Category: Cultural Expressions

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End-of-life doulas:

The professionals who guide dying people

Christy Marek is a certified end-of-life doula: she accompanies dying people and their families.

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Doulas are tasked with maintaining a sense of calm for dying people and those around them, and opening the conversation about death and loss, topics that can often be taboo

In October of 2016, Gregory Gelhorn ran the Twin Cities Marathon. Seven months later, he was diagnosed with ALS, a progressive neurodegenerative disease that causes nerve cells to break down, resulting in muscle weakness and atrophy. The average life expectancy of an ALS patient, once diagnosed, ranges from about two to five years. The cause of ALS is not fully understood, and no cure is known. Gelhorn was in his mid-40s.

“It was a shock,” said Kathy Fessler, Gelhorn’s sister. “He was always the one who took the best care of himself.”

Dying from ALS is a singularly awful experience; the disease causes the body to progressively deteriorate while the mind remains clear and lucid. Gelhorn had loved being active. He had played three sports in high school, coached girls’ basketball and served as a travel director at Lakeville North high school in Lakeville, Minnesota. The disease progressed rapidly; soon, he was using a wheelchair and relied on a BiPAP machine to breathe. Doctors estimated he only had a few months left. Gelhorn and his family – his two teenage children, wife, parents, and siblings – began to grieve.

In the midst of it all, Fessler happened to see an article in the Star Tribune about Christy Marek, a certified end-of-life doula who lived only a few miles away. Fessler contacted Marek, who soon took on Gelhorn as a patient.

A doula, typically, is a professional who helps mothers during pregnancy and childbirth. Unlike midwives, doulas do not serve in a medical capacity; rather, their primary role is to provide emotional, physical and psychological support.

The practice originated in the natural childbirth movement in the US in the 1970s, alongside the Lamaze method and the popularity of alternatives to hospital birth, like water birth and home birth. That same generation of Americans who were having children in the 70s are now approaching their twilight years, and the practice of serving as a doula has expanded in scope. End-of-life doulas use the same concept as birth doulas: they provide support for the dying.

“On all sorts of levels, I think the Baby Boomers, that generation has just been here to shake things up,” said Marek. “The natural birthing movement, they did that. And now it’s the same thing. They’re saying, no, I don’t want the death my parents had. We are rich in possibility, why can’t I make this whatever I want it to be?”

End-of-life doulas are sometimes called death doulas, though many have reservations about the term.

“To me, end-of-life is a process,” said Marek. “The work I do with people isn’t just about that one point in time when somebody dies.”

Although doulas are not required to have medical training, many come from the healthcare field. Shelby Kirillin, an end-of-life doula based in Richmond, Virginia, has also been a neurointensive trauma nurse for over 20 years. It was her experiences in the neuro-ICU that led her towards becoming a doula. Many of the deaths she had seen there, she explained, struck her as cold, sterile and lonely.

“I just couldn’t imagine that the person dying had ever envisioned their death to be like that,” she said. “Dying isn’t just medical. It’s spiritual.”

Fascinated by the idea of a structured approach to end-of-life care that prioritized the individual wishes of the dying, Kirillin enrolled in a doula training course with the International End of Life Doula Association (Inelda), a not-for-profit that promotes the approach. Although there is no centralized regulatory body for doulas, training and certification programs are offered by a number of organizations, including Inelda and the Larner College of Medicine at the University of Vermont.
“There’s so much fear and anxiety about death,” said Janie Rakow, the president of Inelda. “The doulas are there to calm everyone down. They work with the dying and their families to educate, to explain what’s happening. That what they’re seeing is part of the dying process.”

Rakow and her business partner, hospice social worker Henry Fersko-Weiss, founded Inelda in 2015 to train doulas and promote their use in hospices, hospitals, prisons and homeless shelters. Their training program covers topics like vigil planning, active listening and doula self-care.

Part of what doulas do is open the conversation about death and loss, topics that can often be taboo or deeply uncomfortable for the dying or their family.

“Can you imagine if a woman was going through labor and no one around her was talking about it or preparing for it? There’d be an uproar if we treated birth like we treat death,” said Kirillin. “You have to talk about it. You’re dying and you’re no longer going to be here.”

Doulas help their patients plan out their deaths: talking with them about their wishes, and how they would like to spend their last day. Some prefer to die in a hospital, others at home. They decide who they want around them, whether it’s with all their family and friends, or a religious figure, or alone. They choose the details of the setting, whether they want to hear music, whether they want to have someone hold their hand, and what rituals – religious or secular – they want performed.

Doulas often also perform legacy work, the practice of guiding the dying to create tangible artifacts to leave behind for their loved ones. Sometimes, it’s a photo album, a collection of recipes, or a video archive. One of Rakow’s patients wrote a series of letters to her pregnant daughter’s unborn child, expressing her hopes and wishes for a granddaughter she knew she would never meet.

