Pregnancy apps and online spaces fail to support individuals grieving a pregnancy loss

– Here’s what to do about it

Social technologies perpetuate a single idea of what constitutes a pregnancy.

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Approximately 1 in 4 pregnancies in the United States ends in loss. Pregnancy loss, also referred to as miscarriage, is a common reproductive health complication.

Many experience this loss as a significant life event, with a “before” and an “after.” It can cause depression and post-traumatic stress disorder. Yet society largely stigmatizes and dismisses it by not treating it as a loss that deserves to be grieved.

I research the social implications of technology. For the past several years, I’ve been investigating the intersection of pregnancy loss and social technologies. Search engines, social media, online support groups and pregnancy and fertility tracking apps are some of the technologies people use to manage pregnancies, share experiences or exchange social support.

My recent research shows these technologies often do not account for pregnancy loss and, as a result, can cause re-traumatization and distress.

Harmful designs and algorithms

In a recent study, I conducted in-depth interviews with women in the U.S. who had recently experienced pregnancy loss. I found that pregnancy tracking applications failed miserably in considering pregnancy losses.

Woman faces her laptop, head in hands.
‘Oh, please stop.’

A participant told me, “There’s no way to tell your app, ‘I had a miscarriage. Please stop sending me these updates,’ like, ‘This week, your baby’s the size of a banana or whatever.’ There’s no way to stop those.”

Similarly, advertising algorithms assumed all pregnancies lead to the birth of an alive and healthy baby. Another participant told me, “I was getting ads for maternity clothes. I was just like, ‘Oh, please stop.’”

The design of mobile apps tells a similar story. I conducted an analysis of 166 pregnancy-related apps and found 72% do not account for pregnancy loss at all, 18% offer an option to report a loss without providing any support, and the remaining 10% passively link to outside sources.

Another tool people use during pregnancy and loss journeys are online support groups. While groups dedicated to loss can be sources of social support where people may find emotional validation, connect with others and feel seen and less alone, I found they can also foster invalidating and harmful experiences.

One participant reported seeing questions “like ‘Can you eat this certain thing while pregnant?’ You get some people who say, ‘Yes, I ate that all through pregnancy.’ Then you get some people who say, ‘I can’t believe you’re doing that to your body, that’s harmful for you.’”

Overall, the design features and algorithms that underpin content and interactions do real harm by perpetuating a single idea of what constitutes a pregnancy – one that is smooth and leads to a happy ending. By not accounting for pregnancy loss, I contend they contribute to its further stigmatization.

My work shows how technology design reinforces stereotypes about experiences like pregnancy loss – and sustains social inequities like marginalization and stigmatization. This, in turn, makes it hard for those experiencing loss to find the resources and support they need.

A more humane approach

If you are someone who has experienced pregnancy loss, I am sorry for your loss. Please know that you are not alone. I hope this article helps validate and make visible some of your frustrating experiences.

If you know someone who has experienced a pregnancy loss, know that the harms and challenges I described above are only some of the frustrations they may face. Acknowledge their loss. Ask how you may be able to support them. Get them meals, offer to pet sit or babysit for them, listen to them, sit in their sorrow with them. Know that holidays and anniversaries tend to be tough. Do not say “you will get pregnant again.” Finally, remember that lesbian, gay, bisexual, transgender and queer people also experience pregnancy and loss.

If you are a designer, developer or someone who makes decisions about products and advertising algorithms, I hope this research illustrates some of the real harms users may experience as a result of using products to manage intimate personal experiences like pregnancies. Please consider designing products that consider the full range of pregnancy and other human experiences. Remember that considering pregnancy loss as an outcome does not mean finding other ways to profit from your users’ loss and grief.

Complete Article HERE!

What Is Caregiver Burnout

—And How Can You Prevent It? Here’s What Experts Say

Frequent expressions of anger, sadness, and frustration are possible signs of caregiver burnout.

According to Rosalynn Carter, former first lady of the US, there are only four kinds of people in the world: “those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.” As a decades-long champion for the rights of US caregivers, Carter knows what she is talking about.

There are now an estimated 53 million unpaid caregivers—individuals who care for their elderly, chronically ill, or disabled loved ones—across the country, according to the most recent data from AARP. That means one in five adults in the US acts as a caregiver.

With many families unable to pay for professional care, assuming the role of caregiver is often a necessity rather than a choice. “Families are expected to provide extraordinary care to people with serious illnesses—in most cases without access to disease education, an assessment of their own needs and abilities, [and] the skills to manage complex medical regimes or challenging behaviors and functional declines associated with, for instance, a person living with dementia,” Laura N. Gitlin, PhD, an applied research sociologist and dean of the College of Nursing and Health Professions at Drexel University in Philadelphia, tells Health.

And that can be hard, which means that those who care for their parents, siblings, children, or partners might experience caregiver burnout.

What is caregiver burnout?

A caregiver helps their loved one with daily activities like preparing meals, running errands, bathing, and performing medical tasks such as setting up tube feedings and giving medications. And as if that’s not enough, they often bear the weight of other types of stress, like having to deal with finances and manage doctor appointments for their loved one.

This collective stress is often referred to as caregiver burnout, and it’s all too common, according to Gitlin. “It’s a real phenomenon and shouldn’t be ignored,” she says. “It’s when a caregiver reaches a state of physical, emotional, and mental exhaustion due to ongoing (and in most cases extraordinary) and constant care responsibilities.”

