02/10/18

What terminally ill children taught this doctor about how to live

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Dr Alastair McAlpine asked some of young patients what gave them joy and meaning – their answers surprised him

Dr Alastair McAlpine asked some of young patients what gave them joy and meaning. Their answers were surprising and positive.

By Alastair McAlpine

As a pediatric palliative care physician, I spend my days working with children who have life-threatening or life-limiting illnesses and their families.

Although many people think of us as the harbingers of death, in reality, doctors like us aim to maximize quality of life, especially when that life is likely to be shortened. We recognize that these children are so much more than just their illness and that they are part of a family. We focus not just on their medical needs but also on their psychosocial and spiritual ones as well.

Last year, as part of my diploma in pediatric palliative care, I was tasked with evaluating the attitudes of my little patients towards life. I asked some of them what gave them joy and meaning. Their answers were surprising and positive.

In fact, they made me completely re-evaluate my relationships with friends and family. I now spend more time with the people I love and I tell them how I feel about them. I have tried to make kindness a priority in my life.

I decided to share some of the children’s responses on Twitter, to provide some perspective to the fractiousness that is so prevalent there. The response was overwhelming, to say the least (my thread has been retweeted nearly 100,000 times).

The kids were not hung up on “stuff”. What mattered were the things that we all intrinsically know are important, but often forget in the hustle and bustle of daily living. The biggest takeaway for me is that the happiest, most meaningful moments were simple ones that did not require vast sums of money or effort to attain, but instead embraced the importance of human connection. It was also surprising how frequently the so-called small things were the ones that turned out to have enormous significance at the end.

Here are the top six lessons that my little patients taught me about life:

1. Spending time with family and pets is incredibly important.

Whether talking, laughing, playing, or just sharing silence, time spent with loved ones and pets was priceless. Towards the end, the only regret many of the kids had was that they didn’t get to spend more time “with mum and dad and my big brother”.

2. Humor and laughter are vital.

Even though they were squarely facing death, these kids derived amusement from the same things that normal children do: silly antics; clumsy adults; slapstick humor. Laughing is so important for many reasons but key among them is that it reduces pain.

Finding levity in the face of overwhelming tragedy can be difficult, and some of the parents dug into unimaginably deep wells of courage to provide mirth when their hearts were breaking. One dad pulled funny faces through his tears. But it always paid off. And whether ill or healthy, children will always be delighted by farting.

3. Good stories told and read by a loved one offer inspiration.

The written word and vivid fantasies told with basic toys enabled children to create alternate realities away from the often sterile hospital environment. They were sources of inspiration to continue fighting, even when the “battle” seemed lost. After all, if Harry Potter could continue to face Voldemort, then they could defeat their own “monsters”.

Stories also allowed the children to construct a meaningful narrative to explain the often incomprehensible diseases they were so bravely facing. Many believe that our ability to create and share stories is what defines us as human beings, and these kids demonstrated that. Stories inspired, captivated and transported them.

4. Swimming in the sea, playing on the sand and eating ice cream (even on a cold day) are simple, memorable pleasures.

Children vividly remembered the simple pleasures that cost little except the effort of being truly present; the moments that may have seemed small at the time were often, upon reflection, priceless.

5. Children as young as four worried about what would happen to their parents.

Many of the kids had made peace with their fates but wanted to protect mum and dad from additional heartache. This role-reversal is surprisingly common and indicates that children are far more attuned to their bodies than we think they are. Death is the elephant in the room. Part of my job is to encourage honesty and to get everyone talking, even when it’s painful.

6. Simple acts of kindness were treasured and remembered until the very end.

Kindness, whether from the classmate who offered a sandwich or a nurse’s smile, was the virtue that made the biggest impact on the children. They loved kind people and remembered acts of kindness until the very end. The last words I heard from one little girl were: “Thank you for holding my hand when I was scared.”

