Tag Archives: Talking about dying

When A Comment’s Better Than The Original Post

Posted by Dia in Blogging and tagged with , , ,

“Without love, a decent world does not exist.”

Well, amen.  Doesn’t that just say it all?

This gem came out of a comment left on a recent post and I’ll tell you what…a good commenter is worth their weight in gold.  Comments in general are great and deeply appreciated but, still, every once in a while something comes along that really grabs my heart and wrings it.  A couple more recent examples:

From Alice in the Cities:

“Oh, and he did speak just before he died. He saw his brother in the doorway twice and said happily that he was waiting for him.”

From Cindy’s Cancers:

 “I was very afraid of dying but after being inpatient at hospice I saw that they can and will make sure that I don’t suffer. Now I can continue to enjoy what time I have left.”

And lastly, here’s one more from the same guy mentioned above, Robert Brownbridge*:

“Immortality is optimally reached if and when we have loved fully and well.”

(*Robert Brownbridge is a poet and the author of a memoir about the Korean war called Into War With An Empty Gun.)

There have been more along the way.  Comments that were beautiful or honest or simple or insightful or thought provoking or surprising or just plain fun.  Maybe from now on I’ll try and throw them up like this whenever they come along.  Or maybe put up a page specifically for them called Comments Better Than The Post.

copyright Dia Osborn 2013

When Instincts Lag Behind

Posted by Dia in Living and Dying and tagged with , , ,

800px-Henri_Rousseau_-_Il_sogno

Henri Rousseau The Dream

Our collective, societal instincts about dying haven’t really kept pace with our evolving medical technology.  Which makes sense.  How could they?  Group instinct develops over long periods of time…decades, centuries…while medical technology is changing so fast that even the medical technologists changing it can’t keep up with it all.

Instinctually, the typical knee jerk response is still to cling to life as long as possible and our  group choices…the ones offered by our medical industry…mostly reflect that.  The majority of people don’t understand on a visceral, gut level yet how blindly clinging to life can now take us far past what we want into nightmare territory.  It’s like overshooting a remote landing strip and crashing deep in the jungle on the other side.  You may live a little longer that way but you now face new and different ways to die that you probably won’t like.

I usually find there’s a big divide in understanding between people who have hands-on experience around dying and people who don’t. Experience seems to update one’s instincts to the 21st century.  In a hurry.

I suspect better education about dying would, too.  And it also might help people avoid some of the most popular mistakes being made today.

For anyone interested in the educational option, here’s a link to one of my favorite articles about navigating the dying process in today’s world.  It’s called Letting Go by Atul Gawande and is pretty long.  But it’s also compassionate, wise, and insightful…things that can help when wading into a topic as scary as this one.

copyright Dia Osborn 2013

The Unmistakeable Parallels Between Birthing and Dying

Posted by Dia in Living and Dying and tagged with , , , ,

800px-Modelo-de-quadril

(Photo from Wikipedia: Model of pelvis used in the beginning of the 19th century to teach technical procedures for a successful childbirth. Museum of the History of Medicine, Porto Alegre, Brazil.  Fascinating, no?)

I’ve been going back through my hospice journals while working on the rough draft and came across the following entry from 2005.  It has to do with the similarities between giving birth and dying, similarities that are widely recognized by everyone working in end-of-life care.

I thought I’d throw it up here since most of my writing energy is going into the book these days.  And for any of you still following in spite of the current paucity of posts…my deepest thanks, as always.

“I think part of what the three years working with hospice has taught me so far is that, with as huge and scary as the whole process intrinsically is, it’s still something I can prepare for.

It’s far less frightening to me when I have some kind of plan to deal with what’s going to happen—some kind of idea of what to expect–rather than going into it feeling totally helpless and ignorant.

This idea of having to squeeze back out of my body again reminds me so much of when I was preparing to give birth.

Of course I was scared as I looked down at my stomach-the-size-of-a-pig and realized oh my god, this thing has to come OUT.  Through a pea-sized hole.  And I was even more scared with the second birth because after the first time I had details.

But both times I was as prepared as I could get.  I’d taken my supplements, done my kegel exercises, gone to my check-ups, attended birthing classes and learned how to breathe.

I’d read books, asked questions, talked to other women who’d been through it and knew pretty much what to expect.

I knew it would be painful…I knew just how painful the second time…and I knew it would get more painful the farther into it we got.  I knew there were dangers involved.  I knew what position they were both in when labor started.  I knew what my red blood cell count was.

I had my team assembled.

I’d done everything I could to get ready and after that…well, it was just up to the birthing gods.  All I could reasonably do was offer up a prayer…please guide us, protect us, and give us safe passage…take a deep breath, and dive in.

I think of dying like that now.  I’m doing my best to prepare.  While working with hospice I’ve watched a variety of different approaches to dying and seen which of them work and which of them really, really don’t.

I’ve thought a lot about what decisions I’d make under a host of different circumstances…ceasing to eat at the last being a central possibility in terms of attempting to control the process from the outside.

But there’s another, even more important level of preparation to be made, and that has to do with developing my inner strength.  Gathering the ancient tools that have proved over time to be the most effective when dealing with dying.

Like courage.  Like endurance.  Like generosity.  Like grace.

Like surrender…that most difficult of all possible tools for a control maniac like me.”

copyright Dia Osborn 2012

The Titanic and Something Mysterious Going On in the Dying Rooms

Posted by Dia in Living and Dying and tagged with , , , , , ,

(Image from the blog Corazon’s Corner.)

I indulged in a day of lunch and theatre with an old friend from the hospice I used to work with recently.  Les Miserables.  Music to knock your socks off and blow your hair straight back…especially as we were sitting in the first row directly in front of a two-story speaker.  I couldn’t hear for an hour afterwards but I didn’t want to either, at least not until my body finally stopped vibrating with the memory.

It was a beautiful afternoon spent with a dear friend doing wonderful things.

He used to be the social worker for our small hospice before the owner died and everything fell apart so naturally, over lunch, we spent some of our time reminiscing about the old days.  We got to talking about dying and death in general and, before I had a chance to say anything, Dear Friend blurted out.

“Everyone is SO obsessed with death!”  He seemed excited which, for Dear Friend the Placid…the Even…was startling.  “It’s all you ever hear about!”

He went on to complain about the constant, battering stream of drug commercials, all the news coverage of new medical research that only ever talks about mortality rates and never about quality of life.

The assumption seems to be that if a person is alive, then of course that’s better than being dead…no matter what.  Even though when you actually talk to people on the street, the majority say that after a certain point of escalating suffering and loss (that quality of life thing again) they think they’d really rather just go ahead and die.

It was such a relief to me, to hear somebody else say it.  And it struck me again, how those who have worked around hospice generally wind up coming to the same conclusion.

Dying just isn’t that scary for us anymore.  We’ve seen it.  We’ve been around it a lot.  It’s become our familiar and we’ve made our peace with it.  We know we’ll be doing it and that’s no longer a problem.

Over time we came to see how dying fits into the grand scheme of things and how, more importantly, it can actually top off a life in a way that rights some of the wrongs that were made.  We’ve seen first hand, multiple times, how dying can deepen the beauty of a life, spread that beauty around to others, and even leave that beauty behind as a legacy of good that lasts a very, very long time.

Unlike a lot of people who say they know they’re going to die, we REALLY know it, and the knowledge has largely freed us from the constant, underlying fear that people usually don’t even realize they’re living with all the time.