Caregivers who reach this point may feel hopeless and have negative feelings about their situation. If it’s not addressed, it can lead to depressive symptoms, warns Gitlin.

What causes caregiver burnout?

The possibilities are wide—basically, anything you perceive as a stressor in your role as caregiver can lead to caregiver burnout, Martinique Perkins Waters, PhD, assistant professor in the Department of Behavioral Sciences at the University of West Alabama, tells Health.

The burnout could be sparked by the extra financial expenses due to the medical bills of your loved one’s care or all the factors that go into managing medical care, such as scheduling appointments, talking with insurance companies, getting to appointments, refilling prescriptions, and advocating to see specialists. The burnout could be triggered by the emotional toll of watching someone you love in pain and needing to provide constant support to them. Or, maybe the burnout stems from the frustration of feeling like you are losing your own identity as your career, hobbies, and personal goals may be shifted or even stopped due to your caregiving role.

Caregiver burnout often develops after not getting the help you need or not having an opportunity for any respite—or time for yourself—to recover from your care responsibilities, adds Gitlin. Being a caregiver for a loved one can make it difficult to switch “off” from your role, making it hard to find time for sufficient sleep and positive lifestyle behaviors like exercising.

While burnout can happen in any caregiving situation, somebody providing care for a person living with dementia may be at particular risk, Andrea Gilmore-Bykovskyi, PhD, assistant professor at the University of Wisconsin-Madison School of Nursing, tells Health. “Unfortunately, caregivers of people experiencing dementia in particular are often under-prepared and under-supported in their caregiving roles,” she says. “Knowing when, where, and how to seek help can be overwhelming, which can further compound the strain caregivers may be experiencing. It is often more challenging later in the disease course, when the needs of the person with dementia may be more challenging to meet.”

What are the signs and symptoms of caregiver burnout?

Some of the signs of caregiver burnout are very clear, according to Perkins Waters. “Frequent expressions of anger, sadness, and frustration are big red flags, especially when you don’t usually react in this manner,” she says.

Other signs are less clear, as they may manifest as symptoms that look like common chronic illnesses. This may be especially true depending on race. For example, research led by Perkins Waters and published in The Journals of Gerontology found that while African American caregivers are less likely to report being burdened by their caregiving role, the group is actually more likely to have physical manifestations of their caregiving burden, such as increased blood pressure, complications with other chronic illnesses, and cardiovascular issues. “We also know that these issues occur more frequently in the African American population in general so it can get overlooked as a sign of caregiver burnout,” Perkins Waters points out.

Symptoms of depression and anxiety are also very common. “If you are experiencing hopelessness, changes in sleep and/or eating habits, loss of interest in things you usually enjoy, lack of motivation, and feelings of overwhelm or general distress, it is possible you have reached that burnout point,” Perkins Waters says.

How can you prevent caregiver burnout?

Because its repercussions can be severe, preventing burnout is crucial. Perkins Waters’s research found that caregivers who felt that they were under a lot of strain had poorer health outcomes compared to caregivers who felt little or no strain.

“A major contributor to caregiver strain, and ultimately burnout, is the lack of easily accessible systems and resources that support caregivers in these roles,” says Gilmore-Bykovskyi. “For these reasons, it is really important for caregivers to seek support early and often, and even before they feel they need them—so they get help long before the point of burnout.”

This might mean joining a support group, creating a schedule to give you time to yourself every day, seeking professional help from a counselor, or simply taking another person up on their offer of help. If you have a solid support network and regular breaks from your caregiving responsibilities, you can reduce your risk of getting to the point of complete burnout.

“Respite is extremely important,” Perkins Waters says. “If possible, ask members of your family to assist with care. Even if they’re not close enough for day-to-day respite, they can make phone calls for services, search the internet for resources, or even have food delivered to the house so you have one less thing on your to-do list. If you attend a faith-based organization, more than likely there are members or a ministry that can stay with your loved one briefly, help with transportation, assist with groceries, or just come by to talk.”

A good starting point is your local agencies that advocate for senior services. “People often think of the Department of Human Services [DHS] as mainly for child services, but there are adult service programs as well,” says Perkins Waters. The DHS may be able to connect you with resources like adult day care programs, which support your loved one for a short time while you run errands or just go back home to rest.

There may also be non-profits or community organizations in your area that offer respite care. For instance, Alabama Lifespan Respite Resource Network offers vouchers that caregivers use to pay individuals to be with their loved ones in the home for short-term relief and provides resources for mental health counseling and caregiver support groups.

Even if you get this help for your caregiver duties, you still must make it a point to care for yourself, according to Perkins Waters. This means going to routine doctor appointments, talking with a counselor, finding a support group, hanging out with friends, making time for physical activity—in short, all the physical and mental care items we know we are supposed to do.

This is particularly important for caregivers who are parents. As Perkins Waters notes, a lot of caregivers juggle raising children and caring for aging parents. “You may go into the caregiver role expecting ease, as you have raised young children,” she says. “But it is an entirely different situation when you are older yourself and you are caring for an adult who likely raised you. There is more history and experience on both sides; this is a unique journey and taking care of your health will help better prepare you for it.”

