Mothers carrying the DNA of their children? How exquisite.

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William-Adolphe Bouguereau (1825-1905) – Charity

Here’s something odd and fascinating and kind of beautiful that dramatically shifts our understanding of DNA and genetics.

Researchers have discovered that evidently, a lot of us harbor not only the unique mix of DNA we inherited from our parents, but also DNA we’ve picked up from other people along the way, proving on a genetic level that John Donne was SO right when he said that no man is an island. Scientists are calling these people chimeras, a term borrowed from a mythological creature which was made up from several different animals.

According to the New York Times article DNA Double Takescientists have found cases where people who’ve received bone marrow transplants carry both their own DNA and the DNA of their donor, twins sometimes carry multiple genomes in their blood from fetal blood transfers, and a majority of mothers likely carry some DNA from the children they nourished inside their wombs while they were pregnant.

What I found particularly moving about the last example was this line from the article:

“Chimeric cells from fetuses appear to seek out damaged tissue and help heal it, for example.”

Evidently, pregnant women have been benefitting from a natural form of fetal stem cell transplant for aeons.  Now that’s a loving exchange on the most visceral level.

In addition to sharing our DNA among us, it’s also not uncommon for any one of us to carry alternate DNA resulting from genetic mutations in various parts of our bodies…in other words many of us have multiple genomes inside us that we made up all by ourselves.  We’ve known for a long time that that’s how cancers tend to get started, but evidently other non-cancerous cells can do the same thing, sometimes for better and sometimes for worse:

“Now that scientists are beginning to appreciate how common chimerism and mosaicism are, they’re investigating the effects of these conditions on our health. “That’s still open really, because these are still early days,” Dr. Urban said.

Nevertheless, said Dr. Walsh, “it’s safe to say that a large proportion of those mutations will be benign.” Recent studies on chimeras suggest that these extra genomes can even be beneficial….

…But scientists are also starting to find cases in which mutations in specific cells help give rise to diseases other than cancer.”

Needless to say this is to some extent changing the way that we’ll have to approach everything from genomic medical research and diagnoses to forensic science (a cheek swab might deliver two sets of DNA for instance) as well as the growing field of genetic counseling.  It looks like human beings are not going to be quite as easy to map and label as we once thought.

And I admit, I just love that.

‘No Man is an Island’

No man is an island entire of itself; every man 
is a piece of the continent, a part of the main; 
if a clod be washed away by the sea, Europe 
is the less, as well as if a promontory were, as 
well as any manner of thy friends or of thine 
own were; any man's death diminishes me, 
because I am involved in mankind. 
And therefore never send to know for whom 
the bell tolls; it tolls for thee.

(For any other lit geeks like me out there, you can find the above version of John Donne’s poem as well as the olde english version here.)

copyright Dia Osborn 2013

 

A very hard week.

Cameron black and white

Hey everybody. I was working on a different post for this week but it was sidelined when our family got hit with a devastating event.  The hubster’s nephew, an extraordinary, loving, and gifted young man, took his own life Sunday night and everything since then has been aftermath.  His parent’s did everything conceivable to get him help and prevent this from happening but in the end his illness overpowered all the rest.  My mind is whirling with all the things that could and should be said about what’s happened…the desperate need for people to be more aware of how profound a danger this is to our children, the desperate need for everyone to be more willing to talk about suicide instead of hiding from it, the desperate need for better funding for our hotlines and mental health infrastructure and suicide education for the school staff who often serve as first line of defense, and the desperate need to break down the current stigmas associated with mental illness…but for today I’m still too heartbroken.

Here’s a link to Cam’s obituary that just came out today. If you’d like you can take a moment to read it and, in your heart, celebrate the beautiful life of someone who did tremendous good and helped a lot of other kids during the short time he was here, and perhaps say a prayer for him and all those who loved him, it would be more deeply appreciated than you know.  His parents felt very strongly that his cause of death should not be hidden or spun in this notice of his death as they know…better than most now…just how critical it is for all of us to start talking about this more openly.  This from the obit:

“But through all the laughter, Cam suffered from depression. He tried to disguise his pain and put to use the deep empathy, love, and compassion generated from his own life’s survival experiences to help as many other people as he could. In the end, he took his own life but he would have wanted everyone to know it was not the outcome he longed for.” 

I can’t begin to tell you how unbelievably brave his parents have been or how, even in the midst of their own devastation, their concern for the many, many other kids reeling from this loss has been uppermost in their minds.  There was a prayer vigil the other night that Cam’s dad helped organize where four or five hundred kids and parents showed up to grieve and sing and tell stories and also talk openly about suicide and the things we can do to watch and help one another to prevent this from happening again.  Everyone in that hall wanted to know.  Everyone there wanted to hear it discussed openly.  The kids especially needed the evening to help them understand and try to come to grips with what’s happened, and the way they came together and were holding and supporting and loving one another through their grief was one of the most extraordinary and moving things I’ve ever witnessed.  They’re so much stronger and courageous and wise, our children, than we tend to believe.  We grown-ups owe it to them to face into our own terrors and finally stop hiding from this.

But enough.  Today I just wanted to say I love you all, even if I don’t know you, and I can’t tell you how glad and grateful I am that you’re out there right now and still alive.  Because that one simple thing gives me more hope than you can possibly imagine. Really love one another today and reach out to someone nearby just because you still can, and do something kind or make someone smile because thats how Cam used to live every single day and why, even with all the turbulence right now, the most lasting legacy of his life will ultimately be one of laughter, love, compassion, and song.

Important links for those considering suicide or those who know someone having suicidal thoughts:

NAMI (National Alliance On Mental Illness)

List of National Suicide Hotlines (Scroll down a few inches to list)

 

Hail in the Garden…yikes!

We’ve got a major storm passing through southwest Idaho as I write. It started at our house with some of the biggest hail I’ve ever seen, (including during all my years in Iowa, a state which can throw up a doozy of a thunderstorm.)

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Evidently, we got off lucky.  Down in Jordan Valley it was golfball-sized, and there was one report of baseball-sized hail.  Good-bye windshields.

The hail we got here was big enough to decimate my squash patches though.

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But Bert, Bertha, Beatrix, and all the other winter squashes are okay.

I tried to take a video during the worst of the hail fall but screwed up and only got a couple of seconds.  Here’s an earful of what it sounded like though.

