When Instincts Lag Behind

Posted by Dia in Living and Dying and tagged with change, Life, medical choices, Talking about dying January 8, 2013

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

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

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

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

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

copyright Dia Osborn 2013

Prejudice Sometimes Has To Die Off With The Generations Carrying It

Posted by Dia in Living and Dying and tagged with Beliefs, change, Life, Living and Dying, prejudice, Relationships August 27, 2012

Jacob’s Ladder by William Blake

In an article today in the L.A. Times, GOP divide deepens on abortion, immigration, gay rights, Paul West touches on a dynamic I once observed during my hospice work. Some areas of deep and lasting social change can’t happen until the generations carrying the old prejudices die off.

The difference between some of the social values of the GOP and a majority of the upcoming generation of new voters is just one example. From the article:

Polling of voters ages 18 to 29 has shown that a majority hold views that run counter to the GOP stance on same-sex marriage and abortion rights…The younger generation is the most diverse in American history and thinks of itself as very tolerant and pro-diversity…

To be fair, I think the Democrats have their own set of deep prejudices which they’re equally blind to. (Like against religious conservatives. And for those thinking “but that’s not prejudice, that’s just right” you might want to take a look. The reason prejudice works at all is because it feels so true.) But today I wanted to explore the embedded racial prejudice I saw in an elderly patient I once worked with.

As I’m sure everyone is aware, back in the early 1900’s in the deep south, racial bigotry wasn’t bigotry…it was law. It was language. It was culture and custom. It was so deeply entrenched in the psyches and world view of the time that the majority of people carrying it didn’t even know. Like I mentioned above, for them it wasn’t prejudice, it was the truth.

It went so deep in fact that the passage of almost a century ultimately couldn’t wipe it out of the psyche of an elderly woman I helped care for.

She was a person who actually prided herself on the fact that she was racially tolerant. She was raised in the south before and during the Depression but claimed to be descended from a great man who fought to emancipate the slaves, and she clearly admired and longed to emulate him. She told me story after glowing story about all the acts of tolerance in her own life, and yet when she temporarily descended into some profound disorientation as a result of a bad fall, a broken hip, and an unfortunate reaction to pain medication, her mind unconsciously reverted to the social mores that were dominant in her childhood.

The language that started coming out of that sweet old lady’s mouth was shocking, ugly, and unbelievably hurtful. What made matters far worse was that, before anyone realized this was going to be a problem, she’d been placed in the home of a temporary caregiver who was African American and the verbal abuse this poor woman sustained before she finally insisted that the patient be moved somewhere else was horrifying. The whole situation was beyond awful. It was tragic, graphic and, frankly, a little frightening to see what’s lurking just below our society’s surface, polished veneer.

But it also provided me with a fascinating insight. Her temporary dementia gave me a glimpse into a past that I’d only read about in the history books. A couple of times, while watching her flailing and fighting with the demons still lurking deep in her mind, I felt like I’d stepped into a time machine and gone back with her to the 1930’s Jim Crow deep south, to stand on a dusty street for myself and listen first hand.

Beyond the ugliness it felt like a privilege, too, like I’d been allowed to witness something important and rare. While on the one hand it was chilling and left me with a heavy sense of responsibility to live every day with more integrity and respect for everyone I come into contact with (which, let’s face it, is a lot of work) on the other hand it was reassuring to see that, with as far as we still have to go…still…we have come a long way since then.

That patient came from what I think of as an earlier, transitional generation, one that shows at least some initial signs of change–a sometimes willing/sometimes reluctant resignation to move in a new direction–but is bound to some extent by the unconscious world view they inherited in childhood.

And then I look at myself, the next generation, and how I’m bound by something else, by a prejudice against prejudice itself. I was raised to look for, identify, and challenge the old, established prejudices, to try and change them, in myself and in the world around me. But in the end I, too, will always be bound to some degree by the fact that I can’t help but see things in terms of their differences as a result.

And then I look at my children and their friends, at how, because of our efforts before them, they’ve turned out to be so much more truly and honestly blind to differences at all. They’re used to seeing people of every color in the media. They’ve grown up drawing their friends and heroes from both genders, from among the able and disabled, from those of different sexual orientations, from those who come from different nations and religions or no religion at all. They can navigate the growing diversity in the same way they can the new technologies; intuitively and unconsciously. For them, differences aren’t that big a deal and they’re tired of hearing us harp about it.

