News and Ideas

The Longest Night

by guest writer Leah Carey

It was 3 a.m. and my mother was moaning and thrashing just feet from me. It had been several days since I’d had more than an hour of sleep at a time.After two years of living with cancer, my mother was finally dying.

Sybil CareyWe had pulled the sofa alongside her bed to keep her safe from her latest shenanigans. Despite being mostly unconscious and having lost the last of her physical strength a few days earlier, she would occasionally throw her legs over the side of the bed and stand up, all in one crazy, determined motion. If there hadn’t been someone there to catch her, there’s no telling what might have happened next.

I lay on the couch, keeping guard over my mom—just as she had done, I’m sure, for countless hours of my childhood.

Movies and television shows generally depict death from illness in one way (as opposed to death by murder, which is portrayed with endless, grisly inventiveness by procedural-crime-show writers.) The sick person is lying in bed, weak and without color. They may or may not open their eyes and give a knowing smile or a wise word. Their eyes close and their head falls to the side, the universal cinematic signal that they are dead.

This was an image so ingrained in my head that it hadn’t occurred to me that death from cancer might happen any other way. Unfortunately, my mother did not go peacefully into that good night. Her leave-taking of her physical body involved what looked like a lot of struggle.

Devoid of any frame of reference—or warning from medical professionals that she might exit in a significantly less peaceful way—I was in a state of high distress. She appeared to be suffering, and that was the very last thing in the world that I wanted for her.

So I consulted the one friend who had never failed me when I was seeking important information: Google.

I opened a search page and typed, “How do I help my loved one to die?” I was not looking for information on advanced directives or how to procure hemlock. I wanted to know how I could make this process of transition a calmer, more peaceful one for the woman who had spent my entire life protecting me. For the first time in my memory, Google failed me. It offered up endless hits on living wills and assisted suicide, but nothing on how to make the final hours of my mother’s life as peaceful and comfortable as I wanted them to be. I felt helpless to do anything but watch my mother suffer. This was the longest night of my life.

As my mom’s physical symptoms intensified over the next 24 hours, I grew more frantic, and although we had all wanted Mom to die at home, we decided to transfer her to the hospice room at the hospital. She left us just 12 short hours later.

Sybil Carey on the sand dunesIn the immediate aftermath of my mother’s death, a burning question took hold of me: How do we help our loved ones to die? As days turned into weeks, I became a little obsessed with that question.

Fortunately, I work in a business where a little obsession can be the starting point for a wonderful piece of work. I have dedicated this year to following my question wherever it takes me, and my editors at the Caledonian-Record newspaper have granted me a space to share what I find with readers.

So far I’ve learned that there are people whose life purpose is to play music for our loved ones as they are dying. I’ve learned that there are communities that form care teams to make detailed death plans for their fellow members. I’m learning about the language we use about death and how it affects our experience.

I’m also identifying questions that I wish I’d asked my mom. We’d had all the important conversations about what she didn’t want—feeding tubes and resuscitation efforts. But I hadn’t asked about what she would like—music, silence, prayer? People she wanted with her, perhaps even people she did not want with her in her final moments?

These are all things I wish that I’d known before my mom’s death—perhaps I would have felt less helpless. And if I had felt more secure, perhaps I could have provided a more peaceful and calm environment for Mom to experience her death, no matter how difficult it looked to me.

The Living With Dying newspaper series I am writing can be found online, every other Tuesday. New installments (including online exclusives and audio-video extras) are published for subscribers, and previous installments are made available for non-subscribers. I hope you will visit the series and that you will find tools, resources, and ways of thinking that will bring peace to you during death—whether it is your own or that of someone you love.


Leah is a writer for The Caledonian-Record, a daily newspaper in northern Vermont and New Hampshire. Her mother died in December 2015 after a two-year journey through cancer. Leah was by her side through the entire experience.

We’re Gonna Die – meet Nina after the Boston show

Last night we had the fantastic opportunity to see We’re Gonna Die by Young Jean Lee at the Oberon Theater in Cambridge, MA. What a show! Actress Obehi Janice captivated the audience with her engaging, heartfelt storytelling, and the musical acts were tremendous too.

