On the art of dying

By Gary Moore

I’m reading this excellent book by the author Katy Butler entitled “The Art Of Dying Well.”

Put down those phones, no emergency call needed! I’m not going anywhere for awhile. I just want to be prepared.

George Harrison, one of my musical idols also spoke a lot about preparing for death, so when you finally die, you can do so peacefully and transition seamlessly into the next stage of your life. In fact, he wrote a song entitled “The Art of Dying,” which appeared on his first solo album “All Things Must Pass.” In that song, he wrote:

“There’ll come a time when all your hopes are fading

When things that seemed so very plain become an awful pain

Searching for the truth among the lying

And answered when you’ve learned the art of dying”

George’s wife, Olivia, said that when he passed, you didn’t need a candle to light the room. By that, I assume she meant his lighted spirit left his body. Selfishly, I wish George hadn’t left so soon, and I doubt I will encounter him if he returns (because he may not, having died peacefully). But, one never knows.

George’s wife, Olivia, said that when he passed, you didn’t need a candle to light the room. By that, I assume she meant his lighted spirit left his body. Selfishly, I wish George hadn’t left so soon, and I doubt I will encounter him if he returns (because he may not, having died peacefully). But, one never knows.

In the book, Ms. Butler outlines chapter by chapter what elders can do as they reach the end of their life cycle and how to prepare for each stage. She thoughtfully begins each chapter by stating “If you are experiencing…” and lists several conditions, going from mildly annoying to life-threatening, that people our age will experience as they reach the end. It’s done matter of factly, clinically, but with great warmth and compassion, because she then expounds in each chapter on what you should be doing at each particular stage.

One of her suggestions that I found very helpful was transitioning from a general practitioner to a doctor that specializes in elder medicine. In this kind of practice, the doctor asks “What is it that you want to do?” rather then tells you how she or he is going to save you from dying.

Let’s face it: death is a phase we all must go through. There may be a way to delay it, preventative practices you can use to slow it down, but, in the end, it’s the end.

A reader recently responded to one of my articles that discussed death with a quote from the film director and gay rights activist Derek Jarman, who is quoted to have said “I am not afraid of death, but, I am afraid of dying.”

This is because, we know death is coming, but we don’t know how or when it will come. We are unsure of the process by which we transition from life to death and what waits on “the other side.” We have books on faith and religion and spirituality to suggest, in some way, what we might expect, but we don’t know for sure and that uncertainty breeds fear.

On the other hand, another of my heroes, Mark Twain, is quoted as saying “The fear of death follows from the fear of life. A man who lives fully is prepared to die at anytime.”

A story told about St. Francis of Assisi has a man asking everybody in town what they would do if they knew they were going to die tomorrow. Various people offer various versions of tying up loose ends. When the man reaches Francis, Francis is hoeing the garden of the monastery. The man asks Francis what he would do. Francis looks up and around, smiles and replies “I would keep hoeing.”

I doubt that I possess Francis’ courage, strength of faith or ease with mortality. In fact, I might add, this column seems to verify that. Dylan Thomas urges us to “rage / rage / against the dying of the light.”

Katy Butler urges us to accept it and prepare for it as best we can.

I find myself somewhere in the middle. As my younger friend expressed it “I have so much more I have to do.” I think many people in my generation feel that way. Places to go. People to visit. Grandchildren to watch grow. Alas and alack.

But, in conclusion, this quote from Lord Beaverbrook, who was a newspaper tycoon and member of Churchill’s cabinet, struck me:

“This is my final word. It is time for me to become an apprentice once more. I have not settled in which direction. But, somewhere, sometime, soon.”

The idea of becoming an apprentice, of starting over, of beginning a new, different phase of “life” appeals to me. And, maybe, that’s exactly what happens.

Or, to quote Oscar Wilde’s dying words: “Either that wallpaper goes, or I do.”

He did.

Hold those grey heads up!

Complete Article HERE!

The Meaning of Life is That It Ends

How Horror Movies Prepare Us to Talk About Death

by

“Most things will be okay eventually, but not everything will be. Sometimes you’ll put up a good fight and lose. Sometimes you’ll hold on really hard and realize there is no choice but to let go. Acceptance is a small, quiet room.”
–Cheryl Strayed

“That it will never come again makes life so sweet.”Emily Dickinson

There are a lot of uncertainties in life, but the only constant and known fact is that we all die. Despite this collective, inevitable experience that will eventually happen to everyone on the  planet, we tend to avoid this fact altogether. It’s a painful topic, death. A fickle, unfair shadow that situates itself deep in the recesses of our minds; and when brought to the forefront, it usually initiates debilitating emotions and forces actions that the majority of us are not prepared to deal with. Our affairs are not in order; our options for burials are limited and at the mercy of a funeral director; and we are forced to make finite decisions while experiencing agonizing grief. Despite our culture’s adoration for Halloween and horror films, death is still a subject that many prefer to view as an abstract concept. It’s cathartic and safe to embrace the grim reaper within a holiday or cinematic context, but when it comes to our own mortality we recoil at the thought.

