Month: March 2016

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The Long Walk Away From My Son’s Grave

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The Long Walk Away

The hardest steps I ever took happened 17 years ago, on a hot Thursday afternoon in early September, as I walked away from my son’s grave for the first time. The cemetery smelled of juniper and baked dirt, and as my husband Jason and I stood arm-in-arm, readying ourselves to go, I felt the heat rise up from our ankles. I remember how my body slowly lurched forward as we steered each other toward the car while the hot sun filled the high desert cemetery with light. The wind, an almost constant presence out there, was still as I made my way along, feet dodging big clumps of cheatgrass along the way.

Just two days earlier, we’d sat huddled together at the mortuary, “making arrangements” as they called it, which really meant having to tell someone else about how our lives seemingly and without warning came to a halt as Dylan’s heart stopped beating in utero, a week past his due date. He was stillborn. We’d walked out of the hospital carrying a small purple memory box rather than our 10-pound son.

The day we buried Dylan, there were reminders all around me of how the forces of nature could alter everything. Close to the cemetery, outside our then-home of Bend, Oregon, the elevated peaks of Three Sisters weren’t the gentle fairy tale their name suggested, but the result of plates that had shifted deep in the earth, during a process called subduction. Layers of crust had crashed into each other in a fiery show, perhaps tens of thousands of years ago, creating the widest and longest fault lines in the earth.

Subduction zones are places where great trauma lies. And here I was, all these years after the mountains formed, standing in their shadows in the middle of my own destruction. Enveloped in grief. Loss all around me.

***

Dylan’s in every step I take as I walk away from his grave. He’s all I can think about as I recall the sound that came out of me when I held him for the first time, “Oh!” His still warm body is wrapped in a white cotton blanket and he is wearing a little white onesie with colorful baby-sized hand prints across it. At first glance, his face looks reddish, and I can see that it’s turning blue, but I am not seeing what he is right now. My eyes are soaking up what he should have been. I can see the slight curve of his nose and the shock of dark hair on his head. His eyes are closed, but I know the sky-blue they would otherwise be. He feels light in my arms as I hold him close against my own skin, and as I study him, I am quiet for a while. He’s brand new and so familiar at the same time.

Perhaps there are still other people in the room, or maybe not. Everything and everyone else recedes and all I see is the top of his head and all I hear are words that come pouring out of some deep recess: “I love you so very much. All the way to the moon and back and around the world three hundred and sixty seven times.”

“He’s brand new and so familiar at the same time.”

Some words I say out loud, and some words I don’t need to give voice to. I know that he hears them. It is an ancient wisdom. I tell him about his family and about his sister. I tell him about his room and our cats. I tell him that we all love him. All this time, I am holding my son for the only time we will be together on this big blue planet. I know that this is something I will never get back. I know I have to remember this fiercely. It will all be over far too soon.

Later, when I can reflect on the funeral, I remember our family and friends dropping what they’re doing to stand with us. I remember our daughter sitting on the ground with friends, and their three little heads bowed together while playing with dolls. I remember visually gathering some of their innocence, and it feeling like something close to hope.

As we drive along the dirt road that leads out of the cemetery, I slump down in the seat. By the time we reach the fence, as it will happen every single time, perhaps for the rest of my life, my tears water the desert air. Even as the miles pass and we make our way back to Bend, toward our families and the small gathering at his grandparents’ house, inside my head, I stay in the cemetary where my son is buried, my heart turned inside out.

***

After Dylan’s funeral, we walked back to our apartment and into a life that the three of us no longer fit into. For more than a year, we did our best to go through the motions—we worked, we took short family vacations to the coast and southern Oregon, and we tried to dodge the grief that followed us. Then one day, our 4-year-old daughter asked, “Mom, we used to be so happy, huh?” I nodded. “And then Dylan died and now we’re all so sad.” Six words leapt at me. “When will we be happy again?”

Up until her brother’s death, our lives had been full of quiet walks down a gravel-filled road on the outskirts of Sunriver, where we scouted ospreys, baby hawks, and porcupines. “Look,” I’d say while pointing out some amazing new discovery as we wandered the edge of the Deschutes River. We lived in a sweet log cabin that Jason’s Aunt Jennifer built with her own hands. At night there was a gathering of stars above us as the clearest moon lit up the sky. It was by all accounts an idyllic life and for her, it was a gentle childhood surrounded by a forest of towering but friendly ponderosas and jack pines.

Now I felt like we’d all been catapulted headfirst into the kind of neighborhood you didn’t want to be in after dark. We’d never been here before, didn’t know where we were going, and from what I could see, there weren’t any road maps. Clearly we’d lost our bearings. How could we go from such a well-crafted “before” to such an unimaginable “after”?

“How could we go from such a well-crafted ‘before’ to such an unimaginable ‘after’?”

That fall, my daughter could have entered pre-school, but the thought of sending her away, even just for a few hours, was inconceivable to me. She was my reason for getting up and facing each day. When I wanted to hole up and stay home, she would cajole me to take her to the park so she could swing higher and higher. She pointed to birds and flowers around our neighborhood and made me see beauty again. “Look at that!” she would say. And on the days when I could barely drag myself out of bed in the morning, she would be there. “I love you,” she would remind me. All those lessons I had poured into her, came right back to me when I needed them most.