I admit, sometimes their blindness scares me. I don’t know if they appreciate it enough…how far we’ve come or how fragile the changes are. I don’t know if they’ll safeguard them adequately, push for more, and ensure that we don’t get lazy and slip back again into the older, uglier cultural norms. But then again I come from a generation of fear.

In the end, it’s their torch to bear, not mine. I realize that. I have to trust them…and their children and their children…to take our collective human spirit into a future that’s beyond my ability to envision or dream. And I have to accept that eventually I, too, am going to have to die to let them do it.

I do take faith in the fact that, looking back over history, the spiral seems to move in an upward direction over time. As our numbers have grown and we’ve been pushed into ever closer contact with one another, it does seem like the overall trend has been up. That’s we’re seeing less of the differences and more of the similarities, and while the older powers-that-be have been tearing everything apart in panic, the upcoming generation has been relentlessly weaving it back together only in a completely different way.

There’s a quote from Ann Frank that I love:

“It’s difficult in times like these: ideals, dreams and cherished hopes rise within us, only to be crushed by grim reality. It’s a wonder I haven’t abandoned all my ideals, they seem so absurd and impractical. Yet I cling to them because I still believe, in spite of everything, that people are truly good at heart.

It’s utterly impossible for me to build my life on a foundation of chaos, suffering and death. I see the world being slowly transformed into a wilderness. I hear the approaching thunder that, one day, will destroy us too. I feel the suffering of millions. And yet, when I look up at the sky, I somehow feel that everything will change for the better, that this cruelty too shall end, that peace and tranquility will return once more. In the meantime, I must hold on to my ideals. Perhaps the day will come when I’ll be able to realize them!” July 15, 1944

I draw my hope from both the older generation that’s now passing and taking its old, open wounds with it, as well as our children who are pouring their new vision into the world in a flood of sweeping change. Taken together like that they don’t seem as much like they’re in opposition; they seem more like successive steps on a ladder heading upward.

I guess I too believe, in spite of everything, that people are truly good at heart.

copyright Dia Osborn 2012

When does living stop and dying start?

Posted by Dia in Living and Dying and tagged with change, death, Life, Talking about dying, the natural world, Transitions July 14, 2012

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

copyright Dia Osborn 2012

A View From The Edge (Part II)

Posted by Dia in Living and Dying and tagged with change, Depression, facing fear, Life, Surprise, the natural world February 25, 2011

“Lunar Eclipse” by Lorin Kline (my son)

(Last week in Part I I described the forces that drove me high into the mountains for a three-day rendezvous with my deepest fears. This is the continuing excerpt from the book, Chapter 5. Dia)

While the list of things scaring me was varied and long, when I arrived at my campsite I discovered one fear in particular standing head and shoulders above the rest. More than all else, hands down, the prospect of the sun setting terrified me.

There was something so final about it. I was all alone. Cal had chosen a spot about five miles away and there was no way to communicate with him, no satellite phone or flare or even matches with which to build a signal fire. The trailhead where we’d left the truck was only a two-hour hike away, but without a flashlight I was unable to traverse the steeply forested, snow-slick, north side of the mountain I was on in the dark. If I panicked I had no weapon to wave wildly at the night, no back door, no safety-net. Once darkness fell I’d move beyond the reach of any help and for the next eight hours or so, whatever came into my circle I’d have to face.

Which is exactly what I’d intended of course. Back home it seemed like such a good idea.

Struggling to control the impulse for white-eyed, foaming flight I forced myself to sit down on my sleeping bag facing west. I called on the desperation that had driven me up there in the first place and made myself watch, eyes unaverted, as the sun dropped towards the peaks, observed as the light around me faded and thinned—and in the process discovered something surprising.

You may not know this but it turns out night doesn’t fall. It rises. Shadows start at the bottom, puddling and pooling in the hollows and roots like water and then filling things up from there. Initially, I was suspicious as I watched the darkness climbing out of the valley towards me, enveloping each boulder, bush and bare spot in its path. But eventually some subconscious, nightmare expectation in my mind relaxed and I realized there wouldn’t be any eerie wailing or flapping of leathery wings, nothing with foul breath descending on me from above and behind. The big, bad dark was not coming to get me after all. On the contrary, as the night shadow rose higher the world grew hushed and peaceful, feeling—rather than a monster—more like some great mother coming to tuck her children into bed.