None of these revelations are new or earth-shattering, but when they come from children who are bravely facing death, an extra level of profundity is added, which has prompted many (including myself) to re-evaluate just what is important with the very limited time we have. Now, if you’ll excuse me, I’m off to the beach to eat an ice cream.

Complete Article HERE!

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02/9/18

Sitting With Silence in End-of-Life Cancer Care

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Sometimes compassionate silence can be more effective than action when caring for a terminally ill person.

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The capacity to bear witness and respond empathically to a dying person’s suffering is inherent in end-of-life care. Holistic, relationship-centered, compassionate care is the hallmark of palliative end-of-life care.1 Yet, simultaneously, researchers have found medical training sometimes ill-equipped in preparing clinicians for the range of concerns and emotions expressed by dying patients and their families. Healthcare professionals report lacking skills in psychosocial and spiritual care of dying people, resulting in high levels of moral distress, grief, and burnout.1 Similarly, Tornoe and colleagues found “western society’s fast-paced healthcare environment conditions us to view death as a physiological event and a failure rather than a natural part of the human lifecycle and a second passage of a life.”

Modern medicine with its emphasis on cure frequently discovers itself struggling with an array of challenges in end-of-life care. Studies on the influence of compassionate silence in end-of-life care have indicated that clinicians’ focus solely on “doing” may actually be inappropriate at times and inhibit their ability to effectively address and meet the needs of the person who is terminally ill. A prominent theme was that the “do, fix, and hopefully cure” mandate in modern medicine may not be appropriate at the end of life and, in fact, may need to be balanced with the quality of being present with those who are suffering.1 Being “present” to patients who are nearing death therefore entails that clinicians possess a certain comfort level in terms of “sitting with the silence” and offering the “gift of presence.”

The Landscape of Silences

The research of Back and colleagues outlined 3 types of silences that can manifest between patients and clinicians in the clinical encounter: awkward, invitational, and compassionate. In regard to awkward silences, they write, “silence most often feels like it is dragging on too long when a well-meaning clinician thinks he should be ‘using silence.’ While we recognize that new skills have a learning curve before they can be performed smoothly, we also think that the problem with a directive to stop doing something is unlikely to produce the quality of silence that is actually therapeutic.”

Invitational silences are often intentional and used to evoke certain thoughts or feelings from the patient in an attempt to engender further dialogue and reflection. “The clinician deliberately creates a silence meant to convey empathy, allow a patient time to think or feel, or to invite the patient into the conversation in some way. While we recognize that these silences are tremendously valuable, we also note that these silences are often described as a kind of holding, which has a stage-setting, expectant quality,” explained Back. Invitational silence mentored by mindfulness can be effective in heightening patients’ awareness of the moment and help them observe their feelings and thoughts in noncritical or nonjudgmental ways. Conversely, mindfulness and the clinician’s ability to “quiet the mind” may also help to free one from distractions that might preclude attentiveness to the present moment. The clinician has to shift his or her thought from a narrative mode to one a patient perceives as more empathic or compassionate.

Although minor attention has been given to compassionate silences, researchers recently have taken note and underscored its significance in end-of-life care. Rooted in contemplative practices, compassionate silences encompass a way of being in the world and with the dying that cannot be contrived nor forced by clinicians. “Compassion in contemplative traditions is transmitted through a quality of mind … and is not a tool to be used with a specific set of indications and meanings,” Back explains. In another study conducted with hospice nurses and pertinent to the practice of consoling presence, Tornoe and colleagues found that embracing the silence demanded a mental shift from a focus on doing something for the patient to being with the patient. Compassionate silences, therefore, should never be understood as a means or device in which to create therapeutic relationships. The clinician’s ability to empathize and “join with” the suffering of the dying fosters rapport. Being present in the moment elicits openness in allowing our humanity to speak. Compassion for the other emerges naturally and freely from within. The ability to abide compassionately, amidst silence in end-of-life care and simply be provides depth and soul to the patient-clinician encounter. Clinicians who developed the ability to maintain stable attention and emotional balance, and are naturally comfortable expressing empathy and compassion can spontaneously achieve compassionate silences.