If you have the means to pay for it, Gitlin highly recommends at least one consultation with a geriatric social worker who specializes in referral and linkages. The social worker can help you assess your caregiving situation, deal with stressors, and come up with a plan. Being a caregiver is never going to be easy, but it can be easier with the right help and support in place.

Complete Article HERE!

A Guide To Your Financial & Legal Responsibilities After Loss

Loss of a loved one is a difficult time to navigate. Learn how to obtain a death certificate, when to begin reporting the death and more.

Key takeaways:

  • Grief is a natural part of losing a loved one. Having an after-death checklist can take a tremendous burden off your shoulders when it comes time to execute final wishes.
  • Besides making funeral arrangements, you will have to determine if there was a will, report the death to various entities and close financial accounts.
  • You will need certified copies of death certificates to claim the deceased person’s assets, including life insurance policies and brokerage accounts.

Everyone experiences loss at one point or another in life. It’s natural. However, many people underestimate the amount of paperwork involved to settle their loved one’s affairs. From making funeral arrangements to obtaining death certificates, the process can be stressful if you don’t know where to start.

Having a plan in place can help you better navigate this difficult time. You should also reach out to family members and consider obtaining the help of lawyers and certified public accountants (CPAs) to ensure you don’t have to handle everything on your own.

We’ve put together a checklist to help you prioritize your tasks and delegate where needed.

After-Death Checklist: A Guide To Managing Your Loved Ones Death

It can be overwhelming trying to figure out what to do when a loved one dies. Having an after-death checklist can lessen the burden.

Here are some key steps to consider when a loved one dies:

  • Acquire a pronouncement of death
  • Alert friends and family
  • Implement burial plans (based on will or last wishes)
  • Report death to Social Security and other government agencies
  • Obtain certified copies of death certificate
  • Identify all assets and liabilities
  • File insurance claims
  • Determine if there was a will
  • Close bank and brokerage accounts
  • Send copies of death certificate to major credit agencies
  • Terminate memberships and subscriptions that are not in use
  • Terminate health insurance policies
  • Settle a loved one’s outstanding financial debts
  • Notify election office of death

Remember that timing may vary depending on your circumstances. If this was an unexpected death, it may take longer to access all the required information to begin the final arrangements. This is another reason why planning early is important.


Immediately Following The Death Of A Loved One

The first task on your list will be to obtain a legal pronouncement of death. If your loved one died in a hospital, a staff member will provide you with a pronouncement of death form.

The process is different for deaths that occur in the home. You will need to call a medical professional to pronounce them deceased.

Next, you want to alert friends and family of the death. Send out text messages or share on social media to spread the word. Remember to take a careful approach during this step. Use your judgment to determine the best way of informing those who need to know.


What To Do Within The First Week Of Losing A Loved One

The first week can be a whirlwind of emotions and roadblocks without a proper plan in place. Here are some steps you can take to better manage your priorities.

Make funeral arrangements
Your loved one may have recommended what they wish for their last requests. This may include burial and estate planning. Contact their funeral home, make the burial arrangements and determine if there was a prepaid burial plan in place.

If your loved one did not share their last wishes, it might be best to reach out to close family or friends for assistance. Research funeral prices and outline the expected costs. Then, determine how you will pay for the funeral. The Department of Veterans Affairs offers burial benefits for qualified individuals.

Report death to Social Security and other government agencies
The funeral home usually reports a person’s death. If you need to report it yourself, you’ll need to call the Social Security office at 1-800-772-1213 (TTY 1-800-325-0778).

Obtain certified copies of death certificate
You can contact the Vital Records office of the state where your loved one died to obtain copies of the death certificate. You’ll need the certified death certificate to file insurance claims and access bank accounts. You can request at least 5-10 copies of the death certificate. It all depends on the number of assets that your loved one held.

Identify all assets and liabilities
You typically need certified copies of the death certificate to claim assets that may be in your loved one’s name. Here are a few types of assets that you may need to inquire about:

  • Deeds and titles
  • Insurance policies
  • Safety deposit boxes
  • Brokerage accounts
  • Employer benefits
  • Retirement assets

You probably won’t be responsible for any outstanding debt that your loved one left behind. If you co-signed on any type of asset or debt that has gone unpaid, you may be responsible. Many in the family mistake debt as “inherited” when this is not always the case. Money from the estate is used to pay the debt. State laws on inheriting debt may vary, but liabilities commonly go unpaid if there isn’t enough from the estate to pay the debt.

File insurance claims
Reach out to your loved one’s life insurance provider to submit a claim. Here’s the standard process:

  • Contact the insurance company and inform them about the death.
  • The insurance provider will send a packet of forms and instructions to follow.
  • Submit the death certificate and completed forms.
  • The insurer usually pays claims within 30 to 60 days of receiving all requested information.

Determine if there was a will
A will can help you determine how assets should be allocated. It can also help you manage any other requests that your loved one may have had. This includes identifying the executor of your loved one’s estate. The executor is the person appointed to carry out the instructions of the will.

Here are some items to consider:

  • An executor files the will with the probate court. You can consult with an estate attorney for guidance. An executor typically has a limited number of dates to submit this. Check with your probate court for more information.
  • Wills become public record once they have been processed through the County Clerk’s office.
  • The executor must notify the appropriate authorities about the death.

