by guest writer Michele Clark

Death is unimaginable. That’s the problem. If I try to conjure up no-me-ness, it’s impossible, because in death the “I” who imagines will be absent. So, what I wish for is a trial run, just to get a sense of death’s texture. If human life were sensibly arranged we would each get a test drive, before we had to do the real thing. But no, that’s exactly what isn’t possible. Life is unfair, said John F. Kennedy. But at least in many lives there is room for experimentation, failure, choosing again. Death, your own death has none of that. That’s what I call really unfair.

If we’re incapable of accurately fantasizing an experience of not- experiencing, the question then becomes where do we have room for experimentation, learning, and choice.  That place is around the fear of death — what it is, how to ease it.

This is what has helped me: Spending time with a dying friend.  His name was David Palmer. He was my first close friend to be taken by a terminal illness. And taken is exactly how it felt: he didn’t want to go, we didn’t want him to leave.

But Death pulled into the station of David’s life- which in this case was the house one hundred feet from mine, a house he built with his partner of forty-plus years, Jean Lathrop. Then, slowly over nineteen months, warning us every so often, then more and more frequently, with trips to emergency services – Death finally took him away. Volition didn’t count. Resistance was impossible.

Sometimes when David was too weak to get out of bed I would take a nap on the couch next to him. Sometimes I’d just sit in the room. There were other friends who helped more than I did – bathed or lifted him, but I ran some errands, cooked some meals. Sat with him. That was the biggest thing for me – just sitting at his bedside. I began to understand that it was a gift to be part of his dying. Even though it was a gift from the thirteenth fairy, the last gift he or Jean or I or any of our friends ever wanted.

“You’re a pioneer in this David,” I said once, knowing he would get the humor in it and the irony. “You’re teaching us how to do it.”

And he did. First, he stopped worrying about problems he could no longer fix – a leaky roof, trouble at his former business. And asked us not to talk to him about these things. Then he became, in that bed, very loving and open. I don’t know how this came about. Perhaps it was the nature of the situation – but this doesn’t happen to everyone in the process of dying. Suddenly I could kiss him once a day; whenever I left I could say I love you. There were outbursts of affection that would never have happened in an ordinary time. Finally, he really did become accepting and a tiny bit radiant. Then he was gone.

He died well, as much as one can perform well at something so unwelcome.

For myself, for the first time the severity and the inevitability of death seeped into my bones and heart.  A little late, I’m almost seventy, but there it is. (Believe me, I know that I am both privileged and perhaps cursed to be one of the few humans who has been a stranger to death.  But what can I do? I was born into good health, in modern times in a prosperous nation.)

I witnessed for myself how death cannot be resisted, so my fear of it began to ease. Death takes you. This felt like a relief. I don’t have to do anything about it. As Emily Dickinson says, “Because I could not stop for Death, He kindly stopped for me.”

What has changed? Now, sometimes, I intentionally notice and say sentences to myself like: This is the only time you’ll be walking down this driveway, on this particular day, Michele. Or: This is the only time you’ll be peeling this particular carrot. So that a preciousness arises- really just a moment – less than one second – passes through me, sometimes more than once a day, maybe three or five times in a day. Even when I’m grouchy I am able to sometimes think: Oh how lovely to be grouchy and not dead.

The moral of my story is the closer you involve yourself with the dying (I’m talking about daily American life here, not the life that Syrian refugee families or the children and adults in Iraq have known, a life with much too much death), the less you are fearful, the more you experience gratitude and appreciation in the present. The more you touch gratitude and appreciation the less you fear that big, gigantic, humongous loss which is your own mortality.

Maybe there are more gifts than these. I will tell you if I find them.

Michele Clark lives in Plainfield Vermont at the New Hamburger Community, an intentional community, where the events in this essay occurred. She is a a mental health counselor in private practice Montpelier and teaches half-time in the MA in Psychology and Counseling at Goddard College where she blogs as The Mediocre Meditator. 

Save the date!

