Category Archives: Living and Dying

Going Light

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

John Grey, a thoughtful and entertaining blogger/smallholder over at Going Gently, mentioned in a recent post that “going light” is a Welsh phrase for the accelerated wasting process that happens during the last days and hours of dying.  During this time it often looks like they’re starting to disappear right before your eyes.

The phrase really struck me, not just because it’s the loveliest way of describing this transition I’ve ever heard, but because it’s also the most accurate.  That’s exactly what the rapid changes look and feel like with both the body and spirit of someone who’s dying.

I’m going light now, Ma.  I’m going light.

Beautiful.

(Image: dan / FreeDigitalPhotos.net)

copyright Dia Osborn 2011

“The Good Short Life”

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

The New York Times ran a great opinion article by Dudley Clendinen last Sunday called The Good Short Life.  Great title.  It’s about just what it sounds like.

Mr. Clendinen has A.L.S., the best known of the motor neuron diseases which are generally held to be one of the most difficult ways to die.  It involves a gradual shutting down of the involuntary nervous system which, when left to its own devices, leads to a very, very slow suffocation.  The disease takes years to play out and is beyond horrible.

In the article he talks freely, openly, and gracefully about the good and bad involved with dying…and I love him for it.  He’s refusing to disappear into that cloud of gray mist where we so often relegate our dying–that place where we don’t have to see them or deal with them or think about what they’re going through.  Instead he’s speaking up (or writing up in this case), doing his part to maintain a normal, ongoing, comfortable chat about the whole thing.  About dying, that one other universal reality besides being born and drawing breath that we all have in common.

The article is two pages and worth a read.

He broaches a number of controversial topics including the overwhelming costs involved with long term medical care for a condition such as his and the moral question of who’s going to pay for those costs (…the respirator and the staff and support system necessary to maintain me will easily cost half a million dollars a year. Whose half a million, I don’t know…)  He also talks about the choice he’ll have to make about when he’ll die because that’s something those with a motor neuron disease always face; when to fight it, when to manage it, and finally how to either surrender or escape it, whether through the blessing of pneumonia or other infectious disease or a method more proactive.

Of course these are extremely loaded subjects to address, ones which tend to invoke some very strong emotions in people, but that doesn’t mean we don’t still need to talk about them.  Our medical system has advanced to the point where most of us are eventually going to have to face the same kind of choice as Mr. Clendinen.  A lot of people don’t understand this yet but most of us won’t just die anymore.  Medical advances have made it possible to sustain the barest physical functioning for indefinite lengths of time, usually far, far longer than anyone desires.  This means that sooner or later someone has to actively, consciously decide that we’re going to die.  Either we decide to forgo further treatments, our loved ones decide to withdraw life sustaining measures, or somebody else decides they’re not going to pay for it or provide us care anymore.

This is the darker underbelly–the turbulent, terrifying, whitewater rapids–we’ve created with our brilliant, modern, technological capabilities.  For better or worse, these are the kinds of choices that now go with the territory and we are all going to have to learn how to navigate them.  There’s no such thing as a gift–however miraculous, however blessed–that isn’t also accompanied by a burden of responsibility.  In this case we now need to learn how to bear the burden of miraculous choices.

Not everyone will agree with the particular choices Mr. Clarinden eventually makes–which is fine, everyone doesn’t have to–but we can all benefit from studying the way he’s willing to talk about them.  Each of us, when faced with the unique circumstances of our own dying time, is going to have equally difficult choices to make, and simply knowing how to talk about them with our doctors and loved ones will make them far easier for everyone to navigate.

copyright Dia Osborn 2011

Crisis in Paris: How Modern Telecommunication Technologies Saved The Day

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

Remember this?  Anyone?  Anyone?

(image by Stromcarlson)

Our daughter is in Europe as part of her post-college graduation celebration.  Should be wonderful, no?  Well, we all thought so during the six months of planning involved, but unfortunately the trip hit the rocks on the three-stage plane ride to Spain.

Beautiful Child of our Hearts planned all along to travel with a good friend who has a mild anxiety disorder.  This didn’t seem to pose a problem because, up until boarding the plane, Friend had always managed it successfully with meds.  However, all that changed with the prospect of hurtling approximately 12,000 miles through the sky in a giant toothpaste tube.  In spite of everything her pharmaceutical interventions had to offer, Friend still collapsed and wound up crying for the almost seventeen hours it took to get to Madrid.  Things were somewhat better on land, but by the time the two of them limped into Paris, Friend was experiencing a full-blown meltdown.  It was at this point we received the phone call alerting us to the fact that we now had a mental health/medical crisis on our hands.

Enter:  The godsend of modern telecommunication technologies.

I don’t remember now the exact sequence involved, but at the crescendo of the next three hours of crisis management we had myself in Boise, my sister in Seville, my wife-in-law in southern California, my nephew in southern France, Friend’s (frantic) father somewhere else here in Idaho, an airline phone representative who was God only knows where in the world, and of course our two, inexperienced travelers in a tiny, internet cafe/closet in Paris, all tied together by an intricate web of technology, working on the common goal of getting this fragile, at-risk, woman-child safely home.

Even in the midst of the major stress involved I was struck by how amazing it was; the bewildering complexity of communication taking place.  This was so not the world I grew up in.

We utilized telecommunications capabilities provided by Skype, Sprint, AT&T, Verizon, Telefónica, France Telecom, a couple of land-line phone providers, and whoever the telecommunications company is in Estonia.  There was a staggering array of computer and hand-held device makers involved as we all furiously worked online; talking to the girls, researching various train schedules and flight options, and firing notes and links off to one another through email and instant messaging capabilities.