Over the past few years, thoughts about burial practices, death preparation, and the acceptance of the horror genre have been progressively evolving. 2018 was the first time that more Americans decided to choose cremation over more expensive burials. Alternative death options are becoming more widely accepted and advanced to not only alleviate the pain for loved ones, but to help reduce damage to the planet while nourishing the growth of new life through one’s passing. Additionally, the horror genre is thriving. Jordan Peele’s Get Out won an Oscar for best original screenplay in 2018; there are continuous remakes of classic genre films like IT and Pet Sematary; and numerous children’s films that lean into the spooky fascination with death such as Goosebumps and most recently Scary Stories to Tell in the Dark are all becoming more mainstream.

In his book Scary Stories to Tell in the Dark, author Alvin Schwartz wrote “don’t you ever laugh as the hearse goes by, for you may be the next to die”, a line that is part of “The Hearse Song”. His trilogy of terror aimed at children was filled with creepy folklore tales and grim illustrations courtesy of artist Stephen Gammell. Straight-forward and blunt, Schwartz was revolutionary in his approach to conveying curiosities revolving around death for those at a young age. Through lore that spanned cultures across the world, he was able to shine light on a dark subject that many parents censor their children from entirely. However, this type of censorship ultimately does not help children. Just like Disney fairytales of a happy ending where the good guy always wins and true love is everlasting, it isn’t reality.

And yet, our society as a whole refuses to address the inevitable truths of life, death, heartbreak, and loss which inadequately and falsely prepare us for the day that we meet these experiences. In the film adaptation of Schwartz’s classic books, there’s a familiar storyline that accompanies haunted locations—the misinterpretation of the past and inflamed legacy of an individual who has passed away. Scary Stories features a character by the name of Sarah Bellows depicted as a sinister spirit who wreaks havoc on a group of friends once her book of self-written stories is stolen. In the end, young protagonist Stella addresses Sarah’s ghost and tells her that she will write her story the way it really was and let everyone know what really happened to her. This is a prime example of reclaiming one’s death (and life) in a manner they choose – a concept that is becoming more commonplace in the funeral industry and is a staple within the Death Positive Movement.

The average American funeral costs $8,000-$10,000, not including the burial and cemetery price tags. Many of the decisions around funeral preparation are made after a loved one dies. As a result, individuals are more easily taken advantage of and choose the most expensive and standard options not knowing for sure what their loved ones preferred to do with their remains, or if there are even alternatives. HBO’s new insightful and tender documentary Alternate Endings: Six New Ways To Die In America aims to introduce viewers to options that may be a better financial, emotional, and environmental fit for their death and the death of their loved ones. The documentary opens with scenes from the National Funeral Directors Association’s (NFDA) annual convention where hundreds gather to display and learn about the latest advancements or trends in the funeral industry. Companies offer the service of decorating personalized caskets, hologram eulogies, and even submerging one’s ashes in the dirt of their native homeland.

The six alternate endings mentioned in the documentary include: a memorial reef burial, living wake, green burial, space burial, “medical aid in dying” (MAID), and a celebration of life. The memorial reef, green, and space burials are all alternate options within the realm of a standard cremation or grave burial. Memorial Reef International builds artificial coral reefs to enhance coral generation, increase marine biomass, and provide eco-friendly alternatives that sustain life for hundreds of years. Another eco-friendly option is the green burial which skips the casket entirely as the body is wrapped in a shroud and placed directly into the earth. This method also bypasses the expensive cost of cement vaults in a standard cemetery which are just meant to keep the grounds even and easier for the landscapers to mow the grass.

As the effects of climate change grow increasingly dire, more and more people seek ways to give their bodies back to the earth to sustain new growth. Water cremation or aquamation is a form of green cremation which does not emit toxic chemicals nor does it contribute to greenhouse gases. Its carbon footprint is one-tenth of what fire-based cremations produce. In an article by National Geographic, it states “American funerals are responsible each year for the felling of 30 million board feet of casket wood (some of which comes from tropical hardwoods), 90,000 tons of steel, 1.6 million tons of concrete for burial vaults, and 800,000 gallons of embalming fluid. Even cremation is an environmental horror story, with the incineration process emitting many a noxious substance, including dioxin, hydrochloric acid, sulfur dioxide, and climate-changing carbon dioxide.” 

