Random Hot Tip About Dying #1 and Follow Through

Finish

(This photo is borrowed from an excellent post on the blog Prof KRG dealing with the same challenge from a different angle.  Useful stuff, here.)  

There are two things I’d like to cover in this post:

1)  Finishing (or not) what I start.

2) Explaining Hot Tip #1 About Dying from my last post as I (hinted suggested prevaricated half-promised wiggled and sleazed) mentioned I might.

Finishing what I start.

Follow through, where writing is concerned, is not my strong point.  I know it.  My writer’s group knows it.  Anyone who’s seen the three-year old I gotta copyright it for the book, man… notice in my sidebar and yet can find nothing else about the book anywhere on this blog has probably figured it out by now.  I’m in serious danger of turning into a writer’s cautionary tale, an Aesop’s fable about what happens when you never actually finish any of the writing you start.  (Hint: You eventually turn into a fattening, graying dilettante who spends the rest of her life writing flashy first chapters and then basking in the dwindling number of wows she gets from the dwindling number of readers who have a dwindling tolerance level for that kind of tease.)

I’m not there yet although my fear of it is rising exponentially because I’ve just launched my fourth major assault in six years on this book I’m trying to write.  It’s morphed from non-fiction into creative non-fiction into fiction.  From a kind of helpful guide into a memoir into an imaginary story.  It looks nothing…nothing…like any previous version and deep down I’m now terrified that I’m just swimming around in circles but consoling myself that at least I’m covering a lot of miles.

There are only two possibilities left:  Either it’s a structural/voice problem as I keep telling myself, or it’s a basic discipline/courage problem.

And actually, as I was writing the above I realized it’s both.  But the second problem is bigger.

It’s not that I don’t spend hours writing everyday, I do.  My butt time is duly noted and logged every morning just like it’s supposed to be.  No.  The problem is that I spend those hours writing, then rewriting, then micro-rewriting the same sentence/paragraph/page over and over again because I’m absolutely terrified of writing something that will make me look stupid/bad/inept/untalented, and because it’s a whole lot less risky to edit than create.  (Like right now I’m thinking of shelving this post because it’s already too long and who cares about my writing process anyway you narcissist and why can’t I just distill it into the heart and soul of the thing instead of using three million fucking words for a blog post and I’ve now reread/tweaked this paragraph seven times because I’m too scared to keep going…you get the picture.)

This has got to change.  Today I’ll take a stab at it with a baby step.  I’ll follow through on something I wanted to do after my last blog post, which brings me to my second object with this post:

Explaining Random Hot Tip About Dying #1 from my last post.  For those who don’t remember, the tip goes something like this:

“Dying is as much a gift as it is a punishment.  Pick which view to invest in carefully as it will affect your entire life.”

The gift-part can be a little difficult to see, especially if you’re not that familiar with dying. But there are actually a lot of gifts and they tend to be profound.

(Like, for instance, if I never finish my book at least I’ll eventually die and be done with it.)

I’m kidding…kind of…but it’s still true.  For me, as a long-time depressive, the knowledge that none of the dark periods I cycle through can last forever has lent me endurance more times than I can count, and actually saved my life on the two hardest days when I finally lost hope.

The dying people I worked with gave me another gift I’ll never be able to repay. It was while I was with them, listening to all the stories about living from those facing certain death, that I finally learned the secret of  how to long for my own life.

They also taught me about how dying can be a final act of generosity, a way of saying I’ve loved this life so dearly but have taken enough for myself. It’s someone else’s turn now, to come into the world and stand where I’ve stood, to love what I’ve loved. Thank you.

And in allowing me to watch the way their beautiful, tender, wasting bodies were unravelling and vanishing they taught me about the difference between life and Life.  How biological existence is one kind of luminous miracle, how the consciousness rising within it is a second, and how the love those two things wind up generating between them is the third and greatest miracle that transcends and outlasts them both.

But I’m getting mystical again…which, honestly, I can’t really help but need to at least try and curb a little.

In any case, these are just a handful of the gifts that I discovered about dying.  There are more, lots more, but in the end each person has to delve in and discover their own, and they’ll be different for everyone.  It’s worth the effort because it can help to change the lifelong prospect of dying from something horrible, unnecessary, miserable, and bleak to something that’s a little more helpful, even nourishing, to the life we get to live until then.

So that’s it.  I’ve actually finished follow-up baby step #1!  My confidence is building.

Next up: A post explaining Random Hot Tip About Dying #2 which goes something like this:

“Accepting dying might not always make it easier when it comes, but being horrified is guaranteed to make it worse.”  

