This Seattle writer wants to change how we talk to kids about death

Facing her own terminal diagnosis, a cookbook author pivots to recipes for coping with grief.

After being diagnosed with terminal brain cancer, Seattle cookbook author Caroline Wright turned her attention to writing children’s books addressing grief and death.

by Tom Keogh

Seattle-based cookbook author Caroline Wright can teach you how to make a salad for four with grilled escarole, peaches, prosciutto, mozzarella and basil oil.

She can show you how a sandwich of grilled manchego cheese and sausage on peasant bread is made in the style of a master chef from Catalonia. For dessert, she’ll tempt you with a wicked coconut-caramel cake with malted chocolate frosting.

But when the leftovers are wrapped and put away, Wright can also impart some hard-won wisdom: how to talk to kids about death.

Wright, who studied cuisine at a renowned cooking school in Burgundy, France, always wanted to write as much as develop her skills in a well-appointed kitchen. At age 23, she became a food editor at Martha Stewart Living, and later brought her crisp, engaging voice to her cookbooks, Twenty-Dollar, Twenty-Minute Meals, Cake Magic! and Catalan Food: Culture and Flavors from the Mediterranean (co-authored with Daniel Olivella).

She hasn’t stopped writing about food. But in 2017 she was diagnosed with a glioblastoma, an aggressive, rapidly growing brain tumor, similar to the one that killed Sen. John McCain. With the possibility of death looming large, Wright turned her prose toward facing her own mortality — and starting the conversation with her kids.

Luminous and voluble in person, Wright is a self-described, inveterate doer. When not writing or cooking, she’s pursuing photography or quilting or knitting. She can’t stop making things happen, whether it’s tinkering with recipes for her next cookbook, or organizing a panel discussion at Town Hall (Saturday, Nov. 9) on children and grief. The event will explore how we talk to kids about death, a topic with no simple bearings.

Wright has written two recent books on the theme of child bereavement, inspired by her and her husband Garth’s agonizing challenge of communicating with their young sons about Wright’s still-uncertain prognosis.

The Caring Bridge Project (which came out in February) is a collection of Wright’s online journal entries from her year of chemotherapy and radiation treatment. It’s part of Wright’s written legacy to her boys, Henry, 7, and Theodore, 4. But she intended it, too, for a broader readership: families facing similar experiences with children’s anxiety and despair over loss.

This past summer she published Lasting Love, a picture book for reading aloud to bereaved kids. The heartbreaking but emotionally affirming story, with comforting illustrations by Willow Heath, is about a dying mother returning home from the hospital with a formidable friend: a mighty, furry creature who will always remain by her child’s side, as both an avatar of her powerful love, and as a faithful companion who never judges grief in any form.

Halfway through the tale, the mother passes.

“The child would know,” says Wright of her decision to include the mother’s death. “So stepping around that seemed silly. I wanted the kid to be part of spreading her ashes.”

For Wright, there was no option but honesty. She knew her kids would watch her change, physically, during treatment, and they would find her less available. Keeping them in the dark — especially the older boy, Henry — would have been unfair. “The thing kids can’t rebound from is broken trust,” she says. “There’s no resolution for that.”

When she and Garth first talked with Henry about her cancer, and how she and her doctors were doing everything they could, but she might die anyway, there were tears. But Henry devised a helpful analogy:

“Mommy’s brain is a garden, and there’s a weed in it.”

“Henry and I have had amazing conversations, poetic and hard,” Wright says. “If I die, I want both boys to have a relationship with their memories of me. If I lied to them, it would sully that relationship.”

Thirty-two months after Wright was told she’d likely have 12 to 18 months to live, she is miraculously cancer-free, but vulnerable to a swift reemergence of the glioblastoma. If you take cancer out of the picture, she actually became healthier while fighting the disease, radically changing her diet, dropping 40 pounds and growing lean and strong through yoga, energy work and exercise.

Wright says the boys now occasionally bring up her cancer at random times. When Theodore recently saw her short hair wet and matted after a shower, he grew weepy, recalling her treatment-related baldness, and associating it with being away from him.

The profundity of loss, and the despondency of a child left without the constancy of a loved one’s care, makes Lasting Love a benevolent bridge between a parent and son or daughter going through these troubles.

“The theme of Lasting Love is, literally, love lasting forever,” Wright says. “That’s what we were telling Henry. That was the only piece of hope that we could give him: Mommy’s fighting very hard. And even if mommy dies, the connection you have with her is never going to go away. And there are many loving people surrounding you.”

