When a Friend’s Loved One Dies

by Lori Lipman Brown

My father, Mel Lipman, died one year ago today on his own terms. He signed himself into hospice, stopped artificial nutrition, and died peacefully with the aid of pain-killing medication.

As a humanist, I appreciate straightforward language regarding death. I don’t consider my father to have “passed away,” and I certainly don’t think he’s in a better place. Although I suppose MedCure, an organization that supports medical science and the place my dad’s body was sent, could be considered a better place than fighting pain in the hospital. That said, I appreciated everyone’s well-wishes.

The sympathy cards showed a wonderful understanding of me, my family, and my father. Everyone who sent them had chosen exactly what applied to us—no talk of heaven or other theistic concepts. Instead, the focus was on the legacy and memories that my father left for us all. Notes recalled wonderful memories of specific times with Dad and appreciation of all he had done for the community. I’m grateful for those notes, as well as the wonderful longer letter I received from Dad’s colleague in the Humanist Foundation, which I read to him during his final days.

If you had asked me (before it happened) what I would need most when my parents died, I would have said the companionship of my friends. But what I really needed was time alone with my parents’ “stuff” (including paperwork), time off from work to handle necessary paperwork, and time with my immediate family (my spouse, my brother, and my brother’s family).

If you want to help a friend whose loved one has died, it’s fine to say, “Let me know what I can do.” However, suggesting specific things you might be able to do is even more helpful. Taking into consideration restrictions imposed by the current coronavirus pandemic, you can offer advice or assistance with:

  • Burial/cremation/funeral arrangements
  • Childcare
  • Rides to appointments
  • Laundry pick-up and other errands
  • Meals at your home/their home/take-out from restaurants
  • Grocery shopping

Add to the list whatever you think your friend might need that you can do. If you’re wrong, no harm is done in offering assistance.

As I mentioned, I received many wonderful emails, calls, cards, and letters of condolence. Below is an example of the kinds of emails that I found to be helpful when my father died.

Date: March 2019
Email Subject: So Sorry to Hear of Mel’s Death

Dear Lori,

I was so sorry to hear that your dad died.  He gave so much to us in his activism, his warmth, his humor and his friendship.  Please DO NOT FEEL THE NEED TO REPLY TO THIS EMAIL; I know you have a lot on your plate right now with all the details that need to be handled following a death.

If I can help you in any way, please let me know.  Here are some things I think I could do well that might help:

  • I can notify everyone at the local interfaith group.
  • If Mel left his tax documents and you trust me with such, I can help with his tax filings.
  • I can help go through Mel’s belongings and can bring anything you want donated to his favorite charity.
  • I can listen if you want to call/skype/visit/meet for coffee to share memories of Mel, how you are coping, or anything else you want to talk about.

These are just a few things I can think of that I could do, but if you think of anything else you need me for, just let me know.

With deepest friendship…

Emails like this made my life less stressful during a trying time. It left me free to read and then move on.  Although I did not mind responding to condolence notes, I mainly wanted to focus my time on going through my father’s documents before I had to return to the East Coast.

I did take advantage of some offers of assistance. Bullet number one in the above email was quite helpful. It would have been burdensome to wonder whether I had left out any individual who needed or wanted the information, but even more burdensome to try to contact them all. Another item on the list that I took advantage of was that I had someone else help me with Dad’s taxes.

I greatly appreciated an offer to take Mel’s many mementos and writing and place them in an appropriate setting. I was about to ship to my small condo a large trophy that had been awarded to my father by the Humanist Foundation (of which he was a trustee and treasurer). At my condo, it would hardly ever be seen by anyone other than me and my spouse. Then I received a sensitively worded query from the American Humanist Association about whether I would be keeping it. I was asked if I would consider making it available to the AHA headquarters in Washington, DC, where it could be displayed. I thought that was a perfect place for the award. I also received an offer to send my father’s humanist papers to the Meadville Lombard Humanist Library in Chicago. The papers are now there.

