more times than its weave can handle. I get my numbers monthly, interspersed with October, January, April and then August cat scans – all of which show my cancer on the move despite switching treatment approaches several times. I am running out of options. The weave on that beleaguered shirt seems unable to withstand another wash. You retire such a beloved shirt. But being retired from treatments only leads me to hospice. These are high-stake test results. My mother urges me to relax. She is old and can’t bear to watch another of her children die. She means well, but relax? — how cruel an intimation. Most philosophers see the ultimate struggle of life as contending with death. I know I will be relaxed, as are most diseased people when death arrives. I am not sure, though, I can stay both human and relaxed while awaiting these announcements of death’s relative positioning – the tests are my only way to check in on its approximate arrival.

Some patients get good news and celebrate. That’s my hope. But I have been traveling an uncharted road, with breath held while waiting for such news. Now fifteen months of lousy test results leave me worn out.

At such loaded moments I need support from contained people who follow my lead – who understand that one minute I might seek updates about weather and children, the next instant I switch to exchanges about my death, my memorial, my hopes, my fears, then back to the best new show on television.

Following each appearance of further bad news, always worse then I anticipated (despite my pre-cancer self always assuming the worst!) is a break in my treatment plan. These are dark, dark periods where there is no sign of any sky. I think of childhood shows like Flipper and Lassie and wonder, “How can they ever rescue me when I am so hidden?” I know Lassie can find me when I see sky, but here in this totally dark zone it must be asking too much. My fate feels sealed. I am doomed. The end is imminent. And I am not ready. There is no courageous acceptance here.

From the start of my cancer journey, I have been held in amazing community. Meals coordinated via a Helping Hands website. A team of friends research best clinical trials. A few others seem to track every infusion date, magically checking-in, knowing that infusions are rarely routine. They are ready to drop their busy schedules to accompany me to an appointment. It is assumed that my sweetie can only do so much.

This community is more than a circle of love. It is a scientific advantage in staying alive. Study after study shows that those patients who are fully engaged in support circles as well as in their health care decisions, survive longer and better.

When the darkest moments hit, I am least able to reach out, and thus links to my support system fail. Out-of-state vacations and busy work schedules steal away those who have been so solidly on the front lines. My stalwart friends, working as a team might be maxed out with bureaucratic efforts to save me. It’s a much needed to-do list, but not a scaffold down to my dark, hidden cave somewhere that I can barely identify. I try to crawl out when my beloved returns, oh-so-tired from another workday moving stones and earth. But they are not the stones and earth that hold me entrapped.

He never complains as I excerpt highlights from my day underground. I share a cute, endearing vignette to prove that really, I can handle all of this; it is safe for him to leave for another day of work. But I know he knows the layers of my pain and carries what he can off with him. Perhaps he truly is moving some of the weight that I feel obscuring me as he wheelbarrows his way through another day.

Does much of this sound stoic, courageous or full of grace? It should not. It is not. It is dirty, sad, barely witnessed pain. And so I ask you, dear reader, be less generous with your accolades. Be suspicious of my silences and smiles. Learn that protracted death asks more from you then being impressed. Dare to look behind the curtain. Dare to assume that I am not stoic, courageous or full of grace between treatment plans.

Allowing more dimensions to emerge makes walking towards death seem more doable. When we keep our conversations polite and are afraid to put down our upbeat masks, it distances, simplifies and cleans up a terrifying stage of life. It forces denial. I cannot think of any moments in life better suited for full honesty than birth and death. The primal pain of birth refuses to mask a dirty process. Death allows more options.

Recently I convened a group of terminally ill women in my living room under the name It’s a Dying Shame. The recruitment invitations mixed humor with frank language and created a little stir. Medical privacy laws make it hard for patients to find other patients so we recruited providers to spread the word. One supportive provider wondered aloud why I would use the phrase ‘terminally ill’. Really? Why?

I have been bludgeoned with that phrase since diagnosis. Maybe I lie. Maybe it is more accurate to say that no one has used that phrase and instead they repeat ‘you will die of this disease’ over and over. Excuse me if I translate what that means. This provider went on to say, “People want to live with hope.” Again I felt sucker punched and could only reply, “But I live with enormous hope. I am determined to live another twenty years. In one hand I hold the scientific reality that my odds of surviving another few years are dismal. In the other hand sit my just as clear-eyed hopes.”

When the room full of women gathered, the shared motivation was to talk our truth. None of us had such space despite all of us having attended other more formal support groups. None of us wanted to be labeled terminally ill but all of us were, even if etiquette requires more gentle language. The current rules of polite company make the journey towards death more isolating. As one woman noted, “It is like we are standing in a different room.” Our truth, though, was expressed with humor, not tears. I hadn’t laughed this much all month.

We are asked to hide the emotional side, even when humorous, to protect a culture that is not skilled at facing death. We lose the chance to become a culture that sits with death, sadly but comfortably, just as we accept that for every baby born, a new dead body is promised. A dead, cooling body need not be scary when we are given such awareness. Instead, we are offered zombies.