Wright’s Town Hall event is part of her outreach mission to regional families and to nonprofits concerned with children and bereavement. Among them is Safe Crossings, which supports grieving kids of all ages, at little or no cost. Amy Thompson, program coordinator, will join the panel, along with therapists from other organizations.

Thompson says the field of grief counseling for early childhood through adolescence is growing because of a rise in traumatic losses: gun-related murders, opioid-overdose deaths and suicides. Grieving kids are often isolated, subject to bullying, and told to “get over it” by clueless adults.

“The message from society to grieving young people is ‘move on,’ ” Thompson says. “But if you’re intensely grieving for months or even years after a death, there’s nothing wrong with you. Loss changes over time. As children grow and reach new developmental milestones, they can better process the permanency of death, and we see them regrieve.”

The attention Wright and Lasting Love are receiving in therapy circles and in the media is helping to normalize grief in children — in everyone, really. When she learned she had beaten seemingly impossible odds and, while not out of the woods, is without cancer, Wright celebrated with her family by making a favorite cake, although with a few adjustments: it was sugar-free, gluten-free and covered in carob frosting instead of her once-beloved chocolate.

“I live with great respect for this thing that may happen to me again,” Wright says of the glioblastoma cells that might still be lurking in her brain. “But I don’t live in fear of it. There is nothing to be gained by that. I might die and I might not.”

But the bond between parent and child will last beyond death, she says. “Kids are resilient. With support, they will have full lives.”

Complete Article HERE!

Finding Meaning in Grief

Grief expert David Kessler wrote a new book while grieving the loss of his son

In David Kessler’s latest book, Finding Meaning: The Sixth Stage of Grief (Simon and Schuster), he writes: We want to find meaning. Loss can wound and paralyze. It can hang over us for years. But finding meaning in loss empowers us to find a path forward.

By Julie Pfitzinger

For Kessler, a noted grief expert,  finding a path forward became an unexpected and integral part of his life.  While Kessler was writing this book,  his son David, who had overcome a drug habit only to start using again, died in 2016 at the age of 21.

The founder of Grief.com, Kessler, 60, spent several years working with the late psychiatrist Elisabeth Kübler-Ross (author of the groundbreaking On Death and Dying) and co-authored two books with her.

“Our grief is as unique as our fingerprint. We all have different backgrounds of love, and we all approach grief in our own ways.”

Additionally, Kessler, who lives in Los Angeles, has counseled countless individuals, led workshops and delivered presentations throughout his long career. He is a trained thanatologist (someone who studies death and dying) and has been onsite at crime scenes, plane crashes and other traumatic events to help grieving loved ones. Kessler also lost his mother at age 13, and because he was under 14, was prevented from being in her hospital room with her at the end of her life.

Next Avenue talked with Kessler about facing loss and finding meaning in, as he says, “a grief-illiterate society.”

Next Avenue: People in grief often ask you where they are supposed to find meaning in a loss. Where are some of those places?

David Kessler

David Kessler: I think that meaning is everywhere, just waiting to be found. We can find meaning in how [our loved ones’] lives touched ours. There is meaning in how we’re changed by their lives, and how we changed theirs.

In your work as a grief counselor, you tell people their grief won’t get ‘smaller’ over time, but they must get ‘bigger.’ How does that happen?

When people ask me ‘How long will I grieve?’ I respond by asking them, ‘How long will your loved one be dead?’ We can’t change the pain, but we can build a meaningful life around that pain.

Think of the memories you have of your parents or your grandparents, that live with you and that you can share with your children and with your grandchildren. That is the growth that can come from pain.

In our culture, we talk so much about Post Traumatic Stress Disorder, but we should talk about Post Traumatic Stress Growth. It’s after loss that growth is possible.

In today’s world, you say grief has been ‘minimized and sanitized.’ Why is it such a struggle to bear witness to someone’s pain? How can we be present when people we know are grieving?

Our generation is probably one of the last generations that remembers when death was part of life. I remember as a boy riding in the car, and seeing a hearse driving down the street ahead of us. Our grandparents may have died at home, now death generally happens in a hospital.

We are a grief-illiterate society. We are also a society that wants to ‘fix’ everything. When someone is grieving, they aren’t broken. They don’t need to be fixed. They need someone to sit with them in their pain and to witness their grief. In some ways, I’m teaching the lessons of our great-grandparents, who did those things when someone died.

Some people skip funerals because they are afraid of facing pain or remembering their own losses. If you are a person whose friend didn’t attend the funeral of your loved one, how do you move forward in that relationship?