The traditional ritualistic aspect of funerals is also evolving. A terminally ill couple in Alternate Endings chooses to have a living wake, a celebration where loved ones and friends are able to say goodbye in person. By embracing their mortality, they’re allowing those close to them to say their final words and experience the appreciation of their life that they may not have realized had they kept their death at a distance. It’s a way to say how much you love someone to their face before you no longer have the chance. Living wakes are performed while the person is still alive and celebrations of life occur after someone has passed. After losing their five-year-old son, two parents in the documentary decide to fulfill their child’s wishes by throwing a party in his honor complete with five bounce houses, painting stations, and an appearance from Batman himself. Even at five, their son realized how sad funerals can be and facing his own death, he specifically requested he not have one. 

Now, if someone as young as five years old can embrace their mortality and make a decision about his passing, then why is it so hard for adults? There’s a stigma around death and it is easier to just ignore it as long as possible, but in the end, doing so can be detrimental. In fact, thinking about death can be a positive and productive practice. Mortician Caitlin Doughty understands this and set out to change the way we view death by creating the Death Positive Movement through her work with The Order of the Good Death. “The Order is about making death a part of your life. Staring down your death fears—whether it be your own death, the death of those you love, the pain of dying, the afterlife (or lack thereof), grief, corpses, bodily decomposition, or all of the above. Accepting that death itself is natural, but the death anxiety of modern culture is not.” This is achieved through various resources and advocacy. The name may sound like a cult, but I assure you it’s not.

In her book, Smoke Gets in Your Eyes, she describes her idea of a “good death” as being prepared to die, with affairs in order, the good and bad messages delivered, dying while the mind is sharp, and dying without large amounts of suffering and pain. It means accepting death as inevitable as opposed to fighting it when the time comes. Therefore, she has collaborated with an array of funeral industry professionals, academics, and artists to provide the best resources possible including information on end of life planning, green burial technology, as well as methods on how to alter our innate fear of death that has only been enhanced through recent (and unfortunately perpetual) devastating events in the news. 

While the horror genre provides viewers the chance to vicariously experience our fear of death in a safe, dissociative capacity, there are now more resources and options than ever before to help us face the inevitable. Instead of solely harnessing terror and sadness, there are ways to find beauty and inspiration in death. As Kafka said, “The meaning of life is that it ends.” Welcoming our mortality allows us to cherish people more because we don’t know how much time we’ll have with them. It is the driving force behind learning, loving, creating, and achieving what we want out of life. While death can be its own scary story, at least there’s comfort in knowing that it is something we will all face one day and there is some control you can have over the process as well as one’s legacy. And when that fateful day comes, let it be the good death you’d want for yourself and those you love, with plenty of peace and the least amount of pain and regret as possible.

Complete Article HERE!

Who Will Wear My Dead Husband’s Clothes?

It took me a long time to find a new home for the belongings he left behind.

By

My husband and I shared a narrow, shoebox-shaped closet in our home here, his clothes facing mine from double-hanging wardrobes mounted on the walls. After he died of pancreatic cancer on Nov. 1, 2017, a month after his diagnosis, I’d often wander into the closet to search for his smell on his shirts. My mother caught me one day sniffing his shirts and crying, and said, “You can’t keep doing this forever.”

“What should I do?” I asked.

“You need to find the right people to give his clothes to,” she replied.

I packed his shirts, slacks, shoes, belts and ties into the gunpowder-gray suitcases we’d bought for our trip through western Ireland years earlier. That same day, a Federal District Court judge in San Francisco ordered the Trump administration to keep on renewing the permits that gave young undocumented immigrants permission to temporarily live and work in the United States, as prescribed by the Obama-era program known as Deferred Action for Childhood Arrivals, or DACA.

I noted the events in my journal in short, unemotional sentences: “Cleaned closet, packed Mike’s stuff away;” “Good news of the day: DACA still alive.”

I parked the suitcases in a corner of my garage, where they stayed for 16 months, gathering dust as the president made a mess out of the country’s already messy immigration system.

In these months, my daughter’s nanny, a naturalized citizen, lost her brother in Mexico, where he had been deported last year after living illegally for 26 years in Phoenix. (His wife and three children still live here.) The nanny said that he’d died of a broken heart.

Also in these months, accounts of Central Americans released from immigration detention and dumped at the Greyhound bus station in town began showing up in my news feeds, followed by reports about Central Americans lost in the punishing desert that straddles the Arizona-Mexico border, or about children falling ill and dying in overcrowded Border Patrol stations.

I had written articles of my own about the conditions inside these stations during my stint as Phoenix bureau chief for The Times. I’d also written a report in 2014 from inside a makeshift shelter that the Border Patrol had set up for migrant children in the border city of Nogales, Ariz. Then, as now, despair had led thousands of people to leave their home countries in search of what so many of us in America take for granted: the right to live without fear of being kidnapped, tortured, killed.