It was all pretty exciting and I…big thunderstorm fanatic that I am…actually loved the whole thing. The hubster laughed when I told him so and commented that thunderstorms are the only thing in existence that could trash my garden and leave me happy about it afterwards.

copyright Dia Osborn 2013

 

Odd Thing About Dying #2: We’d like some destiny with our death please.

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Atropos of the Morai (One of the Sisters of Fate)

In the previous post Odd Thing About Dying #1: They’ve blocked most of the exits I talked about how challenging it is to die these days because the modern medical system has evolved to prevent it wherever possible, even when a person reaches the end of their natural life and is more than ready to go.  And so far hospice (along with the growing palliative care specialty which often goes hand in hand) provides the only officially sanctioned exit where people are allowed to leave the system without a fight.

Now, that being the case you’d think that everyone who didn’t want extraordinary measures taken to extend their lives would be fighting to get enrolled in hospice as early as possible, yes?

Well, no.  Far from it.  Hospice care is one of the most misunderstood and underutilized services out there while, where palliative care is concerned, the majority of people haven’t even heard of it yet. There are a number of reasons for this (including the fact that most people don’t WANT to understand them because it involves talking about dying) but there’s one reason in particular I’d like to discuss here and it essentially boils down to this:

Most people feel to some degree that, if they enroll in hospice, then they’re choosing to die.

This isn’t true for a couple of reasons:

1) When a person enrolls early enough, hospice is about deciding to LIVE WELL UNTIL one dies.  It’s about life, not death.

2) Dying isn’t really a choice to begin with, it’s a destiny. Choice implies we could decide not to die if we didn’t feel like it which of course we can’t.

People aren’t entirely wrong however. Due to some brilliant medical and public health advances we don’t usually “just die” anymore, we have to choose when; when to stop seeking treatment, when to forego that surgery, when to surrender to that infection, when to decline that CPR, or when to remove that ventilator.  Either we or our loved ones have to huddle with our doctors, weigh all the options, and then consciously decide whether to fight for the possibility of extra time or to let it go.

Of course at first we hailed these advances as unqualified blessings but over time it’s turned out that all the new choices can create something of a burden, and sometimes a curse.

You see, there really isn’t a clear point anymore where a doctor has to tell a patient, “I’m sorry but there’s nothing more we can do.” There’s always something more they can do, which means that until a person get decisive and say, “No, that’s it, I’m through. Please stop now,” chances are the doctors will keep suggesting something else.

Just so you know, this is a sea change in the way we humans face death.  It’s historic.  As far as I know, never before in human history has there been a point where the majority of people had to consciously choose when to die, or have a loved one choose for them. This development is an unintended consequence of all our new medical possibilities and, along with the miraculous blessings it bestows, it also requires that we now stand up and assume a level of responsibility for our own death that was unimaginable just a few decades ago.

Only we don’t really want that kind of responsibility.  Turns out one of the things we actually liked about the old way of dying was that we didn’t have a choice.  Destiny used to shoulder that burden for us, which we thought we hated at the time but are now starting to realize was maybe not as bad as we thought.

For a while everyone thought that of course our doctors would take over from destiny and let us know when “our time” had come.  But it turns out they don’t want that responsibility either and, honestly, who can blame them? The burden of telling someone they’re going to die is extraordinary, even when a person wants to know.  And if they don’t?  Well, that can be a lawsuit.

So doctors try and sidestep any kind of straightforward prognosis and hand us the research and statistics instead, from which we then have to try and divine the tea leaves for ourselves.  In addition, the majority of doctors still tend to encourage us to pursue aggressive treatment, often far past the point where they would themselves, with the stated goal of preserving hope but really for the purposes of distraction.  While they often have a good idea when a treatment will be futile, they also know that even a futile treatment can offer us temporary shelter from our terror of dying, which on the one hand is genuinely kind and deeply human, but on the other is a lot like that old bear attack joke:

Question: What are you supposed to do when you’re being attacked by a bear?

Answer: Run like hell.  It can’t save you but it’ll give you something to do for the last thirty seconds of your life.

Only dying is now taking a lot, lot longer than thirty seconds and people are starting to feel like there are better things to do with that time.  But our instincts work against us.  Seeking further treatment still feels like the most right and natural thing to do, and besides everyone else is seeking further treatment, and on top of that there’s major disagreement about when it’s wisest to stop because it’s completely different in every case.

So to recap, while destiny is still in charge as far as death itself is concerned…we all still die…our medical advances have allowed us to seize more control around the timing issue.  Only that means somebody now has to decide when to treat and when to stop, and while we’d mostly prefer that our doctors made the decision since they know so much more than we do, they’re proving reluctant.  Which leaves us to make the choice ourselves, only 1) we don’t know enough to make an informed decision, and 2) we’re unwilling to educate ourselves because that would mean actually talking about dying and we don’t want to do that either.

The whole situation reminds me of a teenager who wanted nothing more than to move out of the house and call all the shots, only to discover the new freedom requires getting a job to pay the bills.  Well, it looks like our new miracles also demand that we assume more responsibility. We’ve created a bewildering array of new choices around the question of when we actually have to die and our new job is to figure out what, among all those choices, constitutes a wise one.

Next up, I’d like to explore some of the reasons why the current choices we’re making aren’t working out so well.  I’m curious to see if breaking them down and examining them more closely might suggest better options.  And, as always, If anyone else has some thoughts on this subject I’d be eager and curious to hear them.

copyright Dia Osborn 2013

Related articles:

A Better Way To Die

Squashland

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Bert

Bert is a Hubbard squash, the largest this year.  Missing are pictures of Bertha and Beatrix,

also large but harder to photograph as the girls are both shy and hiding under leaves.

Bert is the first Hubbard squash I’ve grown who is too big to fit in the oven.

(He’s deeply embarrassed and keeps apologizing.

Squash are actually quite tender on the inside.)

This means, of course, that he’ll have to be cooked in pieces,

a ticklish affair since the shell of a

seasoned Hubbard squash

is impervious to knives.

Hard.

So

Hammer?

Saw?

Drop him five feet onto concrete?

Other ideas anyone?

We’d be grateful.

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The Pumpkin clan are also doing well.

Fat Hamish in the lower left is a wild thing and recently confided

that when he turns orange

he wants to be shot out of a cannon.

Turns out he’d only ever heard about the flying part

and not the landing

so now he just wants to be carved to look like

Bob Marley.