As death approaches, doulas are tasked with maintaining a sense of calm for dying people and those around them.

“One of my patients this past spring, as he was transitioning, he started to vomit,” said Kirillin. “I reminded everyone that when a woman is laboring a birth, sometimes she vomits. It’s the body’s natural way. Let’s just make him comfortable.”

Finally, the last part of a doula’s work comes a few weeks afterwards, when the doula meets with the deceased’s loved ones to reprocess and discuss everything that has occurred.

“It’s after the casserole brigade has come and gone, and everyone’s gone back to work,” Kirillin said. “We talk about grief and bereavement. You’re not going crazy. You can be happy and sad in the same moment. There is no timeline.”

Of course, the practice of guiding the dying on their final journey is not new. Death is not an unknown phenomenon, and the act of tending to the dying has existed as long as human civilization itself. Marek has a theory for why the need for a formalized approach to death has manifested now, in these particular circumstances – why the dying feel the need to contract a trained professional, rather than being able to rely on a more organic source of support.

“In America, a few generations ago, our communities were doing this work,” she said. “The reason the role is showing up in a formalized way now is that we don’t have those community ties any more, not in the same way, and certainly not the same level of responsibility to each other as used to be woven into our communities.”

Kirillin agreed: “I would love for our culture to never need me,” she said.

Much of doula work is the very definition of emotional labor, and though Janie Rakow suspects some doulas feel conflicted about taking money for their services, she sees the profession as no different from that of therapists or hospice workers.

“I had one of my patients tell me I wasn’t charging them enough,” she said, though Inelda also encourages pro bono work, and many doulas serve purely on a volunteer basis. She also cautions her doulas not to take on too many cases in a row, and to be cognizant of their own mental health. But, she said, the act of tending to the dying is not as depressing as many assume; rather, it can be very rewarding.

“When you sit with a dying person and they take their last breath, it is as amazing and awe-inspiring as someone taking their first,” said Kirillin. “It is important, and sad, and needs to be cherished.”

Gregory Gelhorn died in September 2018. He spent his last day in his home, surrounded by his family. Together, they watched a movie and listened to 90s prog-rock.

Complete Article ↪HERE↩!

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The Meaning of Life is That It Ends

How Horror Movies Prepare Us to Talk About Death

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“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↩!

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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 Fernanda Santos

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↩!

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How Jewish Rituals Helped Me Mourn My Miscarriage

By Jill Cozen-Harel

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↩!

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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↩!

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Need Some Dinner Conversation Topics?

How About Death?

By Tracey Wallace

The dinner table is the most natural place for human connection and difficult conversations.

80% of people want to die at home, yet only 20% of people do.

This statistic is what helped the founder of Death Over Dinner, Michael Hebb, to recognize the opportunity in creating meaningful conversations around death… over dinner.

“The dinner table is the most natural place for human connection and difficult conversations. The comfort of food and drink goes a long way toward taking the edge off of this topic,” says Hebb.

What is Death Over Dinner?

Death Over Diner was launched in 2013 as an extension of a conversation with friends and colleagues around things that matter. It turned out that amongst topics, death was a central theme –– the fears most harbor about it, both for ourselves and those we love.

The Death Over Dinner website walks individuals through how to host their own dinner, including choosing something for your guests to read, watch, and listen to prior to the dinner.

Since launching, Death Over Dinner has become a global phenomenon, with people holding death dinners every day all over the world. From New York to Seattle, and everywhere in between, more than 200,000 people have used DeathOverDinner.org to talk about:

· Life wishes especially in final days

· End-of-life care desires

· Palliative care desires

· A living will

· Their own mortality

· Fear surrounding death

· and more.

Collaborators including Chase Jarvis, Arianna Huffington, Dr. Oz, The US Surgeon General, and Former Senate Majority Leader Bill Frist have all hosted robust conversations over dinner, as well as have set up an online tool to help others have this important conversation. In 2017, Death Over Dinner joined social wellness venture RoundGlass to expand their mission and reach.

To get a better understanding of how (and why) this started, what is happening now, and where it is going now that the death wellness movement is in full swing, let’s dive in to some questions.

How did Death Over Dinner Begin?

Death Over Dinner actually began as a graduate course Hebb taught at the University of Washington in the Communications Department.

Over a four-year time period, Hebb and a variety of different students and collaborators including Chase Jarvis, Arianna Huffington, Tom Kundig, and Kate Bailey, explored how they could scale meaningful dinner table conversations about critical issues we face as humans.

In the second year, they landed on death and end of life as the primary topic, inspired by the tremendous gap between what people want at the end of their lives and what they get.