What IS still scary though, even to us, is all the possible wrong choices around dying that are available in today’s world, choices that we know can make dying a lot harder, make the difficult parts of it even worse than they already are.

They’re choices that are proliferating at a blinding speed, too, that are being pursued, promoted, and paid for by that same deep, unconscious fear of dying that’s basically running everything at this point.  Our medical institutions and research facilities, our public health policies, our hospitals and doctor groups, our politicians, and our insurance companies have all evolved around this one, central terror of dying to the point where mortality rates have become the key measure by which everything else is judged.

Dying…and desperately avoiding it…has long since gobbled up the majority share.

There are a few people scattered around who, like Dear Friend and I, can see this, and some of them are even people in high places with a lot of influence.  Some of them watch the teetering tottering mess with the same dismay that we feel, while others rub their hands together with glee, jump into the chaos, and do what they can to further, then capitalize, on all the fear.

It’s a mess.  It reminds me of that classic scene sequence from the movie Titanic, where the iceberg has been hit, the ship is half sunk, and her decks have finally collapsed into a chaotic, milling scene of abject human terror and despair.

It’s quite grim.  The movie makers did a good job there.

And then…and then.  They do something magical.  The camera abruptly pulls back from the closeup coverage of all the chaos and noise, moving to a more distant, mid-range kind of shot from up in the sky and the noise and chaos are instantly reduced.  We can still hear the screaming but it’s now far away and less disturbing.  The ship, in all it’s eerie, glowing destruction is much smaller now, it doesn’t overwhelm us anymore, framed as it is by a huge sweep of dark, silent ocean that somehow manages to contain and quiet it all.

It’s true.  A larger perspective always helps.

But the magic isn’t over yet.  The camera suddenly pulls back again, to an even farther point up in the sky, a place so high that we can now see not only the vast ocean containing the tiny ship, but the vast night sky containing the vast ocean that contains the tiny ship.

From that height we can’t hear anything anymore.  Not a single visual or auditory detail of the tragedy is left and it’s a relief to be removed from it like that.  To be offered a perspective, a scope of time and place, so vast that it easily contains and cradles even that much suffering.

I think about it a lot, why spending time in the dying world helped to alleviate my own fear of it, and I think it’s because this same kind of thing happened.  Somehow, by being there with them—each rare and beautiful dying person—by laying my own hands on their quivering bodies and fears and dreams, it made the camera inside my eyes magically pull back, too.  Little by little, day after day, mostly to a midrange place where I could still hear and see all the suffering, only surrounded by a great stillness.

But then every once in a while, for some reason that I still don’t understand, (probably love come to think of it…love can do a real number on perception) my eyes would pull back farther than that, out to a place full of twinkling stars and deep time.  And in those moments the people I was looking at, the homes I was working in, would fall away into profound silence while everything started to glow.

The wasting body beneath my hands, the faces around me crumpling in pain or anger or grief, all the dying room litter of soiled wipes and used commodes, of sweaty, wrinkled clothing, ice chips, and pill cups, would transform into something that was simultaneously exquisite and heartbreaking—as if everything, all of us, were turning into a giant constellation of stars that were just hanging there, glowing and guiding, in some other kind of vast but invisible night sky.

Although no.  Not turning into.  It wasn’t so much like we were becoming a constellation of stars.  It was more like that’s what we’d always been but then we forgot, consumed as we are most of the time by the engaging, delightful, overwhelming barrage of all life’s little details.

And for those few luminous moments, I’d stand gazing around me slack-jawed and wide-eyed, my hands frozen in whatever task they’d been doing, my breath suspended with the wonder of what I was seeing.

And then whatever was causing it to happen would change and the camera in my eyes would zoom back into mid-range again, the glowing would disappear, the noise would resume, and I’d be able to move again.

Then later, when I’d leave the dying rooms and walk back into the noisy, chaotic world of regular living, my eyes would zoom back into close range again which, frankly, is where they are most of the time.  I’m usually just as overwhelmed by details as the next person.

But even though those strange, glowing moments were brief I can still remember them vividly.  I can return to them and touch them, over and over again, whenever I need to.  Those seconds of looking at the world from somewhere farther away and higher up, from a place where every ordinary, everyday, stinky, crumpled, decaying thing suddenly looked like a miracle and a gift.

And just remembering it, I’m surprised all over again each time.  Overcome.  It makes me fall head over heels in love with life yet again because somehow I still keep forgetting just how BIG this all is.  Big enough to tenderly hold not only the nubile and lovely, but the terrified and aching as well.

Big enough to contain even dying.  In the end it all really is just a blink.  A beautiful, hard slogging, transcendent, soul crushing, miraculous, grief filled, fascinating, bewildering, breathtaking, fragile, prostrating gift of a blink.

Thank God it eventually ends.  Who could take this kind of fabulous beating forever?

copyright Dia Osborn 2012

Breast Cancer: Pink October’s Long, Dark Shadow

Posted by Dia in Living and Dying and tagged with , , , ,

by Raphael

I heard that this was happening before…a few times over the years actually.  But usually the voices of the women talking about it…the ones who are actually dying from breast cancer and therefore barred at the very pink door of Breast Cancer Awareness Month…wind up being drowned out by all the noise and hoopla.

So I thought this year I’d give their voices what little boost I have available.  For whatever it’s worth, this post is written for those of my brave and brilliant sisters (and brothers…men get breast cancer, too…) with Stage 4 or metastatic breast cancer who’ve been unfairly asked to stand behind the building and out of sight for a month while the rest of us gather inside to smile and shop and optimistically wave our pink ribbons in the air.

(About 30% of all breast cancers wind up reaching the metastatic stage by the way…a statistic that often makes the lucky and/or hopeful squirm and sidle away when they encounter anyone already there.)

For those who don’t have a clue what I’m talking about, here it is:

Most of the awareness raising efforts during Breast Cancer Awareness Month aim at benefiting women who are either still perfectly healthy or at least curable.  But for those women (and rare men) who aren’t as fortunate?  Those who’ve already crossed into the next scary…but still oh-so-exquisitely-alive…world of metastatic cancer?  Not so much.

In fact, not only does Breast Cancer Awareness Month NOT raise much awareness about these women and men–their courage, their deep love of life, and their profound need for research dollars– the net effect of the campaign actually winds up excluding them, leaving them feeling abandoned, or worse, unwelcome.

I realize that none of this is intentional…nobody means or wants to pile additional hurt on these women and men already grappling with so much…but it’s still appalling.  We can do better.  I know we can.  Here’s one possibility off the top of my head and it’s a very simple start:

Please…take the time to read this article by Joan Oliver Emmet titled Women with metastatic breast cancer: feeling alienated during Breast Cancer Awareness Month.  Ms. Emmet and the women from her breast cancer support group lay it out more eloquently than I ever could.  Then, if you feel inspired (and have a Facebook account) leave a supportive comment.

Read it because in doing so, you’ll actually be honoring the Awareness part of Breast Cancer Awareness Month as much as you could by running in a footrace (and probably more than buying the pink yogurt or watching Sunday football.)

Or read it because all the women and men with Stage 4 and metastatic breast cancer need to be pulled back into the circle of our arms even more than the rest of us, not less.

Or read it because if we can stop running blindly towards some seductive pink light at the end of an increasingly (let’s face it) corporately constructed tunnel, turning instead to clasp the hands of these women and men with incurable cancer…to stand and face the long shadow of death with them, shoulder to shoulder…our collective terror about the whole thing may actually lessen a little.