Simple enough.

copyright Dia Osborn 2013

Odd Thing About Dying #1: They’ve blocked most of the exits.

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Oh, those Swedes.

I was thinking the other day about important things I learned while working with hospice (and by “important” I mean things like what surprised me to the happy upsideand what do I need to know to make a graceful exit when it’s my turn?) and a few things came up.

The first is a piece of information that falls under the Graceful Exit category and is, I think, pretty important. Perhaps even critical in the same way that knowing where the emergency exit doors are located on a plane can be critical. It goes something like this:

If the current medical system was a building that we’re supposed to enter at birth and leave at death, then there’s a serious flow problem because they’ve blocked most of the exits.  

There’s basically only one official door left where people trying to get out are allowed to leave the building without a fight. (More on that below.)

No doubt about it, we’re living in an unusual age.  Dying has become very hard to accomplish, which is weirdly wonderful until it’s actually time to die and then it totally, totally sucks.  It wasn’t always like this.  For roughly the last thousand years of Western civilization, people used to die according to a fairly simple formula:

a) They lived for a time.

b) They got really sick or severely injured.

c) They realized they’d never get better.

d) They summoned, reconciled, forgave, received forgiveness, and bequeathed.

e) Then they went ahead and died.

(Except for those who died suddenly and went straight from A to E.  It’s interesting to note that while nowadays many feel that’s an ideal way to go, historically it was frowned upon.  Dante for instance, relegated some of the souls that died unexpectedly to the lowest circle of hell which, I don’t know, seems a bit harsh. I’d be curious to know his thinking on that one, although he looks like a scary guy to argue with.)

Portrait_de_Dante

This by Sandro Botticelli.

Due to some of our pretty extraordinary medical advances however, that ancient formula isn’t working so well anymore and while we’re still following the first two steps…

a) We live for a while.

b) Then we get really sick or severely injured.

…once we get to Step C things fall apart at the seams.  Our bodies can now be kept alive almost indefinitely which has made it a lot harder, sometimes impossible, for people to either slip out without any fuss or at least figure out when it’s time to let go.  I’m not exaggerating here.  The bottleneck of bewildered, milling, hospital gowned people trailing IV poles and looking for a definitive answer has grown so massive that it’s threatening not only our healthcare system but our entire economy.

So why is this happening?  Well there are actually a lot of reasons but I’m only going to address two of them here.  The first is that, while modern medicine has a variety of goals, there’s a kind of One Goal To Rule Them All.  Our current healthcare system has evolved around the central purpose of keeping everyone alive for as long as possible which, for the vast majority of our lives, is a good, noble, sacred thing, and one which I think we’re all pretty grateful for.

The problem arises when someone realizes that oh, it’s my time, so they gather their things and head for the nearest exit (these are the doors with signs overhead like Heart Attack, Pneumonia, Sepsis, Aneurysm, Dehydration, Flu, Respiratory Failure etc.)  But there are guards on all these doors who turn them back with shock paddles, intubation, or offers of antibiotics, vaccinations, IVs, etc., sometimes over and over and over again.  People trying to leave the building often have to spend a lot of time and money frantically going from door to door until they’re finally so frustrated that they just overpower the guards and escape anyway.

I read a recent story of an elderly gentleman with a heart condition who decided he’d lived a long enough/good enough life and was now ready to go.  After much deliberation he decided to decline any further interventions and treatments, filled out an advance directive, got his wife and doctors all on board with his decision, and even signed a Do Not Resuscitate order.

Then he went golfing where he had a major heart attack somewhere around the seventh hole.  Panicked bystanders called 911 which, unfortunately, activated the guards standing next to that particular door.  The EMT’s sprang into action and once they arrived on the scene nothing could really stop them.  (Please keep in mind that emergency responders are bound by some strict legal codes to preserve life and deliver it to the hospital.)  Evidently, even the man’s advance-directive-bearing-wife couldn’t get them to stop (I wonder where the DNR was and if it would have made a difference?) and so our elderly gentleman had to endure the overwhelming pain and multiple broken ribs of CPR along with many other uncomfortable resuscitative efforts in both the ambulance and the emergency room before he finally died from his heart attack anyway, just far more broken, disheveled, and black and blue than if he’d been allowed to die back on the green. (And then his wife got the bill.)

Needless to say this was not how he wanted to exit the building.  At all.  Most people don’t want to leave this way.  Nevertheless, this kind of situation happens over and over again because right now there’s still a sizable disconnect between emergency medical services and end of life care.  (And preventive services and end of life care.  And routine care and end of life care.  And…well, pretty much the entire medical system and end of life care.) This kind of thing happens in nursing homes and assisted living facilities and hospitals, too, and everyone knows it’s a big problem. The good news is that solutions are currently being sought.  The bad news is a lot of the problem is structural and hard to change.  Even so I’m confident we’ll figure something out eventually.

So in the meantime, what’s a person who’s ready to go and wants to avoid extraordinary medical measures to do?

Well, this is where that One Official Exit I mentioned earlier comes in.  You’ve probably already guessed by now but the sign over this door reads HOSPICE (and to a growing extent the up and coming PALLIATIVE CARE.)  Just so you know, people who queue up at this door are hands down the most likely to have their passports stamped and passed right on through in a graceful, peaceful, unmolested way.

Sounds simple enough, no?  I thought so too, but in reality this particular door, even though it’s the one that everyone respects and agrees on, is still the most misunderstood and underutilized exit of them all.  Why?

Well, that brings me to the second reason why people tend to bottleneck in end-of-life care these days, but I don’t have room for it here so I’ll have to cover it in the next post:

Odd Thing About Dying #2: We’d like some destiny with our death please.

copyright Dia Osborn 2013

Related articles:

“Maybe we need to redefine “Palliative Care.”

“Hospice Misunderstood by Patients, Providers Alike”

“Why MOST doctors like me would rather DIE than endure the pain of treatment we inflict on others for terminal diseases.”

Banding Hummingbirds for science . . . and the thrill of holding such a mystical being!

This is something I’ll have to look into doing next year! I can’t imagine actually holding a hummingbird. Wow.

Rangewriter

 

Please forgive me for shamelessly reposting this report that was initially published in August of 2013.