Now, I’ve seen all the commercials.  I know that what we were doing barely scratched the surface of the mind-boggling communication possibilities available in today’s world.  But it was still amazing and miraculous and wonder-filled to me.  Twenty-seven years ago when I made my first trip to Europe, the only way to communicate en-route was with collect calls on an ancient system of randomly placed pay phones. Today’s situation would have been far more difficult (and terrifying) to negotiate back then.

My father-in-law regularly bemoans the way technology is taking over the world.  He feels that it’s gobbling up increasingly large chunks of our lives, smothering so many of the old pleasures that used to nourish our hearts and minds.  He thinks people should spend less time in front of a screen and instead get out in nature more, talk to each other more, read and attend lectures and go dancing more.  And he’s not wrong.  One of the modern disciplines we all need to develop is getting up out of the chair and walking away of our own volition.

That said, my daughter and her friend would have been in a lot more trouble than they were without all the advantages that have also come to us through technological developments.  There’s an old proverb that says something like Everything is both a blessing and a curse.  I think it’s always our job to reap the blessings while keeping an eagle eye out for the curses.

Long story short, together we found a way to get Friend onto a plane, out of Paris and…a mere twenty hours or so later…safely back home again.  Beautiful Child stayed behind in Paris, a little scared but stubbornly determined to see the city of her dreams anyway.  But finally, a bad case of bed bugs drove her out of the hostel in France and down to her aunt’s house in Seville for help with the infestation.  (A whole ‘nother episode of fiasco that deserves it’s own post.)  C’est la vie, no?

copyright Dia Osborn 2011

Their Body: It’s Not Them Anymore But It Still Deserves Our Thanks

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

(This is the conclusion of the previous post, It’s OK To Still Love Their Bodies Once They’re Gone.)

The hubster and I returned to Mr. B’s house the following day and, not having been around a dead body this far after the fact before, I wondered if it would smell.  The answer, happily, was no, even though the house was quite warm.  I’m not sure what the usual rate of decomposition is, but in Mr. B’s case, twenty-four hours hadn’t been long enough to pose a problem. In addition, not only had Mrs. B and I carefully bathed his body shortly before I left the day before, she and Cousin A had bathed it again in the evening.  I admit that even though I was prepared to accept whatever state his body was currently passing through, finding it clean, cared for, and odor-free was definitely better.

After greeting the family and catching up on events of the night, I finally walked over to the bed to see him. The difference a day makes is profound.  Mr. B no longer looked even remotely lifelike–on the contrary, he looked unearthly.  His skin was white and flawless, like fine porcelain.  As though an artist had slipped in during the night and shaped an exquisite replica of Mr. B’s face down to the tiniest, loving detail, kissed it, and then left it there against the pillow before slipping away again.

He was resting beneath a lovely, homemade quilt a friend had given him during the fruitless months in rehab and, being the tactile person I am, reached down and laid my hand on his chest.  I knew, of course, he would have hardened by now.  I was expecting that.  It was the cold that surprised me.  Strangely, he felt even colder than the room, but that may have just been a mistake of expectation.  He might have seemed colder because some deep, unquestioned instinct in me–the one that has to believe my loved ones will always, always be warm–was inexperienced.

I stood there for a minute, waiting for another wave of some emotion to hit me…loss, repugnance, regret, relief…but there was nothing really.  Just peace.  He was still and I was still.  The storm and wild ride had come to an end and now all I felt was finished.  It was as though Mr. B had retired the day before with great fanfare, gratitude, and good wishes, and now I’d returned to work in the morning to stand gazing for a minute at his empty cubicle.

Although, no.  Not a cubicle.  His body wasn’t like that at all.  A cubicle is just some sterile, temporary workspace that we work in for eight hours before we get to go home at night.  His body was so, so much more than that.  It was everything that had been solid and warm and real, the part of him we got to touch and dance with and talk to.  His body was the strong and loving arms that reached out and held us when we were small or lonely or afraid.  The voice that whispered to us, and laughed out loud, and trembled sometimes with the strength of emotions he could barely contain.  It was the seeds that brought children, and their children, and their children into this world.  And it was the lips that shaped a lifetime of slow, thoughtful words and then kissed us, warm and reassuring, against our cheeks or foreheads or lips.

No.  Mr. B’s body was nothing like a cubicle.  It wasn’t him either, but it was still something amazing and beautiful and longed for…something we were so grateful to know and touch while we had the chance, and that we’ll ache for now that it’s gone.  I think when someone dies like this, it’s actually a double loss; we lose THEM…that vibrant, animated, unique pulse of Life that was their miracle and gift to this world…as well as the intimacy, comfort, and warmth of their physical self.

It’s so much, this loss..so huge.

And yet, easier to bear somehow because this time at least, our good-byes were lingering.  Because he stayed with us for just that little while longer…giving him the time he needed to unwind from his body and us the time we needed to unwind from him.

copyright 2011 Dia Osborn

It’s OK To Still Love Their Bodies Once They’re Gone

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

Before Mr. B died, he made sure his body would be left lying for twenty-four peaceful hours–at home–before going to the crematorium.  How sure?  Sure as in he sat down with his lawyer and wrote it into his will sure, making his wish legally binding in Idaho.