Conclusion

Mindfulness meditation, contemplative practices, and centering prayer are proven to help clinicians cultivate empathy and develop “consoling presence.” Although further research is needed, studies have clearly demonstrated the positive influence of these techniques in promoting a way of being and quality of mind that is crucial to end-of-life care. Whether meditative practices enhance empathic behavior is not known; however, evidence suggests that meditation has a positive effect on factors known to influence empathic mental processes.

Complete Article HERE!

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01/30/18

What to Say When You Meet the Angel of Death at a Party

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After years of living with stage IV cancer, I have some suggestions.

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EVERY 90 days I lie in a whirling CT machine, dye coursing through my veins, and the doctors look to see whether the tumors in my liver are growing. If they are not, the doctors smile and schedule another scan. The rhythm has been the same since my doctors told me I had stage IV colon cancer two and a half years ago. I live for three months, take a deep breath and hope to start over again. I will probably do this for the rest of my life. Whatever that means.

When my scan is over, I need to make clear to my friends and my family that though I pray to be declared cured, I must be grateful. I have three more months of life. Hallelujah.

So I try to put the news in a little Facebook post, that mix of sun and cloud. I am trying to clear the linguistic hurdles that show up on my chart. Noncurative. Stage IV. I want to communicate that I am hoping for a continued “durable remission” in the face of no perfect cure, but the comments section is a blurry mess of “You kicked cancer’s butt!” and “God bless you in your preparations.”

It feels impossible to transmit the kernel of truth. I am not dying. I am not terminal. I am keeping vigil in the place of almost death. I stand in the in-between where everyone must pass, but so few can remain.

I was recently at a party in a head-to-toe Tonya Harding costume, my blond wig in a perfect French braid, and a woman I know spotted me from across the dance floor.

“I guess you’re not dying!” she yelled over the music, and everyone stopped to stare at me.

“I’m working on it!” I yelled back, after briefly reconsidering my commitment to pacifism.

We all harbor the knowledge, however covertly, that we’re going to die, but when it comes to small talk, I am the angel of death. I have seen people try to swallow their own tongue after uttering the simple words “How are you?” I watch loved ones devolve into stammering good wishes and then devastating looks of pity. I can see how easily a well-meaning but ill-placed suggestion makes them want to throw themselves into oncoming traffic.

A friend came back from Australia with a year’s worth of adventures to tell and ended with a breathless “You have to go there sometime!” He lapsed into silence, seeming to remember at that very moment that I was in the hospital. And I didn’t know how to say that the future was like a language I didn’t speak anymore.

Most people I talk with succumb immediately to a swift death by free association. I remind them of something horrible and suddenly they are using words like “pustules” at my child’s fourth-birthday party. They might be reminded of an aunt, a neighbor or a cousin’s friend. No matter how distant the connection, all the excruciating particularities of this person’s misfortune will be excavated.

This is not comforting. But I remind myself to pay attention because some people give you their heartbreak like a gift. It was a month or so into my grueling chemotherapy regimen when my favorite nurse sat down next to me at the cancer clinic and said softly: “I’ve been meaning to tell you. I lost a baby.”

The way she said “baby,” with the lightest touch, made me understand. She had nurtured a spark of life in her body and held that child in her arms, and somewhere along the way she had been forced to bury that piece of herself in the ground. I might have known by the way she smoothed all my frayed emotions and never pried for details about my illness. She knew what it was like to keep marching long after the world had ended.

What does the suffering person really want? How can you navigate the waters left churning in the wake of tragedy? I find that the people least likely to know the answer to these questions can be lumped into three categories: minimizers, teachers and solvers.

The minimizers are those who think I shouldn’t be so upset because the significance of my illness is relative. These people are very easy to spot because most of their sentences begin with “Well, at least ….” Minimizers often want to make sure that suffering people are truly deserving before doling out compassion.