First of all, I really encourage people to attend funerals. It’s important. However, if you have a friend who didn’t attend a funeral for someone you loved, know that it wasn’t about you. It wasn’t a statement about your friendship. It was a statement about their own pain. They didn’t do it to you — they just did it.

If you’ve had a friendship for twenty years, forgive them because of that twenty years.

You talk about the difference between private and public grief. Can you explain this?

Our grief is as unique as our fingerprint. We all have different backgrounds of love, and we all approach grief in our own ways.

In our generation, we were taught to be stoic. Think of the example of Jacqueline Kennedy, who didn’t cry publicly after JFK’s assassination. People said, ‘That’s what strong grief looks like.’ But she was later quoted as saying, ‘That was the First Lady grieving.’ Of course she cried in private.

We all act differently in public. Some people cry with friends, but some only cry alone.

Quoting Elisabeth Kübler-Ross, you say that people can be left with ‘unfinished business’ when someone from whom they have been estranged dies. How can they make peace with that?

We have to accept who they were, and the role they played in this lifetime. I always say it takes two people to tango — it wasn’t all you, and it wasn’t all them.

I believe that if you ask forgiveness sincerely in your heart, the person who is gone will feel it sincerely in theirs. A lot of people report that they have better relationships with people in death than they did in life.

While you do touch on the death of your son David at various points in the book, it isn’t until the end, in a chapter called ‘Everything Has Changed Forever,’ where you tell the story of his death and the days following. Why did you decide to talk about your personal experience of grief at the end of the book rather than at the beginning?

This isn’t a memoir, or a book about my grief. My grief is just one example; the book has many stories from other people about their grief.

A month after David died, a forty-three-year-old friend of mine died of the flu. Another friend lost their beloved dog not long after that. When I offered consolation, people said, ‘Your grief is worse than mine,’ but that’s not true. All tears count. The worst grief is always yours.

How are you finding meaning?

Elisabeth Kübler-Ross never intended for the five stages of grief to be linear. They don’t prescribe how you are supposed to grieve, they describe how you are supposed to grieve. As I write in the book, my work isn’t about my son’s death, but his death has deepened my work. And finding meaning is not extraordinary, it’s ordinary. Grief is not about pain. It’s about love.

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.

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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!

What to Say When Someone Dies

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When someone you know is grieving, it’s natural to want to reach out and help. But often, it’s difficult to know what to say when someone dies. Faced with the enormity of loss, words feel inadequate. It’s not uncommon to feel paralyzed, terrified of saying the wrong thing.

There’s no perfect combination of words that will take away a grieving person’s pain. But there are ways for you to show them that you care, from sending a card, to bringing over a home cooked meal, or just showing up in person.

From what to write in a sympathy card to when it’s appropriate to pick up the phone, we asked grief advocates, therapists, and other experts for their advice on how to support friends and loved ones when someone dies.

When in doubt, reach out

Calling, texting, or showing up face-to-face are the best gifts you can give someone who’s grieving, says Dr. Kelsey Crowe, the co-author of There’s No Good Card for This and founder of Help Each Other Out. “Sometimes it’s just letting them know, ‘I want you to know you’re in my thoughts.’”

But before you pick up the phone, it’s worth considering your relationship with the person. “If you aren’t close, definitely don’t call within days of a tragic event or difficult news,” says Emily McDowell, co-author and illustrator of There’s No Good Card for This. “Phone calls can feel intrusive and overwhelming at this time. A card, an email, or a text is better. However, if you are good friends or close family, call! The person can always choose to not pick up.”

If you do call, let your friend or loved one know that you’re there for them, and make sure they know that there’s no pressure for them to call you back. If you’re not sure what to say, something along the lines of, “I’m so sorry to hear about [the person who died],” or “I can’t imagine what this must feel like for you” are good sentiments to fall back on.

Acknowledgement can go a long way, even if you don’t know the person well. If you run into someone you know is grieving, don’t avoid them or engage in small talk like everything is normal. Megan Devine, author of It’s OK That You’re Not OK: Meeting Grief and Loss in a Culture That Doesn’t Understand says it’s best to let the grieving person lead.

“I tend to make eye contact,” Devine says. “And maybe a little nod of the head to say I see you, and I’m going to respect your space right now, but I want you to know that I see you.”

The best way to show support for someone who’s grieving is to let them know you’re there for them — and then actually show up.