I watched as she enfolded everything in a calming embrace and when the shadow finally reached my toes I sat stock-still, observing the light that bathed me fade as the sun sank behind the mountains. Suddenly, I felt excited and couldn’t wait to change into my long underwear, brush my teeth, and climb into my good-to-15 degrees-below-zero sleeping-bag.

I zipped around and still had enough time, after climbing into my bag, to watch as the last rays of light disappeared from the higher ring of mountain peaks that surrounded me. Everything terrestrial was now encased in the beginning shadows of twilight but it would take a couple more hours for everything to move into full darkness. I lay there, looking up at the fading blue of the sky and realized that the shadow was still reaching skyward, enfolding even the air, molecule by molecule, and as I watched the darkness deepen in tiny degrees I began to tingle at the thought of seeing the stars.

Back in the Sierra Nevadas during the long nights of my survival training course, while lying there looking up at the brilliant, twinkling worlds spread out above me, I’d slipped into a state of quiet, serene delight. Feeling like no matter what happened everything would still be all right, that I was safe and cradled in ways that defy explanation. As the memories of those nights came flooding back I grew excited–couldn’t wait to feel that sense of well being again–but since I knew it would be a while yet, in the meantime I turned to gaze at the deepening shadows on the ground around me.

My enthusiasm swiftly unraveled as I watched the things of this world, the trees and mountain peaks, flitting birds, the carpet of dusty pine needles and stones, the three plastic water jugs and backpack I brought with me, disappearing into the gathering darkness. The horrified, creeping fear returned as I felt myself being cut off and isolated, stripped of everything familiar, and I began to wonder again if something would come out of that dark unknown to get me during the night–a cougar, a drunken hunter, a wave of bone-chilling cold, a demon. I frantically reminded myself of the stars that were coming as I turned my eyes back up to the deepening darkness of the sky.

And it was in that moment, as I lay trembling and unexpectedly longing for the darkness of full night to arrive, that I had my revelation. In a flash I recognized a truth that seems so obvious now but that I’d somehow completely missed.

Both the light and the darkness conceal and reveal. The light reveals the ordinary world around us. It gives us one another and makes everything seem smaller and more manageable, wrapping us in a bright and sunny cocoon because as mortals we’re tiny and fragile and need a sense of protection. But it conceals, too. It creates the illusion of a blue sky, a ceiling, a world that has limits and is safe and known and predictable.

It isn’t until night arrives that this seductive illusion of containment dispels. The darkness comes swallowing everything in its shadow, tugging us away from the usual daylight edges we cling to with white-knuckled fingers until there, in our moment of greatest fear and isolation, it tenderly unveils the larger truth…that we’re cradled, floating in infinity.

The insight was blinding. Even though it didn’t alter the basic realities of the situation–I was still all by myself out in the middle of nowhere exposed and trapped–it transformed the darkness from a terrifying, alien thing I had to outsmart and survive into a bringer of gifts and grace. I felt as though I’d reluctantly entered the enemy’s camp only to discover it wasn’t an enemy at all. It was an ancient, lovely world of starlit depths that had been longing for me, calling me home for years.

A decade of depression slipped away as I fell into an exhausted sleep and, when I woke back up again a few hours later, a twinkling universe stretched out above me. The soft radiance bathed me as I lay there and quietly wept under the steady, pulsing of starlight.

(Next week, the conclusion.)

copyright Dia Osborn 2010

When Not Quitting Is The Miracle

Posted by Dia in Living and Dying, Triathlon and tagged with agoraphobia, change, disabilities, Living and Dying, Miracles February 24, 2011

Thought I’d post a quick update on my mini-triathlon quest. There’s good news. Progress is now detectable. The trainer who adopted me at the YMCA is terrific, enthusiastic, and more importantly has learned to scale back her ambitions where I’m concerned. Her early training schedule with six days of alternating weights, running, bicycling, swimming, and stretching with a seventh of optional hiking has been revamped to three days of weights and running.

And I’m consistently hitting two of them! To the outside observer that may not sound like much…and the trained athlete of bygone days in my head would emphatically agree…but to the shell shocked depressive inside who’s spent the last six years floundering between seclusion and creeping paralysis, two days of successful sports training is definitely cause for celebration!