What I saw at that shelter stayed with me. The children sleeping shoulder-to-shoulder on the floor, in dirty clothes, under blankets that looked like sheets of aluminum foil. These memories, and the new crop of migrant stories on my news feeds, only added to the grief of losing my husband at the relatively young age of 44 — and to the anguish of raising our daughter alone and far away from my family, in a country that is legally my own but that has made it tough for me at times to feel that this is the country where I belong.

My husband was a proud American, the son of a nurse and a gas-meter reader born and bred in a blue-collar mill town in Central Massachusetts, where, like him, almost everyone was white. He was curious enough about the world to marry me, an immigrant from Brazil. When our daughter was born, he spoke proudly about the jumble of heritages coursing through her veins — Scots-Irish and French Canadian from his side, and indigenous, Portuguese and African from mine. I sometimes called her “a mutt.” He called her “the perfect American.”

He was an optimist and in the days right after Mr. Trump’s election, he kept his glass-half-full attitude, telling me that the unorthodox president-elect might be just what was needed to get things going in Washington. But that didn’t last long. I remember the glum expression on his face as he checked the new president’s Twitter feed while silently sipping his coffee. I urged him to find another morning routine, to check out of social media for a while.

He told me, “I wished Trump knew the immigrants we know, all these good, honest people.”

One morning this spring, I logged onto his email for only the second time since his death. I typed my name in the search field, watched the results populate the screen and scrolled through the messages, contemplating the simplicity of our life, the tenderness of his words, the intimacy we shared, all of it contained in subject lines: “cool summer camp ideas,” “add to nanny to-do list,” “miss you while you’re away.”

One such line caught my eye — “The toll it’s taken,” it read. The message, dated Nov. 16, 2016, was in the drafts folder. I clicked it open.

I haven’t been sleeping well since last Tuesday. I’m really upset about the election. Was in denial there for a few days and tried to put a good face on it. But I just need to express how angry, frightened and disgusted I am. You know me — I don’t like to emote — but I am really crushed by this. So deeply disappointed in my country and in many people that I know.
I’m sorry. I love you.

Just that week, I had received a text message from a friend, asking if I might be willing to volunteer as a Spanish-English interpreter when the next group of Central American migrants seeking asylum arrived at her church. The church is one of dozens to have banded together to offer a safety net of sorts for these migrants, giving them basic health checks, some toiletries and clothes, and making travel arrangements so that they can reunite with relatives already settled in the United States. I was on the fence about it, in part because I was afraid to face the migrants’ sadness.

I found the courage I needed in my husband’s unsent message to me.

By then, the migrants at the church had come and gone. But I knew that another group would be around soon.

The next day, I got a text from my friend: “It looks like 11 a.m. Please don’t tell anyone.”

I put the suitcases in my car and waited for instructions.

“When you get here, ask for me directly,” she wrote.

I drove south and west from my house. On the way, I listened to Bruce Springsteen’s “The River,” the album that my husband played for me on our first date. I cried. I talked to him.

I got off in a part of the city full of warehouses and big, empty lots. I walked into the church. Just as my mother suggested, I had found the right people to give his clothes to.

Complete Article HERE!

As her grandparents’ love was tested by dementia, a photographer focused on their bond

“When the nurses told Else that Poul could die soon, she stayed with him all the time at the nursing home, sleeping on a mattress next to his bed,” said Sofie Mathiassen, the recipient of this year’s Bob and Diane Fund grant.

By Olivier Laurent

Sofie Mathiassen’s grandparents — Poul and Else — always kept a journal, jotting down in a sentence or two — sometimes more — the small joys of each of their days together. Eight years ago, Poul was diagnosed with dementia and Parkinson’s disease, and, for the past four years, their granddaughter has been photographing their daily lives in Denmark, creating a record of Poul’s last moments on earth.

The work has won the Bob and Diane Fund grant, a cash prize dedicated to raising awareness through photography of the medical crisis around Alzheimer’s and dementia.

“I have always been very close with my grandparents and spent a lot of time with them throughout my childhood,” Mathiassen said. “So, when my grandfather began to get sicker I started photographing him. I wanted to keep him as I knew him, and I could see him fading away from me and from my grandmother and the rest of the family.”

Poul, 82, at the dinner table with his wife, Else.
Else, 83, at the dinner table with her husband, Poul.

Mathiassen’s photos show the bond between Poul and Else as one’s dementia becomes overwhelming and the other works to hold onto what’s slowly disappearing.

“Their story is just one example of what many families are going through,” Mathiassen said. “I hope that people see the love before they see the disease.”

“Photographing your family takes a certain risk and vulnerability,” said Getty Images photographer Chip Somodevilla, one of this year’s judges. “And Sofie has shared her world with us in an intimate and beautiful way. Denmark may have a sophisticated welfare system — but dementia still has the same impact.”

Mathiassen will receive $5,000 to publish her images in a photo book in 2020, said Gina Martin, the fund’s founder and executive director, said.