“When words are inadequate, it’s your presence that makes a difference,” says Dr. Alan Wolfelt, the director of the Center for Loss and Life Transition. If there’s a funeral or memorial service, make an effort to attend. “You’ll always remember the people that do, in fact, show up,” Wolfelt says.

If you’re unsure what to say to someone at a funeral, it’s okay just to let them know that you’re sorry for their loss. It lets the person know that you recognize their pain without making any assumptions about their grief.

Even if you’re not close to the person who’s grieving, it’s almost always a good idea to send a card. If you’re unsure what to write in a sympathy card, it’s okay to keep it short and sweet.

“All you really need to say is some variation of: “I’m sorry you’re going through this. I’m here. I’m thinking about you, I love you,” says McDowell, who also has a line of empathy cards. “Your job here is to let the person know you care, and making the effort of sending a card is a great way to do this. Don’t be afraid to share a favorite story or memory about the person who has passed on.”

Gifts are another way to let someone know that you’re thinking of them, especially if you can’t be there in person. You can send something practical, like a book on grief or a voucher for a massage, or something sentimental. “I love to give flowers,” Crowe says, who recommends giving something that’s meaningful to you. “If you like music, make a playlist. If you’re crafty, knit a coaster.”

When someone is grieving, one of the simplest ways to show support is to offer to help with chores and other practical tasks.

Don’t wait for the person to ask for help. They might feel like they don’t want to burden anyone, or they might not even realize they need help, says Crowe. Just go ahead and offer — but be specific. While people often say “let me know if you need anything,” it’s much easier for someone to take you up on a specific offer. For example, you could offer to pick up the kids from school or day care, bring over a home-cooked meal, or help tackle a stack of paperwork.

Whatever you offer, make sure it’s something you can really follow through on. “It’s important that the offer is something you actually like to do,” says Crowe. “Don’t offer to cook if cooking is stressful for you, for example.”

“Many times, people in their anxiety will say silly, inappropriate things,” Wolfelt says. Often, people fall back on clichés and trite comments in an attempt to comfort people in grief, many of which diminish the loss, and cause unintended pain. Some phrases to avoid: everything happens for a reason; God wouldn’t give you more than you can handle; what doesn’t kill you makes you stronger; at least they lived a good life.

Another phrase to avoid: “I know how you feel.” Even if you’ve experienced a similar loss, you shouldn’t assume that someone else is feeling the same way you did. “Empathy gives you insight into some of the emotions your friend might be having, but saying ‘I know how you feel’ can sound dismissive of their unique experience, and cause them to feel alienated,” says McDowell.

Often, after someone dies, whether consciously or unconsciously, people avoid saying the person’s name. But Devine says you shouldn’t be afraid: saying the person’s name won’t make someone that’s grieving more upset; instead, it will let them know that you remember the person, and you’re open to talking about them. “If you are uncomfortable or worried about upsetting somebody, and they’re saying their person’s name, and you cringe and walk away, you’re erasing their person,” Devine says. “You’re basically saying, I don’t see this, this is too hard.”

Even after everyone else goes back to their day-to-day lives, it can be helpful to keep checking in on the person in the weeks and months after their loss.

“Loss doesn’t have an expiration date,” McDowell says. “If something truly bad has happened, a person’s life has changed forever, and just because time has passed, they probably haven’t stopped thinking about their grief.”

If you want to reach out but have no idea what to say, McDowell recommends starting with a simple question,  like “how are you today?” Adding “today,” acknowledges the fact that they’re going through something painful, while also giving the person an opening to share how they’re feeling.

Reaching out to a friend who has just lost a loved one can be daunting, but it’s better to try and risk making a mistake than not try at all. When people avoid addressing a tragedy out of fear of making things worse, the person grieving can end up feeling abandoned.

“If you don’t know what to say, it’s okay to say that,” McDowell says. “Our friends don’t expect us to respond perfectly and eloquently to every situation. They just want to know that we care enough to try.”

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!

How Learning About Death Helped My OCD

By Marianne Eloise

Everyone is at least a bit afraid of dying. Yet that fear is the driving force behind so much of life. Anything we achieve is because we know death will come: forming relationships, writing books, having children…these are all a result of our fear of an inevitable end.

Perhaps, with infinite time on Earth we’d put far less work into living. A healthy awareness of our own mortality in our daily lives, then, can be a good motivator. But when is it too much? The answer, especially for people like me with obsessive compulsive disorder (OCD), is when it becomes an obsession.