His request may sound strange to a lot of people–it certainly does to the average person around here–but the practice is customary among Buddhists who believe that the bond between personality and body takes time to unwind after death.  (I’m not Buddhist but I think the following link is a fairly good explanation of Buddhist beliefs about death and dying for those curious to learn more.)  Of course, the Buddhist belief is different from the prevalent one held in our culture which says our personality/essence/soul/consciousness/whatever one calls it…our us-ness…separates from the body completely at the moment of death.  Even Christians and scientists are aligned on this point–they don’t seem to diverge until the question of what-happens-afterward crops up.

Mr. B’s family was totally on board with his choice and perfectly willing to keep him around.  And me?  I was all for it, too.  I had a personal stake in finding out what effect this choice would have on the loved ones Mr. B was leaving behind. Two years later and I’m still grappling with the distress I felt at abandoning my mother’s body in the hospice house where she died.  I looked at this opportunity with Mr. B as my chance…a gift!…to see what it’s like for a willing, loving, respectful family to keep the body of their dead beloved with them for a little longer–to discover if it helps ease their grieving afterwards.

The hubster and I lingered for an hour or two after Mr. B died, drifting along on the tender current of hugs, tears, laughter, phone calls, rehashing, and story-telling that always follow a good death.  But finally I needed to head home.  I hadn’t gotten much sleep during the night and required a shower and a nap.  Just before leaving, I returned to the bed, leaned over, and laid my cheek against Mr. B’s, whispering I sure do love you, sir.  Have a safe journey.  Knowing you was an honor and a gift.  Then, unexpectedly, I started to cry.

Mr. B’s face was still soft and life-like and, for whatever reason, in that moment it felt like like he was still there.  Not necessarily inhabiting his body per se, but just present somehow.  Around.  It seemed like he was smiling and relieved.  Like everything was okay.  No…better than okay…good.  It felt like he’d suddenly gotten a lot bigger, too, in some insubstantial but still oddly tactile kind of way.  Hard to describe.  (This experience of a sense of presence is actually common among the bereaved, with some studies putting the rate of occurrence at well above 50%.)

That momentary sense of his presence pierced the numbness of fatigue creeping over me and sent me plunging back down into my heart again.  The tears felt painful, bewildering, and sweet, all at the same time.  It reminded me of the day I discovered the stuffed animals my daughter abandoned the day she left home, still sprawling against the pillows in her bedroom.  It was unexpected, walking in and finding them like that–an innocent reminder of her childhood life with us–and I curled up on her bed, gathered them in my arms, and lay there in the ache of remembering for the longest time.

We shared a bond, these toys and I.  They’d been left behind, like I’d been left behind. She loved them, like she loved me.  And lying there clinging to their soft bodies and fake fur, I was awash in all the nourishing, enduring love she’d left behind for us.  I could feel her again, all across the bed, and I realized we’re all born magical like that–with a mysterious ability to place a tangible, lasting kernel of ourselves inside the people we love so that no matter where we go, no matter how big the hole our departure creates, at least we never leave those behind us completely alone.

(This post is turning out to be longer than I originally anticipated so I’m going to spare you all and spread it out over a couple posts.  Next time: Their Body: It’s Not Them Anymore But It Still Deserves Our Thanks)

copyright Dia Osborn 2011 

A Blogging Topic That Repels Spammers

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

In the eternal, unwanted, ebb and flow reality that is spamming-on-the-blog, I’ve noticed something intriguing.  Posts on my main topic of interest…Dying…repel spammers.  (These posts also, unfortunately, repel readers, but let us leave that topic for a brighter day.  Sigh.)

It is oh-so curious, no?

The pattern has just recently become clear to me.  Roughly eighty-five percent of my posts involve something I’ve learned from the dying and the longer I stay on topic, the likelier the flow of spam will trickle off and die. (No pun intended.)  But when I drift off-topic and broach subjects like Arab spring, or annoying Google advertising, or Stihl gas powered pole tree pruners, the velocity of spam immediately increases at a spanking pace.

Spanking, I tell you.

Then I return to my main focus and voila!  All I have to do is write three or more dying-related posts in a row and it crushes the burgeoning torrent of spam as efficiently as Raid on roaches.  Seriously.  It’s just that good.

Even I never dreamed the taboo on speaking about dying was this powerful; that spammers respond to it (in a second hand, traffic sniffing kind of way.)  Who would have thought anything was that strong?  A fascinating and, for once, entirely happy consequence of breaking said taboo.

(Image from Wikipedia)

copyright Dia Osborn 2011

We All Have To Face Our Own Kobayashi Maru

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

USS Enterprise (NCC-1701)

Trekkies will probably know where I’m going with this.

For everyone else, the Kobayashi Maru comes from the original Star Trek movie series, and is a Star Fleet cadet training exercise that first showed up in the movie The Wrath of Khan.  It involves a computer simulation where any Star Fleet cadet aspiring to command a starship winds up confronting the ultimate no-win scenario; a confrontation with an enemy that culminates in the destruction of the ship they’re commanding as well as the death of everyone on board, including the cadet.

In one of my favorite plot twists, a determined James Kirk (image from Wikipedia) manages to sneak in and rewrite the computer program before he takes the test as a way to win the confrontation, but the program was designed as a battle to be lost.  That was the whole point; to determine the true character of a cadet by seeing how they responded to certain death.  After all, as Kirk himself later said when defending the test to a disgruntled cadet, how one deals with death is as important as how one deals with life.