If your loved one died without a will, your state law will determine how assets are managed.


Within The First Month Of Losing A Loved One

There are steps of action that should be taken within the first month following the loss of a loved one. These can vary, depending on how much was prepared initially and where the loved one passed. However, this is a great baseline to follow if you’re unsure.

Close bank and brokerage accounts.
Identify all financial accounts in your loved one’s name. Notify the institutions about the death and provide a certified copy of the death certificate. They will release the funds to the beneficiaries on the account.

Send copies of the death certificate to major credit agencies.
The three major credit-reporting agencies in the U.S. are Equifax, Experian and TransUnion. Report your loved one’s death to the credit agencies to prevent any fraudulent activity. You can find their contact information by visiting the Federal Trade Commission’s consumer information.

Terminate memberships and subscriptions that are not in use.
Check mail, email and bank statements to identify gym memberships or digital subscriptions that need to be canceled. Have account or member ID numbers handy to expedite the process.

Terminate health insurance policies.
If you haven’t already, now is the time to file a claim with your health insurance to ensure the policy has been closed upon the death of a loved one. Contacting the insurance agency should be the best way to get in contact with the claims department and start this process.

Settling a loved one’s outstanding financial debts.
Repaying debts falls on the deceased person’s estate. This is not the responsibility of a particular family member. However, the executor or power of attorney is responsible for paying these debts using money from the estate. This is done by selling assets or using any other funds provided by the estate.

Notify the election office of death.
Notifying the election office of a death does not fall on you directly, as a family member of the deceased. Once you’ve filed for a death certificate, this record is then used to remove deceased participants from the voter registration list.


Who Gets The $255 Social Security Death Benefit?

The Social Security Administration (SSA) provides a lump-sum payout of $255 to qualified individuals following the death of a loved one. In order to receive this benefit, you must first apply by calling the Social Security office at 800-772-1213. The following individuals may qualify if they meet criteria outlined by the SSA:

  • Surviving spouse
  • A widow
  • A surviving divorced spouse
  • An eligible child

What Happens To A Person’s Estate After They Die?

If your loved one has an estate plan, it can save you or a loved one from financial loss or litigation on settling an estate. The estate plan helps families determine what happens after a loved one dies. It typically includes the following items:

  • Will
  • Executor
  • Healthcare directives
  • Beneficiary designations

If there is no estate plan, you’ll need to consult state law for details on who receives assets. Generally, it passes to parents, spouse, children or other relatives.


The Bottom Line

Saying goodbye to a loved one is difficult enough without the stress of sorting through paperwork. The best course of action is to identify the most important steps in the process and move forward from there. Take time to review wills, estate plans and life insurance policies. Don’t forget to seek out help and use the resources available to you. Consult family members and experts to avoid managing the process on your own.


References

Centers for Disease Control and Prevention. (2021). Where to Write for Vital Records.

Federal Trade Commission consumer information. (2021). Free credit reports.

National Conference of State Legislatures. (2021). Voter registration list maintenance

Social Security Administration. (2021). If you are the survivor.

USA.gov. (2021). Find my state or local election office website.


Complete Article HERE!

When a friend dies by suicide

— Preventing suicide contagion

A friend or classmate’s suicide can increase risk for whose who are emotionally vulnerable or see suicide as a way to solve problems.

by

Suicide can shake an entire community. For some kids, a friend or classmate’s suicide increases the risk that they may resort to the same behavior. This risk, known as suicide contagion, can affect people who lived down the street from the person who died, went to school with them, or simply saw them around town.

“After suicide, the person’s closest friends aren’t necessarily the ones at greatest risk,” says Kimberly O’Brien, clinical social worker in the Department of Psychiatry and Behavioral Sciences at Boston Children’s Hospital. “The kids at greatest risk are the ones who are already emotionally vulnerable and those who believe their classmate solved their problems through suicide.” O’Brien is also co-author of Emotionally Naked: A Teacher’s Guide to Preventing Suicide and Recognizing Students at Risk with Anne Moss Rogers.

Here, O’Brien and Boston Children’s psychologist Erica Lee talk about how a classmate’s suicide can affect children and teens and ways parents can help their kids process their feelings.

Risk of contagion in the aftermath of suicide

Any death, particularly a death by suicide, brings up a wide range of feelings: shock, sorrow, anger, and guilt, to name a few. While there’s no right or wrong way to feel, some kids are more vulnerable to suicide contagion than others. “If a kid is already struggling with depression, anxiety, or suicidal thoughts, a classmate’s suicide can exacerbate those thoughts and feelings,” says Lee.

The way people talk about suicide can also increase other students’ risk. For instance, the more details about how the person took their life are made public, the greater the risk that other students may engage in similar behavior.

To reduce such risk, parents and school officials can take a cue from the news media’s suicide reporting guidelines. The voluntary guidelines aim to reduce the chance of suicide contagion by:

  • not focusing on the method or location of suicide
  • not speculating what event or person may have triggered the suicide
  • not suggesting suicide is an understandable response to difficult feelings

This is not to say that parents should try to gloss over a classmate’s death. “Parents should not try to keep the suicide a secret from their kids,” says O’Brien. “You don’t want to focus on the method of death, but don’t take away from the loss of this person by not doing or saying anything.”