My sister was on a plane from Toronto to visit me in the hospital and told her seatmate why she was traveling. Then, as she wondered when she had signed up to be a contestant in the calamity Olympics, the stranger explained that my cancer was vastly preferable to life during the Iranian revolution.

Some people minimize spiritually by reminding me that cosmically, death isn’t the ultimate end. “It doesn’t matter, in the end, whether we are here or ‘there.’ It’s all the same,” said a woman in the prime of her youth. She emailed this message to me with a lot of praying-hand emoticons. I am a professor at a Christian seminary, so a lot of Christians like to remind me that heaven is my true home, which makes me want to ask them if they would like to go home before me. Maybe now?

Atheists can be equally bossy by demanding that I immediately give up any search for meaning. One told me that my faith was holding me hostage to an inscrutable God, that I should let go of this theological guesswork and realize that we are living in a neutral universe. But the message is the same: Stop complaining and accept the world as it is.

The second exhausting type of response comes from the teachers, who focus on how this experience is supposed to be an education in mind, body and spirit. “I hope you have a ‘Job’ experience,” one man said bluntly. I can’t think of anything worse to wish on someone. God allowed Satan to rob Job of everything, including his children’s lives. Do I need to lose something more to learn God’s character? Sometimes I want every know-it-all to send me a note when they face the grisly specter of death, and I’ll send them a poster of a koala that says, “Hang in there!”

The hardest lessons come from the solutions people, who are already a little disappointed that I am not saving myself. There is always a nutritional supplement, Bible verse or mental process I have not adequately tried. “Keep smiling! Your attitude determines your destiny!” said a stranger named Jane in an email, having heard my news somewhere, and I was immediately worn out by the tyranny of prescriptive joy.

There is a trite cruelty in the logic of the perfectly certain. Those people are not simply trying to give me something. They are tallying up the sum of my life — looking for clues, sometimes for answers — for the purpose of pronouncing a verdict. But I am not on trial. To so many people, I am no longer just myself. I am a reminder of a thought that is difficult for the rational brain to accept: that the elements that constitute our bodies might fail at any moment. When I originally got my diagnosis at age 35, all I could think to say was, “But I have a son.” It was the best argument I had. I can’t end. This world can’t end. It had just begun.

A tragedy is like a fault line. A life is split into a before and an after, and most of the time, the before was better. Few people will let you admit that out loud. Sometimes those who love you best will skip that first horrible step of saying: “I’m sorry. I’m so sorry this is happening to you.” Hope may prevent them from acknowledging how much has already been lost. But acknowledgment is also a mercy. It can be a smile or a simple “Oh, hon, what a year you’ve had.” It does not ask anything from me but makes a little space for me to stand there in that moment. Without it, I often feel like I am starring in a reality program about a woman who gets cancer and is very cheerful about it.

After acknowledgment must come love. This part is tricky because when friends and acquaintances begin pouring out praise, it can sound a little too much like a eulogy. I’ve had more than one kindly letter written about me in the past tense, when I need to be told who I might yet become.

But the impulse to offer encouragement is a perfect one. There is tremendous power in touch, in gifts and in affirmations when everything you knew about yourself might not be true anymore. I am a professor, but will I ever teach again? I’m a mom, but for how long? A friend knits me socks and another drops off cookies, and still another writes a funny email or takes me to a concert. These seemingly small efforts are anchors that hold me to the present, that keep me from floating away on thoughts of an unknown future. They say to me, like my sister Maria did on one very bad day: “Yes, the world is changed, dear heart, but do not be afraid. You are loved, you are loved. You will not disappear. I am here.”

Complete Article HERE!

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01/14/18

Embrace the Reaper: Death and Dying Between the Panels

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Super-heroes are meant to die.

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Stay with me here: all hero stories should end with a coffin. It’s the only logical ending.

Every single super-hero put on their cape, cowl, or spandex because they were no longer able to accept their world for what it was. They couldn’t turn away from the malice, injustice, chaos, or whatever ominous synonym for “badness,” that seeped into the cracks of their society or personal life.