Personally, I don’t think you can separate the two because, for the most part people tend to die the same way they live.  Fighters go out fighting, those with a good sense of humor find something to laugh at, controllers try to control the whole process, co-dependents worry about everybody else, and graceful people surrender with a level of dignity that humbles and awes the rest of us.  Trust me on this one…ALL of the virtues and flaws we cultivate in ourselves through our years of living are going to show up in spades when the dying time arrives.

Working with hospice was like watching people take the Kobayashi Maru, only in real life.  I found myself in the extraordinary position of watching person after person confront the certainty of their own death, and it was…well…it was a thousand things.  It was amazing, curious, humbling, horrible, surprising, heartbreaking, staggering, frightening, illuminating, and inspiring.

Getting the chance to witness and learn from so many different people facing this last and greatest test was a rare, rare! and priceless opportunity.  (…a fact that somehow, almost nobody seems to grasp.  So strange…)  And while everything I learned will unquestionably help me face my own death with greater equanimity, courage, and grace when the time comes, far more importantly it’s helping me to also LIVE MY LIFE with much greater equanimity, courage, and grace until then.

Next to giving birth, working with the dying was…hands down…the most life-affirming, life-nourishing, and life-celebrating thing I’ve ever done.  I could never thank or speak highly enough of the people who allowed me to be with them, there at the end.  It was truly an honor, a privilege, and a gift.

copyright Dia Osborn 2011

How to live the best life? Look back from the future.

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

Linda, a (clearly) wise and percipient fellow blogger, had this to say in her comment about my last post on writing an obituary:

“…it dawned on me one day, that all the guidance I needed for making choices in life would be to live my life the way I’d like to see it written in an obit.”

Amen.

Now I guess I just need to write an obituary for myself to figure out what, exactly, I’d like it to say.

Thanks Linda!

I Highly Recommend Writing An Obituary Sometime

Posted by Dia in Living and Dying and tagged with

Mr. B’s wife asked me to write an obituary for the newspaper a couple of days after he died and, seeing as how I would have done anything to help her at that point, I said yes.

Of course I had absolutely no experience with writing obituaries but, having read a few of them over the years, I didn’t think it could be that hard.  The ones I’d seen were mainly a list of pertinent facts laced with a couple of life highlights such as career path, a significant achievement, and maybe a favorite hobby or two.  But then Mrs. B told me that she’d like something non-traditional, to go with Mr. B’s mostly non-traditional life, and I fell off the edge into deep water.

So what did I do?  Why, research of course.  I turned to the world-wide web (what-oh-what did we do before the internet delivered it’s wealth of knowledge and resources right to our fingertips?!), googled How to write an obituary, and found ObituaryGuide.com, a veritable smorgasbord of tips and insights.

I soon discovered that an obituary can be so, so, SO much more than just a list of facts; that at its best it should not only capture the deep essence of a life, it should uplift and inspire anyone who reads it to carry the best of that life forward in their own.  I also discovered that trying to capture the essence of something as vast, complex, paradoxical, sacred, and miraculous as a human life is totally impossible…which meant I was doomed before I started.

But here’s the thing.  Trying to do it anyway thrust me into some strange, bigger kind of place inside myself…a loving  place, a place of sorrow and tremendous joy, a place where maybe I might catch a  glimpse of something as huge as a life essence…and going there made me feel a lot better.  As if I got to borrow a bigger set of eyes for a few hours with which to gaze at the world, at Mr. B’s life, and I had the chance to see how everything looks so much better through eyes that big.  So much more sane, and perfect, and right.

I don’t know if it would work like that for everyone all the time, but I highly recommend giving it a try.  You don’t even have to do for somebody that died.  You could do it for anyone, or for yourself for that matter.  Write it for someone you love or someone you’re pissed at.  Just go for the big eyes, whoever it is, and see what changes.

So anyway, here’s the finished product.  I changed all the names and dates and identifying info to protect the innocent of course.  The “Once upon a time…” at the beginning was removed from the final copy but I’ve put it back in again here because…well, I don’t know why for sure.  Maybe because its the only way I know how to describe the magic and transcendental wonder that was Mr. B’s life.

Bud Skinner

1932-2011

Once upon a time, on July 16, 1932 at Weippe, Idaho, Jesse and “Buzz” Skinner brought a perfect, baby boy into the world.  They named him Matthew Reynold but called him Bud, and he grew up ranging mountainsides, adoring animals, and seeing the world around him as something alive…a neat trick that he never outgrew.  He lost his father at thirteen, then his leg (and almost his life) three years later, but happily chose to survive and afterwards returned to his life with the same generosity, determination, and curiosity that ultimately defined him.

Bud grew up (to 6’8″) and did many intriguing and wonderful things.  He married, had children, and in the 1970’s earned a degree in Computer Science, taking an honored place among the ranks of the earliest computer nerds.  He was a college activist (detained but never charged), an only-child who later found his brothers among the men who were his truest friends, and a man who saw the deepest significance of his life in his relationships with others.

On Friday, after seventy-nine years of grand adventure, learning, setbacks, determination, courage, and grace, Bud died peacefully at home in Boise while gazing into the tender eyes of his wife.  At the last he was cradled in both the laughter and tears of his beloved family.  Everyone should have the opportunity to die so well.

Mr. B. is survived by his wife and devoted basset hound, son and his wife, two daughters and their husbands, and numerous grandchildren and great-grandchildren.