For as long as I can remember, I’ve suffered with OCD. Like many others, my intrusive thoughts revolve around death-adjacent topics. OCD presents diversely but, simply put, sufferers have intrusive thoughts that they cannot control. In an attempt to control those thoughts, they’ll perform compulsions.

My own death didn’t necessarily frighten me. For a child plagued by constant, violent images and compulsive behaviours, it seemed a bit too much like freedom to be scary. It’s no coincidence that, held prisoner by intrusive thoughts and compulsions, people with OCD are 10 times as likely to die by suicide.

Integrative psychotherapist and OCD specialist Craig Shirley of the OCD Treatment Centre tells me that my experience is common. He says that many people with OCD don’t fear death so much as they fear the uncertainty and the idea of “missing out on life”.

“People with OCD often want to be able to have complete certainty around particular things, which of course in this case they can never have,” Craig adds.

Twenty-six-year-old Zoe tells me that she developed OCD shortly after her grandpa died. “My family has always been my safety net, and my grandpa’s death woke me up to the fact that that could all slip away,” she explains. “I remember watching Mulan, the scene where the ghosts of her ancestors are fighting in the temple. I had a panic attack knowing that if my family died, they would not come back as quirky ghosts. They’d just be gone.”

Zoe adds that she became desperate for things to go back to how they were before, which led her to perform rituals to “heal” her family. “Because change, illness and death are inevitable, I became hysterical as the initial rituals became ‘less effective’. I revised them all the time, my routines becoming longer and more obvious to everyone around me. This only worsened after I saw my nana die a couple of years later.” This perceived responsibility to “help” everyone at the expense of your own mental health is common with OCD sufferers – we often believe that we’ve somehow been tasked with saving everyone through our rituals.

As a child, I would obsess over my own demise, keeping extensive diaries so that I could remember everything I’d ever done. I tried to control the inevitability of death, making promises to an imaginary OCD God to be good, to do my rituals as long as nothing harmed me or my loved ones.

While Zoe has had therapy that’s brought her rituals under control, she still obsesses over death and health. “In the last five years I’ve had two friends die and in the aftermath I went crawling back to some of the rituals I performed as a kid, like a comfort blanket. I felt responsible and tried to redeem myself,” she says.

Similarly Suzi, 32, who is Catholic, told me that while death was a constant spectre for her, the idea of heaven placated her anxieties. After getting treatment for OCD, she found that in overcoming her obsessive thoughts and OCD-related rituals, she also lost the Catholic rituals she had always fallen back on.

With that loss of faith, Suzi says she also lost the “safety net” of heaven. “My OCD has always been centred around fears for my own wellbeing, and not trusting others with it. I was terrified of suffering, pain and death. I no longer knew what happened when people died, and I struggled with the concept of people not having a soul, of my conscious mind ceasing to exist when I died.” She adds that after being diagnosed with chronic illnesses, her fear has transformed. “Where once my fear of death was about what happens after people die, it’s now about not achieving the things I want to.

A sudden death scares me less than the knowledge that my life will end and I have no control over when. As a child, I would obsess over my own demise, keeping extensive diaries so that I could remember everything I’d ever done. I tried to control the inevitability of death, making promises to an imaginary OCD God to be good, to do my rituals as long as nothing harmed me or my loved ones.

This fear hasn’t gone away. However, experiencing actual loss in my life has turned death from a haunting spectre into a very real, looming possibility. It has also made me aware of how badly I handle grief, which makes the possibility of dying scarier.

The more I enjoy something – a person’s company, a moment in time – the more aware I am that everything is temporary. We cannot control that inevitability and as an adult, I know that, so the way my obsessive thoughts manifest is different from the rituals I used to have. I try and fit as much as I can into my life, to the point of obsession. I record everything. If I have dinner with my grandad, I’ll note down the things he says afterward, unable to enjoy the present for fear of the future. Transience is scarier to me than death; the idea that anything we love can be ripped from this Earth at any moment is at once what drives and paralyses me. The rise of an insistent obsession seems gradual until the point where it takes over everything.

Despite the fact that around 1.2% of people in the UK live with OCD, it’s still one of the most misunderstood and misrepresented disorders.

The experience of having intrusive thoughts is difficult to explain to someone without OCD. Imagine you’re having a relaxing time, say a nice bath. Out of nowhere, you’re hit with a graphic image of a dead loved one. It’s upsetting, no matter how often you’ve experienced it. So to get rid of the thought, you might perform a compulsion, like counting everything you see. While my compulsions have gotten better with time, my obsessions have not. Whether it’s images or troubling thoughts, I feel like I have no control over what I think about.