Poul and Else Mathiassen in their house in Skanderborg, Denmark.
Dinnertime at Poul’s nursing home.
A mural at Poul’s nursing home.
One week after Poul died, Else celebrated her 84th birthday. She lives alone in their house and plans to stay there.

Complete Article HERE!

How Jewish Rituals Helped Me Mourn My Miscarriage

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I had a miscarriage this summer — and it broke me in more ways than I could have imagined. At my nine-week appointment, I discovered, to my complete surprise, that I was experiencing a “missed abortion” – a pregnancy loss in which I’d had no miscarriage symptoms whatsoever. Not only did I have to make medical decisions while in shock, but I also struggled intensely to make sense of what I was feeling emotionally and spiritually.

With help, I recognized that I was deep in the throes of grief. Jewish tradition provides an incredible structure for mourners to grieve the death of a loved one. Yet nothing is prescribed for my miscarriage grief. When grieving, it can be harder to make any decision, large or small. I craved a prescription for what to do; that might have left me with fewer heart-wrenching decisions.

Nonetheless, I found healing and comfort in adapting Jewish rituals and traditions.

In honor of October being Pregnancy and Infant Loss Awareness Month, here are some of the lessons I learned:

  1. Jewish tradition teaches that we are not obligated to mourn a miscarriage or even the death of a baby who lives less than 30 days. In fact, we are taught that up through 40 days after conception (this would be just under 8 weeks pregnant in today’s terms, since counting begins at the woman’s last period, not at conception), the embryo is considered to be merely water (Yevamot 69b). This does not describe the emotional reality of many pregnant women or couples. Even in those early weeks, the connection to the embryo can be incredibly deep. And yet I recognize that mourning a miscarriage is not the same as mourning the death of a child or an adult. I didn’t lose a baby that I’d held. I didn’t even lose a fetus. I lost an embryo (the transition from embryo to fetus happens in the 11th week), but that embryo was supposed to make me a mother. That embryo was supposed to grow into a fetus. I would have delivered a baby, named and held my child. That embryo had a due date. I had a timeframe sketched out already for when I would start looking at daycare options.
  2. The specific grief of a miscarriage is different but still very real. In order to cope with my grief, I needed to mourn. The ancient rabbis likely believed that having a prescribed set of mourning rituals for a miscarriage may have been a burden, since families could experience multiple miscarriages.
    Today, too, families may experience one or more miscarriages. While miscarriage rates may or may not have changed since rabbinic times, many things have changed: birth control has led to less pregnancies; at-home pregnancy tests help women find out that they are pregnant much earlier than even several decades ago; because of ultrasound technology, pregnancies feel much more “real” when a future parent sees an embryo or a flickering heartbeat at a fairly early stage. All of this leads to pregnant people (and their partners, if applicable) who are more likely to experience grief when losing a pregnancy. The Perinatal Grief Scale was developed in 1988 to help clinicians diagnose and care for their patients’ grief. What if certain rituals of mourning were opportunities to grieve, instead of a potentially weighty obligation placed on the family? Michael I. Norton and Francesca Gino, faculty at Harvard Business School, conducted experiments to measure the impact of mourning rituals. They determined that rituals are incredibly effective in reducing grief because they allow mourners to regain a sense of control, at a time when it feels like they have lost any semblance of control of their world. For me, rituals like burial and mikveh also helped me find a sense of validity in my grief. I needed concrete physical acts that also stemmed from Jewish tradition to help me recognize that my loss was real and mattered, both in my own eyes, and perhaps more importantly, in the eyes of Jewish tradition.
  3. Rituals may be traditionally absent, but Jewish rituals, modified from other contexts, are emerging. Not everyone marks time and life cycle through Jewish liturgy and ritual, but I do. Each person will find what is meaningful for them in coping with a miscarriage. In the first few days, I felt compelled to have a way to externalize my pain. 

When an immediate relative dies, the mourner tears their clothes or wears a kriyah ribbon. I chose to let my nail polish chip away naturally over the coming weeks instead of taking it off my fingernails once it started to chip. I looked unkempt and that felt appropriate. People should know that something was awry. I whispered kaddish once while tears streamed down my face – it felt both rebellious and cathartic. I realized that I needed a burial of sorts, echoing how we address a loved one who has died. 

With the help of Sinai Memorial Chapel, I arranged to bury my embryo, unmarked, near newly planted trees in a cemetery. I chose not to be present for it, but it was comforting to know that it was returned to the earth. I also visited the site a few weeks later with a friend and buried a piece of paper on which I’d written my due date, and some other dates that would no longer be shared with this baby – I had envisioned a baby costume for this Purim, and had imagined that this Passover would be my first as a parent. None of this was halachically prescribed or encouraged but these acts helped me say goodbye.