However your friends handle the death of their beloveds, please remember that whether they reach out to you or not, it is simply important that you’re available to them. Your job as a friend is to be kind and compassionate in allowing them to do what they need to do.

A note on Mel’s last days:

The folks at hospice assured me that even after he seemed to be less aware and more asleep as the medication took its course, he could still hear me. I wasn’t certain if this was an accurate medical fact or something they said to make me feel better when I visited. But on one of his last days, Dad was furrowing his brow in discomfort. I sang to him, and I could see his whole face relax. I mention this, because it can be helpful to both you and your loved one to spend some time together even if one of you is less communicative than the other. (These days that time might have to be via computer or smart phone, but contact is still key.)

Finally, anyone who knew Mel, knew that he loved to play the dice game craps. He used to say: “A good death after a good life is like a long roll on the craps table. It has to end sometime.”

Love you, Dad. Seven out.

Complete Article HERE!

Do your loved ones a favor.

Find out now how they want to die.

I’m an ER doctor, and we need to know what matters most to your family member.

By Emily Aaronson

By now, most of us know the basics of getting through the coronavirus crisis: Wash your hands. Stay at home. Stay informed.

But there’s one other task we should all engage in now: Talk with a loved one about what they would need so that they can feel at peace at the end of life. It’s important that you understand what would be most important to them if they were in the last phase of their life — and what steps you and others will have to take to ensure those needs are met. These are conversations about hopes, but also about finances, decision-making and even about their more basic fears. These are conversations designed to guard against regrets.

There isn’t going to be a better time than now, when the periods in our days in which we can offer full, undivided attention are expanding. While social distancing at home, where you can be perfectly positioned on your couches or over FaceTime, with no appointments to run to, reservations to make or kids to pick up, this moment is perfect. Call your mother, or your brother or your daughter.

Of course, all of that is in addition to the other very real reason that having a careful conversation with the ones you love most about what matters most to them is important: In the days ahead, you may need to know the answers.

The most recent worst-case modeling from the Centers for Disease Control and Prevention paints a dire picture, predicting widespread transmission and asserting that most of the U.S. population will be exposed to the virus. Reports from Italy show us what care looks like when we can’t care for everyone, including the obligation to make hard decisions about who should receive the rationed resources. This doesn’t, of course, take into account all of the dramatic measures now in place. But there is no question that as illness spreads, lives will be lost. We hope that the demands on our health-care system won’t outstrip its capacities, but we also have to plan for the possibility that they might. Under those circumstances, getting your loved ones to clarify their wishes will have been an act of heroism.

The alternative is terrifying. As an ER doctor, I am already faced with patients who arrive too sick to tell me their wishes, with no documentation of what those were when they were well enough to articulate them and with family members who never asked and, as a result, just don’t know. It is in these situations, as I place tubes and lines in this failing body, that I worry we are not providing care that is concordant with their goals. If I had known that the 68-year-old with recently diagnosed metastatic breast cancer is more worried about being uncomfortable at the end of her life, rather than prolonging it, we wouldn’t have placed that breathing tube and would instead have focused our intensive efforts on making her comfortable. If I had known that the 81-year-old had always hoped to die at home, I would have spent more time trying to mobilize our home hospice team rather than defaulting to a hospital admission. If I had known that the most important thing to the 44-year-old was spending as many days as possible with his sons, I wouldn’t have subjected his wife to the extensive ER discussion about his goals and would instead have focused on giving her the emotional support she needed to prepare for the lengthy ICU hospitalization.

Ultimately, what we need to know in the hospital is what matters most to your family member. Among other things, how long would they want to receive medical care at the end of life? What concerns them about treatment? What are their preferences about where they would want to be if their time was short?

Before your family member gets here, however, there are other questions you will want to know the answers to, to better prepare yourself and them. What affairs do they need to get in order? Are there any family tensions or disagreements they worry about? How involved do they want to be in decisions about their care? If they couldn’t be, who would they like to make decisions for them?