Whoohoo! An update to this post: Today, The Idaho Statesman reports that hummingbird banding projects across the country are paying off with new understandings and fresh questions about the life of a hummingbird. It is becoming clear that the life span of hummingbirds is much longer than the two to three years originally assumed. And a new-to-Idaho species, the Anna’s hummingbird, has made several appearances. The crucial missing link in this long-term research is active bird-banding at the migration destinations in Mexico and Central America.DSC_1103 - Copy

Between May and September, hummingbirds are on the move across Idaho. At least three species of these itsy-bitsy birdies—smallest bird species in the world—migrate from their winter range in Mexico to their breeding range in Alaska and back again.

The Intermountain Bird Observatory (IBO), a department of biological…

View original post 227 more words

There’s a whole lotta love coming out of Oklahoma

20130812_131340_resizedBook Review: Transitions: A Nurse’s Education About Life and Death by Becki Hawkins.

Some of you may remember an old post I wrote called Someone Else Wrote My Book: What Now? where I expressed some angst at the discovery that a hospice nurse/chaplain from Oklahoma had just published the book I was trying to write.   Well, after a year of dark muttering in my cups I finally read Transitions: A Nurse’s Education About Life and Death by Becki Hawkins and loved it.  Loved.

Her book brought it all back to me again in the best way, what it used to feel like when I worked with hospice and how the people I served strengthened, nourished, and changed me.  Transitions provides an authentic portrayal of the endless number of ways that people face catastrophic illness and death, not in a clinical or grisly way, but in terms of the beautiful and vulnerable humanity that inevitably surfaces.

More poignant still, Becki reveals the transformative power generated by something as simple as accepting the overwhelm and grief of another human being.  There are some terrific reviews over on Amazon that do a better job than I could at describing her gentle, loving handling of the subject matter (especially the one titled Nurse Conquers Attack Geese, Copperheads, Sceptics which I wanted to copy and paste in full here but didn’t for fear of getting caught) so I won’t try and cover that ground again.  I’ll just mention a few of the particular reasons why I loved the book so much myself.

Number one, Becki’s career spanned decades and her stories are written through the eyes of someone who’s seen people die from a lot of different things, something that’s actually pretty rare.  I got to take the journey again with her as she evolved and changed through the work and it took me right back to the mystery, magic, and intense vulnerability one experiences while roaming the dying rooms.  The way that each person winds up teaching what an extraordinary, mind blowing feat it is to live an entire life from beginning to the very end.

There is no such thing as a boring life, just boring ways to talk about it (something one encounters both in and out of hospice.)  But with some practice, good listening skills can overcome that problem and Becki’s clearly a master listener.  She draws out the thoughts of those she worked with in a way that allowed a quality of luminous, trembling soul to shine through and the book is full of the kind of dignity and strength that results from that level of respect.

Which brings me to the second reason I loved the book.  Becki not only captures the full range of experiences of what it’s like to work with the ill and dying, she captures it in the abundant charm of the Oklahoma vernacular.  She has quite an ear for the spoken word and delivers her stories in an enjoyable blend of modern medical language and the older, traditional language of her people. For me, the book was as much a loving portrayal of the culture and people of rural Oklahoma as it was of their health status, and when reading her stories I felt like I was peering in through a window to catch glimpses of an old wisdom tradition passed down through the generations.

A quick head’s up for those who are not of a religious bent, a lot of this wisdom tradition is couched in the religious terms of the region and from a couple of reviews I read this was a stumbling block for some people.  It was actually part of the reason it took me so long to read the book myself but as I got to know Becki personally over the last year I discovered that she’s one of those people who can love her own faith while also respecting and supporting the beliefs of others and that knowledge helped me relax and let down my shields.  I’m really glad I did, as I would have missed something beautiful, heartfelt, and universally true otherwise.  No matter how we express it individually, we all die with the same aching mixture of heightened longing and love.

And the final reason I loved it that I’ll mention here is because in the last section of the book Becki reveals how her professional work with the ill and dying eventually helped her navigate the illness and dying of her own loved ones, and I found her experiences to be a confirmation of my own.  While the illness and death of a loved one is just as overwhelming for those of us who’ve worked with the dying…the loss as great and the grief as piercing…still our familiarity with and intimate understanding of the dying process helps enormously when the time comes.  I can’t say this enough.  A knowledge and understanding of dying is an anchoring influence for everyone involved.

Of course everyone can’t go out and become a nurse and work for decades in the field to gain that kind of familiarity and understanding, but everyone can read books like this and begin to arm themselves with the knowledge of those who have.

I know I keep saying this over and over again but it’s only because it’s so important: We all need to be better educated about this last and greatest journey of dying, and we need to start doing it now.  The number of aging people approaching their final threshold is growing daily and in the next few decades dying will become a central, collective social event.  But that doesn’t mean it has to be a sad, tragic, and horrible era.  At all.  With the tools and perspective that hospice and palliative care provide it’s entirely possible for us to collectively craft a thoughtful, courageous, and wiser way to approach the end of our lives, one that’s dignified, loving, generous, and ultimately life-nourishing for us all.

Transitions: A Nurse’s Education About Life and Death is another book among a (thankfully) growing number that provides a window into such an approach.  I highly recommend it.

Other references:

Here’s a Youtube video of an engaging talk Becki Hawkins gave in Sedona, Arizona about some of the spiritual experiences she saw in her work.

And here’s a link to Becki’s blog Transitions.

People who smoke are not evil.

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(Image of a Mayan priest smoking from Wikipedia.)

I’ve been thinking about a different but still dying-related subject lately.

Over the last fifteen years or so I’ve watched with dismay as the denigration of people who smoke escalated into a kind of national past time. I’ve occasionally even heard them described in terms so derogatory that it put me forcibly in mind of parallel language used by hate groups, and this from the mouths of people who sincerely, deeply abhor discrimination and prejudice.

That caliber of conversation can be very seductive and feel so good and right and even funny to those engaging in it, but in reality it’s not terribly helpful to anyone who’s actually trying to quit.  I think we’d all be better off if that part of the discussion took a more constructive direction.

I’d like to mention here that there is no such thing as a smoker.  (Well, there is, but it’s a piece of equipment that dries meat.)  There are human beings who smoke, which are two completely different things that we need to separate in our minds and then deal with accordingly.  It’s perfectly appropriate to condemn tobacco use and the dealers who market and peddle the poison and make fortunes off of the misery they create, as well as the incredible trail of destruction that smoking leaves in its wake.  But it’s misguided and counterproductive to condemn the living, breathing, struggling human beings who have been caught by the addiction.