 

Some new Jewish rituals for mourning a miscarriage suggest planting a sapling. But for me, this didn’t seem fitting. A sapling would grow into a larger plant, but my baby-that-should-have-been was never going to grow. While I yearned to one day be able to grow a different pregnancy, that wasn’t what I wanted out of this ritual. I needed a ritual that was solely about loss before I could begin to think about new life again.
  4. The cultural norm is to keep the pregnancy quiet through the first semester — but that’s not always helpful. Miscarriages are common, but it feels incredibly lonely.* The Jewish community has a superstitious relationship to the evil eye: if you tell others about your blessing (of pregnancy), the evil eye might overhear and change your luck. Soon after the first trimester, you start to show, and the secret is out, so the concern about the evil eye lessens a bit then. When I miscarried, only a small group of people knew about my pregnancy. How could my tight-knit Jewish community support me through this trauma when only a handful of people knew that I was pregnant? We have been trained to not publicly reveal pregnancies until we are past the first trimester, and yet that first trimester is when 75-80% of miscarriages occur. And they happen more than we realize. 20-30% of pregnancies end in a miscarriage, and the statistics only increase as women continue to have children into their late 30s, 40s, and beyond.   One the one hand, the more people you tell about your pregnancy, the more people you feel like you need to ‘un-tell’ should you, God forbid, miscarry. On the other hand, those people are the ones who can hold you – feed you, check in on you, and let you fall apart with them. 

When I did tell people who didn’t know that I had been pregnant, I had to tell them three secrets at once: (a) I decided to try to become a parent (b) I had been elated that I got pregnant (c) I am now crushed because I had a miscarriage and now I need you to be gentle with me. Sharing pregnancy news – whether about a new pregnancy or a pregnancy loss – is an incredibly vulnerable act. Don’t be too afraid of letting people know before you cross the first-trimester finish line, if those people would not only celebrate with you but also support you through your fears or even a loss. Let’s change the stigma around revealing a pregnancy while it is still uncertain. The uncertainty doesn’t go away entirely until you hold a baby in your arms.
  5. A miscarriage is related to, but not identical to, infertility. Trying to get pregnant again may feel intensely different than before. 
For weeks, I couldn’t shake the feeling that I’d done something to cause this, even though I was reassured again and again that running too much or taking a redeye or that sip of coffee would not cause me to miscarry. 
People told me that it was a good sign that I was able to get pregnant. While there might be medical truth to that, as much as I wanted reassurance that I would eventually, God willing, be able to carry a pregnancy to term, I need to mourn this particular loss – this particular baby-to-be that I carried and would never become a baby that I could hold in my arms. I went to the mikveh before I tried again, so that I could acknowledge that my body, which was supposed to create life, had in fact held a sort of death. I needed to immerse and wash that away in order to be ready for new life again.
  6. A miscarriage is not (always) the same as being sick. 
My mental and spiritual health were compromised, but thankfully, in my particular situation, I was never worried about my physical well-being. This may not be true for other women, but I did not want to benschgomel (a call-and-response moment during an aliyah to the Torah, often said when you survive a potentially life-threatening experience) both because of this gratitude for my health throughout and because I was not sure that I wanted to acknowledge my miscarriage quite so publicly. 

I associate gomel with surviving in the face of fear, but I had not been afraid. Instead, I had been devastatingly sad.
  7. When in shock and grief, decisions are exponentially harder. Prescribed rituals or other things to do or not to do can help you move through that. 
When an immediate family member dies, Jewish tradition prescribes very specific and concrete changes in order to grieve the life lost. 

I have been working on compiling resources for rabbinic colleagues to help their communities mourn miscarriages, perinatal losses, and neonatal deaths, but there isn’t a definitive set of do’s and don’ts. In the midst of what can be a deeply chaotic and heart-wrenching experience, rabbis can help by developing a concrete set of ways to mourn. Had I been steered toward taking several days to fully grieve in a way that parallels shiva, I believe that I would have healed more easily.

Grieving my pregnancy loss was incredibly challenging. And yet, a foundation in traditional Jewish mourning rituals eventually helped me find ways to adapt them that felt honest and appropriate for miscarriage. As I moved through each day, I also found myself experiencing deep, profound gratitude for the people in my life who showed up for me over and over again.

May we find ways to cushion the pain of pregnancy losses with community, ritual, and tradition.

Complete Article HERE!

End-of-life doulas and ‘death cafes’ are changing the conversation around dying

End-of-life doula Nathalie Bonafé leads a death cafe on the last Tuesday of every month at Koffee? in New Haven.

By Cara McDonough

The term “death doula,” which a lot of people use when describing Nathalie Bonafé, makes her job sound edgy. But the proper name for what Bonafé and her company A Gentler Parting do is “end-of-life doula.” And while the job does involve helping individuals and their caregivers face the existential mysteries of the great unknown, end-of-life doulas spend a lot of time facilitating the practical duties that surround the event.