Now if I can just press the publish button I’ll be in business.

copyright Dia Osborn 2013

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The Unmistakeable Parallels Between Birthing and Dying

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 AlegreBrazil.  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

Breast Cancer: Pink October’s Long, Dark Shadow

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

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

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

Part IX: Out Of Town And Back Again (With Advance Directives In Tow)

(Continued from Part VIII: Advance Directives: Dying Inside Our Big, Hairy Healthcare System)

The hubster and I just spent five glorious day up in the Sawtooth Mountains.

Snowshoeing.  With heavy packs.  Uphill.  Both ways.

Kidding.

It sure seemed like it though.  The snowshoe into the family cabin at the beginning of any trip is always a bitch and this was no exception–a two mile trek from the highway to the cabin, uphill with fully loaded packs, after a four and a half hour drive to get there. The bad news was that the trail wasn’t groomed like we were expecting so Dane the Mangy Rescue Mutt (with bad knee and brace) started really struggling in the deeper powder.  (He made it though, and we’re more confident about his knee now than we have been in a while.)

The good news was that we got a late start leaving home so we didn’t actually strap the snowshoes on and start up the hill until about 8:00 pm.  It was already dark and the stars that night…the stars my friends…were outrageous.  It was one of the clearest nights we’ve ever seen and that’s saying a lot.  We rarely use flashlights because 1) you really don’t need them once your eyes adjust and 2) the electric light is so bright it dims the night sky.

As you may have heard, there was a spectacular crescent Moon/Venus/Jupiter conjunction going on last weekend and, sure enough, that trinity was hanging just over the silhouette of snow capped mountains as we got started.   However, the moon set after only twenty minutes so we had to content ourselves with a radiant swathe of Milky Way arcing over our heads from horizon to horizon while thousands of other constellations and stars filled the rest of the sky bowl curving down to the ground on either side of it.  (We made do.)  Meanwhile, the snow reflected all that diffuse light back into the air so that after a while it felt almost like we were trudging through a softly glowing snow globe.  I couldn’t get enough of it.  I just couldn’t.  I’m sure my face would have gotten frostbite from staring up through the bitter wind for almost two hours, except that my skin was too hot to freeze.  The heavy exertion was making me huff and puff and sweat like a pig.  (The hubster loved the stars too but was more preoccupied with trying to recall what were the exact symptoms of a heart attack.)

(Photo courtesy of Steve Jurvetson)

We’re getting older.  There’s no denying it.  And we’re not sure how many more times we’ll get to have these kinds of adventures.  Physical limits are getting harder to ignore.  But so far we’ve pushed on anyway because when you think about it, there are far worse ways to die than collapsing cradled in the wild beauty of high mountains while gazing up into pure, celestial wonder for the last time.

But not until we’ve finished our advance directives of course.

We packed these documents in along with everything else and spent one of our days at the cabin, pens in hand with a snowstorm raging outside, finally filling the things out.  It was surprisingly emotional.  We found it was one thing to sit and diligently read through them over the course of a few weekends, and something else entirely to actually write in our various notations, initial the desired boxes, and sign on the dotted line with each other as witnesses.

Everything suddenly got very final and real, and I kept hearing a heavy door swing shut with a key turning in the lock.  At first I struggled with the feeling that, by signing the thing, I was somehow giving up all my rights and instinctively, I started backing away and questioning the wisdom of the whole project.  I was surprised at how powerful…how primal…the wave of fear was.

But then I remembered something we’d read earlier, that if worst ever comes to worst and I’m finally lying unconscious and helpless and vulnerable somewhere, Somebody is going to step in and start making decisions for me. Whether I’ve filled out an advance directive or not.  Whether I’ve picked them to be the person or not.  Whether they know what I want or not.  And I suddenly got it…on a deep, gut level…that my advance directive is not the thing that will strip me of control and make me silent and helpless, it’s the thing that will help protect me in case I ever am.

That helped my resolve firm again and I was able to continue.

The hubster told me later that the fear he faced arose from a sudden and overwhelming realization that he will, absolutely, someday just cease to exist.  Poof.  Evidently, it was a huge moment for him but I never would have guessed it.  He didn’t look like he was sitting there reeling from the blinding, existential awareness of total, inescapable, physical annihilation to come.  From the outside he just looked absorbed.  Studying the paper in his hands, reading glasses perched on the end of his nose.  It’s not that he was trying to hide his fear from me, that’s just the way he is.  His courage is so unconscious most of the time that he usually doesn’t even realize that’s what’s going on.

We read and scribbled and talked about things for hours.  Sometimes we laughed, I cried some, but mostly we took turns trying to explain what we were afraid of, what we longed for, and how much we loved.  The process flushed out things that had been hidden and dormant for a long time.  Tenuous hopes and secret dreads, things to be examined, cradled in tender hands, and then placed into each others’ keeping in a final gesture of deep trust.