And tragically, they’ll never conquer that badness. The super-hero is never going to fully vanquish their arch-nemesis once and for all. The hero’s mission will never be finished because that which they chose to fight will always remain. Badness, sadly, is a facet of human nature. The only true ending to this futile struggle is a funeral.

Very doom and gloom, right? Not when you realize the beauty in that futility.

Wolverine has the most complete arc in all of superhero comics. Debuting in 1975, the man we eventually came to know as Logan was nothing more than a wandering savage looking for purpose and to atone for his sins. After a tussle with The Hulk, Professor X approached Wolverine to join the X-Men and Wolvie said, “Why not?”

From there, he found a home within the X-Mansion, dignity as an X-Man, love in the eyes of Jean Grey, and finally, atonement by founding his own school for wayward mutants to ensure that they would never suffer the same mistakes that he did. His story is a complete circle — a journey made whole, as the wandering savage found peace in helping others.

And at the end of that circle was death.

In the subtly titled mini-series “Death of Wolverine,” Logan meets his end after he loses his healing factor and ends up encased in a tomb of adamantium en route to finally finding the scientist who laced his bones with the mysterious alloy in the first place. The series felt mundane to me until the last four pages. This scientist, realizing he is about to be all sorts of stabbed, asks a murderous Wolverine — who has a coating of smoldering adamantium hardening on his person — what made him a hero? What had he ever accomplished?

Before Wolverine answers that question, the audience is gifted a stunning, heart-wrenching, two-page splash of Wolverine’s finest moments — right before Logan makes his final kill. Then he kneels down, accepting the adamantium grave, and gruffly answers that question by saying, “Enough.”

“Enough,” meaning that Wolverine finally realized all the pain he suffered, blood that he spilled, and death he brought was worth something.

“Enough,” meaning that the sum of deeds helped make the world around him better.

“Enough,” meaning he had lived his purpose and his journey was at its end.

And “Enough,” meaning that he finally atoned for the man he was and was at peace with the man he became.

It’s a perfect death. We were given the opportunity to go on one final adventure with a character we love. The character is given literal and existential threats along the way, suggesting that the audience ponder the meaning of his life. And ultimately, the character and the audience are meant to find closure and meaning from the character’s journey, just as the grim reaper comes for his due.

But Wolverine is a comic book character.

And just like every major comic book character since 1992 (thanks in some part to the wild critical and financial success of “The Death of Superman”), he died and is now being resurrected via plot-chicanery. And so this begets the age-old question: What is the point of death in super-hero comics?

That’s simple. Death in super-hero books is no longer an ending. It’s a plot device. It’s just another story.

A super-hero’s battle will never end. Batman will never rid Gotham of random violence and chaos. The Flash will never be fast enough to stop all the tragedies in Central City from happening. Daredevil will never bring justice to Hell’s Kitchen.

But they’re not meant to. Their battles and stories are meant to be anecdotes and parables that inspire us to make ourselves and our world better.

That message though invariably gets muddled amidst all the plot contrivances, retcons, and reboots of any given hero’s character history. We as an audience often spend more time trying to keep all the details in check. We care more about what the Speed Force can do or what color Kryptonite is getting tossed around. And we stop paying attention to what the super-hero’s story is trying to say.

This is why we need the reaper.

The reaper can tear away all the plot contrivances around a super-hero’s story to distill the very essence of that character’s message. When the Flash famously ran himself to death to stop the Anti-Monitor in Crisis on Infinite Earths, did you care about the specifics of how it happened? Were you concerned about every detail of Doomsday’s origin did as you watched Superman have his ill-fated boxing match with him to protect Metropolis? Did it bother you that Wolverine had bone claws under his adamantium skeleton as the cocoon was hardening around him?

No, you felt that Barry would knowingly die to help as many people as he could. You remembered that Clark is a farm-boy, who taught you to stand up to monsters. And that Logan was just a man who didn’t want people to suffer the way he did.