Caring and inclusion often have that kind of effect.  They tend to build courage and support clear thinking.

Or just read it because the article isn’t all that long, it’s well written, and it’s moving.

I’d love to see this month move beyond its strictly pink focus and maybe add some depth of color.  If pink ribbons signify a push for cure by early detection and treatment, then maybe we need another color that signifies a push for cure for later stage breast cancers?  Red maybe?  The color of pulsing, dynamic life?   And maybe another color to honor those women and men who can’t be cured at all yet…and those whom we’ve already lost for that matter. Maybe a pink and red ribbon laced with white?

Or then again, maybe we should just take the billions of dollars spent on paraphernalia, marketing, and advertising these days and donate it all straight to the research labs?  (Shooting for the moon, I know.)

But whatever we do, let’s at least pull all the beautiful and beloved women and men currently dying from metastatic breast cancer back into the building this month and hold them in our awareness, too; celebrating their lives, sharing the grief of their losses, and applauding the staggering courage they display every day.

And who knows?  Maybe if we let ourselves actually acknowledge the odds we’re still up against with this dreadful disease, it’ll add even more fuel to our search for cures.

Here’s hoping.

copyright Dia Osborn 2011

I’m still here. Updates on wildfire smoke, a hospice patient in the family, and garden things.

Posted by Dia in Living and Dying and tagged with , , , , , , ,

Readers, forgive me for I have sinned.  It’s been two and a half weeks since my last blog post…which is a first.  Maybe it’s a sign that my life really has been just as busy as it feels but still, excuses are boring so I’ll just leave it at this:

Hello and I’m glad to be back.

Updates:

Mon Pere: I wrote a blog post about my father-in-law’s unique dance with aging a while back (see Elders and the Strange Gravitational Effect of Final Mystery) and since then his spiral has tightened.  He was admitted into hospice care a couple of weeks ago and, as so often happens, his symptoms have greatly improved since then.  Finally…relief.

It was interesting watching him work his way through all the many and powerful misunderstandings that still exist about hospice in the minds of most people.  He was very reluctant to take the step because, as he said, “I just don’t feel like I’m dying yet.”

And rightly so.  He’s not.  He’s still very much alive…and he will be until those final days or hours when his body begins it’s final, dramatic shut-down sequence.  Until then, he will not…I repeat NOT…be dying.  He’ll be living with a terminal illness which is not only a completely different thing from dying, it’s where hospice care really shines.

So far the hospice staff (along with family members) have managed to get his escalating pain…previously managed separately and inefficiently by three unrelated doctors in three different far-flung offices…back under control.  His medications have been consolidated, coordinated, and increased enough to actually do the job.  A nurse visits him regularly at home so he no longer has to make an appointment (then wait a week with out-of-control pain before having to drag himself down to whichever doctors’ office is involved.)

After months of debilitating pain he’s been able to finally return to his normal cheerfulness…to doing the kinds of things that he loves.  It’s a transformation we’re all profoundly grateful for.

The hospice he’s with also brought equipment and aid into the house that’s making things a lot easier for him…from getting out of bed, to going to the bathroom, to getting around the house and farther, to taking showers comfortably and safely.  He’s looked at me a couple of times in wide-eyed wonder and mentioned what a gift it is–that it’s all paid for through Medicare.

“It’s free,” he whispers, not quite believing that this help he’s needed so desperately–that’s allowed him to finally stop thinking grim and drastic thoughts and happily return to everything he still loves and longs for–is his for the asking.

I think it’s hard for all of us to believe right now, that there exists this one small part of our tortured healthcare system that’s actually delivering what we all want it to; relief and a better life.  And saving money to boot.

I just wish everyone understood that more.

The Wildfire Smoke:  It’s awful.  It’s like hell.  Brimstone shit.  I got up the other morning, looked out the front door, and this is what the sun looked like:

Seriously.  No photo shopping.  Everyone is a smoker these days.

Air quality has been in the dangerous zone for a couple of days here but it’s far worse up in the mountains near the fires.  On an air-quality scale from green to red, the town of Salmon, Idaho’s air is rated purple…beyond red.  The mayor just had surgical masks handed out to everyone in town and yet still…the fires are likely to rage until the snows come to put them out sometime in late fall.

Prayers for early snow in the Northwest this year are currently being solicited.  You can just send them up into the air where hopefully the jet stream will blow them into a smoke plume.

And last but not least…

The Garden: Harvesting mode.  Roughly forty jars of pickles canned so far (halfway through), twenty quarts of frozen green beans, a shitload of grated zucchini both frozen and dried, pickled peaches, sun dried tomatoes, a lot of blanched and frozen turnip greens, and dehydrated elderberries coming out our ears.  (Everyone is getting elderberry brandy for the holidays this year.  Good flu fighter.)  Oh yeah.  And winter squash.  Lots of winter squash.  And tomatoes, basil, corn, potatoes, peppers, beets, and eggplants waiting in the wings.

It’s been a good year in the backyard.  Gratitude all around.

copyright Dia Osborn 2012

The differing legacies of good deaths and bad ones, and an extra bonus of grace.

Posted by Dia in Living and Dying and tagged with , , , , ,

Good deaths have a ripple effect that go out for a long, long way, for a long, long time and, unfortunately, so do bad deaths.

I just stumbled across a blog post titled rapture? (not what you think) on Wild Celtic Rose where she describes a personal experience with each kind of death, and she manages to convey the lasting legacy of each far more eloquently than I’ve ever been able to do.  I highly recommend a read if you get a couple free minutes sometime.  (It’s not that long and you may cry from the beauty at the end.  I sure did.)

She also brushes lightly over a couple of other interesting (and loaded) topics.

The first involves the subject of respecting another person’s right to die the way they choose (and one possible cost of not respecting said right.)

The second involves the legal right we all have to forego any treatment and die if that’s what we prefer.

And the third involves that elusive, fragile, and exquisite grace that usually surfaces when faith is respected across a divide in beliefs.  She captures the spirit of this so beautifully when she says (talking about the good death):

“Sometimes we look at other beliefs with skepticism at best.

I can say that the honest, giving, loving, non-judgmental way in which Craig and Nina lived their lives is as “Christ like” as I have ever seen.

I honestly don’t know if there is a heaven or not.

Even though we are of different faiths, I thoroughly believe that if there is one, that Craig is there and he will be joined by Nina and the rest of his family.”

A beautiful expression of how we can still love and be moved by another’s faith without necessarily sharing their beliefs.

I really, really hope you have a rapturous, awakening, living-it-like-it-was your-last kind of moment sometime this week.  We should all be that lucky.

Love,

Dia

Spontaneous Hospice Appears For A Pod of Pilot Whales

Posted by Dia in Living and Dying and tagged with , , , , ,

(Photo of Ed Lippisch by Eric Hasert/TCPalm.com September 2, 2012)

When working with hospice I often had people tell me, “Oh, I could never do that,” and I was never quite sure how to answer them.  Because while on the one hand I could see they were sincere, on the other I knew they were wrong.

Of course they could help care for someone who’s dying.  Bathing and toileting are not rocket science.

A more compelling reason is the fact that compassion, empathy, and the desire to alleviate each other’s suffering is an essential part of human nature.  Sure, you don’t think you can, you don’t want to, you’re scared of it, and you may even feel nauseous at the thought.  But then in the blink of an eye…boom…it’s your loved one who’s lying there so achingly vulnerable and suddenly, not only can you do it, you find doing it totally transforms you.

Never underestimate the power of your own heart.