I’ve been really surprised throughout this whole process at the huge relationship component involved in filling out these forms.  Maybe because it was also a research project for me and we took so much time with it, maybe because we did it together as partners, I don’t really know but I tell you, it’s added a whole new level of meaning to Till death do us part. Overall it’s been a healing journey full of deepening intimacy for the hubster and I.  We’ve shared things we didn’t know we hadn’t shared, and revealed things we didn’t even know ourselves until now.

I guess if there was any advice I could give out of everything we’ve learned so far it would be this:

Do your advance directives together.  Find someone else who hasn’t done their’s yet, or who hasn’t looked at it in a long time if they have, and hold hands as you walk through it.  The person you pick doesn’t have to be the same person who will be your medical proxy.  (Although, if experience is any guide, you may want them to be by the time you’re done.)  And it doesn’t have to be only one other person either.  It could be a group…if you could find that many people brave enough.  I strongly suspect that this is one area of life where the maxim There’s strength in numbers holds especially true.  If you can possibly help it, don’t try to take this journey alone.

And take your time with it.  Break the process down over a few days or weeks.  If you let yourself sit with the questions for a while, you may be surprised by some of the answers that come up.  I know we were.

Y’know, it’s kind of funny.  In walking through our advance directives, it almost felt like an opportunity to practice for the real thing…for dying…from a safe distance. Emotionally speaking I mean.  In our imaginations the hubster and I got to slip on the experience of profound vulnerability and dependence that goes with dying temporarily, while we’re still healthy and vital and strong.  It was scary in some ways, but far less so than what I’d imagine it would be like facing it for the very first time in extremis.

And we got the chance to start honing a couple of the emotional skills that are essential to have during dying…things like the ability to surrender to the inevitable, to be openly vulnerable and reveal our needs to one another, to gratefully accept the help that’s offered and to be dependent gracefully.  Things that, in our culture anyway, we tend to think of as weaknesses or failings, and yet they’re not.  Those are things that actually require tremendous courage and strength.  I didn’t realize how much before.  To openly accept the willingness of another human being to step up and care for us isn’t easy, and accepting it with dignity is rare.  (Especially for somebody as controlling as I am.)  And yet the hubster confided a couple days ago that, during this whole process, he’s felt increasingly overwhelmed and touched by the depth of my trust.  Our willingness to open up and be vulnerable with each other turned out to be, not a burden, but a gift.

So anyway, these are just a couple of the things we discovered while filling out our advance directives.  It’s been a beautiful, frightening, surprising, hard, uplifting, sorrowful, strengthening, sobering, illuminating and profoundly intimate journey for us both.

And it’s still not over!  Next, we’ve set up an evening to meet with the people whom we’ve selected as our alternative medical proxies, to get their consent and share our advance directives with them. Then we need to get the forms notarized, witnessed, copied, distributed and filed. (Note: Because Idaho’s laws place unusually high hurdles to a simple, low intervention dying process, we’re taking precautionary legal steps with our advance directives that wouldn’t be necessary in most other states.  It’s extra insurance against something that probably won’t happen but still…better safe than sorry.)

And then, after we get ours taken care of, I’ve got the kids in my sights for theirs.

To wind this up, here are a series of photographs taken of some icicles hanging outside the cabin window during our recent stay.  The changes they went through over the days we were there feel similar to the changes the hubster and I have gone through on this whole journey with advance directives.

Stage One:  Glowing and happy from the previous night’s starlit adventure.  Delicate, sparkly and naive:

Stage 2.  Advance Directives Day–blasted by the elements, bewildered, and storm bent.  Not so sparkly anymore, but still…multiplying and stronger:

 Stage 3.  Skies are clearing, brunt of the work is done.  The amount of growth that happened during the storm is kind of surprising.  Thicker, longer, and a lot more:

Stage 4.  Older, calmer, wiser, stronger.  Not so much sparkling as glowing. We’re a lot more confident now that we can weather the storm. 

copyright Dia Osborn 2012

Part VI: Advance Directives: Mine

(Continued from Part V: Advance Directives: Best To Wish Carefully With A Genie)

In this post I wanted to share a smattering of specific thoughts and choices coming up for me as I fill out my own advance directive.  I wanted to do this just in case 1) someone might benefit from an example, and 2) anyone reading this may somehow, someday be involved in my care.

Just kidding.

(Not really.)

But before I start down that road I want to remind everyone that whatever I say here is a personal thing.  It’s a reflection of me and what I’d like to see happen with my care.  It’s not what I think anybody else should do.

When I was working with hospice my first job in any home was to find out what the people who lived there valued, believed in, stood for, and loved…and then work to support them from that foundation.  I did this because the dying journey is pretty turbulent and, for the most part, people need to harness the emotional and spiritual strength they’ve already established, not try and develop something new.  It’s almost always a bad idea to change boats in the middle of rough water.