These doulas — who, like birth doulas, are focused on ushering individuals from one phase of life to the next — aren’t as common as the hospice and palliative care workers we associate with end-of-life care. However, they hope their work, approaching death with compassion but also a pragmatic business sensibility, will become more mainstream.

In fact, Bonafé and her colleagues refer to what they do as “a movement.” In addition to their primary responsibilities, they also conduct free workshops, seminars and discussions known as “Death Cafes” to get people talking about death more often, making it a less taboo topic.

Bonafé, previously a molecular biologist, was trained at the New York City-based International Doulagivers Institute. While end-of-life doulas do not provide medical care, she and other doulas offer a wide range of services: Bonafé can help a client do anything from write a living will to downsize his or her home. After a client has passed, she can help create “legacy projects” and facilitates grief management. Rates vary greatly from client to client, she says (most end-of-life doulas seem to average several hundred dollars for typical services).

While the actual client might be the individual facing death, an end-of-life doula can prove invaluable to that person’s family, health care team and legal counsel, too, Bonafé says. The doula serves as an unaffiliated advocate during an “emotionally charged” period, she says, providing crucial support and planning.

Ingrid Harrison of Affordable Personal Services & Pet Care is a former veterinary technician and New Haven County-based end-of-life doula who specializes in keeping clients with their pets.

“I have seen firsthand with my clients, family members and friends that if there is no plan when you become debilitated or pass away, it can have a disastrous outcome,” she says. “Having an end-of-life doula makes for the peaceful passing that everyone deserves.”

As for the Death Cafes? Again, sounds edgy, although the concept is anything but. Bonafé holds them on the last Tuesday of every month at New Haven-based coffee shop Koffee?, describing the gathering in flyers as “a safe, respectful space where we can share our beliefs, curiosity, fears, and stories — and maybe gain a little insight into our mortality.”


End-of-life doula Nathalie Bonafe helps families and individuals deal with the death process, from grief management and emotional support to document organization.

There are usually about 10 participants at each meeting, of different ages and from diverse cultural backgrounds, ethnicities and religious beliefs, she says. One young man joined a recent group after he’d finished a date at the coffee shop because he had recently attended his first funeral and wanted to share thoughts.

People hear about the events through word of mouth, social media or the official Death Cafe website deathcafe.com, which includes events all over the world; there are over 8,800 Death Cafes held in 65 countries, according to the site.

“People leave the meetings with big smiles and a heart full of joy to have been able to share their stories,” Bonafé says. “As the moderator, I ensure that the space is a place of respect and lack of judgment.”

Dawn Whelan operates My Last Gift in Staffordville. Her services, in addition to many like those provided by fellow end-of-life doulas, also include destroying paperwork “not intended for public view” after a client has died.

She says that death is the “one thing we all have in common” and is honored to serve her clients and the community through her work and the free monthly webinar she’s created — DASH — allowing individuals to discuss death openly on a regular basis.

Whether at “cafes” or online, discussing death can help dissuade fearfulness, says Sharon McCullough, an end-of-life doula based in Southington. Her company, Sharon Cares, also offers free discussions on death at a local wellness center.

“People live as if they will recover from all diseases and incidents and are angered by anyone who even starts to talk about the idea that treatment is not curative. This leaves many families stricken with anger when a loved one dies,” she says. “As a doula, I am able to be a witness and support through the struggles of this very natural part of life.”

Dr. Kathleen Leinhardt, a physician who treated one of Bonafé’s clients, saw firsthand how the emotional and logistical support offered — providing food, music and companionship, while also helping organizing home health care and hospice services — changed her patient’s experience. “Nathalie truly took on the role of a surrogate daughter,” she says. “End-of-life doulas can be an invaluable help to those who lack family or whose family lives far away. More than that, though, they can serve as a guide to both patient and family through the emotional and logistical process of dying.”


Nathalie Bonafé shares what she’s learned as an end-of-life doula.

Everyone has a story.
When I spend time with people toward the end of their lives, I am always amazed by the stories they share with me: what/who really mattered to them, where they grew up, their relationships, places they called home, visited, loved, their daily activities, their passions, their beliefs. I find that many express their grace and humanity alongside their vulnerability.

Everyone wants validation.
People want to be seen, heard and understood. No matter what religion, beliefs, education, socio-economic status, mental or physical abilities people have, everyone I encounter is receptive to a smile, compliments or being listened to. People at the end of life want to be witnessed and remembered as the young and strong and able people they used to be. They also want to be remembered as loved, decent, loving human beings, without judgment.

People tend to die the same way they chose to live.
People have a lot more control over the way they die than one can imagine. For instance, a very private person will prefer to spend the very last instants alone or in the arms of a very trusted person; a person who was a natural caregiver will die making sure that the most sensitive/fragile people in their lives are sheltered from shock and pain. Likewise, those who understand the benefits of planning a little, and learn the notion of “letting go” during their lives, tend to find acceptance and inner peace more easily than most.