Here’s a great example of a lot of people discovering over the course of a single day that dying is simply no barrier to loving and caring.  A pod of twenty-two pilot whales beached themselves yesterday along the south Florida coastline and, except for five babies young enough to transport and rehabilitate, the rest wound up dying there.

No one knows why they beached really, it was one of those mysterious whale things, but evidently hundreds of people showed up to help.  From the article on Foxnews.com:

“TCPalm.com reports that hundreds of residents came to the beach to assist with the rescue, helping the animals turn upright so they could breathe better. Volunteers covered the whales with moist towels and poured water over them. Red Cross volunteers helped ensure that volunteers stayed hydrated in the hot sun.

“I think that people want to help animals,” said Jacqui Thurlow-Lippisth, a Harbor Branch volunteer who worked with others to tend to juveniles in a shaded inflatable pool. “Especially whales and dolphins, because they are our counterparts in the seas. They’re mammals, they’re intelligent, they’re social. They’re a lot like us.”

Still, there was a sad undercurrent to the efforts, with rescuers aware that most of the whales were dying.”

I’m willing to bet that, if they’d been asked beforehand, most of the people on the beach that day would have also claimed that working with hospice was something they could never do.  And yet there they were anyway, tending to a pod of strangers whom they knew full well were dying and yet couldn’t bear to leave to do it alone.

Of course we can all do that kind of work.  In fact sometimes, it can be a lot harder not to.

copyright Dia Osborn 2012

I’m more afraid of being overtreated for dying than I am of dying from it.

Posted by Dia in Living and Dying and tagged with , , , , ,

I’m still plugging away at completing the old advance directive I started way back in February.  I know a lot of people say just do it….  

Just.  Sometimes I hate that word.

Although frankly, I didn’t think it would be that big a deal when I started either.  But clearly, my inertia is telling a different story.  The hubster and I actually filled out the forms months ago and, as expected, that part really wasn’t a big deal.  We educated ourselves, we weighed our choices, we made our decisions, and we wrote it all down.

Check.

It’s the next step that’s killing me.  All the follow-up conversations I’m supposed to have with loved ones, alternate medical proxies, and anyone else who’s likely to get involved if I ever hit the point where I can’t make medical decisions for myself.

Fear is a powerful, powerful thing.

But finally, last week I sat down with the friend I’ve asked to be my medical proxy in case the hubster can’t do it and we started feeling our way through the labyrinth together.  It was a fascinating conversation and helped me to really boil things down to my own bottom line.  After some initial flailing and panic while trying to explain, there were a couple of important realizations I came to that helped settle me back down.

A FEW BASIC TRUTHS ABOUT MYSELF:

1)  What happens to the hubster and kids during that kind of crisis is as important to me as whatever is happening to me.  I love them and I don’t want their needs or wishes disrespected or ignored anymore than mine.  Even though it’s not my first choice, I’m absolutely willing to go through some additional suffering and linger for a while longer if they need the extra time.

2)  Money is a very big issue for me.  I do not…DO NOT…want a massive wealth transfer happening at the very end so that nothing’s left afterwards for the hubster and kids.  So don’t anybody feel guilty about considering the financial consequences of any decision.  In fact, feel guilty if you don’t.

3)  Control is an illusion.  All I can do is try and communicate now the best I can.  In the end though, whatever is going to happen, will.  I need to try and remember that, breathe, and surrender again. (And again and again and again.)

4)  The one, single, most important, overriding principle I need everyone to remember and steer by is this:  I’m more afraid of being overtreated for dying than I am of dying from it.

So in a choice between erring on the side of choosing too little intervention or choosing too much, always, always, always err on the side of too little.  I’ve lived a huge and magical, unexpected life full of wonder, surprises, love, companionship, adventure, learning, and near constant amazement.  From a distance, I haven’t really minded the pain all that much.  If I was to go tomorrow, I’m so very, very, very good and grateful with it all.

So the bottom line is you don’t have to worry about cutting me short.  You can’t.  It’s impossible.  Honestly?  I kind of can’t believe I made it this long.  You guys just take whatever time you need…(just again, sometimes I love that word)…to get your hearts wrapped around the whole thing and say your good-byes, and then let me go.

And remember…I love you.  I’ve always loved you and I always will.  There are some things that can’t be killed.

copyright Dia Osborn 2012

When does living stop and dying start?

Posted by Dia in Living and Dying and tagged with , , , , ,

This is the kind of question I understand repulses most people but for some reason fascinates me.  It’s not so much about dying…I think…as it is about transitional zones in general.  For me, they’ve always been the place where everything interesting is going on.

I ask the same kind of question when I’m lying around up in the mountains and watching the sun set…at what point does it turn from daytime into twilight and then into night?  Or standing on a beach and watching the waves roll in and out…where are the lines that define where land becomes coast becomes sea?

Where do the colors really change on a rainbow, or is there an exact moment when a marriage fails, or at what length of tail can you stop calling it a tadpole and start calling it a frog?

These kinds of questions have always struck me as important even though I’m not entirely sure why.  Maybe they give me a way to puzzle through the nature of change and the necessity for it?  Or perhaps it’s because I’m not very good with loss and transitional zones all involve losing one thing as it changes into something else?  Maybe I think about it a lot because I’m still trying to learn how to say good-bye, let go, and look forward again?

Or maybe it’s just how I was born.  I mean, really.  Who knows why any of us are fascinated by the things that we are?

But back to the original question, when exactly does dying start?

I used to unconsciously believe that it started when a doctor said that it did.  At that stomach sinking, deer-in-the-headlights moment when a person was told, “I’m sorry.  There’s nothing more we can do.”

Did anyone else think that’s when it starts?  And that everything that happens before that horrible moment…all the whirlwind of treatments and waiting and bad news and worse news and more treatments and uncertainty and all the fear…is still living?

That’s what the journey of dying looks like so often these days.  Plunging into diagnosis and treatment can be so much like being caught up and tumbled in a huge, breaking wave that scrapes you along the bottom and nearly drowns you before finally washing you up on shore, beaten, battered, and gasping…only to be told that now you’re going to die.  Honestly, thinking about it like that absolutely terrifies me. I’m not all that worried about dying but I’m petrified of being over-treated for it.

But anyway, once I started to consider the question, and once I realized what my default answer was, I started observing more closely what was going on in my work and eventually discovered a couple of things that helped reshape my answer and ease that scary feeling a lot:

1)  In hospice I learned about a thing called “active dying.”  It’s when the body starts to go through the final shut-down sequence…when you get what’s called a “cascade of organ failure.”

(For the record, I really dislike that term.  Watching a body shut down never looked like failure to me.  On the contrary, it looked like a brilliantly…BRILLIANTLY…conceived protocol designed to both protect us from further horrendous suffering, as well as extract us from a clump of physical matter that’s starting to break back down into it’s essential elements for future life.  To me, active dying looked just as miraculous and sacred and wild as birth ever did.)

The period of active dying is relatively short, lasting from a couple of days to a few hours and, in my evolving understanding anyway, became the clearest definition of when dying actually starts.

I have to admit, that conclusion really surprised me.  It turned a lot of the standard cultural view I grew up with on it’s head.  It even messed with the entire basis for referring a patient for hospice care in the first place, as they’re supposed to be dying to qualify.

And yet, it also explained something that hadn’t made sense up to that point.  When I first volunteered with hospice I thought I was going to work with “the dying.”  And yet I quickly discovered that the extraordinary people I was meeting were actually living.  Times ten.  In fact, probably more than most of the not-dying people I knew.  I quickly surmised that I’d been laboring under a misperception, but it wasn’t until I finally figured out that dying doesn’t start until the very end that the nature of that misperception became clearer.