Jared Alexander on Hazard Creek in Idaho

Any boat is better than being dumped out and beaten against the rocks for the duration of the journey.  That’s why I always tried, as best I could, to hang my own beliefs and personal preferences on a hook outside the door.

This post is only about the things hanging on my hook.

And now, specifics.

Here’s one of the most valuable directions we’ve come across so far:  Fill this thing out based on what choices we’d want made for us right now.  I’ve always thought of an advance directive as something that would come into play…oh…years and years from now.  Like when I’m eighty-three and dying of skin cancer from all the second-degree sunburns I sustained during my haole childhood years in Hawaii, for instance.

But no.  Turns out I need to think more immediately.  Like for the next five years (after which I’ll review and update my directive for the following five years, and so on.) Which leaves me facing the question:  If my life was threatened right now, at fifty-three years old, would I want more life sustaining treatment than I would want at a terminally ill eighty-three?  In other words, do I want more aggressive medical intervention?  Will I accept more risk?

I suspect the majority of people would say yes at my age, however for me it’s a little more complicated.  Because I’ve already been fighting the good fight to survive depression for two decades, my troops are on the depleted side and I’m a little battle-weary.  My basic will to live has taken a considerable beating and I don’t have the reserves I once did.   Just the idea of having to mount yet another massive resistance in a brand new war is exhausting.

It’s not that I want to die.  I really don’t.  I haven’t been in that phase of the illness for a long, long time now.   But depression years are like dog years…you live more of them in the same period of time…so fifty-three years probably seems longer to me than it would to the average, healthy person my age.  To me, I’ve already lived a really long, great, adventurous life.  Everything from here is just icing on the cake.

So what does this mean?  Well, as of today (of course things can always change which is why I’ll continue to review and update this thing regularly) but as of today, if I was mortally injured or ill and teetering on the brink of infinity, and if a possible recovery was going to mean a long, hard slog just to get back to a state of health equal to or less than what I have right now, then I’d rather take a pass on any life sustaining measures.

Please kiss me and let me go, my darlings.

Of course I’m not sure if the medical personnel involved would either agree or cooperate with that at my age…at least right away.  In fact, I’m pretty sure that in an emergency situation I’d still wind up on life support temporarily.  But then that’s exactly why I’m filling out this document right?  So that the hubster and/or the kids would be able to explain to them first, that I’m completely sincere about not wanting to be “saved no matter what,” and second, why I’m sincere, and that way eventually…gently and with everyone on board…they could remove me from life support.

Like I said, this stuff winds up being totally unique for each person doing it.  I suppose the main dictum for filling out an advance directive is, Filler Outer: Know Thyself.

A couple of other scale-tippers I discovered so far concern the issues of being a burden and/or a catastrophic financial cost.  I saw some tragic examples in hospice of how the drawn-out dying process of one spouse can not only bankrupt the surviving other, it can cripple their bodies and/or minds as well.  Occasionally, that’s just the luck of the draw and in those cases…oh well.  I can always stop eating if I feel that strongly about it (and can still think.)  But at other times it happens because of medical intervention and in that case…I don’t want to do that to him.  I DO NOT want to.  It would suck all the meaning and happiness right out of any additional life I gained if it stripped or destroyed the hubster in the process.

At this point I should mention that the advance directives we’re working with don’t offer assisted suicide as an option.  They can’t.  It’s not legal here in Idaho.  (I wonder if advance directives in Oregon and Washington include something along those lines?)  Locally, we’re only talking abut whether we want to accept or refuse “life-sustaining treatment” in extremis (from CPR to major surgeries to artificial nutrition and hydration to kidney dialysis and breathing machines…all of which can be big contributors to the election campaign of financial catastrophe BTW.)  So…no.  Not really.  Thank you.

Pass.

So, these are just a couple of examples of what we’re considering as we move through the documents.  It’s a lot more than just checking off box #1, #2, or #3.  And while I realize it might sounds pretty grim, in reality it feels surprisingly freeing to just face it.  Like these are big, unknown fears lurking just under the surface anyway, unconsciously sapping our focus and creating unease, so why not just haul them up out of the water where we can finally get a good look at them?  So far we’re finding that under the bright light of day, talking about these things isn’t horrible or morbid at all.  On the contrary, it’s a relief.  While it’s definitely emotional, it’s emotional in a kinder, braver way.  Not bad, really.

Well, this post has gotten too long.  The hubster and I are having our second go with the advance directives this weekend so I’ll try and post more about how it’s going next week.

(Next: Part VII: Advance Directives: Ours)

copyright Dia Osborn 2012

Part I: February Is Hereby Declared Advance Directive Month. Join Us!

It’s better when we do it together.

Confession: I haven’t done my advance directive yet.

I’m embarrassed to admit it, but there it is.  In spite of my harping and spouting I haven’t walked my own talk.  (Not entirely sure why but probably because this shit is not only scary, it’s confusing.)