Burlington, VT
July 12 – 17, 2016
Fletcher Free Library (235 College St.) & College St. Congregational Church (265 College St.)

The Wake Up To Dying Project Traveling Exhibit has created a dynamic and diverse public event in partnership with Burlington and surrounding communities, offering a unique space that welcomes explorations of all perspectives on death, dying and life through audio stories, workshops and dialogues, and interactive art.

For the second year in a row, our innovative end-of-life exhibit, complete with big white tents, will once again appear outside of the Fletcher Free Library, right in the heart of downtown Burlington from July 14 – 17.  Workshops will be held at the Congregational Church and the library July 12 – 17.

Please join us! We are looking for sponsors and volunteers to help make this event a success. Last year over 230 community members helped our event take place – we would love to have your help this year! Please get in touch with us at programs@wakeuptodyingproject.org

Check back soon – we will post the schedule of workshops, dialogues and events as they are finalized.

by guest writer Michelle Acciavatti 

When you train to be a scientist and work in ethics, as I once did, it becomes second nature to filter your feelings, the thoughts that come straight from your heart, through rational pathways before speaking. This is a way of remaining objective, but it also creates distance between heart and actions. In many ways, it actually closes off the heart—which does not behave rationally—from thought process altogether. I dealt with life intellectually, with ideas, with concepts, with theories, with recommendations, with projections, with prognoses, and with outcomes. I didn’t deal with feelings, with people.

A little over a year ago all that began to change. I was having dinner with a friend who is a birth doula and training to be a birth midwife. She knew that most of my career had involved decision making about ending “life-sustaining medical treatment,” and she knew that I had an interest in death that went beyond medical definitions and ethical resolutions. “You should be a death midwife,” she said to me. “What,” I asked, “is a death midwife?”

It turns out that just as home births and natural birthing are returning to popularity since the 1970s, unmedicalized forms of dying are gaining purchase also. A 2013 study found that more than 75 percent of people don’t want to die in the hospital; they want to die at home, surrounded by loved ones. Not so many decades ago this was just how people died—without hospitals and the modern medical interventions they provide. Without hospice, visiting nurses, nursing homes, or assisted living facilities, dying people were cared for by their own families and communities. Death midwifery is the movement to help people achieve their goal of dying the way they wish. In the simplest terms death midwives support someone throughout the dying process. Their work might involve hands-on care, choosing the right hospice, planning funerals, helping write advanced directive and wills, giving spiritual support, and even providing basic compassionate gestures such as hand-holding. It was exactly what I wanted to be doing.

In 2014, in conjunction with a move to Vermont, I left behind my old career and started intense training to be a death midwife. I enrolled in an accredited program and began reading almost any book, article, and online post I could find about death, dying, grief, hospice, the medicalization of death, end-of-life choice, burial rituals, historical death practices, traditions still practiced by intact ethnic groups, the funeral industry. But all this is intellectual work. For me to be truly ready to work with the dying, I needed to retrain myself at the most basic level—I needed to stop being objective and start dealing with people. And so I started attending my local Death Cafe, and I started working as a hospice volunteer.

As a hospice volunteer your maxim is “meet people where they are.” That means there is no room for objective distance. If we are to offer any meaningful solace to someone who is dying, it requires full-on, from-the-heart engagement with that person in the present moment. It means living, fully and completely, with the reality of death. And it has begun to change me.

I don’t mean that working with the dying has transformed me in any grand way. But it has changed me. Most noticeably I have stopped filtering thoughts from my heart through rationality. I’ve learned to live each day with my heart open, to love, to say I love you, to love the moment, to revel in the sunlight or whatever it is I’m doing, even in the face of death. Like the Buddhist nun who tells her story “Rehearsing Death” in the Wake Up to Dying Project (WUTD) archive, I see what it means to be humble in light of the fact that we die and to therefore direct how we want our days to go, to make the most of this time we have. As the nun says, appreciating that life ends is an invitation to “engage with your reality.” Death is just one event in our lives, so it is important to imbue the other events in our lives with something that gives them purpose. For the nun, that means helping others. For me, it’s giving and receiving love. It is a small thing, but my life is so much richer for it.