Super-hero deaths are often telegraphed and advertised to readers for the sake of marketing. No matter how final it appears or how long it takes, they will always be reversed. They may be clichéd, melodramatic, and whatever that guy from your comic-shop said — but: when they’re used effectively, they can definitively epitomize and enshrine a hero’s message.

There is no better way to celebrate the life of a super-hero, than by watching their death.

Complete Article HERE!

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12/27/17

In the 16th Century, the Best Office Decor was a Tiny Rotting Corpse

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Miniature memento moris were all the rage for around 300 years.

A 16th-century memento mori attributed to Hans Leinberger.

by Ella Morton

There are many additions you can make to your office desk in order to remind yourself to stay motivated, seize the day, and make every minute count. A mini zen garden or framed motivational quote, for instance; maybe a page-a-day calendar with a kitten hanging from a branch.

Or a 16th-century statuette of a rotting corpse.

The wooden carving above, sculpted by German artist Hans Leinberger in the 1520s, is a memento mori—a reminder of human mortality designed to keep its owner humble, focused, and untethered to worldly possessions. In 16th-century Europe, these stark odes to humanity’s transience appeared in the form of tomb effigies, full-sized statues, and smaller sculptures perfect for a tabletop.

The predominant image of these artworks was that of the upright corpse, depicted with a torn flesh suit and exposed ribs. The figure sometimes held an object; the corpse in Leinberger’s sculpture clutches a scroll with a Latin inscription that translates to “I am what you will be. I was what you are. For every man is this so.” 

One of the more striking full-sized memento moris of the era is the statue of René de Chalon, a French prince who died at 25 in the 1544 siege of Saint-Dizier. Known as a transi—for its depiction of human transience—the sculpture shows the prince’s desiccated corpse holding his own heart aloft.

The transi of René de Chalon.

Post-Renaissance, portable memento moris continued to be sculpted, with half-human, half-skeleton figures offering a slightly less gruesome way to remember one’s mortality. The half-half statuettes below were created in the early 19th century to encourage “spiritual contemplation.”

Memento mori figures from the early 19th century.

The wooden carving below, which was created in 19th-century Italy, shows a woman’s head with half her skull exposed. Note the baby snake wrapped around her mandible. Note also that despite the facial decay, her ruffled collar and lace cap are perfectly intact.

A 19th-century Italian memento mori.

Those preferring a more subtle, easily concealable reminder of death—one that can be whipped out for contemplation during a train ride, then stashed in a pocket on disembarking—could opt for a pendant-style memento mori like the one below. It dates to either the 18th or 19th century.

Skeleton in coffin pendant, Europe, 1701-1900.

Regardless of their size and level of grisliness, portable memento moris all offered the same message: life is short, you will die, and earthly possessions don’t matter. The fact that this message was contained in an earthly possession is just part of the thrilling paradox that is human existence.

Complete Article HERE!

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12/18/17

Death Without Duality: Three Both/Ands at the End of Life

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Dying, like living, is not an either/or affair. It’s a both/and. Which is part of what makes it all so maddening for the floundering human who craves the comfort of dualities, of right and wrong, of fail-proof instructions.

I was reminded of this by some of the masters this month when I had the honor of hosting the End Well symposium in San Francisco. Twenty-eight speakers took the stage and talked about their experiences of almost dying, or treating the dying, or mourning someone who has died, or caring for the caregivers, or trying to shape policy or redesign systems or teach people about dying and/or do some of these simultaneously. There was some anger, and no small amount of sadness of course, but also a surprising amount of laughter. It turns out that we are funny right to the end.

Here are three both/and axioms that I heard echoed most often from people with a hugely wide range of professional backgrounds:

1) Reckoning with one’s life at the time of death is both the simplest thing in the world and the most complex.

Buddhist teacher and co-founder of the Zen Hospice Project, Frank Ostaseski, put it beautifully:

“At the end of life, it gets really simple: Am I loved? Did I love well?”