Well, it’s time to climb off the soapbox and dive into those cold waters like I keep telling everyone else to do.  I’ve done one thing at least…talked to the people most likely to make decisions for me if worst comes to worst…but that’s not enough.  No…ho…ho.  They’ll also need legal paperwork to prove that I mean what they say, so I need to do the deed itself.  Put pen to paper.  Download the state forms, sign on the dotted line, and give them copies.

It’s Time to Legalize And Let It Go.

The hubster is doing this with me and while we’re at it, I wanted to invite everyone else who hasn’t done their advance directive yet, but wants to (or not) to join us on our little adventure.  I’m going to try and enroll my kids and siblings and their families in the process, too, because I really want to know what they want in case (God forbid!) I wind up having to make decisions for any of them. 

IMPORTANT SAFETY TIP:  The need for an advance directive knows no age limit, anyone can wind up incapacitated and unable to make decisions at any time.  If you’re 18 or over, this sucker is a good thing to have. 

I’m assuming this process will bring up questions, fears, and insights along the way that we can all help each other with and learn from so IMHO, the more the merrier.

Are you ready to rumble?!!!

In the next couple of weeks I’ll be researching and posting about the who’s, why’s, what’s, where’s, when’s, and how’s of the process, and then in February the hubster and I will take the plunge and do all the concrete steps necessary to make sure that everyone from intimate family members to state agencies are clear on what-we-would-and-would-not-want in the event.

So if you haven’t filled out your advanced directive yet either, feel free to join us.  I figure there’s strength in numbers.

Next post:  Part II: What Is An Advance Directive? (Or Why I’ve Been So Confused.)

copyright Dia Osborn 2011

CSA’s and Thoughts About How Hard It Is To Address Childhood Sexual Abuse

I have to start writing faster.  I’m too anal and obsessive, to the point where I spend three hours on a sentence that I should just delete.  Then I do.

(I’m now fighting off the compulsion to go back and extensively rewrite the previous three sentences before I can move on.  Sigh.)

So, since I’m up against my deadline today, and since I’ve wasted the entire week on writing and re-writing a few paragraphs of a post that I’ve now decided not to use, and since I now have nothing to show for all the hours I worked, today I’m going to just write something and then throw it up in the air to see if it flies.  Here goes.

First, CSA’s (Community Supported Agriculture.)  We joined a CSA hosted by a local farm this year and it’s been a terrific experience.  Our membership included a set poundage of locally grown, organic fruits and vegetables each week in addition to which we splurged for a free-range chicken or a dozen eggs on alternate weeks.  It’s a whole different way to eat, let me tell you.

We met a number of new vegetables we don’t normally consume (lemon cucumbers and purple potatoes…yum!!, beets…no.  An unfortunate childhood brush with forced feeding seems to have ruined me forever for beets…) and menu planning was an exercise in surrender and total flexibility.  I had no idea what I’d find in the bag from week to week so Tuesday nights involved a steep learning curve and creative (if not always edible) menu planning.  I was feeling increasingly overwhelmed by it all until the lucky discovery that I could throw everything I didn’t know what else to do with into a roasting pan, coat it with olive oil, and then grill it for half an hour.  No waste, little effort, and surprisingly tasty results.

Here’s a pre-roasting photo of some beautiful, colorful mixed vegetables we got from the farm:

It was like eating a trip to Mardi Gras.  What a pleasure.  We’ll definitely be signing on as CSA members again next year.

And now, the difficult part of this post.  The avalanche of shocking revelations this week of child sexual abuse in the showers at Penn State stirred up a lot for me again and…I’m sure…many others who live with that particular legacy.  It also, unfortunately, stirs up a lot for those who love us.  The coverage was so extensive it proved impossible to escape and of course it dredged up old ghosts.  I grew increasingly agitated as the week progressed which inevitably led to the hubster and I having an emotionally loaded discussion about it all which was painful and distressing.  My tail was lashing and claws were out, and he was doing his level best to listen without actually emerging from the behind the door where he might become a possible target himself.

But somehow, in spite of the dangers, we stuck with the discussion, refusing to collapse back into the standard, polite silence that Big Lie insists is more civilized but is really just poisonous and creepy and awful.  The hubster stayed near-but-not-too-close until my wild anger finally broke and the rain of tears began, at which point he knew from experience it was safe to come out and help me wrestle the remaining storm of emotions back to the mat.

We had a really great talk after that and wound up finding a lot of hope and anchors to tie into, and by the time we were through we both felt a lot more positive, strong, and courageous looking forward than we had beforehand.  Here are a couple of the insights we came too:

First, Silence is the biggest enemy we have, bigger even than the predators and the crimes themselves.  Without our longstanding cultural willingness to look the other way, predators would have a far more difficult time finding the hiding and secrecy they need. They exploit and thrive on our instinctive tendency to avert our eyes.  It’s also been well-established that having to keep the secret of abuse afterwards does more lasting damage to a victim than the original abuse itself.  So silence really is the worst thing…but it’s also the one thing that all of us can address, no matter where we are.