The other thing that has changed is my drive to encourage others to learn from becoming acquainted with death—by becoming hospice volunteers or death midwives, or by not being afraid to sit with their own dying friends and loved ones. Working with the dying I see how we become vessels for so many stories, not about death, but about people, how sharing these stories weaves each person into the fabric of family and community, not as someone who died, but as someone who lived. In the WUTD story “Let’s Talk about Other Things” a woman speaks to the importance of being reminded of the living her support community was doing while she cared for her dying partner.In my experience, part of the barrier that prevents people from connecting with the dying is their own aliveness. But for the dying, and their loved ones, knowing that life continues,that their  loved ones will continue living, is invaluable. To live in the face of death, to be with the dying and not give in to fear but rather fill each moment with love, is to me a sacred role.

I wish I could describe how open my heart has become in the year I’ve been working with the actively dying and listening to the stories of people contemplating death and dying. As the woman in the story “Wake Up to Dying” puts it, “I have never been more awake.” By working with those who are actively dying, listening to the stories of people contemplating death and dying, and by thinking about our own death, we may fall in love with the world, open ourselves so we may try and embrace everything. Every day is discovery, every day we can use “every capacity of [our] hearts.”

I find the more open I am the more extraordinary and magical my life becomes. Despite feeling sadness and pain I have a sense of something so much greater than myself—and I am a part of it because I am mortal too. As the storyteller says, “It’s the reward that awaits when we allow ourselves to open to the richness, the richness, of what’s capable when we open to the process of what it means to be with someone at the end of their life.” I hope someday, someone caring for me as I die will experience the same heart opening I have.

Michelle Acciavatti moved to Montpelier, Vermont with her husband and their dog in 2014. She is studying to be a death midwife. She volunteers with dying patients at Central Vermont Home Health and Hospice, and helps facilitate the Montpelier Death Cafe. She writes poetry and listens when spoken to. And she loves.

I’m no stranger to death. One morning when I was in fifth grade, we came into our classroom to find Robert Dooley’s chair empty, a huge white satin ribbon draped over the back of it. Sister explained, “God needed another angel in heaven.” That satin ribbon remained on the empty chair for the entire year, and nothing more was ever said. I went to bed every night begging God not to need any more angels.

The next year, in sixth grade, my good friend Joanne’s dad died. The following year, my other good friend Jane’s dad died. And then my very best friend, since age four, Gail’s father died! In those days back in the ’50s, some wakes were held at home, in living rooms, and went on for several days. My friend Gail’s mom asked me to sleep over one of the nights during her husband’s wake, to be with Gail. In the middle of the night Gail woke me up and asked me to come downstairs with her to see her dad. We were scared but curious creatures who had to touch his cold hand to see if it would move.

I remember these deaths happened around the same time that the song “Oh! My Papa” by Eddie Fisher became a big hit and was played constantly on the radio. It was wrenchingly painful to listen to, when Joanne, Jane, Gail, and I hung out together, as we often did on Friday nights, in someone’s basement listening to the top hits on the radio. I used to lie in bed at night in my bedroom, which was next to my dad’s room, listening to his snoring. He had what we now know to be sleep apnea, but I was unaware of such a condition and thought for sure he would be dead in the morning. You can imagine how happy I was to find him instead in the kitchen cooking bacon!

Eventually, after becoming a nurse and a pastoral counselor, I was led to work in hospice care. I felt very comfortable in this role and loved supporting family members and patients as they moved toward the end of their lives. They taught me more about the transition from life to death than all the books and classes I had taken on the subject. Meanwhile both my husband and I underwent major surgery for cancer and open-heart surgery. We faced the proverbial “brick wall,” put our finances and so forth in order, and thought ourselves – with all our experience – about as ready for death as we could be.