The life changing statistic that 80% of people want to die at home yet only 20% of people do was the primary inspiration for the future of Death Over Dinner.

Death literacy was at an all-time low, and open conversation could potentially revolutionize the health care system. The team recognized that a grassroots movement was needed.

Since then, Death Over Dinner has spread across the world, with people holding death dinners every day across the globe.

How Many Death Over Dinner Events Have Been Held?

Since the events are independently organized and people re-use the resources multiple times for multiple dinners, it will always be difficult to know the precise number of dinners held.

The conservative estimate is that 200,000 dinners have taken place, which means that roughly 1 million people have sat down and had the experience of talking about death with others in their family and/or community.

Regional partners have helped launch platforms in Australia, India and Brazil and two years ago the Jewish Edition of Death Over Dinner was launched in partnership with about 30 rabbis.

The Healthcare Edition build in partnership with the Cleveland Clinic is currently in beta and being tested by dozens of the leading health care systems in the US.

For the founder, Hebb, there is nothing more thrilling than to sit down with doctors and nurses and see precisely how meaningful these conversations are to those who are facing death everyday.

How Do The Death Over Dinner Resources Help People Facing Death?

Let’s face it, no one is truly an expert on death. Few people have experience with death and many choose to run far from a conversation about it. End of life conversations are inherently difficult to initiate and can be stressful to navigate for anyone.

That’s why Death Over Dinner strives to make the process crystal clear, and formulated the concept similar to a board game. When you know the rules, it’s easier to relax and just play.

Designed to be held without facilitators, Death Over Dinner gives a little guidance to get started. From there, people intuitively know how to talk about what is most important to them.

Vulnerability is unquestionably the winning move in the Death Over Dinner “board game.” The questions Death Over Dinner prompt allow people to drop their armour and open up about their fears.

Death Over Dinner encourages people to not edit their responses and to say things they are afraid to say. Doing this brings individuals closer to knowing their priorities, and it brings them closer to the people in their life. 

Why Are Death Over Dinner Conversations So Important?

 The impact of grief on our well-being can be detrimental and difficult to calculate.

Roughly 25% of us are actively grieving, which begs the question, how are we grieving? If we don’t know our loved ones wishes, will we grieve longer and more intensely? Will we carry regret and have difficulty letting go?

Not to mention that the end of life expense is the number one cause of personal bankruptcy in the United States.

However, when we face our mortality, there are many beautiful things that happen.

“There is no better medicine than end of life awareness to give you clarity about what is truly important to you, your values, your priorities, how you want to live.  Life becomes more clear and sacred when we thoughtfully and intentionally face our impermanence,” says Hebb.

Studies done by Dr. Jordana Jacobs and other leading psychologists prove that talking about death actually increases our capacity to love. Other studies have shown that we become funnier and laugh more easily after being primed for death.

“There are two basic motivating forces: fear and love. When we are afraid, we pull back from life. When we are in love, we open to all that life has to offer with passion, excitement, and acceptance.” John Lennon

What’s Next For Death Over Dinner?

When Death Over Dinner was created, Hebb’s moonshot was that they could find a way into the center of the American medical establishment and inspire clinicians to talk about death in an open hearted and vulnerable way.

Knowing that oncologists, nurses, survivors and cancer patients are breaking bread every month at Memorial Sloan Kettering takes Hebb’s breath away when he gets present and lets it sink in.

“To think that we are really just at the beginning seven years after we launched, just starting to crack open the potential of this conversation, that is awe inspiring,” says Hebb.

Since the launch of Death Over Dinner in 2013, death literacy in the US has increased, and people are beginning to make more empowered decisions. The global death wellness movement and conversations around end of life are now front page news.

People are getting more creative, using their imagination for planning their last chapter and planning memorials.

There’s a shift from a reactive to a proactive approach to end of life well-being, and the movement is just getting started.

Learn more about Death Over Dinner and plan your own dinner today.

Complete Article ↪HERE↩!

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A Personal Día de Los Muertos Journey

By Joseph Leahy

A transplant to Los Angeles since 1988, Joseph Leahy was familiar with mortality. His family was in the funerary business. His family often took him to the cemetery as a child. “I’ve spent a lot of time around death and dying,” Leahy said. It was only when he moved out West, however, that he discovered the traditions of Día de los Muertos and identified with it. His enthusiasm for the celebration was so much so that his altars were often lauded in the early years of the Hollywood Forever Cemetery’s annual celebrations. Today, he continues to honor its sanctity with a yearly ritual commemorating his loved ones through a personal altar made at home and with the help of his daughter. His appreciation for the sacred tradition has also influenced his work in the HIV positive/AIDS communities. Apart from his yearly personal altar, Leahy has also helped these communities celebrate the ones they’ve loved and lost through meaningful remembrance.