He’s right. Those questions are incredibly simple. As are the “four things” one can say — “Please forgive me,” “I forgive you,” “Thank you,” and “I love you” — at the time of death, popularized by Ira Byock. One of the huge, unique gifts of facing the end of life — whether your own or someone you love — is that the urgency for healing is undeniable.

But the dynamics that spark and rot and flow and flutter underneath those questions are anything but simple. They are as complex as human relationships as a whole, which is to say very fucking complex. The answer to the question of whether I am loved may seem obvious to an outsider, but if I’ve never felt loved in the right way by the one person I needed it most from, I may not be capable of a “yes.” Even at the time of death, especially at the time of death, we are not logical creatures.

And to answer whether we have loved well is perhaps an even more charged and challenged task. We carry our regrets and sense of relational inadequacy around for decades and then, in the end, are asked to lay them down and surrender to our own imperfection. A tall order. The tallest perhaps. Dr. B.J. Miller, former executive director of the Zen Hospice Project and a clinician, teaches:

“If there is any enemy at the end of life it is shame.”

If we can’t shed our shame, it makes it hard to go. The power in the dying process, from what I gather from these wise souls, is acknowledging the complexity underneath or behind the simplicity and still managing to grace one another with the forgiveness and recognition that we all so desperately crave. It is the kind of emotional courage that transcends death.

2) Our job, when caring for the dying, is to ease suffering, but also recognize that it is a source of meaning for many people.

B.J. also said, “I wouldn’t wish a lack of suffering on my worst enemy. There’s no way to learn.”

He knows a bit about it, having had three limbs amputated and survived near-lethal burns on much of his body after an accident in college. His own time in hell was incredible preparation for a lifetime of treating patients and talking with people about facing death.

Some of us have an inclination to romanticize death. It’s the peak of drama, no doubt — the final scene. But of course it is not all buzzer beater catharsis and mystical visitations. It is sometimes choking and seizing and terrible, ugly, unbearable pain. In a word, suffering.

Now the role of palliative care, but all health care really, is to ease suffering. This is true and important and so often lost in our current system, which too often feeds the wrong motivations in otherwise decent and smart humans. We have to redesign the system so that easing suffering is the heart of everything we do, or as designer Ivor Williams puts it, “Death involves everyone. Design accordingly.”

And yet, B.J. Miller would not be B.J. Miller without his suffering. None of would be any of us without our suffering. It is what erodes our delusions and softens our hubris and strengthens our capacity to resist duality and blame. It is the fires in which we are all forged.

So that, too, we must remember. Which doesn’t mean easing off on pain meds, but it does mean witnessing suffering as a sacred and necessary part of being human, even as we try to work with its ferocity and sit with the one being visited at this particular moment. Or as Dr. Lucy Kalanithi, a clinician, beautiful speaker, and widow to Paul Kalanithi, author of When Breath Becomes Air, put it:

“A gift we get to have in medicine is to be witnesses. It’s a front row seat to the human condition.”

3) When you die, you are the most alone you will ever be, and yet you cannot do it well without the gift of others.

Think about it: There is no journey more solitary, by definition, than that of dying — unless you Thelma-and-Louise it. Just as you have lived in your body alone all your life — experienced its holy and wholly specific alchemy of aches and pains and pleasures — you and only you leave that body at some unpredictable moment. (As I write this, I’m reminded how otherworldly pregnancy is, a moment when women actually do, in a sense, share their solitary experience for 10 strange months.)

In any case, accepting the solitude of it is probably key to surrendering to it. You have to go it alone, at least from a purely physical sense.

And yet, to die well is to die together. Or at least surrounded by people who care for you in your time of exquisite vulnerability. Hopefully these are people who have known you at your most robust, people that you have cared for, people you have eaten and drunk too much with and laughed beside and tickled and fought with and repaired again. Hopefully these are people who know your wishes and will fight like momma bears to see them through.