I recently had this conversation with my own father and found out that he worried more about getting overly aggressive care than he did about not getting enough. He wanted me to be his health-care proxy rather than my mother, given my professional experience, and wants to be actively involved in any decisions about his care. Ultimately, he was clear that he would want to spend his last days at home, if my mom had the support she needed, rather than in a hospital.

These won’t be the answers for everyone. To help navigate the nuances of this conversation, the Conversation Project and Death Over Dinner are two collaborations among health-care professionals, community representatives and faith leaders that have created guides to help you move through these conversations. Regardless of which one you use, it’s important to recognize that it may take more than one discussion to leave you feeling prepared to speak with me, at the hospital, with confidence about what matters most to your loved one.

I wish we didn’t have to make and share these difficult decisions, but I worry that we are in a situation that necessitates it even more than usual. In this time of uncertainty, during which some of us have also been graced with a reprieve from the busyness of our external lives, I would ask that you join us at the front lines and — in support of the work that we all have ahead of us — have a conversation.

Complete Article HERE!

Being an end-of-life volunteer helped me in many ways

By Laurie Barkin

In 2012, I made a decision to become a volunteer, end-of-life “spiritual care partner” through a program called Kol Haneshama.

When I signed up, I had four elders in my life — my parents and their longtime spouses — all of them in their 80s. My work as a psychiatric nurse had given me precious little experience with death and dying.

Kol Haneshama is a collaboration between the S.F.-based Bay Area Jewish Healing Center and the San Francisco Campus for Jewish Living (formerly the Jewish Home).

For me, getting involved seemed like a good way to learn what I needed to know about this phase of life in order to help my parents when the time came. The surprise bonus was the depth of support I received from my fellow volunteers.

The phrase Kol Haneshama is found in Psalms 150: “Kol haneshama t’hallel yah” (Let everything that breathes sing God’s praise).

We volunteers are paired with people who reside in their own homes, in nursing homes or in hospices. The 40-hour training program is intense and experiential. I remember crying a lot.

At monthly learning sessions and weekly group check-ins, rabbis teach us about spiritual-care interventions such as empathy, ways to help our residents decrease isolation by building community, and how to open conversations with our residents about their beliefs related to death and dying.

During our check-ins, many issues are raised, such as: Exactly what is spiritual care and how do we provide it? How do we sit with people suffering from dementia? What do we do if our resident asks if they are dying but the family doesn’t want them to know?

We volunteers number about 20. On average, 12 to 15 of us turn up for our lunchtime learning sessions/check-ins. Although we range in age from 28 through 83, most of us are women of retirement age. As a result of our work and our discussions, we have coalesced into a mutual support group that buoys us through the inevitable losses not only of our residents, but of those in our personal lives.

Over the last five years, three of the four elders in my life, including both of my parents, have died. I attended all of their deaths, making sure that they died as they requested, peacefully and without pain.

Even with all the support I have in my life, the loss of my parents feels like an unmooring. With both dying in their 90s, it is not the earth-shaking loss of unexpected death. Rather, it is more like letting go of a hand, one that held wisdom, history and love. I felt destabilized, my body shaken, disturbed, out-of-sync.

During the process of their dying, I leaned heavily on my family and friends for advice, guidance and just to feel their love. After each death, my Kol Haneshama group listened deeply as I described the experience in detail. Although I hate crying in front of people, tears streamed down my face. They handed me tissues, asked me questions and asked how they could help. They checked in with me individually between groups.

At a psychological trauma conference I once attended, neuropsychologist Allan Schore said, “The experience of feeling cared about in a relationship reduces the secretion of stress hormones and shifts the neuroendocrine system toward homeostasis.” The point here is that social support is the spine that holds us up during life’s most shattering moments.

Everyone heals in their own way and time, but in my experience as a psych nurse, as a spiritual care partner and as a grieving daughter, healing is enhanced when we are able to express feelings of loss in the presence of caring others.

Feeling love and concern from my family and friends has indeed helped to quiet my body and soothe my spirit. Talking with my fellow volunteers, people who understand the language, feelings and terrain of loss — as well as the underground and sometimes contradictory emotions involved — provided more support than I could have imagined.