While we’re grateful to many, our special thanks go to Bud’s good friend and doctor, Bill Chris, for helping him keep his health all these years, to “Cuz” Ada Brown for her immeasurable love and care during the last weeks, to Dia for being there with us during Bud’s final hours, and to all his wonderful caregivers too numerous to name.  If he ever called you sweetheart, gave you a hug, or knew your name, then you were a special person to him.

A memorial service will be held at noon on Saturday, at the Memorial Funeral Chapel in Boise.  There will be a reception immediately following.

Rather than flowers, Bud would have preferred donations to any organization dedicated to reducing suffering.  Or better yet, the next time you see anyone struggling with a heavy load, stop, smile, lend them a hand, and then gently suggest that they “pay it forward.”  Bud’s vision was for a world growing in an ever-widening circle of tolerance, compassion, and kindness.  It was a vision he worked toward in his own life.  Continuing that effort in yours would be a very high tribute indeed.

copyright Dia Osborn 2011

A Curious, Amazing Thing That Often Happens Just Before Death

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

Image by Vlado

Both the hubster and I were there with the family, at the house, when our good friend, Mr. B, died a couple weeks ago, and I wanted to tell you about something amazing that happened right before he passed.  Actually, this type of dying event is common and it frequently (certainly in every case that I’ve been involved with) lifts the spirits of those who are there to witness it.

It was nearing the end and Mr. B had been unconscious for close to a day and a half.  The hubster, driven by the common, but often unspoken, instinct displayed by loved ones to never leave their dying person alone, was taking his turn sitting beside the bed and holding Mr. B.’s hand.  The family was scattered throughout the house, cleaning up from breakfast, while Mrs. B was on the other side of the room discussing something with their son.  She’d just finished and was walking past the bed on her way out to the kitchen when Mr. B. suddenly, the hubster later told me excitedly, squeezed his hand.

Hard.

“Like this!” he said, grabbing my hand and crushing it in a way that sent shooting pains up my arm.

“Ow!”  I snatched my hand away and glared at him.  “That hurts!”

“I know!” the hubster started nodding vigorously, relieved that I got it. “That’s just what it was like!  He did that to me, too!”

And suddenly I did get it, and I was amazed.  My mind flew back to the last hour when Mr. B. lay there helpless and still; pale, shrunken, and almost gone.  He’d grown so weak he fell into a final coma from which he couldn’t seem to climb back out, but then somehow…in that last minute…he powered back up anyway.  He’d grabbed onto the only thing available, the husbster’s hand, and squeezed it so hard that the hubster had to sit up and pay attention.

“He opened his eyes and locked onto mine…and I just panicked,” the hubster admitted.  “I didn’t know what was going on but I sure didn’t feel like I was the last thing he needed to see.  So I called Mrs. B. and she was right behind me.  She sat down and took his hand, spoke to him gently telling him she was there, and then a few seconds later Mr. B died while gazing into her eyes.”

The husbster paused, reflecting for a moment, then looked at me and said, “I feel like that’s what he really wanted, y’know?  That’s why he squeezed my hand.  He knew it was time to go and he wanted me to get Mrs. B. for him.”

Later, Mrs. B told me the same thing.

“It happened just as I was walking past the bed,” she mused.  “I think he knew it.  I think that’s why he made his move right at that moment.  He wanted to tell me good-bye.”

It’s well known within hospice circles that the dying are far more aware of and, in a lot of cases, far more involved in the timing of their actual departure, than most people realize.  Hearing seems to be the last sense to go and the dying often still respond to auditory stimuli…familiar voices, favorite music, sensitive information (which is why it’s so important to exercise caution when speaking within their hearing btw), etc….even from the depths of coma.

I love this…the fact that our relationships with one another don’t just stop because one of us loses consciousness.  The connections we build are so much more complex, beautiful, delicate, and tenacious than that.  It often feels…there in the rooms of the dying…like some vast and luminous web has been spun around us, supporting and binding us at a thousand, twinkling, alternate, junction points so that, even if we can no longer speak or see or touch, our love still travels easily along the other pathways, the ones that haven’t collapsed.

My mother awakened in her last moments, too (even though that was scientifically impossible with all the heavy sedation she was under,) her eyes opening for one last, brief glimpse as my brother read a passage aloud from the Upanishads.  My grandmother was decidedly more active about her’s.  After three days of coma (and six solid hours of heavy labor where she seemed to be stuck in her body and unable to leave) she finally sucked in one last, mighty breath, opened her eyes, and let out a yell on the exhale, as though she’d stripped off her helmet, mounted the sound, and was riding it wildly out of her own mouth in a last, triumphant charge.   I remember how I sat there stunned for a moment…and then burst out laughing.  With relief.  With applause.  With joy.

But my favorite story, the one that always cracks everyone up, involves the last moments of The Feisty One, an elderly German woman whose final words probably best sum up the sheer shock-and-awe effect of the transition from life into death.  She was what we call a colorful character; a regal prima donna who commanded everyone, was disdainful of doctors, dismissed all the symptoms of her decline with contempt, and who kept telling me that really, it was all just a bad case of constipation and she’d be up and around again soon. 

And then, she insisted, I’m going to cook you a real German meal.

I adored this woman.

Her daughter-in-law was the one who told me the story of The Feisty One’s last moments.  How she’d had a burst of energy and talked for something like fifteen hours straight, all through the night and well into the following morning, before falling into a coma.  How she then just lay there, finally quiet, for a day and a half, her breathing growing increasingly labored and shallow.  And then how, right at the end, she drew one last breath and opened her eyes again, staring at them all in complete surprise, before exclaiming, “Shit…SHIT!…SHIT!!!”  After which she collapsed back against the pillows again and promptly died.