Second, stepping up to the plate and reporting this kind of abuse is one of the riskiest, most frightening, and potentially devastating things that a person can do.  Ask any victim.  And it’s not much different for their advocates.  A revelation of this nature has the annihilating power of a nuclear bomb, and to unleash that devastation on a person, or a family, or a community, or an institution that one either still deeply cares about and/or is afraid of, requires a level of courage far beyond what most of us have ever had to muster.  And when it reaches a powerful institutional level as it did with the Catholic church and Penn State, the inevitable costs involved in speaking out can grow so daunting it paralyzes.  I’m not surprised that the men who knew about Sandusky’s predation failed to speak up.  Frankly, I would have been more surprised if they had.  Protecting the status quo has been stand-by operating procedure for centuries, if not longer.  We shouldn’t underestimate just how revolutionary the current movement to expose and address childhood sexual abuse really is.  We’re breaking some serious new trail here so everyone should expect a lot of turbulence during the transition.

In a sense, reporting child sexual abuse is a lot like throwing yourself in front of the gun.  You never know whether someone will decide to shoot you or the predator.  I remember when Mackenzie Phillips released her book with the bombshell that she’d had an incestual relationship with her father that lasted into adulthood.  In spite of all the other unconscionable things her father had done to her that no one argued with, and in spite of the fact that Ms. Phillips was a catalog of symptoms that correlate to childhood sexual abuse, the majority of media coverage still had a bias toward protecting her father and doubting her.  Very few public voices at the time seemed inclined to believe her and the spiraling frenzy of blowback was frightening.

(That was another tough week for those of us with childhood sexual abuse in our past.  As one blogger so succinctly put it at the time, “Evidently, the only thing more taboo than committing incest is a victim trying to talk about it afterwards.”)

One thing that the hubster and I came to in our discussion was the realization that there were times when we, too, had failed to speak up in situations that called for it.  They hadn’t involved anything nearly as extreme as witnessing a child being raped in a university shower, but then most of the time these kinds of things don’t.  On the contrary, they’re usually small enough that we can tell ourselves they’re innocuous and really not worth making a stir over.  Yet it’s on the smaller things where it’s easiest to begin to develop a voice.  When we hear someone at the next table trashing someone we care about, or when our friends are hassling someone unfashionable, or when our coworkers are stealing office supplies, or when someone tells us an offensive joke.  These are the times we can practice saying Y’know, that’s not right.  Please stop.  I believe we’re better than that.  

The hubster said he uses the shame from the memory of his past failure as a motivation to do it differently next time.  Because in that way, he actually harnesses past harm as an energy for future good.  I loved that, because it means that past mistakes are never written in stone.  We can’t go back and change them but they don’t have to define us.  We can define ourselves instead by what we do about them going forward.

And…shoot.  It still took me seven hours to write this frigging post.  The whole spontaneous thing is definitely gonna require practice.

copyright Dia Osborn 2011

TRUE OR FALSE? “Talking about dying will kill you.”

FALSE.  Talking about dying is non-toxic and perfectly safe for all ages.

I hit this wall a lot though, because deep down the majority of people believe it’s true.

In polite company, when it comes up that I’m writing a blog about…well…the “topic” (maybe if I don’t say the word, you won’t run)…I usually get a blank stare, long pause, and visible squirming, followed by an abrupt change of subject. Some people even turn around and walk away without saying a word.  (Which I admit makes this topic a valuable extraction tool in a pinch.  For anyone seeking to escape a chatty person, its eerie power of repulsion does have uses.)

In any case, there’s rarely an opportunity for a follow-through discussion.  The conversation is dead before taking its first breath and, so far, this hurdle has stumped me.  That’s why I spend so much time poking around the carcass in my mind afterwards, trying to find another angle which might induce more people to join me.

For instance this morning I was chewing on the common question; I’m not dying yet.  No one I know is dying yet.  So why should I think about it now?

This, of course, is the unstated question behind most blank stares and…I’m not gonna lie to you here…it’s a good one, possibly the most important question of all.  In spite of my flippancy, I fully understand why people don’t want to have this discussion: Talking about dying is a courageous act.  In order to do it, you have to stop running, turn around, and face the very monster that IS someday going to kill you and all your loved ones.  Let’s face it, as conversations go, it just doesn’t get much braver than that.

So when I broach the topic to someone who’s half-dressed at the next locker, or trapped next to me for three hours on a plane, or suddenly choking on their turkey over Thanksgiving dinner, I understand their reluctance.  I do.  I realize I’m asking them to start thinking right now about a real-life horror flick that at best they can delay, but will never escape.