Because of the support I received, when I think of my parents these days, I find myself smiling and shedding tears of gratitude at the same time.

Complete Article HERE!

Four future scenarios of death and dying

By Richard Smith

The future is unpredictable. The unexpected happens often and can have a major impact. Nevertheless, some thought of how the future might look is important in preparing for it. Scenarios are one way of doing this and were developed after the wholly unforeseen oil shock of 1974. Scenarios are not predictions of the future, but rather sketches of plausible futures with the limits of plausibility set wide. They are not what people would like to happen, but rather what might happen. They have been used to think about the future of South Africa after Apartheid, the NHS, and scientific publishing. They are in many ways devices for thinking about the present, recognising things that will be important whatever the future brings.

Elaborate methods can be used to produce scenarios, but there is value in simply shared imaginings. I have imagined here four scenarios of the future of death and dying. Famously, the future is already here, but not evenly distributed, and that is true of these four scenarios.

“Immortality” and inequality

Medicine is successful with extending life but at great cost, increasing global inequality

Medical research uses genetics, big data, nanotechnology, artificial intelligence, and other methods to find ways to increase the length of life considerably. At the same private companies develop ways of “downloading brains” to allow some people to achieve “immortality.” These methods are extremely expensive, making them available to only a few. The very rich can access them and live much longer, while the poor, as now, have much shorter lives.

Climate response

The world and end of life care become much more equal

The climate crisis causes people to recognise our global interdependence and the rich to accept reducing their carbon consumption and access to expensive health care. Resources—financial and health care workers—shift from rich to poorer countries. The world becomes more equal, and the minimum package of palliative care described by the Lancet Commission on Palliative Care and Pain Relief becomes available to all while end of life care in rich countries becomes less technical and more human.

Rebalancing

Families and communities become more important and health care simply supportive in managing dying and death

A growing number of people become unhappy with the increasing medicalisation of end of life care and the lack of meaning around death and dying. They take back control from the health establishment, change laws, set the agenda, and run end of life programmes. These developments are an extension of programmes—like that in Kerala and Compassionate Neighbours, Communities, and Cities—that have developed to increase the capacity of families, communities, and volunteers to manage death and dying. Health care remains important but plays a supportive role.

Assisted dying spreads 

Assisted dying becomes a component of universal health care

Assisted dying spreads to all almost all high income countries and many low and middle income countries. It is available not only to those judged to be near the end of life but all those with unbearable suffering and those developing dementia. It is tightly regulated but provided by many health care professionals, including those working in palliative care. In most countries some 10% of people die this way, but the range is from 1% to 25%.

Complete Article HERE!

Pastors talk a lot about death around Easter.

Now covid-19 is forcing more to prepare for their own.

The Rev. Michael Curry is the presiding bishop of the Episcopal Church.

By Sarah Pulliam Bailey

The Rev. Barbara Brown Taylor will spend a portion of Good Friday planning her death. The Episcopal priest hopes to outline the music she would like to hear as her life comes to an end, the floral scent she hopes to smell and which of her 12 hand-pieced quilts she intends to hold.

Taylor is not ill, but at 68, she falls squarely into the age range especially vulnerable to covid-19. While the coronavirus has sickened people of every age, 80 percent of those who have died of covid-19 have been over 65.

So before Taylor speaks in virtual gatherings about the death and resurrection, she will add to her list of what she has already prepared: advanced care directives, who has power of attorney over her affairs, and plans to be buried — by her parents and sister.

“Few people are up for this conversation,” she said. “You won’t believe how many people walk away from me when I bring this up.”

Death is ever present in church sermons in the days and weeks that lead up to Easter. On Ash Wednesday, pastors remind parishioners, “Remember you are dust, and to dust you shall return.” On Good Friday, they preach the crucifixion of Jesus.

But even as many pastors lead funerals regularly, many admit they haven’t made end-of-life care decisions or planned for their funerals.

The Rev. Michael Curry, presiding bishop of the Episcopal Church, said he has planned his funeral, but covid-19 has pushed mortality to the forefront. He and his wife have had to make plans for what happens if they get sick with the coronavirus.