Here are a few stats from the Division of Periodontology at the University of Minnesota (smoking wreaks havoc on gums, too) that might help explain:

Tobacco is as addictive as heroin (as a mood & behavior altering agent). 

  • Nicotine is:
    • 1000 X more potent than alcohol
    • 10-100 X more potent than barbiturates
    • 5-10 X more potent than cocaine or morphine  

Pressures to relapse are both behaviorally & pharmacologically triggered.

(A pit stop at their website to peruse withdrawal symptoms might also yield interesting fruit in terms of understanding how incredibly hard it can be to stop smoking.)

Please believe me when I tell you that nicotine addiction is a powerful, powerful enemy and it can require an almost superhuman effort to escape from the dingy, coughing, stinking prison it can create in a person’s life. I speak from experience.  In tobacco products, nicotine often behaves like a pusher or a pimp, seductive at first and promising all kinds of good things, then insidious, relentless and, finally, horribly abusive.  Some people can smoke occasionally without getting snared but for the millions of us who can’t, the addiction is dangerous, degrading, and eventually deadly.

After thirty some odd years of failed attempts I was finally able to quit.  I sincerely believe it’s for good this time (nine years now) although I’ve learned not to be complacent because cigarette cravings can spring back to life after years of dormancy with a viciousness that has overwhelmed my defenses more than once.

But I wasn’t able to finally quit because I was surrounded by strangers who were gazing at me with loathing, or whispering snide comments, or making me the butt of cruel and demeaning jokes.  Quite to the contrary in fact.  That kind of treatment was hurtful and humiliating and far from acting as a deterrent it tended to drive me back to the very real and powerful, if costly, relief that nicotine provides.

What did help were the people in my life who saw me as a flawed and smelly but still somehow beautiful human being worth loving in spite of my habit.  Ultimately, I had to enter the trenches and fight my demons alone, numerous times, just like every other addict does.  But the fact that I had people in my corner rooting for me and telling me they believed I was worth fighting for made all the difference in the world in my finally succeeding.

I hope that’s something you’ll consider if you find yourself looking at someone with a cigarette and feeling the urge to flippantly judge or condemn them.  Try and separate the tobacco from the human being if you can and then hate the one and find value in the other.  Of course, set whatever boundaries you need to where the smoke is concerned, but try and do it with respect and encouragement instead of contempt.  I honestly believe that will ultimately be of more benefit to everyone.

Here are some great tips for those who want to support someone they love to quit smoking:

Helping a Smoker Quit: Do’s and Don’t

10 Things Not to Do if You Want Someone to Stop Smoking

And for anyone trying to quit smoking and looking for support here are a couple of places where you might start:

Nicotine Anonymous

Resources for Quitting Smoking (full of hotlines)

Quitnet

What Color is Dying? (Hint: It’s a Trick Question)

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During a chat over coffee this morning a colleague asked me the above-mentioned question and…I admit it…the first color that came to mind was black.

He smiled and said that was the first color that came to his mind, too, and during the following discussion we agreed that black would probably be the first color springing to mind for the majority of Americans and possibly other western cultures, too.  (It would probably be white for many of those from eastern cultures.)

So why is this a trick question?  Because black (and white in some cultures) is the color associated with death.  But dying people aren’t dead yet.  They’re still very much alive.  This question reveals how we tend to subconsciously view the dying as close-enough-to-dead-to-count, an unfortunate tendency that does a lot of harm to everybody.

This prejudice is deeply ingrained as evidenced by the fact that even my colleague and I (who have worked extensively with the dying in hospice) still defaulted to black as our first association.  Like any solid prejudice I believe it’ll take work to examine, uproot, and then change it, but it’s worth the effort because if we don’t, we’ll all wind up as one of “those people” while we’re dying and suffer the stigma and exile that currently goes along with it.

Once my colleague and I recognized and talked about our conditioned response, we then asked the question again and came up with completely different responses.  He said that, for him, dying is actually quite purple, a color that he loves and relates to on a deep level.  I on the other hand kept seeing a prism in my mind, shattering a sunbeam into a thousand different colors.

And here’s what I found most interesting about the difference.  When I saw dying as black I felt like I’d just pulled a plastic bag over my head.  But when I let that go and suddenly saw it as a prism full of rainbows instead, that feeling of suffocation turned into curiosity and wonder and a delightful sense of mystery which honestly was the experience I tended to actually have when I worked with hospice.  It was really, really magical hanging out with dying people, not black at all.

BTW, the opening/closing question marks at the top of the post came from a Wikipedia discussion of question marks (“also known as an interrogation pointinterrogation markquestion pointquery, or eroteme”), which was kind of interesting in its own right and totally distracted me.  (Not hard to do though.)  Here’s the link.

copyright Dia Osborn 2013

How to talk with someone who’s dying.

There’s an extraordinary video blog I’ve been following for a while which chronicles the cancer adventures of a man named David and it’s been heartening to me, watching someone talk so freely and openly about what it’s like to face the realities of catastrophic illness and the possibility of impending death.  David is very engaging.

I was a little late to his most recent post (posted back in June) but it appears that after a glorious period of remission his cancer is back, with a vengeance, and the prospect of impending death has now turned into the certainty of it.  This video addresses the various thoughts coming up for him around the sudden turn of events.

I HIGHLY RECOMMEND WATCHING THIS for anyone who’s ever wondered what in the world they’re supposed to say to someone who’s dying.

It’s about ten minutes long and worth every second.  David covers what it feels like to have people tell him that he still looks great, or talk about/plan future events that he’s not likely to share in, or in other ways try to skirt or deny his new dawning reality and place him in a position of having to pretend like everything’s still okay.

Then…and this is the extraordinary part for me…he talks about what it’s really like living in the constant awareness that everything he’s now experiencing is probably for the last time.  How in some moments he experiences great fear of the passage to come and how at other times the world around him is highlighted with an exquisite, poignant beauty that’s both heartbreaking and luminous.

These are the kinds of things that all dying people think about but usually find it difficult to share.  David is brave and articulate enough to step up to the plate and actually tell you about it.  I warmly invite you to take advantage of this rare opportunity and learn from him.  It’ll hopefully help make your next encounter with someone who’s dying more nourishing and comfortable for you both.