So for me, in strictly physical terms anyway, dying starts when our bodies enter the “active dying” stage.  And everything that comes before that, no matter how turbulent or ominous or final, is still living.

So when a doctor delivers that terminal diagnosis…we’re still living.  And when we get referred for hospice care…we’re still living.  And when we start losing our appetite, energy, and bowel control and maybe can’t even get off the bed, I’ll be danged if we’re not STILL living.  Maybe in a period of uncomfortable decline which is a definite bummer, but bummers have always been a part of living, too.  So, so what?

And that was the second thing I figured out which helped ease that scary feeling.

2)  Life and death, and living and dying, are completely different things.

Life and death are nouns.  They’re things that exist as an independent fact, like cell division and tooth decay.  They’re built into the system itself so they happen to us whether we deserve them or not/want them or not/appreciate them or not.  First we’re dragged into life without any discussion and then we’re dragged back out again and, ultimately, we have zero power at either end.  Granted, that’s a little unnerving but I still find the simplicity of it appealing.  Turns out life and death are not…thank you God…something I have to try and control after all.

Living and dying on the other hand are verbs.  They’re the smaller, more manageable ways that we get to participate in these vast and fundamental forces.  Whereas we have no say whatsoever about life and death, we have enormous power over how we choose to live and die within them.  How we choose to deal with them and face them (or not.)  Depending on our inclination, we can turn either one into something meaningful, generous, and humbling or something ugly, painful, and degrading…or more likely a little of both.  We are human.

In any case, that part of it is all up to us.

Which I love a lot because I need something to control.  (As the hubster can testify.)  I will happily give up trying to control life and death as long as I have living and dying to strap into the harness instead.

So back to the original question of when exactly does dying start, over time I’ve found it most useful to think of in birthing terms of all things.  It goes kind of like this:

Life enters the world in in four stages; conception, pregnancy, labor, and delivery.  From where I’ve been standing it looks like it heads back out along the same lines.

1) Conception, for me, would be the moment when I first realize I’m officially heading for the exit.  This is it.  I’m going to die.  I think this one might be the hardest part.

2) Pregnancy would encompass most of the time I have left and would involve all the many and varied preparations required for death; wrapping up my life, finishing all the paperwork, giving and receiving any forgiveness, savoring all my “last times,” navigating all the tricks of a body in decline, saying my good-byes and thank you’s, making damn sure everyone knows how much I’ve loved them and, finally, making my peace.

3) Labor would be the briefest part and would constitute the active dying process.

4) And birth?  Well, to be honest…it’s always kind of looked like birth is happening at both ends to me.  If there’s one thing I’ve learned from studying all these different transitional zones over the years it’s that endings and beginnings are pretty much the same thing–a moment of conception.  I know there are a lot of different theories out there about what’s going to happen after death…and I think they’re all pretty interesting…but I, personally, have no idea what the exact nature of my death/birth will be…and I like it that way.  It makes it all seem like more of an adventure.

But I do know this; in all the time I spent in the rooms of “the dying” I never once saw life itself destroyed.  On the contrary, with each person’s passage I saw it becoming something more vast and measureless than I’d ever understood.

Here’s a photo I took in the Olympic rainforest that captures a little bit of that feeling for me.  The physical part of it anyway.  (Rainforests are like the transitional zone incarnate.  Changing from one thing into another is all that ever goes on in there.)  This is what’s called a “nurse log.”  It’s when one of the old giants falls to the forest floor and magically becomes a raised and fertile world for countless new seedlings to begin their tiny lives.  Nothing wasted, nothing destroyed…only transformed and renewed.

copyright Dia Osborn 2012

Someone Else Wrote My Book. What Now?

Posted by Dia in Living and Dying, Writing and tagged with , , , ,

I’ve been working on a book about my time with hospice for about five years now–or rather working on it for two years and then procrastinating for three.  On the advice of an agent, I originally started this blog to build an author platform and then got hijacked.  Publishing blog posts is a lot more fun and immediate than slogging away for years on a book that may or may not ever see the light of day.

But while I was thusly blog-distracted, some upstart hospice nurse back east snuck under the police tape and wrote my book before I could finish.  It’s called Transitions by Becki Hawkins and, while I haven’t read the book yet, I did read the press release:

For the most part modern western culture has distanced itself from the celebratory and positive aspects of the dying process, instead either ignoring it, or focusing on only the negative aspects of death…Becki felt there was another more joyous and beautiful side that she was learning from her patients that she wanted to share with others.

That’s exactly what I was going to say.  Shit.

Now don’t get me wrong here.  There does lurk an altruistic/decent person inside me who says thank god and good on her for getting the word out when I was too lazy and undisciplined to get it done.  Ms. Hawkins’s accomplishment is everything good and noble and generous, and Transitions is a wonderful boon to the world and thank you a million times over for writing it.  There.

But I’d be lying if I said there isn’t also a poisonous/jealous writer in a dark corner of my soul, nursing a double and hissing a pox on her for stealing my idea.  (Inner writers are all neurotic, not just mine. Hold the stones please.)

So what now?  Do I shoot my languishing book in the head and put it out of its misery once and for all?  Or do I buck up and take the immortal words (and graphics) of Chuck Wendig over at Terrible Minds to heart?

Well, I’m either a writer or a masochist because I printed this puppy off and taped it up on half the cupboards and all the mirrors in the house.  Guess I’m still in.

The other voice haunting me belongs to the ever wise and balanced Linda over at Rangewriter, and in its own way, is both finer and more compelling.  After being informed that my book was already written, she thought about it for a second then gently asked:

“Do you think one book on this topic is really enough?”

That sobered me.  I looked up from my whiskey and suddenly recalled this one basic truth I heard about writing once that I’d somehow forgotten:

Everything under the sun has already been written about before.  There is no…NO…such thing as a new topic.  Ever.  There are only new voices to express them in different ways, and each one of those voices is important because there’s at least one reader waiting out there that only that voice can reach.

So, do I really think that one book about the joyous and beautiful side of dying is enough?  That Ms. Hawkins and Transitions can (or should) carry the entire burden alone from here?  That all the mindless terror of dying out there in the world has now been forever eased?

Probably not.

But truly, even if her book WAS enough–even if that one truth I know about writing turned out to be sheer self-delusion and there wasn’t really a lonely reader waiting anywhere out there for my unique voice to reach –I could still fall back on this completely selfish reason and finish my book anyway.  It’s from Mr. Wendig again, from his post 25 Things I Want To Say To So-Called “Aspiring” Writers, and comes in at #24:

“As a writer, the world you create is yours and yours alone. Someone will always be there to tell you what you can’t do, but they’re nearly always wrong. You’re a writer. You can make anything up that you want. It may not be lucrative. It may not pay your mortgage. But we’re not talking about that. We’re talking about what’s going on between you and the blank page before you. It’s just you and the story. If you love it and you want to write it, then wire your trap shut and write it. And write it well. Expect nothing beyond this — expect no reward, expect no victory parade — but embrace the satisfaction it gives you to do your thing.”

Amen to that Chuck.  Back to the keyboard.

copyright 2012 Dia Osborn

Preventive Cancer Screenings: “Serpentine Shel! Serpentine!”