“Holy week is about hardship and suffering and death, that Jesus didn’t avoid it and dared to die … to show what love looks like,” said Curry, 67. “This is not a sweet sugarcoated Easter.”

Three weeks ago, a diagnosis for pneumonia prompted the Rev. Tony Evans, a popular megachurch pastor based in Dallas, to think about the details of his own funeral. (He tested negative for covid-19.)

“It’s always hard to hear about death but no better time to deal with it than when it’s staring us in the face right now,” said Evans, 71.

People used to imagine their own deaths more because they witnessed death more regularly, said Lydia Dugdale, director of the Columbia Center for Clinical Medical Ethics and a physician who has spent the past few weeks caring for covid-19 patients in New York City.

And although the church offers comfort to those dealing with the death of a loved one, Dugdale said it hasn’t been at the forefront of helping people face death. In her forthcoming book “The Lost Art of Dying,” she points to a 2013 Harvard University study found that clergy knew little about palliative and other end of life care. It found that pastoral zeal to encourage faith in God enabled congregants to choose treatments associated with more suffering.

Dugdale said laypeople haven’t wanted to hear about death, and clergy have stopped preaching about it. “From my own experience, I can count on one hand the number of sermons I’ve heard on the need to prepare well for death,” she said.

Covid-19 has changed that for some. The Rev. Carrie Call, who provides spiritual care to pastors and parishioners in the Penn Central Conference of the United Church of Christ, said more pastors have been seeking information on end-of-life care and do-not-resuscitate orders in the weeks leading up to Easter this year.

“It’s ironic, because our faith lives and message are about triumph over death and resurrection, but we come face to face with it on this kind of scale, it’s really challenging,” she said. “The challenge for pastors is how they cope with that in their own lives while maintaining a sense of calm to help parishioners in their lives.”

The Rev. James Martin, an editor at-large at America magazine, said he and his fellow Jesuits all have made funeral plans, including the readings, the celebrant and the music.

He said it’s human and natural to fear death, especially now. The way that people have died alone or been unable to hold funerals during the spread of the coronavirus has been especially sad. Still, some people might see it as an opportunity to change their lives.

“To plan out your own death is not always morbid,” said Martin, 59. “It’s a way to look at the kind of life you want to lead.”

Timothy Keller, the retired pastor of Redeemer Presbyterian Church in New York City, said he does not have his funeral planned. He said he thinks that should be up to his family. He has no burial plot, but he has his eye on a small graveyard in Manhattan surrounded by wire fence and car repair places, describing it as in the middle of things, unpretentious and easy to visit.

Keller said he is less afraid of death now at age 69 than when he was diagnosed with thyroid cancer at 52.

“If we got the virus and died, as sad as it would be, we would both say, ‘We thought we had more to do on earth,’ and it’s God’s way of saying ‘Nope,’ ” he said. “That’s not a bad message for God to say, ‘You’ve done your work.’ ”

Complete Article HERE!

Website that helps you plan for death finds success with millennials

By Rebecca Ruiz

Liz Eddy has lost track of how many times she’s told the story that led her to co-found Lantern, a website that helps people tackle the complex logistics of losing someone they love and also plan for their own deaths.

That story starts with a phone call on a Saturday morning from a nursing home with news that Eddy’s grandmother had died. Two police officers and a nurse greeted Eddy in the room where her grandmother’s body lay.

“They looked at me and said, ‘What do you want to do?'” recalls Eddy, who was 27 at the time. “I had no idea what to turn to … and really was just thrown into a rapid Google search where I typed in what do you do when someone dies?”

“I was just thrown into a rapid Google search where I typed in what do you do when someone dies?”

Eddy, who lost her father as a child, anticipated this moment. Her grandmother, who was frail, had done some pre-planning. She’d written a will, completed an advanced directive for her medical care, and told Eddy where she kept important paperwork and belongings.