UPDATE: The hubster pointed out that, in spite of the promise in this post’s title, neither David nor I gave any explicit instructions about how to talk to someone who’s dying.  (It wasn’t David’s intention in the first place and I…well, I just dropped the ball.)  To remedy the lapse:

In a nutshell, don’t run, don’t deny, don’t deflect.  Instead, listen carefully to what they’re trying to tell you, let it in, then follow their lead….as best you can of course.  There’s always a learning curve so be patient with yourself.

That approach usually opens up whole new worlds.  –Editor

Random Hot Tip About Dying #5

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(This photo is taken from an email forward I received full of beautiful tunnel photos, none of which were credited of course.  Grrrr.  I’d LOVE to give credit where it’s so richly deserved so if anyone knows who took this shot, please, please, please let me know!)

This post is continued, as expected, from Random Hot Tip #4.  It’s a looooong one.  Sorry.  (Although if you think reading it is hard, you should try writing it.  F**k.)

Last but not least we come to random hot tip #5:

There’s some version of an afterlife/afterwards for everyone.  Pick yours and start making it work for you now.

To be honest, this morning I’m wishing I never added this tip to the list.  It’s a loaded subject…something I realized with chagrin as soon as I sat down to write this.  Plus, I’m not a chaplain or an atheist or a ghost or anyone else qualified to address either side of this existential topic with authority.

But since I swore to myself that this time I’d follow through and explain every last tip I so glibly tossed out there, I guess I’m stuck with it. I’m only going to share what I observed and then one thought I had about it, hopefully without upsetting anyone enough to make them yell at me.  Here goes.

One of the many intriguing things I encountered while working with hospice was the wide range of beliefs about what happens after a person dies.  I’d already heard about most of them of course, but still, they take on a whole new light in a hospice setting.

For one thing, they finally matter.  A lot.  The people I was working with were about to actually find out what happens for themselves, and they cared about it in a way that people who aren’t dying yet just don’t.

In addition, I was experiencing a kind of full body immersion in each belief while hopping from home to home.  Working in hospice, it’s critical to understand and embrace the unique beliefs of each home we enter in order to best support the dying person and their loved ones from the foundation they’ve built in their own lives.  We don’t have to adopt their beliefs of course…we can’t, there are too many of them and often conflicting besides…but we try to observe every sign of respect, and look closely for whatever value, love, and strength is inherent in each, and then use that as much as possible to deliver our help.

(It really changes you, by the way, learning how to find, respect, and embrace the good in someone else’s beliefs without having to believe it yourself.  I can’t tell you how much more mysterious and beautiful and friendly the world becomes in an instant.  It’s pretty amazing. Harder to do outside a hospice setting though.)

I couldn’t help but notice how much this particular belief, the one about what happens to a person after they die, influenced the way each person viewed the value of whatever life they had left, as well as shaping how they faced their dying process.  While each belief I encountered was absolutely unique, collectively they seemed to break down into three broad categories:

1) The belief that their spirit or consciousness or self will continue in some way afterwards.

2) The belief that their consciousness or personality or sense-of-self will end with physical death (and hopefully that their legacy lies in the good effect they had on the world.  Without this second part their depression was pretty pronounced.)

3) The belief that they really, truly don’t know what happens and they’re waiting to find out.

The majority of people around here fell into the first category, which was also the one that seemed to help most with a person’s fear of dying (unless they felt guilty about something and worried about punishment after the fact.)

The number of people in the second category were far fewer and, while they savored the sweetness available at the end as much as anyone, overall I found them less prepared to cope with the many indignities involved, with a greater tendency to devalue their life as their helplessness grew.

And in the end I didn’t see anyone who genuinely believed number three.  While there were a number of people who said they didn’t know what happens (actually, they always said nobody knows what will happen) it eventually became clear that really, they believed in one of the other two but were just reluctant to say so for various reasons.

Okay.  That’s what I observed.  Now here’s one of the main thoughts I had about it.

I think all three beliefs have the potential to wield a final influence that’s helpful or harmful.  But in reality, there was a general trend worth noting.

Belief Number One…the one that says some version of the self continues after death…usually did the best job of helping the dying person face and navigate the profound challenges involved at the end of life.  These people tended to experience less bitterness about the indignities they were experiencing and genuinely longed for their lives more all the way to the end.

Now, BEFORE ANYONE STARTS SCREAMING AT ME:

I’m not suggesting that this in any way makes Belief Number One a superior belief, or that it means everyone should embrace it.  I’m not.  That would be utterly useless and disrespectful besides.

What I DO think is that Belief Number One has had tens of thousands of years worth of a head start on weaving some kind of nourishing, helpful meaning into the overwhelming existential realities of dying and death.  Collectively, we’ve been living with, exploring, and deepening our belief in an afterlife since the dawn of human history so no wonder it works for us now.

Belief Number Two (let’s leave Three out of this for a moment) is a relative newbie on the scene and has, in some ways understandably, spent more of its time trying to reject the meaning offered by Belief Number One than it has developing an alternative but equally helpful and nourishing meaning of its own. But with the growing number of people embracing this belief I think it’s work that really needs to be done if they’re not to overwhelmingly choose suicide or euthanasia at the end as seems to be the current trend. (I only mention this because killing ourselves and each other, especially in large numbers, can wreak havoc on a society.)

We humans need meaning. It’s not a weakness, it’s just a thing.

I have a couple of friends who believe they’ll cease to exist at the point of death (actually they believe everyone will, but then that spirit of generalization is a quality generally shared across beliefs.)  But they also feel a profound curiosity about some tendrils of mystery they glimpsed during an experience with the loss of a loved one.  They feel attracted to what they experienced and uplifted by it, but are reluctant to admit it publicly because it’s precisely the kind of thing that’s so easy for the other side to misunderstand, twist, and then crow over.

But in private they share that they’re as moved as anyone else by the symptoms of strange and serendipitous beauty they witnessed towards the end.  It’s just that they ascribe the mystery involved to something else, even if they’re not entirely sure what yet.

And then there’s Belief Number Three.  Even though I never worked with a patient who truly embraced this belief, I know other people who do, at least so far.  (We’ll see if it holds up under the final test.)  And, after six years of watching people die, this is the one that I myself have drifted in closest to.