Posted by Dia in Living and Dying and tagged with , , , , , ,

I talked about the terrible experience we had last year as the result of a false positive PSA test for the hubster in the post False Positives Are The Tenth Circle of Hell.  Since then, I’ve been following closely as the U.S. Preventive Services Task Force tackled the question of whether PSA tests do more help or harm and am am not surprised that, today, they announced the answer is harm.

There’s an opinion piece in CNN.Opinion today, by Otis W. Brawley, chief medical and scientific officer of the American Cancer Society and professor at Emory University, where he eviscerates the practice of mass screenings for PSA that has become the gold standard.  Particularly chilling is his memory of a discussion he had with the marketing executive of a major American hospital fifteen years ago who was explaining his lucrative “prostate cancer business plan.”

As he explained it, for every 1,000 men over age 50 who were screened at the mall, 145 would have an abnormal screen, and 135 would go to his hospital for evaluation. Fees collected from them would easily cover the cost of the free screening event. About 45 in that group would have cancer; the rest would be false positives.

The marketer had figured out how many men would be treated with surgery, radiation, and hormones. He had estimates of all the money the center would make from treating all 45 cancer cases. He knew how many men would be treated for urinary incontinence, and what his net profit for treating that would be. Amazingly, he even knew how many of the men would want penile prostheses surgically implanted to treat their impotence.

I asked him one question: “How many lives will you save if you screen a thousand men?” He looked at me as if I were a fool, and said, “Don’t you know? No one knows if this stuff saves lives. I can’t give you a number on that.”

I’m keenly aware and deeply grateful that the adverse effects of this test on our lives were relatively small.  An invasive and potentially dangerous biopsy is as far as it went.  There are a lot of men out there (about a million) who fared worse.  I’m also aware that with a family history of the disease, the hubster is at higher risk than the average man and a false positive on the last test doesn’t mean he’s now bullet proof.  Future PSA tests are by no means off the table but they’ll be approached with more caution and far better reasons in the future.

What makes me so angry is that the considerable risks involved were either not explained to us fully or glibly dismissed before the hubster obediently began the regimen of annual PSA testing.  Pretty much all we heard for two decades, in the media and in doctor’s offices, was the mantra-like assurance that it saves lives, this in spite of the fact that there was no direct clinical evidence to support that claim.  It blows my mind that the first clinical trial suggesting that PSA mass screening does save lives wasn’t published until 2010, and even then the trial had internal inconsistencies that make it suspect.  From Otis Brawley again:

 It showed screening saves lives in the Netherlands and Sweden, but not in five other European countries. Even the positive parts of that study did not show a considerable increase in lives saved.

It makes me wonder what really drove the push for mass screenings over the last twenty years?  The above mentioned hospital marketing executive springs to mind.

The good news is that everything we went through with the hubster’s PSA false positive broke trail for my own more considered, skeptical, research-laden approach to the mammogram alarm I received shortly thereafter.  Before the PSA fiasco I, too, would have obediently returned to the hospital for further scans and a probable biopsy (considering the incredibly vague nature of what was flagged on my original scan.)

But because we were already once burned, I dug in and started looking for more information.  I discovered that with all factors considered I’m actually in the lowest risk category for breast cancer, that an “architectural distortion density” is basically a last shotgun-scatter call for a radiologist practicing defensive medicine, that the rates of mammogram false positives range anywhere from fifty to eighty percent depending on who’s talking, and that no less than five different factors put me in the highest risk category for a false positive diagnosis.

I also learned that once a woman has one false positive, her mammograms are at much higher risk for being flagged again, and that women with false positives receive more diagnostic scans and resulting radiation exposure than women who actually have breast cancer.  Add to all that the fact that the rates of antibiotic resistance infections received in clinical settings are increasing at a clipping pace, and I decided that a biopsy should probably be avoided if at all possible.

Weighing everything I learned, I eventually realized that if I adopted a watchful waiting approach, the odds were in my favor for a good result.  I was right.  After waiting for eight months I finally went back for a follow-up mammogram that could be reasonably compared to the first one, and the new scan was deemed clean.  Nothing had changed indicating nothing was growing.  I was satisfied.

Granted, as a depressive, I still lost most of last year to the threat of slipping into another episode from all the stress and anxiety, but at least I managed to avoid most of the physically invasive fall-out.  And for last year at least, that was enough.  However, in the future I’ve decided not to pursue annual screenings unless I find a lump.  For me, the risks outweigh the benefits.

And that’s the main takeaway I’d like to offer with this post.  Each person is completely unique and there is no medical screening, procedure, or treatment out there that is a one-size-fits-all solution.  On the one hand, be skeptical.  Ask questions.  Do research.  Learn from past mistakes.  Make educated choices and, if your doctor doesn’t provide you with all the information, then go out and get it on your own.  Whether you’re confident in the continuing value of PSA tests and mammograms or not, make your own decisions based on what you feel is right for you.

But on the other hand, respect and support the directions that others are exploring, too, even if they’re different directions than you would take.  I felt mostly alone last year, trying to figure out what to do, because almost everyone I tried to talk to went straight to an expectation of the worst possible outcome.  I could see it in the back of their eyes, that dark flash of terror like they were looking at a woman who was about to be dead because she wasn’t doing what she was supposed to.

I’m not anti-preventive screening.  Far from it.  A pap smear in my twenties probably saved my life and, even with all the other chaos going on last year, the hubster and I both still got our colonoscopies.  But honestly, most of my preventive energy and attention goes into how I live because after working around the dying I finally got it, how little power we’re ever going to have where death is concerned.  I don’t want to waste the precious little time I have tilting at windmills.

I’d rather just live openly with death as my inevitable companion.  I’d prefer to amble around, and graze, and play, and explore the meadow of my life, relaxed and peaceful…and then die…rather than trying to zig zag back and forth across it (Serpentine Shel!! Serpentine!), bent over through the grass trying to hide from it all the time…and then die.

Because that’s exactly what I felt like last year; Alan Arkin trying to dodge bullets in the original The In-Laws.  And pooh on that.  I remember again the wisest thing my father…a grizzled, old warrior with a couple of gruesome wars under his belt and a vast experience of death…ever said to me:

Dia, if it’s your time to die then it’s your time to die, and nothing’s gonna save you.  But if it’s not your time to die, then it’s just not, and there’s nothing out there…nothing…that can kill you.

As a parting gift, here’s one of the funniest movie scenes of all time: the serpentine scene from The In-Laws.  Watch it and weep.

copyright Dia Osborn 2012

Your Early Exposure to Death: Was It Scary Or Curious?

Posted by Dia in Living and Dying and tagged with , , , , , ,

“Children do not respond to death as adults do. Their normal reactions are much more natural, curious and varied, until that is changed by the adult world”.  From Children and Pet Loss.

(This post follows Five Major Influences that help Shape Our Acceptance Or Fear of Dying and Death.)

Before I start, I want to say that every person is unique, so of course the relationship they forge with death over time will be unique, too.

It’s like a lifelong dance we do; each successive loss is a new partner that whirls us about the floor for however long it lasts, then drops us in our chair by the wall again.  Every encounter is different and our perspective on dying evolves with each one.  As John Gray over at Going Gently wisely reminds me from time to time, there is no right or wrong way to look at dying.  Each person’s experience just is what it is, and that makes it absolutely true for them and deserving of respect.

Having said all that, it’s also important to remember that both trauma and beauty are inherent in the dying process.  And with increased, gentle awareness, it’s possible to help ease the first and strengthen the latter.  (That’s actually one of the main goals of hospice and palliative care.)  In practice though, this shift happens a lot faster with a person who’s already open to the good.