Honestly, I’m a little breathless at my biggest achievement to date…I haven’t quit. It hasn’t been easy. This whole thing has felt a lot like sailing along a treacherous coastline littered with underwater rocks. Each time I start to pick up speed, working out two or three times in a row on schedule, I think Aha! NOW I’ve got it. Now I can unfurl the sails and really fly! Then I hear that damn thud and scraping on my internal hull and suddenly, for the rest of the day, I can’t even leave the house.

Which means I have to keep starting all over again and it’s frustrating. Early on these frequent stumbles really scared me because I thought if they kept up, they’d eventually make me stop. But two months into the whole thing now and my confidence is starting to build. I wonder if this is what it’s like for an athlete who suffers a big injury and has to learn how to perform all over again with a new and different body. Only in my case, the injury was to my mind. Everything I used to take for granted…simple emotional discipline, mental focus, and freedom from chronic fear and occasional panic…is kaput, so I’m having to learn a whole different set of mental skills and strengths to compensate for it.

It feels good though, even if it’s producing some additional anxiety. The hardest thing by far is making myself go to the gym. You may not know this but gyms are very social places. Lots of active, purposeful, energetic people all striding and pumping and pulling on complicated, noisy, bewildering equipment. It’s like a ten freeway interchange with heavy traffic flows and well-orchestrated on and off ramps. Everyone else seems to know exactly what they’re doing and then here I am, an outed hermit dressed in frumpy, old activewear, newly sucked out of my hole and doing my best not to trip and fall off the treadmill (yes…I’ve done it once so far) or hold up the line of nice but impatient people waiting to work on the weight machine I’m currently tangled in.

So much for dignity. But in spite of everything I’m actually starting to feel individual muscles once in a while instead of the more generalized trembling and collapse I started out with, and the length of time I can run without walking is definitely growing. I even tried my hand at running on the track yesterday, instead of the treadmill, and I’m happy to report that I didn’t trip, run into anybody, or attract undue attention with all the extraordinary bouncing going on around my chest, hips, and behind. (The complex physics involved with fat on a jogging person is really something to experience firsthand, let me tell you.) I’m still trying to get a handle on the whole fashion element involved and have yet to figure out how all these women are wearing what amounts to tights with no…I repeat no…visible signs of underwear. Surreptitious observation in the locker room has only revealed one thong so far, so something else must be going on. The anthropologist in me is intrigued.

I’ll keep you posted.

In the meantime, if you’ve got an extra ten minutes, here’s an ESPN awards video telling the stories of two, physically-disabled athletes who have been changing the world. Jim MacLaren, who endured two catastrophic accidents that successively stripped him of his athletic gifts, but who went on to make his miracles anyway, died in August last year. But his inspiring legacy continues to grow through extraordinary disabled athletes like Emmanuel Ofosu Yeboa of Ghana. Seriously, if you want something that both puts life in perspective and inspires you to keep hoping, watch this.

Because sometimes just not quitting is the most amazing miracle of all.

copyright Dia Osborn 2011

The Stars We Steer By

Posted by Dia in Living and Dying and tagged with Beliefs, change, Living and Dying, medical paradigm, Surprise, Talking about dying February 11, 2011

LH 95 star forming region of the Large Magellanic Cloud

The results are in from the thirty-seven people who voted in the poll, (hardly representative but enough for a tiny feel), and I’m both surprised and heartened.

But before I launch into that discussion, I wanted to thank everyone who voted, as well as everyone who tried to vote but couldn’t because of technical difficulties. There were a lot of you latter, I know. This post got about five times the number of hits as translated into votes so clearly, the glitch some of you reported was a big one. Bummer. I really wanted to know what you thought. I’ve recently been assailed by doubts about the value of what I’m trying to do with this blog and the eventual book, and I was trying to establish whether there was really a need for it or not.

Note to self: Learn more, much more, about conducting a casual poll.

And now to the results. Taking into consideration that the sampling was minuscule and the line of questioning was leading at best, I was still surprised to find that my suspicions were baseless. In spite of all the progress medical science has made over the last century, everyone who responded still sees death as the natural conclusion to our biological destiny. While there were those who thought our age span might be extended beyond 120 years, a few who thought we’d find a cure for aging, and some who thought disease would eventually be eradicated, nobody checked the Live Forever box. The proponents of Immortalism will undoubtedly be bummed, but it makes the job I’ve undertaken seem more feasible.