I’ve had a number of people over the years ask me some version of the question After everything you’ve seen what do YOU think happens after a person dies?   And honestly?  At this point I kind of feel like the sky’s the limit.  I suspect anything can happen.  Maybe ALL of it happens, just to different people.  Maybe some go to Valhalla or Hades or Heaven, maybe some stick around for a while to help their descendents along, maybe some really do just cease to exist while others merge with Nirvana or a mountain or the entire universe somehow.  Maybe some reincarnate, or get stuck haunting for a while, while others continue on in some way or form or place that nobody has even imagined yet.

I really, truly don’t know what to believe about all that anymore.

But I’ll share something I experienced numerous times that left a deep impression. It was this sensation of a vast kind of love that tended to show up in the dying rooms.  How, when everything else was finally stripped away and all of us were left there, raw and quivering and totally exposed, what remained was this current of love in the room that swept me off my feet and sent me reeling every single time.  I honestly, hand to god, don’t know where it was coming from…that’s my mystery.  Whether it was just me feeling it, or if it was coming from the other people who were there, or from something outside of us all, or some combination that then took on an existence of its own, I just don’t know.

What I do know is that it’s influence was about as real as it gets.  It was tangible and helpful in the most physical way, and weirdly it both seared and reassured me, and sometimes other people told me it helped them, too, and over time as my eyes adjusted to it, I started to see it in a lot more places.  Like…well, almost everywhere.  And after a while the sheer energy of it started to transform me to the point where I was having a little trouble functioning in the world actually, which is an interesting but different story.

And then one day I realized, to my surprise, that I was shifting away from everything I used to believe in and starting to just believe in that experience of love instead.  And that’s kind of where I am now.  I have no idea what will happen after I die and don’t really care beyond some mild curiosity.  However, I do hope that whatever happens, this big love that gets generated from where-I-do-not-know will still be around because, if it is, I feel like I can deal with anything else.

That being said, the question of “afterwards” feels kind of irrelevant to me right now.  The big gift I’m getting out of believing in this love is that, whatever happens next, it’s nurturing and comforting me today.  It makes me want to be a better, kinder, more compassionate and understanding person now, it lends me courage and meaning and strength now, and it inspires me to take better care of my little corner of the world right now.

And ultimately, I think that’s something practical and immediate that any of these belief should also shoot for.  Whether or not they wind up being true in the long run, if they deepen and enrich and strengthen our lives and communities and world right now then we should develop and embrace them.  Because we desperately need all the help we can get while we’re here.

Anyway, that’s my two cents worth.  Add a couple dollars and it’ll buy you a beer.

copyright Dia Osborn 2013

 

After a Crisis of Faith, a Former Minister Finds a New, Secular Mission

Good Without God

Mon Pere Speaks! Hospice in his own words.

I’ve written about my father-in-law’s surprising, tricky, and wonderful journey with prostate cancer and hospice in several posts now. (I’ll have links to them at the bottom for anyone interested.)

Well, Mon Pere’s experiences with hospice have been so good that he’s become quite the convert and unbeknownst to anyone in the family, he went off and did an interview with the Idaho Quality of Life Coalition in order to try and help alleviate some of the persistent confusion that exists around hospice care.  Afterwards the video was posted on Youtube!  (Which is all kinds of ironic since Mon Pere doesn’t own, want, or even like computers very much.  I’m pretty sure he doesn’t know what Youtube is.)

Anyway, my brother-in-law just stumbled across it by chance today and emailed the link to the rest of us.  I thought I’d put it up here, too, both to help Mon Pere with his awareness raising efforts as well as introduce him to you all in person.  (The interview is about six minutes long.)

He’s really trying to behave himself but his ribald sense of humor sneaks in towards the end with his little joke about dancing (the unabridged version suggests a more carnal activity.)  We’ve all heard the joke…and others like it…more times than I can count but he laughs like it’s the first time, every single time he tells it.  He’s such a character.

Without further ado I give you Mon Pere.

copyright Dia Osborn 2013

The other posts:

Elders and the strange gravitational effect of final mystery.

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

“I hope you don’t mind but I’ve never died before, so I have some questions.”

Massachusetts and Question 2: Should doctors be allowed to prescribe lethal doses?

 

When odd ducks finally find each other.

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Well, I don’t even know how long it’s been since my last post.  My daughter got married this month and, while life at the wedding-zoo was fun and magical and fascinating and celebratory and emotional and very, very important, I was still relieved to take the last guest to the airport at the end of it all and return to an empty home.

Silence cannot…I repeat cannot…be overrated.

A few of my favorite highlights:

1) Daughter is a costume maker and she and old friend Bombshell Bridesmaid dressed up one night in an authentic can-can dress and 17th century French court dress to go to a local, Idaho bar.  When I asked her she grinned and said nobody paid much attention because “they all know me by now.”

2) All the girls wore crowns. Daughter loves crowns and feels everyone should have them.  She sometimes wears one on bike rides.

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3) Daughter loves a production and enrolled the weather gods to help.  After a heat wave that lasted weeks the wedding day dawned overcast and chilly with breezes.  Black storm clouds rolled in during the garden ceremony (with the wind occasionally blowing over the microphone to sound like thunder…pure genius) but nary a drop of rain ever fell.  Shortly before sunset the light broke through to make a rainbow that lasted close to half an hour for photo ops.  I mean really.  Bravo you guys.

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4) The original wedding cake (a bass drum in honor of the drummer groom-now-son) slid off onto the baker’s garage floor during transport.  This was the back-up cake.  Note protective box.

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The baker deserves a medal for this.  I mean, really.  Stunning.

5) The stylist for the girls was a no-show.  Enter, Son’s Bay Area girlfriend who just happened to have all the make-up and styling equipment necessary to prep five women for a wedding.  She swooped in and made them all gorgeous then zipped off to whip together her own exquisite coiffe.  (Who was that masked woman?!!)

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7) Daughter and New Son just laughed, drank champagne, and waved every setback off.  They were totally in it for the ride.

8) Daughter included the promise to obey in her vows!  Naturally, nobody believed it but the dramatic effect was magnificent.

6) My aunt who’s a quilt maker pulled an unfinished quilt out of mothballs that my great grandmother started close to seventy years ago.  Originally pieced together from old pajamas, shirts, and house dresses but never backed, quilted, or edged, it passed first to my grandmother then my aunt fifty years ago.  Aunt decided it was high time to finish the thing in honor of great-great granddaughter’s marriage and I can’t be certain but it felt like the full lineage of matriarchs was present for the opening of the gift.  (Great group of old broads btw.  They were no doubt cracking bawdy jokes about the wedding night.)