Which brings me back to the question, Why should they?  The reasons had better be compelling.

Well they are.  And actually there’s just one:

It’s so they don’t have to spend their whole lives dragging the deadweight of this secret dread behind them.  Once a person learns how to talk comfortably and freely about dying, they can finally stop looking over their shoulder and relax a little. Living every hour, every day, year after year, with a yawning, existential, chronic fear…even if it’s kept pinned down in the subconscious most of the time…is draining and toxic.  Denial can help for a little while, sure, but ultimately it has huge downside.  Huge.  Trust me on this one.  As a long-time phobic I know.

Courage is a far better option and, while it’s harder to muster initially, it makes up for it by having no downside.  None.  In fact, courage not only eases the fear around talking about dying, it actually makes the event itself a whole lot easier to deal with when it finally arrives.

So when I grin at a 31-year old cashier and say Hey!  What do you think about this whole dying thing anyway?  It’s not because I’m the Grim Reaper’s administrative assistant trying to schedule an appointment for her.  It’s only because I’d like to ease some of her fear about the whole thing.  I’m willing to stay and hold her hand.

Facing into any fear shrinks it, and facing into this fear–as early in life as possible–can improve every day that follows in a way that most people don’t even know is possible yet.  I mean, how could they know when nobody ever talks about it?!

Sheesh.

So, what would make you more likely to stick around and have this chat?  If I said:

1)  I write a blog about dying.

2)  I write a blog about talking about dying.

3)  I write a blog that can help ease your fear about dying.  (Actually, is that even true?  You’ve read this.  Are you less afraid of dying now?  More afraid?  Unchanged?  Are you at least more willing to talk about it?  Are you even there?  Hello?  Hello?)

If anyone else has ideas about how to broach the topic of dying in a way that doesn’t repel everything within a hundred yards, I’m totally up for suggestions.  (And please don’t feel you have to be serious.)  Comments are even more welcome than usual on this one.

Thanks.

copyright Dia Osborn 2011

P.S.  The terrifically fun photo above is from Ambro’s Portfolio.

Funeral Processions and Other Reminders We Don’t Want

Funeral Procession by Ellis Wilson (1950), Aaron Douglas Collection, Amistad Research Center, Tulane University

Yesterday afternoon, while driving home from the dry cleaners, I was stopped at a major intersection by the longest funeral procession I’ve ever seen crossing in front of me.  Fortunately for everyone involved, I arrived just in time to see the hearse leading the procession go by so I understood what was happening and relaxed into the wait.  But I’m afraid that if I hadn’t seen it, being in my usual hurry, I probably would have missed all the other, subtler cues and, since I needed to turn right into the very lane all the mourners were using, would have done something stupid like trying to cut in.

It’s been so long since I’ve seen a funeral cavalcade that I’ve apparently grown fuzzy on the signs and protocols.  I mean sure, I drove in one during my hospice years, but that’s different.  I knew perfectly well why all the cars were lined up and all I had to do was follow the one in front of me.  But encountering one randomly out on the road required a little more awareness on my part; first, an ability to recognize the nature of the event, and second, a correct response.  Without the hearse, I’m pretty sure I would have failed at both.

Once upon a time I used to know that the cars in a funeral procession all have their headlights on, even during the afternoon on a bright sunny day.  (Check.)  And that funeral attendees generally dress up in crisp, dark colored, Sunday-best clothing, even in the middle of the week.  (Check.)  And that all other vehicles not in the procession are supposed to stop and wait until the the last car has passed, no matter what color the light is. (Check.) And if I somehow missed all these other clues, then the motorcycle cop sitting in the middle of the intersection aggressively waving his arm at me should have dispelled any remaining confusion.  (I wasn’t going to go.  I was just inching.)

It must have taken a full three or four minutes for the full procession to pass by, and as I sat there and witnessed the rolling continuum of face after silent, somber face looking forward in their car without smiling or chat, I unexpectedly started to feel the loss of this clearly beloved life myself.  All of a sudden it hit me; a life was now gone.  A LIFE. GONE.

Poof.

And suddenly, there in the middle of my buzzing, mundane, household errands (that noisy rabble of small concerns that are forever hijacking my life) a breath of something ancient and cold blew across my neck…and blessedly woke me up again.

I was glad and grateful for it.

It’s so easy to fall asleep and forget how brief this opportunity is that I have.  To be alive.  With others.  With fingers to touch theirs faces and lips, and a voice to sing with, or whisper, or cry out in pain.  With eyes drenched in moonlight, ears drowning in music, flavors exploding all over my tongue, and a nose wrinkling over a whiff of some faint stink that thankfully passes as quickly as it came.

