Tag Archives: dying

And a Time for Goodbye

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My ten day allocations of living shrunk last week when my team of doctors decided that I was no longer eligible for chemotherapy. Chemotherapy being my only active tool to contain my cancer which seems to be invading more and more of my body. I entered in-home hospice Friday.

I have yet to sing the praises of hospice. The main difference is that I am at home (nice) and that Mike is now a deputized nurse (not so nice.)

I don’t feel good. It hurts to talk (ng tube goes down my throat to extract fluids from my stomach into a cute little bucket.) I have received no actual nutrition since i entered the hospital. Nothing can stay in my stomach with out me throwing up. And nothing can go beyond my stomach. There is no detente in site.

I wont pretend to keep blogging much. I think the above sums up my trajectory. I will soon die. I am not scared but I am truly sad.

Thank you for finding this blog, passing it on. Perhaps it will have a future in another’s hands.

I am not encouraging visitors. I find this a time for quiet reflection.

Much love to all and most especially my care team that formed the night of my diagnosis and has stood by me through it all. And my beloved partner, always – Mike Edera.

Goodbye, marcy

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Letting Go

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Have you been swept up in the recent brouhahas debating how dying people should close out their lives – loudly versus quietly? Two doomed women have triggered voluble discussion in their separate determinations to live longer. They share being younger and skilled in amplifying their voice. Being loud has been a part of their strategy. They enjoyed full lives before and during their years with terminal cancer. One has since died, the other struggles mightily in a hospital.

The discussion has not been amongst the dying but rather largely amongst those still living lives of good health. Frankly, columnists needing to find a topic launched much of this with plain poor manners.

Andrea Sloan, typical of many advanced ovarian cancer patients, had no more FDA approved drugs to contain her cancer when her doctor indicated she was a molecular match for a new drug still in clinical trail. She couldn’t access the clinical trial so she organized a team, Andi’s Army, to petition the drug company via public outcry to grant ‘compassionate use’ of the drug. It was denied and she died within four months of her campaign start.

Lisa Sloan campaign for access to drugs

Lisa Sloan campaigning for access to drugs

Lisa Adams suggests no policy changes I know of, she just tweets and blogs her experiences as a lab rat for her cancer, saying yes to whatever seems plausible to keep her alive longer with her young family. She has quite a following indicating appeal.

Lisa (left) in the hospital with her doc

Lisa (left) in the hospital with her doc

I am also rather loud in my living with cancer just as I was rather loud in my pre-cancer life. Whether astrologically flawed as an Aries or for some other reason, I share my reality and am persistent in my medical options. It is not wrong or right.

I watch another cancer sister move into the end zone with her disease. She is as contained as ever. She suffers quite a bit and understands there is no turning around where her cancer is heading. She is actively dying despite still being in treatment. Why, I wonder, have none of my local sisters chosen Death with Dignity, legal in Oregon. But I wonder to better inform my own choices not in judgment. When in my own dying process, let alone how, will I finally let go? Physical pain can be more tolerable than saying that final goodbye, I suspect. I think the terminally ill have few judgments about how to die, we are busy enough keeping our heads above water. Watch us or not but don’t judge.

There is 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.”

I awoke this morning to an hour of Martin Luther King, Jr’s voice. His speeches are always humbling and inspiring. The hour closed with his final speech before being assassinated. In it he referred to being stabbed in the chest and the knife missing his aorta by the merest of slivers. Doctor’s noted, and the press repeated, that if he had sneezed prior to surgery the knife would have shifted enough to kill him. A little girl wrote in his favorite letter, “I am glad you didn’t sneeze.” May we all avoid a fatal sneeze today and feel gratitude for the choices we are allowed.

A Leader

A Leader

The Flight of Val

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My friends,

V-Tuley-at-Salvation-Tree She is gone.

I got this simple post a day late. Weary from an all day cross-country plane trip, I now waited for the train that would take me towards my lodging. I was alone in every sense standing on this empty platform. My Smartphone informed me that Val was dead. My breath caught.

There was no surprise in the news. I had visited Val in hospice the night prior. Val lay there emaciated, glowing, moving in and out of lucidity. Cancer had won the struggle for the body. Diagnosed at 39, surrendering at 44, Val, in the words of her obituary, “relished life.” In the same obituary it noted, “In her hands a cancer diagnosis became a creative medium for conjuring an astonishing rich garden of community.”

I was lucky enough to be a small part of that community.