For those who didn’t know yet, I have an agenda here.

We all have our particular stars to shoot for and I’m no different. Mine involves trying to ease some of the unnecessary levels of fear I’ve seen around dying. I’m not gunning for ALL the fear mind you, because some of it is appropriate and perfectly healthy. It’s like a couple of people mentioned in their comments; the instinct to survive is in our DNA and, without the fight or flight response, we wouldn’t last long as a species.

No. What I’d like to target is the unnecessary fear. The excess. The bogey man part. The kind of terror that results from things like lack of education and unrealistic expectations, from misinterpreting symptoms to grossly underestimating our own strength. I want to tackle the kind of creeping, obsessive fear that arises from focusing on external, technological solutions which we often can’t control, to the exclusion of internal strengths that we can.

That last one was what I was trying to gauge with the poll. As a society, we’re dedicating our resources and faith to medical science at a rate that’s escalating geometrically, and I wanted to find out just how much faith. Because if most people are starting to believe deep down that dying is ultimately unnecessary then, honestly, there wouldn’t be much left for me to do here. The hope of living forever raises an entirely different set of fears about dying that I wouldn’t have a clue how to address.

If that was the case I’d be free to begin a whole new star-hunt.

However, thirty-seven out of thirty-seven people still believe that dying is biologically inevitable and, while it’s not universally representative, it’ll have to do. I’ll just assume that trying to ease some of the fear around dying is still a relevant and worthwhile goal to pursue after all.

Note to self: Possible things to talk about in future posts.

1) Cultivating internal resources like courage, endurance, gratitude, trust, humility, strength, inner dignity, etc., provides the most powerful fall-back position for when technological solutions fail. (Other options: Despair. Rage. Blame. Generally falling into the abyss.)

2) Cultivating the above also dramatically improves the quality of life before dying.

3) Instead of devoting all our attention to fighting over who’s going to pay for the viral growth of outside, institutional services, we can also look into designing and building closer, committed homes and communities where it’ll be easier to help care for one another.

4) Before we pour our hearts, souls, and tax dollars into more of the bitter, divisive legislative battles raging, we could first try to weave a constructive, workable meaning for suffering to help us navigate with a little more grace. (Of course this would require courage, trust, humility, etc., which brings us right back to the practical uses of number one.)

I know there’s a way to die that isn’t as scary as most people think it is. I’ve seen it. I witnessed a variety of ways to navigate the process that not only make it less devastating for the person who’s dying, but actually helps buoy and heal those who have to pick up the pieces afterwards and carry on. I just need to figure out if there’s a practical way to communicate what I learned to anybody else.

That’s my star.

Elders and Technology: An Awkward Pairing

Posted by Dia in Elders and tagged with change, Relationships, Respect January 3, 2011

This morning I received an email with an attachment from my out-of-town brother-in-law (BIL) that was actually for my mother-in-law (MIL).

So if it’s an email for MIL, you ask, why did BIL send it to you?

Why you silly twit, I answer. Because MIL is elderly of course. She doesn’t know how to email.

MIL has a computer. In fact she has three; two desktops she bought for herself and a laptop gifted from her son. But none of them are presently hooked up because, even though she really wants to learn how to email, every time she’s tried so far she hit a wall. She got overwhelmed and quit, turned off the service again, because computers and technology are just not coming easy for her.

As pretty much everyone knows by now, there’s a huge generational divide where technology is concerned. My kids, on the one hand, use electronic devices like prosthetics. They’re physically attached to their laptops, cellphones (with bluetooth, GPS, browsing, cameras, youtube, and wifi capability plus downloaded ringtones and extensive music libraries), gaming systems, and complex entertainment systems with blue ray and live streaming (and accompanying battery of remotes.) They communicate via texting, email, IM, Facebook, Twitter, et al, and…once every ten thousand years when the planets all align…they’ll even make a phone call. They also both have dedicated closets for the graveyard of outdated devices they’ve abandoned over the years.