These are miracles…miracles!…so how in the world do they get eclipsed by a stupid hour of busy tasks I won’t even remember by nightfall, much less at the end of my life?  It’s just weird, how easy it is to take the raw wonder of being alive for granted.  And scary, how forgetting it runs the risk of stranding me in a sad and shallow life.

*     *     *     *     *     *     *     *     *    *     *     *     *     *     *     *     *

Later on while thinking about the whole thing, the question hit me.  Why is it that I haven’t seen a funeral procession in so long?  What happened to them all?  Are they really fewer and farther in between?  Is it a tradition that’s fallen from favor?  Here are a few possibilities that sprang to mind:

1)  The rise of cremations and scattering of ashes has become a popular alternative to burial in a cemetery.

2)  Memorial services (as an alternative to the traditional funeral, procession, and graveside ceremony) take less time, offer greater scheduling flexibility, and also pair easily with a cremation choice.

3)  Then there’s the fact that police escorts for funeral processions are being scaled back as municipalities find themselves strapped for cash.

These are all likely reasons to be sure, but I can’t help wondering if there’s something more insidious going on, too.  Over the decades, as a culture, we’ve taken to disguising and hiding the trappings of death as we transfer our attention to the increasing hope of medical cures.

For instance, in spite of the rise in hospice care, the majority of people still die in hospitals.  But think for a moment, how many times have you actually seen a body in there?  Ever wonder why?  It turns out there’s a special fleet of gurneys that hospitals across the nation employ, cleverly designed with a secret compartment where the dead can be tucked away from public view.  Then, when they’re removed from the hospital morgue to funeral homes, they’re generally transferred through low traffic areas and back doors.

So instead of people having to step respectfully aside–momentarily hushed and awed–as a still, sheet-draped form rolls down the hallway in quiet dignity, everyone can instead hurry along uninterrupted, brushing past a seemingly empty cart hiding all evidence that one of the greatest mysteries in existence has just occurred.

Could it be that funeral processions are disappearing for the same reason?  To eliminate unpleasant reminders?  And is this wise?  Do we really want to transform our world into a place where there’s nothing left anymore to wake us up?

I realize that a big part of the reason for hiding death is to spare us the experience of fear, dread, and helplessness that facing it entails.  But really, does anyone think that strategy is working?  It doesn’t seem like we’re less scared.  In fact, it looks like our fear is mounting which, when you think about it, is the more logical outcome.  People are always more frightened by what they can’t see than what they can. Once freed from the tedious burden of hard facts, a fearful imagination usually launches into the stratosphere, heading straight for the heart of the worst possible scenario.  Honestly, I think hiding the fact that people are still dying, thereby stripping us of any chance at familiarity, is actually making things even worse and scaring the bejeezus out of us.

Maybe we’d be better served by slowing down a little, taking a deep breath, and gently lifting the sheet again for a closer look.  Yes, that would be sadder, scarier, and harder to do.

Definitely.

But it would also be braver and more dignified.  Which is who we really are anyway, so why not just do that?

In closing, for those of you who, like me, may be a little sketchy on the correct protocol for funeral processions, here are a few links that might help:

Funeral Procession Traffic Laws

Should You Stop For Funeral Processions?

Right-of-Way of Funeral Processions

copyright 2011 Dia Osborn

My New Idol

Okay.  You have to see this.

For those who haven’t yet, here’s a photo of one little five-year old’s fantastic Halloween costume along with his mom’s commentary about what he was subjected to for choosing to wear it this year.  It’ll make you both gnash your teeth and cheer.  This cop’s wife at Nerdy Apple Bottom is my new idol, my hero, my role model for everything honorable, loving, and courageous.

And I adore her son.  He totally, totally rocks.

The story she tells is particularly insightful for the fact that she’s identifying and naming bullying at it’s very earliest stages.  And…surprise!  As always, it starts with the adults.  In her words:

“But it also was heartbreaking to me that my sweet, kind-hearted five year old was right to be worried. He knew that there were people like A, B, and C. [Editor’s note:  A, B, and C are other mothers at the preschool.]  And he, at 5, was concerned about how they would perceive him and what would happen to him.

Just as it was heartbreaking to those parents that have lost their children recently due to bullying. IT IS NOT OK TO BULLY. Even if you wrap it up in a bow and call it ‘concern.’  Those women were trying to bully me. And my son. MY son.”

I think this is what the source…the spring, the headwaters…of bullying looks like, how it appears right as it first starts seeping up out of the ground.  It’s well worth studying because it’s so much easier to stop it at this stage than it is after the kids pick it up.

And bravo Nerdy Apple Bottom!!  As you can tell by now, most of us out here are far more eager to celebrate your son than judge him in any way but the best.  I have no doubt that, with a mom like you behind him, the man he eventually grows into will be outstanding and a gift to us all.  Thanks for this!

copyright 2010 Dia Osborn