Val had stable cancer when I met her three years ago, two years into what she once called “This Great Difficult Thing” but she was still getting her ‘magic juice’ every three weeks with an eagerness I found encouraging. Here she was, made to order. I had put the word out that I wanted to meet a stage iv woman younger than me. I needed to be shown that this journey was doable. Val was a good one for inspiring. When I learned she biked everywhere and was recently seen splitting wood, I requested a date with her.

We spent hours strolling the gardens of Crystal Springs. In retrospect, we both lied a lot, saying how, “this was ok, this knowing that we would die younger than planned.” Despite the big lies we shared the smaller truths of how to find comfort with our terror, how to break down the enormity of our diagnosis, how to cherish the invigoration of knowing that mortality was now more than a concept.

She started her own journey by reminding us that, “None of us are getting out of this alive.” Indeed.

We met a month into my own diagnosis. I still had my long hair on that walk. Val and I were different people – she butch to my femme, she poetic while I sought solace in linear thinking, she musical and I without rhythm. And yet we were consigned to the same path, different entry and exit points, but a specialized highway for those with terminal cancer.

We didn’t maintain a high volume of contact. She was enjoying probation while I was entering lockdown. We had different needs. But Val was always there for me.

Our groups, her Salon of the Scathed and my It’s A Dying Shame, became complimentary platforms for exploring the taboo topics encountered when walking towards death or having death walk towards you – it’s never really clear with cancer. Humor, irreverence and rawness were core to our shared style. We were determined to experience the range of emotions and to enjoy the process.

Val wowed me with her soul too large to be tethered in one body on one planet. I don’t know where we go next. I am not in a rush to find out. I like to imagine Val as her own little prince on her own little planet still enjoying sunsets and sunrises – one more image of Val to delight.

Val wrote once, “I want there to be a good story to tell. How I will do battle and overcome. How you can all relax and not be afraid to click on this blog. And in truth, even if the thing does grow there are many more steps to take. There are more options. More story.” The story is now in our hands.

An ode to Val by Marcy – May 2013

Welcome to Livingly Dying

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Welcome to a space dedicated to the process of livingly dying – staring at imminent mortality and yet residing in the world of the living. More and more of us are finding the words terminally ill and chronic illness co-mingle. We are living longer and better despite a dire diagnosis/prognosis. But the path is not easy.

We bounce between denial, deep despair, and sheer optimism. All the while, many of us face treatment regimes that whittle us down and a current culture in the United States unfamiliar with sitting with death and dying. These writings will be of most value for:
a. people navigating the balance of living when told you are dying
b. people pursuing creative approaches, especially those stimulating our immune systems to fight back the diseases trampling us
c. people interested in witnessing one person living each day with terminal illness.
Livingly Dying Essays, Clinical Trial & Creative Approaches,  and Medical Industrial Complex Woes make up the three categories on the lower right column of the front page allowing you easy access to content that most interests you. To receive new posts click the follow button in the upper right column. I share my journey to support collective efforts to live well while dying. I am feeling my way out loud. Thank you for joining me. Comments are always welcome, in fact, they cheer on the process. If you scroll below this welcome, you will find the running narrative with most current post on top.

For those who like seeing and hearing more than reading, click for the YouTube film of me explaining the concept of Livingly Dying https://www.youtube.com/watch?v=365W0sJq8BE 

Alive! Three years into the cancer journey

Alive! Four + years into the terminally living journey.

Marcy Westerling – marcy@rop.org

Expiration Date: an essay on Livingly Dying

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Technically, this last year was a tough year but, in fact, a year ago I was six months into failing chemo after chemo to handle my first recurrence. My options were not looking great as I penned an essay Expiration Date that I cut and paste below. (Please feel welcome to share.)

Diagnosed with cancer after a collapsed lung, my statistical odds were a 10% chance of living beyond two years.
This past year we fought for and got surgery to remove my largest tumors, found a chemo regime that worked and we keep fingers crossed that my cancer will stay stable until I sign paperwork for entry into the clinical trial May 8th. Today I enter my fourth year with this cancer. Most of the time I am in treatment and always awaiting new blood work to reveal which direction the cancer is moving. There are few opportunities to feel confident.

Not every day is a great day but almost every day has great moments. Just like for many of you, I suspect.
They say tomorrow kicks off a string of sunny days – what more could I want. Well, stable blood test results would be very, very nice as well.  xoxo

Expiration Date: an essay on Livingly Dying

I was once known for buying deals on almost-expired meat. However, I didn’t limit myself to expired meat but that behavior earned me top notoriety in my friendship circle. Taking expiration dates too seriously was never my thing. Expired cold meds even seemed to offer an occasional high – who knew?!