Self-care for parents in the wake of suicide

It’s only natural for parents to have a strong reaction when a child dies by suicide. Ignoring such emotions in an effort to appear strong can backfire. “Kids often monitor their parents for signs of distress,” says Lee. “If they think their parent is upset, they might hide their thoughts and feelings rather than upset their parent more.”

Taking time to process their emotions also gives parents a chance to think about what they want to say and how they want to say it, adds Lee. “The conversation may be hard to have, but approaching it in a calm, open frame of mind can reassure your child you will work through this together.”

Open communication to reduce kids’ risk of suicide

O’Brien suggests that parents check in frequently with their child after a classmate’s death by suicide. “A kid might feel fine one day, then it may hit them the next day.” Conversations should leave room for children to explore their feelings about the person who died, suicide, and their own experiences.

Open communication also includes asking kids if they have suicidal thoughts. “Many parents worry that asking a child if they think about harming themself may ‘plant’ the idea in their mind,” says Lee. It doesn’t. By asking the question, parents let children know it’s OK to talk about scary feelings.

Tips for talking with tweens and teens about the death of a classmate by suicide

  • Use clear, straightforward language and leave plenty of room for your child to express their thoughts and feelings.
  • Open the conversation with questions. For instance, ‘What have you heard about what happened?’ and ‘How are you feeling about what happened?’
  • Focus on the fact that the person who died had a psychiatric illness that made it hard for them to think clearly.
  • Avoid judging the person who died or the people close to them. No single event causes suicide.
  • Be ready to hear what your child is thinking and feeling. Remember, everyone responds differently to suicide.
  • Offer reassurance. Most people with suicidal thoughts get support that helps them find other ways to cope with emotional pain.

If your child tells you they think about harming themself, feel hopeless, or is in overwhelming emotional pain, seek help from a mental health professional. If you believe your child is in immediate danger, call 911 or bring your child to the closest emergency room.

Honoring the person who died

Grieving after suicide can be complicated. “It’s important that kids have a way to honor their friend or classmate without reinforcing the idea that dying is a way to gain attention or love,” says Lee.

“To reduce other students’ risk, the emphasis should be on suicide prevention,” adds O’Brien. She suggests working with an organization like the American Foundation for Suicide Prevention to help raise awareness about suicide. Kids can also participate in a fundraiser like an Out of the Darkness Walk or volunteer for a crisis hotline. Any of these activities can help kids acknowledge a classmate’s death while learning about suicide prevention.

If you or your child is in crisis, call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255), or contact the Crisis Text Line by texting HOME to 741741.

Complete Article HERE!

What I Learned About Death From 7 Religious Scholars, 1 Atheist and My Father

By George Yancy

Just a few days before my father died in 2014, I asked him a question some might find insensitive or inappropriate:

“So, what are your thoughts now about dying?”

We were in the hospital. My father had not spoken much at all that day. He was under the influence of painkillers and had begun the active stage of dying.

He mustered all of his energy to give me his answer. “It’s too complex,” he said.

They were his final spoken words to me before he died. I had anticipated something more pensive, something more drawn-out. But they were consistent with our mutual grappling with the meaning of death. Until the very end, he spoke with honesty, courage and wisdom.

I have known many who have taken the mystery out of death through a kind of sociological matter-of-factness: “We all will die at some point. Tell me something I don’t know.” I suspect that many of these same people have also taken the mystery out of being alive, out of the fact that we exist: “But of course I exist; I’m right here, aren’t I?”

Confronting the reality of death and trying to understand its uncanny nature is part of what I do as a philosopher and as a human being. My father, while not a professional philosopher, loved wisdom and had the gift of gab. Our many conversations over the years touched on the existence of God, the meaning of love and, yes, the fact of death.

In retrospect, my father and I refused to allow death to have the final word without first, metaphorically, staring it in the face. We were both rebelling against the ways in which so many hide from facing the fact that consciousness, as we know it, will stop — poof!

We know the fact of death is inescapable, and it has been especially so for the nearly two-year pandemic. As we begin another year, I am astonished again and again to realize that more than 800,000 irreplaceable people have died from Covid-19 in the United States; worldwide, the number is over five million. When we hear about those numbers, it is important that we become attuned to actual deaths, the cessation of millions of consciousnesses, stopped just like that. This is not just about how people have died but also that they have died.

My father and I, like the philosopher Soren Kierkegaard, came to view death as “by no means something in general.” We understood that death is about me, him and you. But what we in fact were learning about was dying, not death. Dying is a process; we get to count the days, but for me to die, there is no conscious self who recognizes that I’m gone or that I was even here. So, yes, death, as my father put it, is too complex.

It was in February of 2020 that I wrote the introduction to a series of interviews that I would subsequently conduct for The Times’s philosophy series The Stone, called Conversations on Death, with religious scholars from a variety of faiths. While my initial aim had little to do with grappling with the deaths caused by Covid-19 (like most, I had no idea just how devastating the virus would be), it soon became hard to ignore. As the interviews appeared, I heard from readers who said that reading them helped them cope with their losses during the pandemic. I would like to think that it was partly the probing of the meaning of death, the refusal to look away, that was helpful. What had begun as a philosophical inquiry became a balm for some.

While each scholar articulated a different interpretation of what happens after we die, it was not long before our conversations on death turned to matters of life, on the importance of what we do on this side of the grave. Death is loss, each scholar seemed to say, but it also illuminates and transforms life and serves as a guide for the living.