MIL also has a dedicated closet but she’s abandoned her devices for a completely different reason; she couldn’t figure out how to make them work. She’s not unusual in this way. My father and father-in-law (FIL) can’t use most modern technological devices either. I also ran into this problem a lot when I was working with hospice. Most of the elderly people I cared for not only couldn’t use a computer, they often struggled just to navigate a simple telephone voice mail system. Sometimes, at their age, it was because hearing had become a problem. But even those who could hear perfectly well seemed to have trouble. They resented the fact that they couldn’t just talk to a person.

This morning it occurred to me that, where the new, modern world of technology and electronics are concerned, most of our elders are like first generation immigrants from the old world. They come from a different set of customs, a slower pace, a different, simpler world view. The new language is proving to be sophisticated and difficult for them, and they often get lost trying to navigate a landscape that can seem foreign and incomprehensible.

MIL (almost eighty) is from the old country so emailing, as part of the new language, has been hard for her to learn. Still, I admire her tremendously because at least she wants to learn. She tries. She’s frustrated and overwhelmed by it all, but even so, she’s still tickled by the prospect of laptops, and camera phones, and digital picture frames, and thin, sexy, LCD TVs. She takes risks and buys gadgets she doesn’t know how to use, hoping she’ll be able to figure them out and sometimes she even does. Little by little, she really is making progress.

So BIL and I, and all of her children, continue to try and be patient and supportive. We’re the second, bridge generation, straddling the divide between our parents’ world and that of our children. Hopefully, in helping our elders, we’ll be able to sort out and harvest the best of their world, then preserve it, adapt it, and pass it down to our kids to be folded into the new one.

That’s what I’m hoping for anyway, because I think an evolving world with deep roots is the strongest, most nourishing kind.

The Favorite, by Georgios Iakovidis (1890)

(Image from Wikipedia)

Let’s Have a Chat

Posted by Dia in Uncategorized and tagged with assisted dying, change, Living and Dying, Respect, talking, Talking about dying September 9, 2010

I wanted to take a moment to talk a little about the delicate topic of assisted dying/assisted suicide. There are a lot of places, nationally and internationally, wrestling with legislation and, in my opinion, if we’re going to try and do something as ambitious as legislating death, I think we should make a serious effort to get it right. Because if there’s one thing that everybody agrees on it’s this:

Life is a fragile commodity and the off-switch for it only works once.

The reason emotions are running so high is because the stakes are so big. Legislation affects all of us so it’s critical we don’t leave something this important solely in the hands of politicians and lobbyists. Instead of just playing the voyeur by sitting back and listening to the attention grabbers argue about it in headlines and news clips, we the street people, the regular Joes and Joeinas living out here in the real world, need to educate ourselves more, nose around, dig up hidden angles, make sure we look at both the shining gifts and dark underbellies of every side of the argument. And most importantly, we need to start talking with each other about it.

That’s right folks. I said talking. About dying. To each other, across political, religious, ideological, racial, cultural, economic, and national lines. Believe it or not communication can be a good thing. Done right, it actually makes us smarter than we were before, more informed and knowledgeable, more compassionate and caring. True communication (read: listening as well as talking) not only offers our heads more information, it helps us build bridges heart to heart which, trust me, is something you really want in place when you’re hanging out there on the raw and ragged edge, desperately clinging to someone’s hand while you’re trying to tell them that you really, really want to live…or that you really, really need to die.

This is not an idea we’re talking about here people, it’s the real thing. I’ve been there, I know what it looks like. With hospice I saw both Democrats and Republicans die. I saw the faithful and atheists die. I’ve seen pro-lifers and pro-choicers, rednecks and tree huggers, rich and poor, dark and light die and I’m here to tell you that in the end, all those shallow, gritty, surface labels slough off like old skin and the person left lying in the bed is just one more beautiful, luminous, vulnerable, aching, irreplaceable and longed for human being. Somebody that gave every last one of us a huge gift by surviving this world for as long as they did. Someone who was our companion, whether we knew them or not, and without whom the pocket of the world they were responsible for would have been something a lot less.

We have got to drop the harsh, combative, divisive judgments we keep stabbing each other with if we’re to have any chance of getting this right. Every one of us deserves to have the final word on what’s happening to us and our own body, to live and then die in accordance with what’s sacred, beloved, and true to us. Every one of us deserves to feel safe knowing that nobody will ever, ever, ever try to kill us when we are wanting and longing to live, and conversely that we will never, ever be forced to experience unendurable, unending suffering when we simply can’t bear anymore.