I can only imagine how those may very well be my own sentiments exactly some day.

copyright Dia Osborn 2011

Jack Kevorkian: The Elephant Is Still In The Room

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

Jacob “Jack” Kevorkian

May 26, 1928– June 3, 2011

Jack Kevorkian, the outspoken, determined, abrasive champion of physician-assisted suicide died last Friday in a Detroit area hospital.  He was 83 years old and died of natural causes.  He took on one of the most thankless jobs around…trying to get people to actually talk-and-do something constructive about how we die.  I’d like to sincerely honor him for his efforts in that direction, however controversial his methods, as well as wish him a smoother journey going forward than he had while he was here.

May you rest in peace, Dr. Kavorkian.  Thanks for having the courage to try and do something.  You were braver than most.

The tone of the articles I’ve read so far is all over the map.  A few roundly condemn him,  a few unapologetically celebrate him, most fall somewhere in between.  And I guess that’s appropriate considering the terrifying nature of the subject he tried to force the American public to face and address.  This quote from The New York Times article summed it up best for me:

 But Jack Lessenberry, a prominent Michigan journalist who closely covered Dr. Kevorkian’s one-man campaign, said: “Jack Kevorkian, faults and all, was a major force for good in this society. He forced us to pay attention to one of the biggest elephants in society’s living room: the fact that today vast numbers of people are alive who would rather be dead, who have lives not worth living.”

(Well, I’m not sure about vast numbers, but certainly more than there should be.)

Personally?  I admire the man for his bulldog tenacity in trying to make us look at how we treat those who are dying.  Back in the 90’s the terminally ill were holding the very shortest of straws, and really, somebody had to stand up and fight for them.  Kudos to Jack for being willing to put the target on his back.

But as far as his solution of physician-assisted suicide is concerned, I tend to lean more towards the view of Ira Byock, the Director of Palliative Medicine at Dartmouth–Hitchcock Medical Center and one of the most powerful voices out there calling for more aggressive care of the terminally ill.  In a 1994 paper he said that, while Kevorkian addressed the right problem, he proposed the wrong solution:

The problem is that of unmet suffering – indeed, unaddressed suffering – among many of the terminally ill in this country. Kevorkian deserves credit for loudly calling attention to this situation in a manner that the public – and the medical profession – finally can no longer avoid.

…This regrettable frequency of uncontrolled symptoms exists because of a critical deficiency of medical education as well as a lack of commitment on the part of established medicine to do whatever is necessary to alleviate the distress of the dying. The requisite knowledge, medicines, techniques and technology exist; they are simply not being applied. Physicians who do not aggressively respond to anguish among their dying patients deserve the sternest professional sanctions.

I think that the main thing Dr. Kavorkian was fighting for, access to a humane death, has been accomplished with the advances we’ve seen in hospice and palliative care in the last couple of decades.  In hospice care there are already established protocols in place that allow the possibility of medicating a dying person enough to successfully control their pain and suffering, even if it involves death as a possible outcome.  (That’s a whole other blog post that I’ll tackle soon.) For now, the biggest problem I see is that the majority of people still aren’t using hospice and palliative care services anywhere near enough.

To address this problem I’d like to see more aggressive steps taken to:

1) see that both hospice and palliative care services are made more universally available,

2) get more doctors to recommend their use earlier in the process, and

3) educate the general population on what hospice and palliative care really do so they’ll more readily turn to them when the appropriate time comes.

The conversation about dying in this country has come light years since Jack Kavorkian first forced us to start talking, but overall the topic remains an elephant looming large and untended in the room.

Personally, the idea of legalizing assisted-suicide makes me a little nervous.  It’s not a moral issue for me, it’s a social one.  As David Callahan mentions in The Troubled Dream of Life, we already have three other ways we get to legally kill one another (war, capital punishment, and self-defense) and for all our sakes, I’d rather be shrinking than growing this list.  Social fabrics are fragile under the best of circumstances.  I can’t help but feel it would be wise to proceed with caution and have a much more open, reasonable, and in-depth public conversation before we decide.

copyright Dia Osborn 2011

related articles:

Jack Kavorkian Dies at 83, Slate Magazine

Letting Go, The New Yorker

The Laughter and Sorrow of Being There

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

Luna Moth

I’d forgotten…how much better it is to be there when someone dies, than not.

Our dear friend Mr. B died at home, surrounded by those who loved him, last Sunday morning…which was actually pretty fast.  The doctors said he’d have more time, but then I’ve found that doctors usually overestimate;  partly because they feel it’s kinder and partly because they tend, personally, to be more afraid of death than the rest of us.

But Mr. B was glad it didn’t take as long as they said it would.  After four grueling, futile months of rotating between hospital, rehab center, and wound care center he was more than ready to move on.  He was grateful.

That’s the often overlooked gift of extended suffering.  Horrible as it is, there’s simply nothing like it for helping us let go of this otherwise far too rare and luminous world.  If something didn’t come along to tarnish the glow and loosen our grip, dying could (and sometimes does) drag on forever in this current age of limitless medical intervention.

Mr. B and his beautiful wife, Mrs. B, wanted the hubster and I to come and be there with the family during the passage; to help, to laugh, to cry, to steady, to witness.  I was surprised, deeply touched, and thrilled.  I love “a good death”; the kind that happens when someone dies prepared, surrendered, and surrounded.  There’s something potent and magical that happens when a family assembles to lift and love one of its members through the final transition,  something mystical and disorienting that occurs when a body and the life that inhabited it whisper farewell and break their long embrace.  Standing as witness to these things both shatters and transforms me, every time; actually it shatters and transforms everyone that’s lucky enough to be there.