In one study, 66 percent of people said that the thing they feared most at the moment of death was pain. Understandable. And not particularly surprising. Do you know what topped that fear? The fear that they would be a burden to their family members — logistically, psychologically, financially.

Dr. Aditi Mallick says, “The things that scare us the most about death are at the core of what it means to be human.” Indeed, we fear being dependent on others, being inconvenient and messy and powerless, our whole lives long. And when we die, this fear becomes epic. Our power lies in making peace with it. If we live like we will one day die, then we can’t help but create relationships that are loving and strong and imperfect and they can weather even this, the final test of the human condition.

As B.J. puts it, “The end of life is a call to learn how to be loved. The hardest thing of all.”

Complete Article HERE!

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12/15/17

The Drift Called the Infinite: Emily Dickinson on Making Sense of Loss

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Reflections on silence and eternity from the poet laureate of death.

“The people we most love do become a physical part of us, ingrained in our synapses, in the pathways where memories are created,” poet Meghan O’Rourke wrote in her stirring memoir of losing her mother. More than a century earlier, another poet with a rare gift for philosophical prose reflected on mortality in the wake of her own mother’s death.

Emily Dickinson (December 10, 1830–May 15, 1886) was about to turn fifty-two when her mother, after whom she was named, died. A stroke had left her paralyzed and almost entirely disabled eight years earlier. Despite her lifelong infirm health, her disinterest in the life of the mind, and the surges of unhappiness in the Dickinson home, Emily Norcross Dickinson had been attentive and affectionate to her daughter, igniting the poet’s little-known but ardent passion for botany and prompting her to write that “home is a holy thing.”

Although a contemplation of mortality haunts nearly all of Dickinson’s 1775 surviving poems in varying degrees of directness, her mother’s death forced a confrontation with mortality of a wholly different order — loss as an acute immediacy rather than a symbolic and speculative abstraction.

In a letter to her cousins penned shortly after her mother’s death in November of 1882 and found in The Letters of Emily Dickinson (public library), the poet writes:

Mother’s dying almost stunned my spirit… She slipped from our fingers like a flake gathered by the wind, and is now part of the drift called “the infinite.”

We don’t know where she is, though so many tell us.

Emily Dickinson, daguerreotype, circa 1847.

Even as a child, Emily had come to doubt the immortality so resolutely promised by the Calvinist dogma of her elders. “Sermons on unbelief ever did attract me,” she wrote in her twenties to Susan Gilbert — her first great love and lifelong closest friend. Dickinson went on to reject the prescriptive traditional religion of her era, never joined a church, and adopted a view of spirituality kindred to astronomer Maria Mitchell’s. It is with this mindset that she adds in the letter to her cousins:

I believe we shall in some manner be cherished by our Maker — that the One who gave us this remarkable earth has the power still farther to surprise that which He has caused. Beyond that all is silence…

Writing less than four years before her own untimely death, she ends the letter with these words:

I cannot tell how Eternity seems. It sweeps around me like a sea… Thank you for remembering me. Remembrance — mighty word.

In another letter from the following spring, penned after receiving news of a friend’s death, Dickinson stills her swirling sorrow the best way she knew how — in a poem:

Each that we lose takes part of us;
A crescent still abides,
Which like the moon, some turbid night,
Is summoned by the tides.

She adds a sobering reflection on the shock each of us experiences the first time we lose a loved one:

Till the first friend dies, we think ecstasy impersonal, but then discover that he was the cup from which we drank it, itself as yet unknown.

Complement with a collection of moving consolation letters by great artists, writers, and scientists ranging from Lincoln to Einstein to Turing, psychoanalyst Adam Phillips on how Darwin and Freud shaped our relationship to mortality, Seneca on the key to resilience in the face of loss, and this unusual Danish picture-book about death, then revisit Cynthia Nixon’s beautiful reading of Dickinson’s “While I was fearing it, it came” and Dickinson’s forgotten herbarium — an elegy for time and mortality at the intersection of poetry and science.

Complete Article HERE!

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