But Eddy quickly learned that there’d been oversights, including how she might close certain accounts, stop auto-refill prescriptions, and find online passwords. Eddy figured she’d rely on a comprehensive online resource that could walk her through what to do but found none. Instead, she embarked on a “scavenger hunt of websites” for answers.

“I fully expected to find something like Lantern,” she says.

In the midst of coping with her grief and trying to settle her grandmother’s affairs, Eddy walked in the door of her best friend Alyssa Ruderman’s home, and said, “We’ve got to do something about death.”

The pair launched Lantern last fall with $890,000 in pre-seed funding. The website offers free checklists for users who need to plan a funeral, help dealing with logistics that follow a funeral, or assistance sorting out their last wishes in advance of their own death. The site has thousands of users, and to Eddy’s surprise, 40 percent of them are 35 and younger.

Lantern’s appeal to millennials speaks to a number of trends. They may help older parents plan for what happens when they die and then decide to make similar arrangements for themselves. Accustomed to having everything in their lives optimized or organized by a digital tool, the 35-and-under crowd may view online end-of-life planning as a helpful service like any other they use.

In general, talking about dying seems less taboo to many millennials. They encounter the “positive death” movement online, which aims to make conversations about death normal and routine. But millennials also live in a world that seems beset by crisis, whether that’s mass shootings, climate change, or coronavirus. Contemplating what the end looks like is part of being alive.

Anita Hannig, an associate professor of anthropology at Brandeis University who studies death and dying, says people — not just millennials — increasingly want to express their unique selves in death as in life.

The challenge is getting people comfortable enough to consider what that looks like. Eddy and Ruderman have designed Lantern to sound like a compassionate friend who knowingly takes your hand. The site isn’t morbid but instead offers practical information about the choices we can make before we die, like hiring a death doula and how to write a will. Users can compare different burial options, learn how to select life insurance, and explore how they want to be remembered online.

“A lot of people still think that if you’re talking about death too much, there’s an eerie way you’re bringing it about,” Hannig says. “In some ways, having a website like this [is] making death so much more manageable so that you can focus on the actual process of death and dying when it happens.”

Viana McFarland, a 25-year-old New Yorker, discovered Lantern after an employer-sponsored financial planning workshop prompted her to think about what might happen to her belongings and modest savings after she died. After searching Reddit and Google for resources, she found Lantern.

“There were small things I didn’t think about,” McFarland says.

That included the specifics of her burial. McFarland learned that she could let her body decompose in a “mushroom suit,” which hastens the breakdown of a corpse using mushroom spores and other microorganisms. She explored how to donate organs and leave money to the ACLU and Planned Parenthood. Most of all, McFarland wanted to spare her loved ones stress, confusion, and conflict. The time she spent on Lantern felt useful and productive.

“I guess younger people, with more resources at our hands, might become informed sooner or in a different way than our parents and grandparents were,” says McFarland.

More than three dozen articles on Lantern offer advice and insight on common questions. Its checklist offers a step-by-step guide to managing your last wishes. Tasks include making a funeral financial plan, safely storing financial information so it can be accessed by a loved one, and writing a last will and testament.

Lantern is also sentimental. The checklist prompts users to reflect on their legacy, asking about the three best decisions they ever made, what advice they’d give to their younger selves, and what they’d want their grandchildren to know about them.

“These questions were really developed because we started to realize that people don’t ask these questions of their loved ones, and it’s often the thing you think about when they’re gone,” says Eddy, who personally longs to know stories from her father’s life.

While it’s crucial to record the practical and sentimental information, Lantern must also deliver on keeping it secure. The site uses encryption and currently doesn’t collect information it doesn’t feel equipped to protect, such as passwords, wills, and Social Security numbers.

Instead, its business model is based on referring users to services that specialize in certain products, and which Eddy and Ruderman have personally vetted. For estate planning, Lantern recommends Legal Zoom. To help loved ones close online accounts, it suggests the password manager 1Password. Lantern can receive a referral fee when its customers sign up for such services. Eddy and Ruderman are also exploring pitching Lantern to organizations, like life insurance companies and hospitals, whose clients need the information the site has to offer. They’re making the same case to human resources departments who could use Lantern as a benefit for employees who, like McFarland, don’t know how to start end-of-life planning.