My first nightmare happened as a six-year-old after watching an episode of Get Smart, a weekly comedy of a goofy secret service agent. I loved the show but in this episode there was an overwhelmingly crowded room full of mannequins where the agent got trapped. They were over, under and around him at all angles. I was not too young to catch some whiff of the mannequins as metaphors for death. My discomfort with the agent’s situation extended into dreams and entrenched my long-term fear of bodies.

At my grandmother’s open-casket wake I provided hysterics when coached to kiss the body. When my 18-year-old brother died in a car accident, I accompanied my mother to identify the body. He was wheeled in behind a viewing window. Hours later we visited him in the funeral home. I removed the horrifying toe tag wired to him. He was nude. I so hated the minimal sheet assigned to offer warmth, and the thought of him being left alone that night was unbearable. I have disconnected snapshot memories of being at the crematorium and hearing the loud whoosh as his still nude body was fed to the flames. I fled. I was on a plane home before his body was reduced to fragments of bone. I doubt any cultural realities could have made such a tragic death more bearable. Tragic will always be tragic. But would I be less haunted if I could have spent the night with him, washed and dressed him as I imagine he would have chosen, and experienced more than his cold, violated, vulnerable body on slab after slab? I yearned to hold this body I had embraced so much in life.

Recently I had a front row seat in how fitting it is to sit with the body of a dead person. My brother-in-law was diagnosed with ALS nine months before it killed him. We are a small family on all sides. Smaller still by geography. This second terminal diagnosis so quick on the heels of mine seemed rudely timed. But disease is not about respect. His fast entry into hospice and faster yet progression towards death surprised us all.

Few folks made it in time for his final breath but his poet wife narrated it with beautiful detail allowing us all to feel as if we were almost there. We arrived within the hour. The living room was crowded, quiet, yet content. He lay peacefully in his bedroom. Candles were everywhere, as was extra seating; this was an enticing place to be. There were no rules for how long you sat, how often you walked the few dozen paces from the living room to the bedroom, what rituals we each selected to meet our own needs. It was so calm, so cushioned. Further visitors were diverted and gradually the group winnowed down to those most impacted. A day of dying made so organic with so few flaws in the scripting. The twenty-year-old daughter was supported in making the few decisions of the day. How and when should the body leave the house? Death had not been invited but was accepted, anticipated and lived fully.

Fred was not particularly brave about his death. Dementia had obfuscated the diagnosis and whittled down his smart intellect. Social niceties were deeply dulled by inroads of the disease in his brain. He startled all of us those first few months by blurting out “I am scared”, received by a deep silence as we tried to manage our response. How wonderful for me to have someone saying the obvious.

He was courageous, graceful and stoic in life and death, but he was also very real. We are all scared. Voicing our fears may or may not make us less scared but surely it makes the experience more bite sized and human. It opens up the door for actual support. I believe Fred’s fear shrunk just a bit each time he stated it.

Perhaps what I most hate about the predictable adjectives assigned to the dying is how they belittle who I was before being diagnosed with terminal cancer. Having been a shy child, I was determined to be a courageous adult. I was.  Fierce, brave, bold – those are the adjectives I worked so hard to own. I am proud that my life has exemplified those words to many. I am brave for how I have lived my life. I am not brave because of the poor luck that finds me with terminal cancer at age fifty.

Our society oddly conflates poor luck with bravery. Think September 11th. Rescuers were brave. Those randomly stuck in the upper floors of the twin towers, had very, very bad luck. They may also have been quite brave but being there didn’t make that true. Bravery should imply some choice. I am not sure I would have made the courageous choice to be a fireman walking up those stairs.

Members of the terminally ill club to which I belong  — those that acknowledge their status — are a pretty raucous bunch. We laugh a lot. We are irreverent. It is a sad but genuine humor, this humor of the brave who cope by refusing to be silenced with politeness.

My momentary good news is that Lassie is dragging me towards air, towards a bit of sky that marks a new treatment plan. With the return of the physical challenges of active treatment I re-find my hope. Perhaps I can use this three-month treatment cycle to better plan for enduring future bad test results. The cycle is predictable. I will find myself back in suspended animation in my cave where there is so little oxygen to sustain me. I need a better plan because during this current stretch I have barely been able to endure my own psychological stench. But this is what prolonged dying looks like when the messy moments are not hidden from view or glossed over. To camouflage such realities is an injustice to understanding human life, mine included. What would the Buddha say to that?

Marcy Westerling – Oregon

September 2012

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About marcy westerling

I am a long time community organizer with a passion for justice and founded the Rural Organizing Project in 1992. Derailed by a Stage IV Ovarian Cancer diagnosis in spring 2010, I have stayed in treatment since then. I am learning how to embrace livingly dying and hope that by starting a Phase One immunology clinical trial at UPenn in spring of 2013 I will have more time to find the sweet spots of thriving while terminally ill.

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