There are valid, important points being made on all sides of this argument that we all need to take into account before any final decision is made. Because if we don’t, some helpless, dying person (actually a lot of helpless, dying people) are going to become the tragic victims of our legislation and if that happens, we will all be responsible for it. It will be all our faults for the simple reason that we didn’t make more of an effort to listen to one another and come up with some truly wise, compassionate, thoughtful, and inclusive solutions.

Phew! Okay. Enough of the soapbox. As you can tell, some things really wind me up.

So, do you find it hard to talk about assisted dying/assisted suicide with people who feel differently than you do? If so, what makes it challenging and what would make it easier? I would dearly love to hear what others are thinking about this whole subject and welcome your comments. Some ground rules though: be respectful, think before you talk, and contribute something valuable to the discussion. (Hint: Personal insights and feelings are valuable. Ranting, blaming, and proselytizing are not. Name calling will be deleted.) And humor is the best!

I’d like to spend the next few posts exploring some of the surprising things I’ve been discovering through my own investigations. Next week: Why the disabled are worried about it and why the rest of us should care.

Them Worms, Them Worms

Posted by Dia in Uncategorized and tagged with change, disabilities, Disability, prejudice, stereotypes April 30, 2010

I was planning on writing about Maggie Full of Grace and her life after polio in this post but have been characteristically sidetracked. (It’s not hard to do.) You see, I can never think of Maggie without thinking about her disability, and disability as a whole has blossomed into a topic that’s curious to me.

Probably because I was so oblivious to it in my youth. I had little exposure to the disabled kids back then because long, long ago and far, far away, “special needs” kids rode on “special” buses to “special” schools and were referred to, in the brainless vernacular widely employed in those days, as retards and cripples.

(Anyone who thinks the good old days were the Golden Age and that the world is now morally deteriorating should cast their mind back to some of the common cruelties of yesteryear. Trust me. We weren’t nearly as golden as we like to remember.)

I was in my forties and working with hospice before I finally had my first, up close, and sustained interaction with a person of disability. By then I had dutifully learned a newer, kinder vernacular based on an upwardly evolving world view. I’d cleaned up the ugly, childhood slang, learned to speak respectfully about the disabled, and sincerely believed I was now wise, open minded, and prejudice-free.

Aaaah…but those worms within.

I soon discovered that, while my surface language had improved, it was just camouflage. The old, subconscious memes of childhood were still very much alive and skulking around in face paint, just underneath. Has anyone else ever experienced this? Discovered that what you want to believe and what you were once conditioned to believe just don’t synch? It’s kind of weird how old biases can continue to operate without our even knowing it.

I found that a lot of what came out of my mouth was condescending. Patronizing. Even when I tried not to I’d sometimes fall back into talking to people as if they were stupid, childish, or deaf. It was horrifying. At times I wanted the earth to open up and swallow me. I wanted to clap my hands over my mouth, drag me outside, and beat me. What was wrong with me? Why couldn’t I stop? Was I really, in spite of all my best efforts and a deep and genuine desire not to be one, a bigot?

It turns out, no. (Thank god.) I was unfamiliar, inexperienced, and badly educated, yes, but fortunately these are all things that can be rectified. The people I worked with were surprisingly generous with me, seeing through my awkwardness to the sincerity that lay just underneath, and given enough time I finally discovered that they weren’t even disabled people at all. They were people. Sans label. Go figure.

If you get a chance check these out. This a YouTube video of Aaron Fotheringham cruising around in a skateboard park in his wheelchair. And this one is a video of The China Disabled People’s Performing Art Troupe dancing the Thousand Hand Guanyin. (All the dancers are deaf.) Besides being outrageously entertaining I’ve found that both these videos are helpful for blowing the creepy, old world view about disabilities right out of the water.

I look at my kids and their friends and it’s obvious they won’t have to struggle with a lot of the stereotypes that saturated me earlier on. I can’t begin to tell you how grateful I am for that. I know that doesn’t mean the Great Work is finished by any means. No sirree bob. There’s still a lot of work to do before we’re all seeing and accepting one another for who we really are. But still, at least some of the worms are dying and I think it’s safe to celebrate the small wins.