Though Lantern will probably offer a premium subscription to users in the future, Eddy and Ruderman are adamant that its basic how-to content and checklists will never be paywalled.

“We don’t think people should not have access to this information because they do not have means,” says Eddy. 

The company can take that stand because it’s a public benefit corporation, which means it plans to pursue a mission-driven approach while also seeking a return for investors. 

“Our vision is to be the central resource that any one person uses to navigate their life before and after a death.”

Nancy Lublin, an entrepreneur who is the founder and CEO of Crisis Text Line and the former CEO of DoSomething.org, made an angel investment in Lantern. Lublin knows Eddy and Ruderman from their previous roles at Crisis Text Line and DoSomething.org, respectively.

She said in an email that Lantern is poised to serve a “huge untapped market. Millennials, in particular, are bound to find Lantern appealing.

“How the heck are people going to deal when their parents and grandparents (fyi: enormous boomer generations) pass away?” wrote Lublin, noting that millennials use digital tools to find everything from roommates to lovers to marijuana. Of course they’d want something similar to help them manage death.

Eddy and Ruderman are aiming to become the first thing anyone turns to when it’s time to grieve a loved one or plan for the end of their own life.

“Our vision is — and always will be — to be the central resource that any one person uses to navigate their life before and after a death,” says Ruderman. “That is our North Star.

Eddy is buoyed by the possibility that she’s helping others avoid what she experienced following her grandmother’s death: “You don’t have to be forced to pick the first thing you see on Google,” she says.

Complete Article HERE!

Trouble Focusing? Not Sleeping?

You May Be Grieving

“It’s normal and natural to not be able to just go on as usual.”

By R.O. Kwon

I couldn’t understand, at first, why I was having such trouble writing. In early March, following the advice of public-health experts, my husband and I had isolated ourselves with his septuagenarian parents, thinking that we could help them. At the end of each quiet day, I sat buzzing with terror but strangely listless, having accomplished very little. Until recently, I traveled a lot for work: Since publishing my first novel, I’ve often been on the road for speaking, teaching and other book-related gigs.

But now the speaking gigs were all canceled or postponed; my teaching had moved online; I was home. I had nowhere else to go. I had a novel deadline coming up. For so long, in planes, trains and cars, I’d wished to have an uninterrupted stretch in one place where I could really focus on my writing, and now, well, look, I had it.

Are you experiencing grief or loss during the coronavirus pandemic? If so, how are you coping? Let us know in the comments.

But I couldn’t focus. What’s more, news aside, I could barely read. Instead, I ate an unusually large quantity of salt-and-vinegar chips. I was exhausted, but I slept badly, intermittently. I cried. Long-held desires and goals felt hazy, at times irrelevant. The days blurred together; deadlines pressed close. I couldn’t fully recall why I’d ever cared so much about books, words.

Other people who couldn’t stay home were going to work every day — many without the option, the privilege, of doing otherwise — while here I was, home, and I couldn’t, of all things, write. Yes, there’s a pandemic, and yes, I felt by turns anxious, furious, and terrified, but it’s 2020 in America, and I’ve felt quite anxious, furious and terrified for a while. The inability to work, though, was new.

But then it occurred to me, as I ate another astringent chip, that this lassitude, the trouble focusing, the sleep difficulties, my exhaustion: Oh yes, I thought, I remember this. I was grieving. I was grieving in early March, I’m still grieving now, and chances are, you are, too.

Consider how much has already been lost, and how much more we’re likely to lose: the lives already taken by the coronavirus, along with the lives currently in jeopardy, and exponentially more people falling ill every day. The lost livelihoods, the blasted plans. Entire families destitute today who were getting by three weeks ago. Upended routines. Postponed weddings and funerals. Depleted savings. Isolation.