OUR MISSION

think and talk about death & dying

be more prepared – practically & emotionally

g e t   m o r e   o u t   o f  l i f e

 By Guest writer Lee Reilly

 You know the Woody Allen scene. Looking a lot like a bed sheet with a sickle, Death encounters the cowardly Russian Boris Grushenko.

BORIS: “What happens after you die? Is there a heaven? Is there a hell? Are there girls?”

DEATH: “You’re an interesting young man. We’ll meet again.”

BORIS: “Don’t bother.”

DEATH: “Oh, it’s no bother.”

This being a Woody Allen world, Boris spends the rest of his hapless life worrying about life, death, purpose, manhood, and meaning, until Death lives up to his promise.

But in the real world, Boris is an outlier. Realizing that we are going to die can help us focus on how to live well. Take a listen to the stories on The Wake Up to Dying Project’s website, or scan the research, and you’ll see: A life lived consciously, with an awareness of death, is much richer for it.

Richer and more generous. In 2011, a British study demonstrated that people who contemplated their own deaths were more likely to donate blood than the people who contemplated death in a theoretical way, or the people in the control group, who contemplated something unrelated to death (in that case, dental pain).

Richer and more purposeful. Also in 2011, University of Missouri researchers tested the interplay between death awareness and the value placed on life. In three different exercises, they showed that people who thought about death rated life as more valuable, and conversely, people who focused on the high value of life had more thoughts about death than those who focused on the low value of life.

Richer and more connected. After 9/11, researchers discovered that people expressed higher degrees of gratitude, hope, kindness, and leadership. After the Oklahoma City bombing, divorce rates went down in the surrounding counties.

Three Wake up to Dying stories in particular are narratives of living life differently and more fully.

• In Acts of Kindness,a cancer patient talks about his longstanding worry that life had no inherent meaning. After the cancer diagnosis, he finds meaning in generosity.

• In The Point is to Love,a recent widow reflects on how her husband’s death has  changed her focus in life.

• And in I Catch Myself Smiling, a young woman describes sudden moments of joy—a new experience in a life that has seen a lot of death.

Listening, you feel a deep and abiding gratitude—to the people who share these moving stories, and to life itself, for having such wondrous things in it, including love, generosity, and yes, even death.

Meanwhile, someone needs to bring Woody Allen up to speed. Thirty-five years after making Love and Death, he was asked what his relationship with death was like. His answer was predictably, futilely Allenesque. “My relationship with death remains the same,” he said. “I’m strongly against it.”

Maybe he should take a listen, too.

Lee Reilly is a certified nurse assistant (CNA) who works with the elderly. Her writing has appeared in Self, Chicago Tribune, and elsewhere and she’s published two nonfiction books. Early in her career, she tackled important questions for Vegetarian Times, such as, Do cows explode if they’re not milked? (Luckily, they don’t.) You can catch her occasional blog about caregiving at OtherPeoplesParents.org.

Montpelier, Vermont Exhibit

We are pleased to report that our first multi-day exhibit, in Montpelier, Vermont, July 24-26, was a great success! Over 550 people visited some portion of the exhibit – either the Audio Listening Tent, Resource Tent, “Before I Die” chalkboard, or one of the five community discussions. We couldn’t have done any of it without our dedicated volunteer team – over 3o people volunteered their time to welcome visitors, provide resources, and help set up and break down the exhibit.

If you missed the exhibit, or even if you didn’t, check out some of the media attention we received:

Vermont Public Radio: Afraid To Talk About Death? This Exhibit Might Change Your Mind, by Neal Charnoff

Seven Days: The ‘Wake Up to Dying Project’ Brings Death Out of the Closet, by Ken Picard

Mark Johnson Show:  Radio Interview with Nina Thompson, WUTD Executive Director

We want to express a huge thank you to everyone who visited, volunteered, donated, contributed to a discussion, provided materials, or participated in some other way. We are grateful.

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Listening to stories

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