The Buddhist scholar Dadul Namgyal stressed the importance of letting go of habits of self-obsession and attitudes of self-importance. Moulie Vidas, a scholar of Judaism, placed more emphasis on Judaism’s intellectual and spiritual energy. Karen Teel, a Roman Catholic, emphasized her interest in working toward making our world more just. The Jainism scholar Pankaj Jain underscored that it is on this side of the veil of death that one attempts to completely purify the soul through absolute nonviolence. Brook Ziporyn, a scholar of Taoism, stressed the importance of embracing this life as constant change, being able to let go, of allowing, as he says, every new situation to “deliver to us its own new form as a new good.” Leor Halevi, a historian of Islam, told me that an imam would stress the importance of paying debts, giving to charity and prayer. And Jacob Kehinde Olupona, a scholar of the Yoruba religion, explained that “humans are enjoined to do well in life so that when death eventually comes, one can be remembered for one’s good deeds.” The atheist philosopher Todd May placed importance on seeking to live our lives along two paths simultaneously — both looking forward and living fully in the present.

The sheer variety of these religious insights raised the possibility that there are no absolute answers — the questions are “too complex”— and that life, as William Shakespeare’s Macbeth says, is “a tale told by an idiot, full of sound and fury, signifying nothing.” Yet there is so much to learn, paradoxically, about what is unknowable.

Perhaps we should think of death in terms of the parable of the blind men and the elephant. Just as the blind men who come to know the elephant by touching only certain parts of it, our views of death, religious or not, are limited, marked by context, culture, explicit and implicit metaphysical sensibilities, values and vocabularies. The elephant evades full description. But with death, there doesn’t seem to be anything to touch. There is just the fact that we die.

Yet as human beings, we yearn to make sense of that about which we may not be able to capture in full. In this case, perhaps each religious worldview touches something or is touched by something beyond the grave, something that is beyond our descriptive limits.

Perhaps, for me, it is just too hard to let go, and so I refuse to accept that there is nothing after death. This attachment, which can function as a form of refusal, is familiar to all of us. The recent death of my dear friend bell hooks painfully demonstrates this. Why would I want to let go of our wonderful and caring relationship and our stimulating and witty conversations? I’m reminded, though, that my father’s last words regarding the meaning of death being too complex leave me facing a beautiful question mark.

My father was also a lover of Kahlil Gibran’s “The Prophet.” He would quote sections from it verbatim. I wasn’t there when my father stopped breathing, but I wish that I could have spoken these lines by Gibran as he left us: “And what is it to cease breathing, but to free the breath from its restless tides, that it may rise and expand and seek God unencumbered?”

In this past year of profound loss and grief, it is hard to find comfort. No matter how many philosophers or theologians seek the answers, the meaning of death remains a mystery. And yet silence in the face of this mystery is not an option for me, as it wasn’t for my father, perhaps because we know that, while we may find solace in our rituals, it is also in the seeking that we must persist.

Complete Article HERE!

A Neuroscientist Prepares for Death

Lessons my terminal cancer has taught me about the mind

By David J. Linden

When a routine echocardiogram revealed a large mass next to my heart, the radiologist thought it might be a hiatal hernia—a portion of my stomach poking up through my diaphragm to press against the sac containing my heart.

“Chug this can of Diet Dr. Pepper and then hop up on the table for another echocardiogram before the soda bubbles in your stomach all pop.”

So I did. However, the resulting images showed that the mass did not contain the telltale signature of bursting bubbles in my stomach that would support a hernia diagnosis. A few weeks later, an MRI scan, which has much better resolution, revealed that the mass was actually contained within the pericardial sac and was quite large—about the volume of that soda can. Even with this large invader pressing on my heart, I had no symptoms and could exercise at full capacity. I felt great.

The doctors told me that the mass was most likely to be a teratoma, a clump of cells that is not typically malignant. Their outlook was sunny. Riffing on the musical South Pacific, my cardiologist said, “We’re gonna pop that orange right out of your chest and send you on your way.”

While I was recovering from surgery, the pathology report came back and the news was bad—it wasn’t a benign teratoma after all, but rather a malignant cancer called synovial sarcoma. Because of its location, embedded in my heart wall, the surgeon could not remove all of the cancer cells. Doing so would have rendered my heart unable to pump blood. The oncologist told me to expect to live an additional six to 18 months.

I was absolutely white-hot angry at the universe. Heart cancer? Who the hell gets heart cancer?! Is this some kind of horrible metaphor? This is what’s going to take me away from my beloved family, my cherished friends and colleagues? I simply couldn’t accept it. I was so mad, I could barely see.

[And now comes the part where I’m weeping while I type.]

Five years ago, I met Dena and we fell for each other hard. This wasn’t mere “chemistry”; it was more akin to particle physics—a revelation of the subatomic properties of love. Dena has uplifted me with her pure and unconditional affection, her kindness, beauty, optimism, and keen intelligence. She is the best wife anyone could want, and she is way better than I deserve. Leaving her behind will be the very hardest part of this whole awful situation.