The quickly rising anti-Asian racism, stoked by a cowardly president trying to distract this country from his own negligence. Politicians arguing that our elders should die for the sake of the economy. The exhausted grief of those who already knew full well how hard it can be to be American and marginalized. Jobs vanishing, the jeopardized local businesses — restaurants, bookstores — that make a place home. Whole cities are changing, fast. Well, the whole world is, it seems, and there’s that to grieve, too. I could go on; the list is long. “There’s Grief of Want — and grief of Cold — / A sort they call ‘Despair’ —,” wrote Emily Dickinson, who knew a thing or two about loss.

Does any of this sound familiar to you, and if so, do you know what to do? I didn’t, not really, so I asked an expert, Megan Devine, psychotherapist and author of “It’s OK That You’re Not OK.” Devine points out how relatively unfamiliar we are, in the U.S., to talking about this kind of life-changing pain.

“As a culture, we don’t talk about grief, we don’t make space for sadness,” Ms. Devine says. Now everyone is carrying grief, she believes, but because many Americans weren’t talking about grief before the pandemic, we don’t know how to name it, let alone voice it.

That silence can result in what Ms. Devine calls “epidemics of unspoken grief”: “Everybody’s got pain they’re carrying around, but they never get to say it. It doesn’t go away if you don’t get to say it. It comes out in epidemics of suicidality and depression, social isolation, loneliness.”

More loneliness, even, than what we’re already experiencing, Ms. Devine says. This is, of course, part of the especial cruelty of this pandemic: how it isolates us at a time when, grieving, afraid, we might crave fellowship. This is when we most need to connect with other people, she says, but how to find true, deep connection when we can’t so much as touch anyone we’re not already living with?

“Right now, what we have are words,” Ms. Devine says. “One of the reasons we avoid conversations about grief is because it tends to make us feel helpless, and nobody likes feeling helpless. When we feel helpless, we tend to do things to make the other person’s pain go away so that we can stop feeling helpless.”

This is why, she says, in the face of pain, people so often give unsolicited advice, or try to dismiss pain by saying it could be worse, or that everything happens for a reason: it lets us skirt feeling helpless. Even in the way I first brought up my own pandemic-related grief, I’d gestured at dismissing it: I was sad, but at least I had a schedule that could, in theory, let me write. What if I didn’t need the “but,” the “at least,” what if I didn’t need to try to brush away what I felt by also explaining why I shouldn’t feel as I did?

It’s also possible to use words to listen, Ms. Devine says. “Grief can’t be fixed, but it can be acknowledged,” and acknowledgment is the best medicine. “It seems like it’s too simple to be helpful, but it’s actually often the only thing that works.” For others, but for ourselves, too. With our own grief, Ms. Devine advises that we take time to check in with ourselves, to slow down to name our pain. Not to fix it, since it likely can’t be fixed, but to notice it.

It’s true that, in the midst of a pandemic, finding this kind of time might be challenging. Annika Sridharan is a clinical psychologist and social worker, and the director of Partnership for Trauma Recovery, a Berkeley clinic that works with asylum seekers, asylees and refugees from 45 countries. She notes that in a situation of insecurity, such as what the world is facing now, it can be difficult to attend to mourning and grief while we’re also afraid and anxious. Things are not as usual now, Dr. Sridharan says, and, “It’s normal and natural to not be able to just go on as usual.”

The last time I suddenly found myself in a state of deep grief, utterly unable to go on as usual, I was 17. One day, I lost the all-consuming faith I’d grown up in, with a Christian God I’d loved so much I’d intended to become a pastor, a woman of God. Just like that, the world I’d known shifted, cracked open, and fell apart. I lost a faith, a vocation, a community and salvation all at once, and, for some time, I felt as if I might be the loneliest person alive.

I wasn’t, though, nor am I now. Coronavirus grief is already a vast, monstrous grief, its reach and breadth expanding daily. It’s also a collective grief, a worldwide loss that — physically isolated though many of us have to be — a lot of other people are, in one way or another, also mourning. I hope, in this extraordinarily difficult time, to be better than I’ve been at letting myself mourn. I’ll start at the beginning: This is hard. I hurt. If you’re hurting, too, you’re not alone.

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