Strangely enough, this…the good and healing part of dying…is the aspect I somehow forget about in between.  I’m not sure why exactly.  Maybe because, in spite of its potency, the experience is nevertheless fleeting and insubstantial and therefore easily overshadowed once it’s past.  Or maybe I forget because this part has become so invisible in our culture of death aversion that’s its just hard to hang onto.  I don’t know.

What I do know is that there’s an energy, a force generated during a good death that both cuts and cauterizes simultaneously.  It mauls me extensively, each time, but then it lays eggs of some vast and tender love there in the wound itself, as if it was some horrible yet sublime parasite, transforming me against my will into something better.   Someone more courageous, caring, and gentle.  Somebody wiser.

I think that was the gift Mr. B. wanted for me..for all of us.  I think that underneath everything else that was going on, somehow he intuitively understood that giving us all a good death would make the gaping hole after he left easier to survive.  Easier to recover and return from.  He used his own dying to create a final, profoundly generous, and life-affirming act.

copyright Dia Osborn 2011

Amazing and Strangely Beautiful: A Train Moving Through A Crowded, Urban, Vegetable Market.

Posted by Dia in Living and Dying and tagged with ,

This week has been crazy what with dueling colonoscopies for the hubster and I (including those ever-fun and entertaining cleansing preps beforehand), a mysteriously injured leg for Dane the Mangy Rescue Mutt, and visits to a dear, dear friend who has just entered hospice and is–bravely, calmly, and gracefully–readying himself for final departure.

It’s been a lot.

So this week I thought I’d just post a fascinating, 44 second, Youtube video of a train passing through a densely crowded, urban, vegetable market.  This thing just blows my mind.  See what it does to yours.

Living in the western U.S. as we do here, wide open space is a given.  The expectation of being able to see long distances, lots of sky, and relatively few people is actually structured into our physical, brain circuitry and the hubster and I have frequently noticed how, after a while, we start to feel constricted when traveling in areas that are heavily forested or otherwise “closed in”.  I imagine it involves some form of imprinting.

Anyway, this video beautifully illustrates how these people (possibly in Thailand?  I haven’t been able to discover for certain…) have imprinted on a heavily populated, urban environment.  Adapted.  In some strange way they’ve elevated these difficult living conditions into something fascinating and dynamic, disturbing and deeply moving.  The precision and coordination between so many diverse, moving parts looks like choreography, doesn’t it?  Or possibly an undersea scene.  The awnings coming back down after the train passes looks like the way sea anemones eventually, gracefully, unfurl again, after being disturbed.

copyright Dia Osborn 2011

The Jewish Do Not Leave Their Dead Bodies Alone

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

(children intuitively understand)

One of the great sorrows when my mother died was leaving her body alone in the hospice facility after she died.  Indeed, for my sister it went beyond sorrow into trauma.  The problem was that her death was unexpected and she hadn’t done any advanced planning for the disposition of her remains.  All any of us really knew was that she wanted to be cremated and have her ashes scattered in a bay that she loved.

None of us (ten kids frantically assembling from all over the world) had a clue what to do.  We didn’t know the laws governing human remains and it was a shock to find out 1) how much paperwork is involved and 2) how much time it takes to complete it.  To our dismay we discovered that due to the lack of advance planning it would take a full week before she could be legally cremated.  None of us was in a position to wait that long…it had been hard enough just to get there in time…but more importantly, even if we could have stayed, there wasn’t really any way to stay with her body.  Cremation facilities don’t provide waiting rooms next to their refrigerators.

Turns out our culture isn’t very family-friendly where its bodies are concerned.

So instead my sister and I closed the door, gathered warm water and cloths, and bathed her body ourselves there in the room where she died, loving, tender, and stricken as we said our final goodbyes.  Then we reluctantly walked out of the bedroom and facility, climbed into a car, and drove away.

It was awful.  Leaving her all alone like that, vulnerable and helpless with no one to protect her.  It felt like we’d abandoned her to strangers and I’ll always have deep regrets about it.  But lacking any kind of long history and established customs for that kind of thing we just weren’t prepared to do it any differently.

Which is why I was fascinated to run across a beautiful, poignant article in the New York Times titled Keeping Them Company At The End.  It’s written by Joy Levitt, a rabbi with congregations in New Jersey and New York, and in it she tells the story of sitting with a woman and the body of her dead husband until the doctor could get to the house and pronounce.

It caught my attention for a couple of reasons.  One, she refers to a kind of awareness that I often hear described by people working with hospice; the recognition of “what an unusual and extraordinary privilege it was to be in that bedroom.” And she also does a wonderful job of capturing the illuminated quality of love which so often permeates the room around the time of dying.  But what started me reminiscing about my mother’s death in particular was her description of the Jewish tradition of guarding the bodies of their dead.

“Jews do not leave dead bodies alone. Communities appoint people called “shomrim” — protectors — to watch over the deceased from the time of death until the funeral. It is considered a “mitzvah” — a commanded act — and a holy thing to do, but its origins probably date to a time when there weren’t adequate ways to protect bodies from rodents (or perhaps evil spirits) during the night.”