Until the moment of that diagnosis six months ago, I had been the luckiest man in town. My twins, Jacob and Natalie, have been nothing but a delight for 25 years. I’ve been fortunate to have a long career in academic science with the freedom to pursue my own ideas, which is a gift like no other. My good friends are a constant source of joy and amusement. By any reasonable measure, I’ve had a great life, full of love, creativity, and adventure.

I may be dying, but I’m still a science nerd, and so I think about what preparing for death has taught me about the human mind. The first thing, which is obvious to most people but had to be brought home forcefully for me, is that it is possible, even easy, to occupy two seemingly contradictory mental states at the same time. I’m simultaneously furious at my terminal cancer and deeply grateful for all that life has given me. This runs counter to an old idea in neuroscience that we occupy one mental state at a time: We are either curious or fearful—we either “fight or flee” or “rest and digest” based on some overall modulation of the nervous system. But our human brains are more nuanced than that, and so we can easily inhabit multiple complex, even contradictory, cognitive and emotional states.

This leads me to a second insight: The deep truth of being human is that there is no objective experience. Our brains are not built to measure the absolute value of anything. All that we perceive and feel is colored by expectation, comparison, and circumstance. There is no pure sensation, only inference based on sensation. Thirty minutes fly by in a conversation with a good friend, but seem interminable when waiting in line at the DMV. That fat raise you got at work seems nice until you learn that your co-worker got one twice as large as yours. A caress from your sweetheart during a loving, connected time feels warm and delightful, but the very same touch delivered during the middle of a heated argument feels annoying and presumptuous, bordering on violation.

If someone had told me one year ago, when I was 59, that I had five years left to live, I would have been devastated and felt cheated by fate. Now the prospect of five more years strikes me as an impossible gift. With five more years, I could spend good times with all of my people, get some important work done, and still be able to travel and savor life’s sweetness. The point is that, in our minds, there is no such thing as objective value, even for something as fundamental as five years of life.

The final insight of my situation is more subtle, but it’s also the most important. Although I can prepare for death in all sorts of practical ways—getting my financial affairs in order, updating my will, writing reference letters to support the trainees in my lab after I’m gone—I cannot imagine the totality of my death, or the world without me in it, in any deep or meaningful way. My mind skitters across the surface of my impending death without truly engaging. I don’t think this is a personal failing. Rather, it’s a simple result of having a human brain.

The field of neuroscience has changed significantly in the 43 years since I joined it. I was taught that the brain is essentially reactive: Stimuli impinge on the sense organs (eyes, ears, skin, etc.), these signals are conveyed to the brain, a bit of computation happens, some neural decisions are made, and then impulses are sent along nerves to muscles, which contract or relax to produce behavior in the form of movement or speech. Now we know that rather than merely reacting to the external world, the brain spends much of its time and energy actively making predictions about the future—mostly the next few moments. Will that baseball flying through the air hit my head? Am I likely to become hungry soon? Is that approaching stranger a friend or a foe? These predictions are deeply rooted, automatic, and subconscious. They can’t be turned off through mere force of will.

And because our brains are organized to predict the near future, it presupposes that there will, in fact, be a near future. In this way, our brains are hardwired to prevent us from imagining the totality of death.

If I am allowed to speculate—and I hold that a dying person should be given such dispensation—I would contend that this basic cognitive limitation is not reserved for those of us who are preparing for imminent death, but rather is a widespread glitch that has profound implications for the cross-cultural practice of religious thought. Nearly every religion has the concept of an afterlife (or its cognitive cousin, reincarnation). Why are afterlife/reincarnation stories found all over the world? For the same reason we can’t truly imagine our own deaths: because our brains are built on the faulty premise that there will always be that next moment to predict. We cannot help but imagine that our own consciousness endures.

While not every faith has explicit afterlife/reincarnation stories (Judaism is a notable exception), most of the world’s major religions do, including Islam, Sikhism, Christianity, Daoism, Hinduism, and arguably, even Buddhism. Indeed, much religious thought takes the form of a bargain: Follow these rules in life, and you will be rewarded in the afterlife or with a favorable form of reincarnation or by melding with the divine. What would the world’s religions be like if our brains were not organized to imagine that consciousness endures? And how would this have changed our human cultures, which have been so strongly molded by religions and the conflicts between them?

While I ponder these questions, I am also mulling my own situation. I am not a person of faith, but as I prepare for death, I have a renewed respect for the persistent and broad appeal of afterlife/reincarnation stories and their ultimately neurobiological roots. I’m not sure whether, in the end, faith in afterlife/reincarnation stories is a feature or a bug of human cognition, but if it’s a bug, it’s one for which I have sympathy. After all, how wonderfully strange would it be to return as a manatee or a tapeworm? And what a special delight it would be to see Dena and my children again after I’m gone.

Complete Article HERE!

How your brain copes with grief, and why it takes time to heal

Grief is tied to all sorts of different brain functions, says researcher and author Mary-Frances O’Connor. That can range from being able to recall memories to taking the perspective of another person, to even things like regulating our heart rate and the experience of pain and suffering.

by Berly McCoy

Holidays are never quite the same after someone we love dies. Even small aspects of a birthday or a Christmas celebration — an empty seat at the dinner table, one less gift to buy or make — can serve as jarring reminders of how our lives have been forever changed. Although these realizations are hard to face, clinical psychologist Mary-Frances O’Connor says we shouldn’t avoid them or try to hide our feelings.