And all the time, those six words pulled me along, inspiring me to keep trying to find something that resembled happiness in this new form. We moved back to southern Oregon and eventually made our way back to Ashland, where bright red flags lined Main Street and the lush foothills around us offered a sense of peace. I didn’t know it back then, but we were charting our own map, however imperfect. We threw ourselves into volunteer work, discovering in the process that fighting for the rights of low-income people—for better access to health care, economic justice, and independent media that tells the stories behind the issues—felt especially fortifying.  We rooted ourselves in southern Oregon until it felt like home. Healing crept up on us, not all at once, but in tiny flashes of kindness. Two more daughters were born and grew.

Above us, the moon kept rising and lighting up the darkness. Seventeen years passed.

***

Here’s the thing that nobody else will tell you about grief. Sometimes, however uncomfortable it is, you just have to sit with sadness for awhile. Sorrow waxes and wanes. You can ground yourself in simple things while time drags along; I recommend the taste of a fresh, ripe peach, listening to the sounds that a hummingbird’s wings make when they visit the feeders, and love notes penned to a small daughter, perhaps added into a brown paper lunch bag with a funny little drawing on one side.

“Sometimes, however uncomfortable it is, you just have to sit with sadness for awhile.”

The sorrow that most of us want to flee helps spit-shine the lens, until we see things more clearly, feel things more deeply. And perhaps, in its wake, grief may even beget a baffling richness.

Complete Article HERE!

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Who Should Have The Right To Die

Doctor-assisted dying continues to be hotly debated in the United States, but the ideas – and specifically the words – used to support it have evolved in fascinating ways. Over nearly a century, there has been a shift away from terms related to death towards a focus on autonomy and dignity, drawing in no small part on the ideas of the 19th-century English philosopher John Stuart Mill.

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Dying Better, Even If It Means Sooner

Delaying death with excessive, expensive end-of-life care often does more harm than good.

Focus on the simple things, not extraordinary measures
Focus on the simple things, not extraordinary measures

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Life expectancy in the United States has increased by 30 years in the last century. Despite our longer lives, many Americans continue to fight death’s inevitability in ways that are costly socially, economically and spiritually. Our over-reliance on medical “miracles” is causing us to throw more and more money at the final year of life rather than grapple with the difficult – but ultimately more gratifying – work of approaching death more willfully by removing the sense of crisis and making the most of the moments that remain.

Defying and delaying death often remains the focus of many care providers even when patients reach their 80s, 90s and 100s. These individual decisions add up to the single greatest expenditure in the national health system: Care in the last 12 months of life accounts for over 25 percent of total expenditures for both Medicare and Medicaid. And while some studies have argued for cost savingsassociated with hospice care, others show cost neutral effects of engaging hospice in the last months of life, depending on how cost is measured and over what period of life. Meanwhile, a number of states are passing aid-in-dying laws, which will have moral, social and economic impacts, but the bills are simply directed at ending suffering; the changes in dying made possible by such laws (notably in Oregon) have not been the subject of economic analysis to date.

In short, driving down end-of-life costs will be slow because these costs are sustained by medical practice and patient choice, both social and behavioral practices subject to slow change. While this level of spending is unsustainable, there are greater costs – constantly fighting against death’s inevitability is also deeply unsatisfying.

Looking back, many sons and daughters I have worked with regret having encouraged a parent to undergo a hip surgery. Spouses regret pushing for their loved ones to be intubated, and many patients struggle to balance the suffering with the life-prolonging effects of their treatments. Such regrets are the outgrowth of an approach to death that is focused on delaying death rather than being present and accompanying loved ones as they are dying. Accessing death-delaying treatments often comes at the expense of easing discomfort and being intentional about the nonmedical ways we can help our dying loved ones.

End-of-life laborers are very clear about limiting the extraordinary measures some of their patients allow in their own lives. Their plans, shaped by their work with the dying, give clear direction about how they want to live: deliberately and without much medical intervention as they encounter illness and disease later in life. They sometimes mourn the life-extending measures that can prolong life at a very low quality and instead encourage loved ones to be present as often as possible, continue routines, tell stories, touch our dying loved ones and find ways to meaningfully connect, like looking at photos, being together in nature, listening to music or sharing a favorite food.

Although our medical advances are partially responsible for our longer years, when we begin parting with life, many end-of-life laborers remind us to focus on the mundane, not the extraordinary. They encourage family members and patients themselves to pause before pursuing treatments, to be as deliberate and purposeful about planning as possible and to enjoy those things that have always delighted or engaged them for as long as possible.

The friends and family members who are most proud of how they helped their loved ones often talk about little tokens: a friend clipped part of a favorite flower so her friend could smell her yard one more time; a daughter got the quilting club to gather in the hospice room; a son dug up a favorite book and read and read and read until he was certain his dad could no longer hear his voice.