What a great tradition.  It made me wish I was Jewish for a minute.   Not surprisingly, the white-Protestant-repressed-denial-of-death background I come from doesn’t have much to offer in this area.

I was just looking around online and found some of the following resources for anyone interested in a non-traditional approach to care of the body and funerals.

Home Funerals (lots of great links in this one)

A Family Undertaking (trailer for a really, really beautiful and inspiring documentary.  I watched this a while back and just loved it.)

Final Passages website

And to find out information on the actual laws governing disposition of human remains in my state, I did a search for Idaho laws governing disposition of human remains and found the existing legislation.  I imagine some variation of that would work for most states.

And by the way, if any of you have a minute, I’d love to hear about experiences you’ve had or resources you’ve found, too.  Thanks!

copyright Dia Osborn 2011

Autism, Vaccines, and My Beef With (Some) Scientists

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

I love science so I subscribe to Scientific American.  It’s a fascinating, thought-provoking, extraordinary read which usually fills me with a lot of hope for the future.  So I look forward to it every month.

However, in the latest issue of Scientific American, Daniel T. Willingham, a professor of psychology at the University of Virginia, wrote an article entitled Trust Me, I’m a Scientist where, after referencing the current storm raging around vaccines and autism, he ponders why-oh-why “so many people choose not to believe what scientists say.”   He goes on to posit two possible explanations:

1)  The ever-popular (and sadly accurate) speculation about the poor quality of science education in the U.S. which he downplays, and then his own theory;

2)  People are emotionally prone to accept inaccurate beliefs, a position he argues for during the rest of the article.  (He is a psychologist.)

Needless to say the dreaded “I” word eventually surfaced…IRRATIONAL…the one which, however true as a strict definition, scientists also use for character assassination against someone coming from a non-scientific perspective.

And as usual, as soon as I read the word my blood pressure shot up about twenty points and I had to put the magazine down while I struggled to calm the bristling, snapping, fiercely irrational dog in me that scientists keep poking through the fence with these fucking  sticks.  I don’t think they understand how patronizing it feels–or how counterproductive it is–when they airily reduce and dismiss the rich, complex, nourishing, ancient and essential emotional/instinctual lives we all share as irrational.   They might as well just call us naked, dirty, jungle people who eat with their spears.

image from Wikipedia

I mean, really.  It’s so much harder to help people once you’ve antagonized them.

Now just so we’re clear here, I don’t for one second doubt the sincerity of the brilliant, decent, dedicated scientists who are working to find causes and cures for autism.   I, personally, am really grateful they’re trying and I believe them when they say please, please, please people, we’ve looked long and hard, and we really and truly cannot find a link between autism and vaccines.  It sounds to me like they mean it and so I weight that information accordingly.

But on the other hand, not finding a link and proving there is no link are two completely different things.  The first finding leaves wiggle room and your average parent’s instincts are likely to sniff that out and mistrust it.  Instincts don’t like uncertainty.  For them uncertainty is like a patch of tall grass where predators could still be hiding, even though the scientists periodically go in and beat the brush.  It’s nothing personal against scientists, it’s just that…well…it’s tall grass.

So, a possible suggestion for scientists here:  Acknowledge that wiggle room is wiggle room, and try not to patronize a parent who knows it and is already growling and circling their child.  If you do they’re not going to listen to you and it won’t be because you’re a scientist.

And a possible suggestion to parents who are thinking of not vaccinating their children at all:  Please don’t get so focused on this one patch of tall grass that you completely forget about the other tall patches behind you.  A few of those ones definitely harbor predators and you need to have some kind of plan in place for fighting them off, too.  Whooping cough, diptheria, polio, etc. are all still crouching nearby, eying your child and lashing their tails.  And even if their populations are relatively low right now, low is not the same as extinct.  Low means they could still breed their way into a comeback given the chance so, whatever plan of action you eventually settle on, be sure you build some kind of defense strategy that protects your child (and the adult they eventually become) against these other diseases, too.  While they may seem less familiar today than autism, they’re certainly not less dangerous.

I once helped care for a woman who lived for over fifty years with the personal devastation caused by one of the last, major polio outbreaks in this country.  She was quadriplegic and still, over a half-century later, in constant, low grade pain.  The stories she told me of “how it used to be before the vaccine was discovered” made my hair stand on end, and through her eyes I finally got the chance to see what an absolute horror the scourge of polio really, really, was, and what a blessing the polio vaccine has been for all of us born after it’s discovery.   She thanked God everyday for that vaccine, and for the fact that her grandchildren would never have to endure what she did.

Vaccines are not an evil.  To the contrary, they’re a miracle and a gift.  But they’re also not without risks which means, miracle or no, they still need to be utilized carefully and wisely.

So back to Dr. Willingham’s question about why “so many people choose not to believe what scientists say…”  (Man, there are just so many things wrong with that question.  Like…what?  Scientists own the ultimate truth and we’re all somehow obligated to believe everything they tell us?  Or that there’s something wrong (irrational!) with us non-scientists if we question their conclusions?  Boy howdy, that phrasing smacks of an arrogance that’s totally setting my inner dog off again.  Damn.)   Frankly, I think his conclusion that “people are emotionally prone to accept inaccurate beliefs” (another phrase brimming with innuendo) borders on being dismissive and condescending.  

I know this much; people are definitely emotionally prone to mistrust those who disrespect them.  And as long as skeptical parents feel that scientists like Dr. Willingham are talking down to them, I just don’t see them becoming a lot more receptive to the science itself.

copyright Dia Osborn 2011