These days I am grateful for my common sense attitude toward dates as I stare down the ultimate expiration date – my own. One month into my 51st year I was given a 10% chance of being alive in two years.

People say funny things as they attempt to comfort the terminally ill while managing their own fears.  One common statement reassures that, “We are all terminally ill.  You just know it”. “Harrumph,” I think. I do know. I more than know it as my weary veins dodge yet another dose of toxic poison infused with the knowledge that it will bring me to my knees with exhaustion, nausea, brain fog. Slight consolation is the hope it will keep me alive awhile longer.

When first diagnosed on April 22, 2010 the doctors made every effort to be factual but tactical.  Incurable and metastasized were mentioned, but not terminal, not palliative care. Yet every appointment from then on seemed to include the statement, “You will die from this disease.” It was like a boot camp mantra – getting me used to my new normal. I was in shock but I could still rebel at that edict. “How dare they,” I fumed. But then one day I realized the only way to avoid dying of this disease was to have some other tragedy end my life. What kind of victory would that be? Would my oncology team really be impressed that I managed to get run over just to avoid suffocation by cancer?  I finally accepted I would not die of old age, but from ovarian cancer. 

I have learned a lot about advanced ovarian cancer. It is recurrent, relentless and fast to adapt to any chemotherapy sent its way. Ovarian cancer is not a particularly painful cancer. I like to note, “my people die looking good.” We tend to move in and out of treatment, giving us some much valued recovery time, which is further boosted by steroids when in treatment. It seems wrong to call our form of cancer a wasting disease. One day the doctor will simply inform me the cancer has outwitted all the chemo types available, and treatment will end. I will then enter hospice and die soon thereafter – looking pretty much like I always have albeit possibly bald and ten pounds heavier courtesy of those steroids. I claim the ovarian cancer sisterhood as my people now, because they teach me how to live and die by example. It is a tough group of women constantly being whittled down with funerals and then expanded as the newly diagnosed walk in.

I stand on a particular type of death row. I have been sentenced, but some vague appeal process offers me the possibility of being an outlier – one of the few who survive for over a decade despite the dire odds. No one knows why. Unlike an actual death row inmate who is confined in every aspect of living, I have freedom of movement, tethered mainly by treatment timelines, financial realities and other choices. What I am denied is the freedom to assume I will be alive three months hence. What started as an insurmountable burden I am learning to accommodate. I move from solitary confinement, to a shared cell and then to a mere ankle bracelet with frequent calls from my parole officer.  It is inconvenient but not intolerable.

For me, I cannot live without hope. When I think of my death as truly imminent I feel a grief that I now see as pointless – I just don’t have the time for such sadness. I choose to save those tears for when I am told it is time to contact hospice and then I will move into that final phase of acceptance.  My current mandate is to live with the shadow of death seated comfortably on one shoulder – I rarely forget but I often dismiss my new companion. Parameters are drawn.

Prioritizing hope does not require me to feel optimistic. I am especially clear eyed right now as I endure my first recurrence too soon for it to be a positive indicator. Worse yet, my cancer has only grown after eight months of renewed treatment on multiple chemos. (Please note: one year later, April of 2013, I am closing out a new chemo regimen that seems to have moved me towards remission as well as entry into a cutting edge clinical trial.)

I have made a certain peace with leaving this world, a comfort experienced only after considering what I might do, where I might be, what I might become after I die. What’s the harm in daydreaming my possible death future? The worst that can happen is that I am wrong. I live in a culture that offers few possibilities around what dying means to the person who has died – it is either viewed as THE END (with many finding spiritual solace in turning into humus for the ages), or viewed in mythic versions of heaven and hell. Neither option works for me.  

Weeks after my diagnosis I sat in the Spring sunshine by a burbling creek at our homestead. My sweetie was doing the chores that I was barred from doing post surgery.  This was a favorite resting spot of mine. The chickens made their comforting sounds in their enclosure to my right while the more rambunctious ducks blurted out their loud, harsh and comical sounds in the pasture to the left.  The garden emerged behind me. I was surrounded by so much that I loved. The warmth of the sun reached every nook of my body. The tears I cried were happy ones. Why could this not be my heaven? Why couldn’t I decide that here I would reside, barred from engagement with my former world, but observing it more happily than not? I make the choice to imagine my next world much as Peter Pan declared, “To die will be an awfully big adventure,” even if he imagines his death more boisterously than I do mine.