Despite the fact that around 1.2% of people in the UK live with OCD, it’s still one of the most misunderstood and misrepresented disorders, which makes it difficult for sufferers to be honest. Confessing to a friend that you obsess over violent images against your will is daunting. It leaves sufferers feeling lonelier, which serves to exacerbate the disorder.

I spent the first few years of my life in the dark about my condition, thinking that I was “wrong”. In the media, OCD has typically been represented as an obsession with cleanliness. While that is sometimes the case, the ‘compulsions’ – the only visible part of OCD – are often the least harrowing. What goes on in a sufferer’s brain is for many the worst part of the disorder, and harder to represent.

OCD is a way of trying to control an uncontrollable world. Loss is the most unruly, devastating thing we can go through. Perhaps that’s why entire religions have organised around trying to make sense of it.

Of course, not everyone who’s afraid of death suffers from OCD. Craig tells me that the noticeable difference is about “how much time the OCD is taking up of someone’s life”.

He says that while many people without OCD want reassurance or ruminate over things, you know if you need to seek help when the symptoms are “getting in the way of everyday activities” or if you’re “becoming increasingly obsessed around a particular theme or worry”.

When you’re constantly assaulted by painful thoughts against your will, it might seem counterintuitive to seek them out. But with OCD, the most effective form of therapy is Exposure Response Prevention, wherein a sufferer confronts images and situations that they find uncomfortable and ignores the urge to perform compulsions.

Zoe tells me that a combination of therapy, talking to fellow sufferers and discussing death openly has made her rethink dying. This works for me, too.

The one thing that has helped me to feel more in control of my thoughts has always been learning. That can take many forms: educating myself on my disorder but also educating myself on what I fear. When I was so scared of arson that I would go home to check if my house was on fire, I taught and reminded myself of the (slim) possibility of that ever being the case.

And so, to deal with my fear of death I started to learn more about death positivity. First, I did this through Caitlin Doughty, the mortician and YouTuber. After reading Doughty’s books, I learned that she got into the death positivity movement when she developed OCD after seeing a child die aged 8. Her fear of death, and her rituals surrounding it, forced her to confront her fear head-on. Now she has three books under her belt and an impressive career tackling “death denial”.

The one thing that has helped me to feel more in control of my thoughts has always been learning.

From there, I read more and more about death, death rituals and the way other cultures embrace and accept death. I took practical steps, like thinking about what I want when I die. Sure, it’s morbid. But it makes me feel less as if I’m leaving this Earth against my will.

Now, I genuinely believe that my OCD was worsened by our culture of silence and denial around death. We often describe death in euphemistic terms – people “go to sleep”, they’re “in a better place”, etc.

Open conversation about death has been promoted by death acceptance advocates like Doughty’s collective Order of the Good Death, but the movement is still “alternative”. Being euphemistic only makes us deny death more, but it’s been proven that open, non-euphemistic conversation informs people and goes some way toward preparing them for the unimaginable. It makes us more able to handle grief.

The rise of death doulas, who coach people through dying, points to a more accepting attitude towards death. Death doula Shelby Krillin tells me that she frequently encounters people with OCD who have anxieties around death, and that it often stunts our ability to grieve. “It hinders deep conversations and connections with the ones we love who are dying, and the side effect is superficial conversations. When that happens, feelings, wishes and thoughts go unexpressed,” she tells me, adding that sitting with death is “true vulnerability.

She points to the Buddhist attitude of “embracing the groundlessness of life” as a pointer for starting to discuss death. “What we don’t know, we fear. Talking about death gives it three dimensions. You get to look at it from all angles. When people start truly grasping their own mortality, it makes our lives more vivid and wondrous

Like many anxious people, I fill in the blanks with the direst consequences imaginable, a process known as catastrophising. If my boyfriend is at the shop too long or my grandad doesn’t answer the phone, my brain tells me they’re dead. If my dog is sick, she’s dying. If I smell smoke, my house is on fire. Filling in the blanks with the truth and soothing myself with facts is reassuring.

Craig tells me that honesty is the best approach. “Accepting death isn’t necessarily about just finding a different way of looking at it, but also about accepting more deeply the things that we as human beings can and cannot control, and learning to accept that,” he reflects.

Accepting the things we cannot control is a necessary part of overcoming most manifestations of OCD. As death acceptance becomes less alternative, it’s my hope that we can all learn to talk openly about the inevitable end we all face and my belief that a culture of honesty might have helped me as an obsessive compulsive child.

Complete Article HERE!