I guess what I’m trying to say is that, while there really is no right or wrong way to look at dying, there are some perspectives that might be more helpful than others.  (Of course, anyone currently reeling with a loss is sacred and off-limits.  Period.  I’m not talking about you trying to change anything right now.  You have enough on your plate.)  But for the rest of us, it wouldn’t hurt to consider at least trying to tweak our view of dying before our next up on the dance floor.  It could make a difference.

So what shapes any given perspective?

Well, early impressions sure pack a punch and go a long way towards forming our view of dying thereafter.  There are a number of variables that feed into whether our first brush with death leans toward the strengthening or scary side, but the top three would probably include, 1) how big the loss is, 2) how the people around us respond, and 3) the manner of the death.

A friend of the hubster’s came for a visit a couple years ago, and when we ventured onto the topic of my work with hospice and my perspective about the beautiful side of dying, he disagreed that there was anything beautiful about it.  He related the story of his first experience with death and, truly, it was not a good one.  He lost his father to illness when he was in his teens, a time when he was particularly vulnerable and unprepared, and he was still, some forty odd years later, carrying a burden from that loss.  In his experience, dying really had been something bleak and terrible; there wasn’t anything good involved to help counter the pain.  Dying was a force that stripped him of the father he still desperately needed and then left him struggling alone in the vast hole it ripped in his life.

So when I spoke about the beautiful side of dying I encountered in my work, he looked at me like I was speaking Swahili.  Because beauty had played no part in his primary encounter with death, it was difficult for him to even consider it as a possibility.

My aunt had a similar devastating encounter with death when her husband died in his forties of colon cancer back in the eighties.  The battle for a cure beforehand had involved five years of grueling, toxic, and unproductive treatment and then, on top of it all, towards the end of the fight his pain was poorly managed (as happened more often than not, back then.)  His death was not pretty and the scars it left for my aunt were profound.   So when my grandmother, her mother, died a peaceful, easy death a little while later, my aunt declined to be in the room when she passed because her prior experience made her believe that dying, by nature, is gruesome and harsh.

I always wondered (privately of course, I never said anything to her) if being present at my grandmother’s benign death might have helped heal some of the earlier trauma but, of course, there was no way to know.

But then my mother, her sister and best friend, died a few years ago and my aunt wound up accidentally being in the room when she passed in spite of her intention not to.  The moment was profoundly beautiful for all of us assembled, a final gift of grace from a woman whose life had been all about love, and it provided me with a means of finally learning the answer to my question.  When I asked my aunt about it later she answered that, yes, witnessing my mother’s good death really did help ease the burden of horror she’d been carrying for so many years.  She felt a little more peaceful with it now.

It was a revelation for me…the realization that our initial perspective on death isn’t written in stone.  That, if the luck of the draw brought us a difficult first death, we’re not helplessly doomed to tremble at the thought forever after.  It is possible to ease some of the fear of dying and create a measure of peace.

Of course first brushes with death don’t always involve a primary relationship, in fact they usually don’t, and these milder, less threatening experiences can provide an opportunity to get one’s toes wet a little at a time.  One of the most common ways that children get a first look at death is through the loss of a family pet or other animal, and these encounters provide a golden opportunity for teaching them how to navigate the dying world with courage and strength.  Children take their cues on how to respond to death (and everything else for that matter) from the adults around them so it’s important what we model for them.

I found the following story on a forum where people were discussing the potential value or harm, for children, of holding funerals for a pet.  I thought I’d include it here because it’s such a great example of how a parent’s response can so profoundly shape a child’s perspective of not only death, but the value of life:

“My parents’ dog died at home when I was two and a half — they hadn’t wanted to put him down at the vet’s. I recall him quite vividly lying there on the kitchen floor on some sheets of newspaper, and I also remember the questions I asked my mom and dad as I grappled with what had happened. I asked if I could pet him, and they said that would be okay. They were quite attached to the dog, which they’d gotten before they were married and had been a fellow-traveler with them in their journey together, and so they both cried a little. I remember trying to comfort my mom, telling her it’d be okay. Later, I watched my dad dig a large hole out in the woods, carry Jonathan out in a fuzzy red blanket, bury him and mark the spot with a large piece of white quartz.

I was very clear on what was happening, for the most part, even at two and a half. I think your daughter would be fine with it at six.

Those events left a very strong impression on me, evidently: they’re my very first memories. Though sort of melancholy, they’re by no means bad memories. My dad still lives in the same house. Occasionally, when I go back home to visit, I notice that piece of quartz a little way out in the woods, half-buried in leaf litter. I think: that rock is a testament to a life not taken for granted.”
posted by killdevil at 11:39 PM on May 24, 2007 [28 favorites]

For anyone looking to learn more about how to guide children through the loss of a pet (or anyone struggling with the loss of a pet themselves) The Association for Pet Loss and Bereavement has a really terrific website.  A lot of people deny that the loss of an animal relationship can be just as devastating as the loss of a human one.  Whoever runs this website is not one of them.

So our early exposure to death goes a long way towards shaping and sizing our lifetime fear of it, but that still doesn’t mean it can’t change.  I’d love to hear some accounts of other people’s first exposure to dying or death.  Did it influence you more towards acceptance or fear?  (Or no influence at all?)

In the next post I’d like to talk about the influence of the attitude of those who teach us about death.

copyright Dia Osborn 2012

Five Major Influences That Help Determine Our Acceptance Or Fear Of Dying and Death

Posted by Dia in Living and Dying and tagged with , , , , , ,

Vitruvian Macrocosm

Anyone who’s been following this blog for a while knows that I don’t believe dying and death need to look as terrifying, crippling, or hopeless as they’re so often portrayed in American media and culture.  (Dying and death are two completely different things by the way. I wrote about the difference in the post Dying Is Still Alive a while back but it’s important enough to mention again here.)  In the U.S. we live in a profoundly death-averse culture that has not only stripped out most of the beauty, grace, and strength involved, it’s taken the innate sadness, loss, and suffering of the dying process and blown them up a hundred times bigger than they already were.

Which is a common function of denial.

I’m deeply concerned by the pervasiveness of this bloated kind of fear.  Partly because of the driving role it plays in the unsustainable costs of our health care system, but more because of how much harm it does to people in their everyday lives, a harm that a lot of people don’t even realize is there.  Living with the kind of chronic, low grade terror that comes when one doubts they’ll be able to handle dying when it arrives, is very hard on a person’s basic sense of security in life.  It’s like trying to enjoy a journey down a magnificent river when you know there’s a Class 5 rapids up ahead somewhere (nobody knows the exact location) that’s gonna beat the shit out of you when you get there because you lack the knowledge and skills to navigate it successfully.  Under those circumstances who can relax for very long?

Part of what I’ve wanted to do with this blog is to try and counter some of the negative effects of this pervasive, cultural aversion we have.  To try and rebuild…by talking about the particulars of dying in a normal, unafraid kind of way…some awareness of, and confidence in, the native abilities we were all born with that help when the time comes.  It’s never been my intention to try and eliminate the fear of dying completely because, frankly, I don’t think that’s wise.  Some fear of dying is actually helpful and necessary if we plan to survive for very long as a species.

But I do want to try and ease some of the excess, buried terror I so often glimpse in the back of people’s eyes, to see if I can’t offer something that might help shrink that part of it back down to a size they can live with.  Happily.  Safely.  Confidently.  With an abundance of hope and optimism about their own dying time, whenever it comes.