WUTD Founder and Executive Director Nina Thompson will participate in the post-show chat following the Sunday (4/24) matinee. Along with Dr. Robert Riethmiller of the Massachusetts Institute for Psychoanalysis, Nina will discuss how people might approach difficult conversations through humor and shared experience.

If you can’t attend the chat, here are three stories from our archive that blend humor with the gravity of this shared human experience:

A Knitting Story – A new chaplain tries to find a way to connect with a woman who is dying….and is able to laugh at her approach.

First Call – Another chaplain story – it’s his first night on call and it’s a doozy, and this guy is funny!

Go to the Light – This one gets the audience laughing, and connecting with each other, every time. We won’t tell you more than that…

We’re Gonna Die runs through Friday, April 29. Get your tickets now!

Life to Legacy: Documenting and Celebrating Life in Times of Dying

by guest writer Emma Wade

In the last few months of Harry Lazare’s life, he said to me that people freely gave him more love because it was happening — he was definitely, swiftly dying. And he asked me, a little sarcastically, What if we all treated each other as if we were dying? Would we be more generous toward each other? Would we find more meaning in our living?

Two years earlier, in December 2013, all I had known about Harry was that he was an artist who made wall hangings from found objects. I also knew that he was sick. A friend of his had contacted me to see if I would interview him and create a biographical story, so I called him to introduce myself. I constructed my words maybe too carefully, but at age 22, I had never approached a stranger facing a diagnosed death about an interview. He listened and asked to think about it.

IMG_4545Over the course of six months, I visited Harry and we moved chronologically through his life incrementally. I came with an audio recorder and some prepared questions, but the conversation often took organic turns. At times we would get up and take me to see something or greet his dog. Harry had the gift of gab, so I did a lot of listening. Dying was rarely a somber topic in our interviews. To the contrary, in the spotlight Harry came to it with very high spirits. He enjoyed unearthing his own stories for me and admiring his past. He was excited to share with me too what he was thinking about, objects and ideas that were present for him — everything from jazz music to Buddhism. He found ease in talking about himself, but became animated in his thoughts — living now, being fearless, seeking beauty, and taking the time to see new things.

Listening again to the interview recordings at home, I spent many hours marking, cutting, and building what interested me into narrative. I took notes, selected still images I had taken, and scanned old photos. I combined these visuals with the audio to create a simple film we came to title together Mowing the Lawn: And Other of Life’s Serious Side Effects. The film, broken into three parts, moves chronologically but leaves room for the present to play with his past. I had felt compelled to leave in such things as Harry taking a phone call from his wife or getting up to let his dog out, hoping to invite viewers into Harry’s way of doing things. You can check out the film here.

Throughout this time, Harry had been in and out of chemotherapy and various other treatments for Myelodysplastic Syndrome (MDS), the terminal diagnosis he had received in 2011. By September 2014, when I finished the third video, his illness was in remission — truly a miracle — and in June 2015, he turned 69. Later that summer, however, his MDS returned in full force and in October, he left his body.

Knowing Harry Lazare as he lived the last two years of life gave me an unusual insight into the marvel of an expected dying. He kept himself occupied and amused. He wrote poems and started making assemblage art, an obsession that blossomed to over 150 pieces, and I saw him out and talking in community, especially with kids when he had the energy. He attributed living longer than expected to his creative vitality. Much like his body, his artwork was made of decayed and fallen bits, which he put together to make something whimsical, funny, or primitive. Harry seemed entreated to find beauty in his life and work — in the ugliest of things. This principle left its impression on me and made me think about ways I could do the same in my work.

I did not experience Harry’s day-to-day pain of physical decay and psychological struggle. I was instead a kind of visiting sounding board, handing Harry the mic. And I took what he gave me — memories, opinions, jokes, and at special times profound homilies on being human. I saw there was pain too in Harry’s dying, but in our interactions he clearly chose to separate his pain from the event of his death. Encountering someone who fully lived his ending and was nonchalant about the actual end taught me the lesson that life, not death, is what should matter for the living.