I have heard of stoic, terminally ill people who chose not to burden others with their diagnosis. I have yet to meet these people. Others allegedly fear being defined by their illness. My response to the diagnosis of terminal cancer was to count down until the first remission allowed me to get a large tattoo on my wrist declaring me a Cancer Warrior with the script positioned for any newcomer to read. Every bag I carry sports a button stating, “Cancer Sucks”. I dare the world to ignore my diagnosis just as I defy any attempt to limit me to my diagnosis. I bike everywhere, slowly to accommodate the damaged body, wishing for a banner across my back to allow those swiftly passing me to know that I am biking despite cancer in my chest, abdomen and pelvis. What a small way to proclaim what it means to live fully with your expiration date. How comforting it might be to the newly diagnosed to have such models. 

Two years in and my closest friends increasingly challenge what they see as my negative self-talk.  I am in palliative care. I have been in palliative care from the beginning. I missed the few curves that could have portended improved outcomes – longer survivability. All success is measured by longer survivability, especially by me. I recurred too fast. The cancer is now ten nodules versus a few which would be possible to grab via surgery. Yes, I think palliative. I hate it but I would hate more missing this closing phase of life by pretending things were different. 

Deep inside I continue to work on a story line that allows me to live – I fall asleep to the effort, I awake to the possibility.  I pray for a miracle knowing that, really, only a miracle can save me now.   The deepest part of me still believes I will survive despite my intellectual clarity that advanced ovarian cancer is almost always terminal. I just can’t imagine saying goodbye so young. And then I fret; maybe I did talk myself into recurring so fast.

I get my affairs in order. I avoid paperwork at this phase of life and focus instead on my closure — painting rocks for memorial service party favors to be remembered by, quilting for loved ones, making time for conversations I would rather not have. I have written up a burial plan.

I live on death row in a lovely neighborhood, in a lovely house surrounded by perks that don’t eliminate the sadness of departure.  I hold my pink slip from this world. My life stays filled with joy and meaning as well as a mantle of sadness – the former only enriched by the latter. Years prior I wondered, as do many, would I rather die unexpectedly – poof, be gone? I suspect not. I like to orchestrate. I definitely intend to script this phase of life and be thankful for the opportunity.

Some days resentments push forward. I know how much fun retirement would have been with all my friends. Will I really have to miss the magnificence of the maturing front yard that I’m planting this Spring? Will someone else match my devotion to what I leave behind of my life?

My expiration date has passed. I live. Today is another day on death row. I embrace livingly dying, in the words of the late Christopher Hitchens, and I am grateful for this luck.  

Marcy Westerling – Oregon

written Spring of 2012

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

Dancing and Thinking Out Loud

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Monday, July 30th , for better or worse, I will be profiled live in the second half of Oregon Public Broadcasting’s Think Out Loud.  If you go here http://www.opb.org/thinkoutloud/shows/marcy-westerling/ you can even pose a question – ones that bring it back to rural organizing are valued.

Marcy Westerling

AIR DATE: Monday, July 30th 2012

POSTED BY: JULIE SABATIER

At 53, Marcy Westerling is taking stock of her life and legacy as a community organizer. She’s also making tokens for her friends to remember her by. Two and a half years ago, Westerling was diagnosed with terminal ovarian cancer. She says,

“I can accept dying and dying young. What I’m less OK with is disappearing…I want to be a mentor for younger organizers and allow myself the gift of feeling like I’m going to be carried forward even though I don’t have control over how long I’m here.”

Westerling is probably best known for founding the Rural Organizing Project (ROP) in the 1990s. ROP is an advocacy group focused on sexual and racial minority communities in rural Oregon. She’s stepped back from her leadership work at ROP, but she remains very involved as a both a mentor and keeper of the group’s institutional memory.

Do you have experience with the Rural Organizing Project? What would you like to ask Marcy Westerling?

While the OPB show might be fun, what will be much more fun is a dance party slated for Saturday, August 18th.  The best DJ is donating his time and great food and beverages are being lined up.

A Summer Dance Party! Save the date – share the invite

To benefit the Rural Organizing Project & all our psyches

Hosted by Marcy Westerling* & Cara Shufelt

Put on your dancin’ shoes because ROPers and urban friends are gonna dance the night away in Cara’s backyard!  (With great food and drinks and music.)

When: Saturday, August 18th 6-9pm

Where: Cara’s Backyard:

What: An evening party to mix & mingle, hang with ROPers & Marcy, dance the night away to a live DJ and support the work of ROP!  Great tunes and good times.

* special note:  I will be getting my inside look scan results the week prior – these determine if this chemo is working after a long year of limited success in containing my cancer.  So, you can well imagine that dancing, if the results are good (please!) or bad (wah!), will be very, very therapeutic.