Pipe dream?  I honestly don’t think so.  There are some practical steps people can take to ease their fear, if they ever want to.  What I’d like to do with the next few posts is talk about five of the things that have a big influence on whether a person is more likely to accept or fear dying, and then identify which ones we have some control over, and what we can do to try and change them if need be.

Five Major Influences That Determine Whether We Accept or Fear Dying and Death:

Influence Number One:  The quality of our first exposures to dying and death.  This includes things like, a) How old we were when we first encountered it, b) How old the person dying was when we lost them, c) How close our relationship was with the person dying, and d) The nature and graphic details of the dying and/or deaths that we witnessed.

Influence Number Two: The attitude towards dying and death of those who taught us about it.  If they were afraid of it, we probably learned to fear it, too.  If they couldn’t, wouldn’t, or didn’t know how to talk about it, we probably learned that it’s a taboo topic to be feared and avoided.  If they were unfamiliar with, but curious about it, we were more likely to feel safe thinking about it and exploring it ourselves.  And if they were familiar and at peace with it, then chances are higher that we’d become familiar with it and learn to accept it, too.

Influence Number Three: How much and what kind of knowledge we have about the details of dying and death.  The less we know about it, the greater the likelihood of fear due to the unknown factor.  However, partial knowledge can be even worse. If we know a lot about the difficult aspects of dying but nothing about the beautiful side, there’s likely to be some additional irrational terror on top of our fear of the remaining unknown.  But if we know both the difficult and beautiful details about it, we’re far more likely to harness a courageous view of dying, as well as make a plan for navigating our own when the time comes.

Influence Number Four:  Our level of practical familiarity with dying and death.  I’m talking about hands-on, in-the-room experience here as versus just philosophical knowledge.  An increased familiarity with, and tolerance of, the nitty gritty, physical details involved is usually helpful where easing fear is concerned.  But only as long as the quality of the dying and death being experienced is good.  When the dying process swings the other way and is out of control, hopeless, violent, or otherwise horrible, then it’s more likely to just confirm our worst fears.  A bad death is not a great situation for novices, but of course sometimes that just can’t be helped.  See Number One above.

Influence Number Five:  What meaning we assign to dying and death.  This influence is perhaps the greatest of them all.  The meanings we weave are completely unique to each person and will usually be a product of the accumulated experience from the previous four influences.  It’s important to remember that this one is constantly evolving, and that it can (and probably will) swing back and forth between a negative and positive view over time.  It’s very heavily influenced by the quality of the deaths it’s exposed to (including movie deaths, news stories of deaths, etc.) The greater the frequency of good deaths that we hear about, witness, or participate in, the more positive our meaning about death is likely to become.  And vice versa.  I believe a person’s aggregate exposure to good deaths vs. bad deaths is the strongest indicator of whether a person will view dying and death in a positive or negative light.  I believe this exposure is an even stronger indicator than a person’s religious or philosophical beliefs.

(This is why I feel that striving for a good death might almost be considered a social responsibility.  Not only because it’s absolutely in our own best interests to die a good death, but because the legacy of a bad death is so powerful and lingering that it can sometimes harm, cripple, or even destroy the individual lives left in its wake.  I’ve seen the influence of both good and bad deaths first hand and I assure you, the difference for survivors is profound.)

In the next post I’d like to discuss how our early exposure to dying and death plays a big role in shaping our view (for better or worse), but how a subsequent brush can shift or change it again.  I’ll share a few stories that I think might be interesting.

copyright Dia Osborn 2012

Dead Bodies Need Love, Too

Posted by Dia in Living and Dying and tagged with , , , , , , , ,

…only I think more for our sake than theirs. 

In the last week I had two different friends tell me stories about the death of a close family member and the extraordinary experience they had with the body afterwards.  In both cases the body was handled in a way that’s unusual by American standards, yet both women told me (with deep conviction) that it made all the difference in helping them cope with the loss.

The first is a friend who’s older brother died last year of a sudden heart attack in his early sixties.  He lived and died in a different kind of community in the midwest where a lot of people practice a spiritual discipline with deep roots in the Indian Vedic tradition. Naturally, his cremation was attended with some of the chanting and ritual derived from that part of the world.  It involved an open casket viewing in a small room within the crematorium following the funeral itself.

The ceremony was beautiful, heart wrenching, and mesmerizing to watch.  My friend had a small video that was given to family members, and she shared it with me.

Only the most intimate friends and family members were allowed to attend.  Once everyone was seated a woman, who’d evidently spent a number of years in India learning how to do it, gave a brief explanation of the ceremony and then began singing what had to be one of the most beautiful, soothing, dynamic songs I’ve ever heard.  The words were in Sanskrit so I couldn’t understand any of it, but the melody, repetition, and deep resonance of the woman’s voice was like being cradled in strong arms.

All of the (many, many, many) flowers from the funeral had been brought into the room and two women were busy in a corner stripping all the petals and placing them into a basket near the head of the casket.  As the main woman sang that unearthly song, everyone in the room stood up and began to file past the body in a circle, picking up a handful of petals out of the basket each time they passed and sprinkling them over him as they whispered their final good-byes.  

At first I was just struck by the surprising beauty of the whole idea.  But then, as I watched his white face…his entire body…. vanishing beneath the deepening layers of soft, tender flower petals, I got it.  How much kinder and gentler this was, how much truer to both the profound love and profound loss of the people in that room, to bury him in flowers rather than dirt.  It took my breath away.

His mother nearly collapsed her first time around, under the unbearable weight of her grief.  But it seemed to get easier for her after that.  My friend told me that more than anyone else, the ceremony helped her mother come to grips with the loss.  Neither Friend nor any of her other family members actually lived in that community.  They’d all dropped their lives to travel from across the country, stunned and stricken.  Friend confided that initially she, herself, was reluctant to view his body, to see him like that.  She wanted to remember him as he was.  But then somehow as she watched him disappear beneath the flowers, the pain and shock of his death was transformed into something else.  Something more manageable.  Closure, she said, and her eyes looked unutterably grateful and sad.

Eventually, they all went down to the furnace and, together, rolled his body in.  But by then they were ready to let him go…which I realized was the ceremony’s intended gift.

My other friend’s loss happened at the other extreme.  She lost her elderly mother after a decade of slow, horrendous decline.  In fact, her slide had taken so long that when she finally…finally!…began actively dying it was hard to get her doctor to believe it.  In the end she was only transferred over to hospice care a scant three days before she died and this made my other friend sad.  She would have liked the extra time necessary for everyone to gather and say their good-byes, to turn their familial head downward toward the birthing canal, preparing for their transition into the next world without her.

Then she told me how they didn’t call the funeral home right away, to come and collect her mother’s body afterwards.  Instead they kept her at home for a night so she and her daughter could sleep beside the bed, one on each side, loving it through the first long, dark hours of its new state.  They called in the morning and watched her taken away in the brighter light of day.  My friend shared that, by then, she was ready to let her go and I recognized that closure thing again.  That elusive, emotional line we all have to track down inside ourselves and cross before we get to begin our ascent back up the other side.

In both these stories I was struck by the double loss we experience with the death of a loved one…how we lose both their them-ness AND their body…and how important it can be to separate the two and honor them both.  Not only as a final gesture of respect for our departed, but for our own healing as well.

first photograph: Cherry Blossom at Washington Memorial by porbital

second photograph: A Study in Pink by Maggie Smith

copyright Dia Osborn 2012