On a serious note, I feel very, very fortunate that my daughter chose a good, kind, unflappable man with a huge heart and a quick brain, and that the two of them are SO well matched: eccentric, artistic, and profoundly laid back.  She can happily dance to his drumming for hours and he genuinely enjoys the weird and wonderful way she so often dresses.  Really, it’s kind of heartening that two such odd ducks could even find each other in a huge world full of trillions of people  like this, and even more surprising that they actually got married since I thought they’d just live together happily ever after.  Life is a mysterious, generous, magical thing sometimes.  It truly is.

To my daughter and new son: With all my heart I wish you a long and beautiful life together full of love, courage, willingness, and continued trust and faith in one another.  May the storm clouds forever mass on your horizons for dramatic effect, never actually break, and delight you afterwards with enduring rainbows.

I do so love you both,

Mom

p.s. I’ll cover Random Hot Tip About Dying #5 in my next post.  It seemed a little incongruous to add it here, even to me.

Random Hot Tip About Dying #4

(This post is continued from…wait for it…Random Hot Tip About Dying #3.)

Up next:

Tip #4: A “good death” is good for everyone.  A “bad death” is bad for everyone.  As a group we need to be shooting for a lot more good deaths than we are.

This tip is proving a lot harder to explain than the first three, perhaps because I only came to understand it myself by accident.  The way that each person dies affects FAR more than just the person who’s dying and those immediately around them, but I didn’t really understand that at first even though it seems so obvious now.  I arrived at the insight as a side effect of two other things I was doing:

1) Observing a lot of people die in a variety of ways from an assortment of causes while working with hospice, and

2) Listening to a lot of additional people tell me stories about their exposure to death and dying ranging from war zones, to murder and suicide, to accidents and mistakes, to emergency rooms and ICU’s, to the experiences of a friend during his brief stint working in a slaughter house long, long ago.

(And yes, animals, too, can die both good and bad deaths which yield a lasting influence…something else to think about.)

I’m not a counselor or anything, I’m just interested in people and like to hear their stories…which was usually all the prompting needed.  It was a little disconcerting to learn how many people there are out there who want and need to talk about these events with almost no chance to do so.

On the other hand, it was very heartening to see how much being able to talk about it…even once with a complete stranger…could help them.  It was like watching someone carrying a boulder around on their back finally put it down and rest for a bit.

Anyway, I discovered a trend that’s also been born out in the research (and is actually just common sense.) People who experienced someone dying badly suffered more lasting trauma than people who witnessed someone dying well.  They wound up needing more help themselves to deal with the trauma afterwards, it took them longer to recover and often only partially, they were less productive in their lives than they had been before the experience occurred, and their trauma translated into varying degrees of additional burden for the people who loved them.

And then these other people wound up passing on some of the burden on to their extended world.  And so on.

It’s the ripple effect.  Think of each death as a rock getting dropped into a pond, they all disturb the stillness of the water.  Each time someone dies the fierce energy it creates spreads out into their extended world and a whole lot of people…both loved ones and perfect strangers…wind up getting rocked by it.  Sometimes small rocking, sometimes capsizing.  Depending on how any one person dies it can eventually result in disability, alcoholism or drug abuse, divorce, bankruptcy, dropping out of school, estrangement, broken families, job loss, business failure, phobias, health breakdowns, and on and on.

Dying is an incredibly powerful force.  It just is.  That’s not something we can change.  But we could certainly do a better job of managing that force than we have been.  There are so many things that can be done to minimize the damaging influences and maximize the powerful healing potential that’s also available.

We really do have some control over the size of the rocks going into the pond.

So what’s the difference between a good death and a bad one?

First of all, a good death is not a black and white thing…which probably contributes to a lot of the confusion about what it is.  A good death doesn’t mean that you have to die in old age in your sleep, lying on white linen with hands folded over your breast and a beatific smile on your lips, all your loved ones sitting around the bed waving flowers and joyfully singing hallelujah, take them home.  Far from it.  It can happen in an infinite number of ways.  A good death can even be pulled out of raging carnage at the last minute sometimes.

(Seriously, you wouldn’t believe how powerful last words and gestures and other interesting phenomena can be.  They can have an effect that appears damn well miraculous to the naked eye. If we really understood as a society the force that’s available during that little window of time, and everyone started learning how to consciously harness it and put it to good use instead of allowing it to just randomly blow lives up the way we tend to now…well, I don’t know what would happen exactly.

But I suspect the rippling, transformative effect on our communities would be similar to the transformative effect it already has on the individuals directly involved.  Only collectively.  And if I’m right, there’d be a lot more hope, courage, and recovery going on and lot less crippling dread and futile treatment.)

Anyway, here are just a few things that can contribute to a bad death and increased trauma for everyone involved:

Violence, suddenness, youth, futile treatments, isolation, regrets, denial, poor communication, lack of control, abandonment, ignorance of the process, previous experience with bad deaths, in-fighting, lack of cohesion among loved ones, confusion, medical mistakes, insurance problems, uncontrolled symptoms, selfishness, poor quality care, and lack of help and guidance among others.

The list really does go on and on but I personally would put poor communication and lack of help and guidance at the top.  With those two in place it’s far harder for the others to breed and multiply the way they tend to otherwise.

Obviously, some of these things are harder to manage than others.  Accidental and violent deaths tend to cause the most damaging ripples, but a couple of ways these deaths are converted into good deaths is if they at least happen while the person’s doing something they believe in or love, or if some meaningful change can be effected in the world because of their death. It’s when they’re entirely random or pointless that recovery becomes most difficult.

Suicide, of course, is generally held to be the king of bad deaths.

Having said all that though, sudden or very quick death only happens to roughly 10% of the population.  The window in which to work on a good or bad death is going to be longer for the other 90% of us.

So what contributes to a good death?

Good communication, good education about dying, previous experience of good deaths, a long life, acceptance of dying, good relationships, respect of the dying person’s wishes, cohesion among loved ones, palliative and hospice care and adequate insurance for both, caring about the others involved, effective treatment of symptoms, loving care, completion of end-of-life tasks, enough time to get everything done, faith in something, and valuing the life still remaining among many, many others.

Enough!  I’m at about a million words now and have worked on this post for three weeks.  I really need to let this go now.

Next up: Random Hot Tip #5: There’s some version of an afterlife/afterwards for everyone.  Pick yours and start making it work for you now.