Listening is more powerful than speaking.
Compassion, understanding, forgiveness and love can be expressed very simply. Similar to the way a frightened child will find incredible comfort and reassurance in your open arms, people in grief, whether facing their own mortality or that of a loved one, want a safe, intimate space to shroud their pain and fears. Learning to build and offer such a space to others in need of such reassurance has been one of the most sacred, humbling and profound discoveries of my life.

It’s worth living to learn.
Life is hard. Every day, we get disappointed, we either feel hurt, or we hurt, we misunderstand, we get angry, we win sometimes, yet we fail a lot more often than we win. Still, we learn throughout it all. Think about it this way: since it is scientifically proven that novel experiences give us a rush of dopamine, the “feel good” neurotransmitter, we can turn the pain and changes in life into growth and love and more rushes of dopamine. Intense moments of joy and excitement are rare. Pay attention and enjoy them; they are precious.

Complete Article HERE!

We’re looking at death all wrong. Here’s why.

Can a shift in the way we treat death and dying improve our lives while we’re still here?

A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death

  • These days, for the most part, the concept of death is consumed by health care and medicine.
  • However, as humans we need to view death as more than just a medical event. It takes into account our psychology, spirituality, philosophy, social worlds, and personal lives.
  • This reconsideration should also apply to the way we treat people who are dying. Life is in the senses, not just our physical capabilities.

BJ Miller: Health care, medicine in our country is a giant, colossal thing. And it’s got a ton of momentum. And medicine has become– the domain of death is more or less ruled these days by health care. In times past, it’s been the church, or the family was the sort of center of all this.

These days, it’s mostly medicine. But what’s really important in all this is that we people, we humans, we patients, loved ones, we need to kind of take back the subject on some level– that dying is not just a medical event. It’s way bigger than that. It is all-encompassing. It’s where everything comes to account– our psychology, our philosophy, our spirituality, our social world, our intrapersonal lives– all of it. The medical piece is a little itty bitty piece. It just gets too much attention.

So I’ll just think about the emotions for a second. For one thing, to remind ourselves– for me, the difference between emotion and a thought is you can control your thoughts. You can’t really control your emotions. Emotions are much more slippery. They’re going to have their way with you. So you ignore them at your own peril.

That’s one thing to get across. But I also say that to let us off the hook. The way you’re feeling, on some level, isn’t your fault. And one of the things I see that happens a lot around this subject– again, we’ve talked about how one can be made to feel ashamed to be sick, ashamed to be dying, like we’re failing, somehow.

I want to make sure that we all understand, there are certain things that are way beyond our control. And that means– that may be hard to swallow, but it also means we’re off the hook. It’s not my fault, the way I feel. I shouldn’t have to hate myself or be embarrassed about it. So let’s set some ground rules.

And there’s this other layer that is particularly vexing, which is how others start treating you. And it’s very common, under the banner of sanctity or wanting to protect someone, to– I watch people, they stop telling jokes. Maybe they think it’s sort of sacrilegious to try to be funny around someone who’s sick. Or maybe they don’t talk about their own joys that they happen to have in their day while their colleague is meanwhile miserable with a fever or something. They don’t feel like they should talk about their own joys. Or I don’t know, whatever it is– pick anything.

But one of the things that ends up happening is we end up accidentally making life even harder for each other by keeping the truth of the situation at bay. All right? So these are the ways we die before we have to die. We die before we have to die because no one tells jokes to us anymore because they don’t think we’re going to want to laugh, or that sounds perverse.

Or maybe our partner stops the intimacy. Physical intimacy might dry up, or sexuality. The idea that a disabled person can be sexual, that’s still a novel concept. Just look at most exam rooms in a doctor’s office or in a hospital. Most of them are not even wheelchair-accessible.

My mother uses a wheelchair. They used to just assume she wasn’t having sex, so they wouldn’t offer her a pap smear.
And so one of the things you want to avoid if you plan for your death is you want to– ideally, we come to our death without piles and piles of regret. So when I’m working with patients, especially upstream of their death, I’m always encouraging them to feel things, enjoy the body they have while they have it, appreciate their body while they have it, because it’s someday going to go, and you’re going to miss it.

So touch is just profound. It’s elemental. It is, even if you think about, I think, the scourge of dementia, for example– and a lot of us are terrified of this eventuality. We’re going to lose our minds. Yeah. And it’s hard. And that is a very difficult prospect. And I’m also pretty convinced that there’s a life on the far side of our intellect.

And for me, that life is in the senses. As long as I can feel something, I’m interested in being alive. I’m even more interested in that than a thought.

Complete Article HERE!