Our friendship was unusual, given the polarity of age and personality; I came to his story young and sensitive in my work, but Harry was not those things. I, being an age when mortality is barely a concept, was amazed to meet someone facing death with little fear. I felt both naive and optimistic that I could do something extraordinary with Harry’s life story, to curate with my own discerning eye and share with his family and friends — to build his Legacy. In turn, Harry and his family encouraged me as I worked, generously giving me suggestions. I was very grateful with their patience and acceptance of me as a presence in such a very intimate time as death. Too, I found pleasure in the reactions and remarks I have received since sharing the film and process of making it. Knowing Harry Lazare changed my work and my appreciation of my own life.


Emma Wade is a performing artist and founder of “Carry On Stories,” a service for families and groups to gift an individual with the collection and celebration of their legacy.

(Are you interested in being a guest writer? E-mail us: programs@wakeuptodyingproject.org)

 

The Mystery of Grief

by guest writer Uma Girish

When my 68-year-old mother was diagnosed with stage 4 breast cancer, not one among the many gods in her Hindu altar reversed her fate. In a short period of eight months, her cancer cells won the battle.

RHLRSCIL3KMy mother’s faith had always been as sturdy as an oak tree. None of the storms that whipped through her life—my father’s alcoholism, his road accident and brain injury, my sister’s broken engagement, and deaths of family members—could shake that faith.

Now, she had become the cosmic target. It seemed like a joke. I imagined her gods chuckling. Let’s see if this one finally breaks her faith. Well, she continued to pray till the very end. Clearly, she had the last laugh.

Through her illness, she woke up every morning and chanted her Sanskrit mantras.

She rang her sacred bell and performed rituals.

She waved incense sticks and decorated her altar with fresh jasmine and marigolds.

Even if she remained calm, and committed to her faith, I was mad that God had turned a deaf ear to her pleas.

This is a common experience, the sense of separation from the Divine that we experience when the foundation of our human lives is shaken up.

Where is God in my grief, we cry out. At a time when we most need to cleave to Spirit, our spirits are broken and we feel abandoned.

And yet, sitting in the roaring fire of grief, we are burned, stripped and laid bare. It is in the purification of our souls that we connect with the Divine all over again.

It takes time, this reunion.

I was angry for a long time. I was empty. I was broken open. But it was through those cracks that pieces of light found their way back into the dark spaces of my heart.

Angry as I was, there was also a deep yearning in me, a desire for divine connection—because nothing in my human experience offered a shred of relief in the landscape of loss.

Trained to seek answers and master life, we are brought to our knees by death.

Death is the unknowable.

Death is the great mystery.

Death cannot be figured out.

It occurred to me that all of this is true of the Divine as well. That glimmer of insight was my moment of awakening.

The love I was held in by those who traveled with me down the rocky road of loss convinced me that God wasn’t too far away. Grace found me in so many ways—a stranger’s smile, a word of warmth, a heartfelt hug. These sacred moments of connection expanded me.

When my mother’s death splintered my ego, my inherent divinity surfaced. It was the unfolding of a sacred embrace. Every one of the gods in my mother’s altar waited patiently, for they knew that one day I would return home.


Uma Girish is a Grief Guide, Certified Life Purpose Coach and Award-Winning Author. She is also the co-founder of the International Grief Council and hosts a podcast The Grammar of Grief.

Read More & Visit Uma at www.umagirish.com

The Death Chicks and Vital Conversations

The Wake Up To Dying Project was recently featured on two webinars: The Death Chicks, and Kim Adams’ “Vital Conversations: Dialogues on Living and Dying Well”

The Death Chicks Weekly YouTube Show

In September Death Chick collaborators Myste Lyn and Patty Burgess spoke with Nina Thompson, Executive Director of the Wake Up To Dying Project. Myste and Patty are “committed to bringing death out of the dark and having real and conscious conversations about death, dying, grief and loss. The Death Chicks are not here to make light of death, but they are committed to making death lighter. Death has gotten a bad rap; it’s something we’ll all face and it’s high time we acknowledged it and started talking about it.”

During their conversations with Nina they discussed the, “…movement underway in our culture to promote conversation about death and dying. The Wake up to Dying Project is thrilled to be a part of such an important movement. They look forward to showcasing national and local initiatives related to death, dying and life in our traveling exhibit tent. Wake up to Dying Project plans to be on the forefront of unifying these efforts.”