Obviously families who seek life-prolonging measures do so for more moments with their loved ones. Unfortunately, aggressively delaying death often becomes the focus of the final weeks and days. Pursuing significant medical care often distances us from our loved ones: time spent in waiting rooms, surgical units and follow-up appointments, rather than watching the geese take off over a lake, taking that final trip to one’s homeland or reconnecting with friends who have been distant.

As more of us live longer and die slower, the challenge for many Americans will be to avoid rushing toward solutions and to live, sometimes quietly and uncomfortably, in the shadow of death’s certainty. End-of-life experts have taught me that recognizing limits might save us from some of the real damage we do to each other – asking our elders to fight on too long, to endure too many procedures and tests and surgeries and to spend too much time in the hospital instead of at home or in the garden – or holding the hand of someone who loves them.

Complete Article HERE!

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For loved ones, scattering of ashes becomes a healing journey

By BOB TEDESCHI

Scatter_ashes

On a January afternoon in 2013 when an oncologist first raised the possibility of Evan Scofield’s death, his mother Susan Scofield half-jokingly asked what she should do with his body. He was 25 at the time.

“Not my body, my ashes,” he told her. “Scatter me.”

He died six months later at age 26, and over the past three years his mother has honored that wish, enlisting a group of his closest survivors to scatter his ashes, if not to the four corners of the earth, something close to it.

They were also asked to write about the experience, and their tributes are collected on a website, ScatterEvan.com. It’s a testament to his life, of course, but it testifies, in particular, to a remarkable posthumous gift he arranged for his loved ones.

“I told him what I thought I’d do with all of his ashes and he said ‘No, not that,’” Scofield recalled during a recent phone call. “He said ‘You go to Scotland,’ because we’d talked a lot about hitting the Scotch distilleries together. With everybody else, his attitude was that they would know where to go.”

They did.

Evan’s ashes have found their way to the Ganga River, a rain-soaked garden in Kyoto, the Gulf of Alaska, a fjord in Iceland, and a lake on New Zealand’s south island.

Less exotic spots have also been quietly consecrated: a burger joint in LA, a Weezer cruise, the American Museum of Natural History.

“He was a very unusual person,” as his mom put it.

“He kept saying every year from age 7 on that we should go to Thermopylae for vacation. We said stop it; we’re not going to Thermopylae,” she said. “He loved anything to do with the ocean, and Vikings, and ancient history. Epic literature was his thing.”

He also had a thing for narwhals, so his friend Marc Seedorf saw to it that some of him ended up in Iceland in November 2014. Seedorf was joined by Evan’s close friend Alexander Maxwell and Evan’s partner of seven years, Ursula Strauss, who was a unifying force in the project.

Seedorf’s description of the experience ended with this passage:

“It was the most beautiful landscape I had ever witnessed. A house sat on the hillside with no view of another building in sight. We spent all day hiking the surrounding hills, learning, drinking fresh glacial water. After leaving one of Evan’s Buddhas on a window sill in the house, we found a spot on the shore for the scatter. I poured the ashes of my best friend in my hand and let him go into the water. All that I wanted when we were exploring Iceland was for Evan to be there to tell us about the Vikings that had once traveled those seas. To watch him climb some rocks he probably shouldn’t be climbing and somehow manage to come away unharmed. To sing us songs and translate the story of the northern lights at night. I feel very overwhelmed as I write this. With sadness and nostalgia. With anger. But I will be forever grateful that even after he was gone, Evan still made sure I was part of his adventure.”

There is danger, of course, in making too much of one community’s approach to memorializing a loved one. And Scofield does not for a moment suggest that this group’s decision is somehow prescriptive for others. Few would have the means to raise $45,000 in donations for the project, as they did, for instance.

And yet.

n ways, the “Scatter Evan” project embodies a sentiment that appears to be gathering momentum in the broader popular culture, outside the context of death. For the past decade or so, psychologists and philosophers have promoted the wisdom of buying experiences, not things, given the often deeper and longer-lasting emotional impact that experiences can offer.

Rather than leaving behind a monument or objects that might offer solace to survivors, ashes have become a conduit for a more experience-based connection to those who have died.

None of these things necessarily change the trajectory of a survivor’s mourning, said Holly G. Prigerson, who teaches and researches grief and end-of-life care, among other things, at the Weill Cornell Medical College.

“People always ask about burial rituals and whether they’re therapeutic and promote bereavement adjustment or not,” she said. “Sometimes, as may be the case here, how surviving loved ones memorialize the deceased is more an indicator of their adjustment than a promoter of it.”

Scofield said the project “gave us another focus and another form of communion with a group of people. Even for those who just donated money, it gave them an opportunity to feel like they did something, so they felt like they weren’t just completely powerless.”

The official final scatter will happen this summer, at the family’s summer gathering spot in Cape Hatteras. They will build a pitfire on the beach and throw in the rest of his ashes, his urn, and a Buddha statue Evan had been carving. He asked her to burn it, just as he asked her to let go of any personal belongings that might become a shrine, as he put it.

An unofficial last scatter will follow at a later date. “We’re holding a little bit left,” Scofield said. “We’re going to Thermopylae.”

Complete Article HERE!