Watch other shows about death, dying, grief and loss on the Death Chicks YouTube Channel

Streamed live on Sep 17, 2015

 

Vital Conversations: Dialogues on Living and Dying Well

Kim Adams, certified professional coach and hospice volunteer, hosts a free monthly webinar series, “Vital Conversations: Dialogues on Living and Dying Well“. Kim’s business, Powerful U End of Life Coaching focuses on supporting people to ‘create the roadmap NOW for the final chapter of their life’ with Advance Care Planning. She spoke with Nina in September about the Wake Up To Dying Project.

WCAX News Video on the Traveling Exhibit and Workshops

We were excited to have news anchor Mike McCune from WCAX visit the Wake Up To Dying Project while we were in Burlington, VT.  Mike interviewed Nina Thompson, the Wake Up To Dying Project’s executive director for a short segment that aired on the nightly news:

WCAX.COM Local Vermont News, Weather and Sports- “It’s a topic many don’t want to even think about, much less talk about with someone else: dying. But this weekend, a traveling exhibit has been set up on the front lawn of the Fletcher Free Library in Burlington that aims to change the way we think about death. The Wake Up to Dying Project uses the power of story to explore death, dying and life. Watch the video to hear more from executive director Nina Thompson.”


The next day WCAX returned to film an additional video on our “Creative Exploration of Death and Dying for Kids and Families” workshop held on the lawn of the Fletcher Free Library.

WCAX.COM Local Vermont News, Weather and Sports-

“Death can be a difficult topic to discuss for people of all ages, but for parents with kids, it can be even harder. Saturday in Burlington parents got some extra help through a workshop teaching kids about death and loss.”

Our Burlington Exhibit

What a spectacular event we had in Burlington! We estimate 700 people joined us over the 6 days of activities to think about what death, dying and life mean to them. We shared many stories and ideas and are all better for it.

Kuddos to everyone who made this event a success – the community, volunteers, the panelists, dialogue facilitators and our community partners: The Fletcher Free Library, Aaron J. Goldberg, PLC, UVM Medical Center, Blue Cross and Blue Shield of Vermont, Bayada Hospice, Vermont Funeral Directors Association, and Burlington Health and Rehab. THANK YOU ALL!

  • Volunteers are what make our events sucessful!

Hospice & Palliative Care Council of Vermont Conference

We are thrilled to have been invited to present at the Hospice and Palliative Care Council of Vermont’s 24th annual conference today. The beautiful view of Lake Morey is a wonderful setting for this gathering of caregivers from all over Vermont and New Hampshire.

We’ve done our best to create a sense of the Traveling Exhibit’s story listening tent in a conference room, and will be sharing audio stories with these dedicated caregivers. Attendees who wish to see Nina’s slides can access them here.

 

Call for Volunteers!

Volunteers are what make our events sucessful!The Wake Up to Dying Project is excited to be on the road this fall and we need your help. Our events run on volunteer power! Can you lend a hand to help make this unique experience a success in your community?

We will be in Somerville, MA September 24th – 27th.

Please consider volunteering for a 2-4 hour shift to help with:

  • Help make the exhibit look beautiful and inviting by lending a hand with set-up.
  • Be a Greeter and help people explore the many ideas around death, dying, and life that the exhibit has to offer.
  • Help create a warm and reflective space as a Listening Volunteer in our audio story tent.
  • Guide visitors through the materials provided by local organizations in our resource area.
  • Help us break down the exhibit after the event  and send us on our way to the next town!

IMG_1112Volunteers are needed all day everyday from 8am to 8pm, so regardless of your schedule, you can help! Community based volunteers make this a very special experience for everyone. Our aim is to provide a warm, contemplative space for visitors to feel comfortable to explore, share or simply observe.  Please sign up to join us today.

For more information about our events and to review our workshop and dialogue schedule for your town, click here.

We do hope you plan to attend one of the events as well. Bring a friend or loved one with you to share in this unique experience!

Please email me at delia@wakeuptodyingproject.org if you’d like to volunteer and/or need more specific information on any of the duties.  Looking forward to seeing you on the road!

Best regards,

Delia Gillen – Event Coordinator

Oh Death, Where Is Thy Sting?

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.

2 houses - pictureBut 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.