“Grief is a universal experience,” she notes, “and when we can connect, it is better.”

O’Connor, an associate professor of psychology at the University of Arizona, studies what happens in our brains when we experience grief. She says grieving is a form of learning — one that teaches us how to be in the world without someone we love in it. “The background is running all the time for people who are grieving, thinking about new habits and how they interact now.”

Adjusting to the fact that we’ll never again spend time with our loved ones can be painful. It takes time — and involves changes in the brain. “What we see in science is, if you have a grief experience and you have support so that you have a little bit of time to learn, and confidence from the people around you, that you will in fact adapt.”

O’Connor’s upcoming book, The Grieving Brain, explores what scientists know about how our minds grapple with the loss of a loved one.

Interview highlights

On the grieving process

When we have the experience of being in a relationship, the sense of who we are is bound up with that other person. The word sibling, the word spouse implies two people. And so when the other person is gone, we suddenly have to learn a totally new set of rules to operate in the world. The “we” is as important as the “you” and “me,” and the brain, interestingly, really does encode it that way. So when people say “I feel like I’ve lost part of myself,” that is for a good reason. The brain also feels that way, as it were, and codes the “we” as much as the “you” and the “I.”

On the difference between grief and grieving

Grief is that emotional state that just knocks you off your feet and comes over you like a wave. Grieving necessarily has a time component to it. Grieving is what happens as we adapt to the fact that our loved one is gone, that we’re carrying the absence of them with us. And the reason that this distinction makes sense is, grief is a natural response to loss — so we’ll feel grief forever. A woman who lost her mother as a young person is going to experience that grief on her wedding day because it’s a new moment where she’s having a response to loss.

But “grieving” means that our relationship to that grief changes over time. So the first time, maybe even the first 100 times, you’re knocked off your feet with grief, it feels terrible and awful and unfamiliar. But maybe the 101st time, you think to yourself, “I hate this, I don’t want this to be true. But I do recognize it, and I do know that I will get through the wave.”

On the emotions involved in grieving

The range of emotions that someone experiences when they’re grieving is as long a list as the range of emotions we have in any relationship. Commonly there’s panic, there’s anxiety, there’s sadness, there’s yearning. But what we sometimes forget is that there’s also difficulty concentrating and confusion about what happens next.

I am often struck by the intensity of the emotions. Grief is like someone turned up the volume dial all of a sudden. The emotion that I think often interferes with our relationships and friendships when we’re grieving is anger, because the anger feels so intense. You have someone blow up at a dinner party and you think, “What’s happening with them?” And then to try and remember, “Oh, they’re grieving and everything is amped up a little bit.”

On what is happening in our brains

We have neuroimaging studies basically of grief, of the momentary reaction where you have that emotional yearning experience. There are less than a handful of studies looking at more than one moment in the same person across time — so looking at their grieving trajectory. What we know right now in these early days of the neurobiology of grief is really coming from snapshots.

Having said that, one of the things that we know is that grief is tied to all sorts of different brain functions we have, from being able to recall memories to taking the perspective of another person, to even things like regulating our heart rate and the experience of pain and suffering. So lots of different parts of the brain are orchestrating this experience that we have when we feel grief.

On prolonged grief

When you’re knocked over by that wave of grief, you want to know, “When will this end?” From a research perspective, there is a very small proportion of people who might have what we now call prolonged grief disorder, something we start looking for after six months or a year [after a death or loss]. … And what we are seeing, [in such cases], is that this person has not been able to function day to day the way that they wish that they could. They’re not getting out the door to work or getting dinner on the table for their kids or they’re not able to, say, listen to music because it’s just too upsetting. So these types of concerns … suggest it would be helpful to intervene and get them back on the healing trajectory where they will still feel grief, but they will adapt to it differently.

The older term that we were using for a long time was “complicated grief.” And although prolonged grief disorder is the term we’ve settled on, there’s a reason that I like the term complicated — because it makes you think of complications.

As an example, one of those is the grief-related rumination that people sometimes experience. The better term for that that people will recognize is the “would’ve, should’ve, could’ve” thoughts. And they just roll through your head over and over again. The problem with these thoughts — we sometimes call “counterfactuals” — is that they all end in this virtual scenario where the person doesn’t die. And that’s just not reality. And so, by spinning in these thoughts, not only is there no answer — there are an infinite number of possibilities with no actual answer of what would have happened — but it also isn’t necessarily helping us to adapt to the painful reality that they did die. And so our virtual version is not really helping us to learn how to be in the world now.

It’s less than 10% of people who experience prolonged grief disorder. And what that means is 90% of people experience difficult grief and suffering, but don’t have a disorder after losing a loved one. I think it’s so important to remember that … because we don’t want to hide grief away … in a psychiatrist’s office or a counselor’s office, except in indications where that would be helpful to get people back on track.

On how to support grieving people in your life

I think when you care for someone who is going through this terrible process of losing someone, it really is more about listening to them and seeing where they’re at in their learning than it is about trying to make them feel better. The point is not to cheer them up. The point is to be with them and let them know that you will be with them and that you can imagine a future for them where they’re not constantly being knocked over by the waves of grief.

On losing people to the pandemic

One of the topics I think is not much in the national conversation is that so many of the deaths of our loved ones happened in hospitals, emergency rooms and ICUs — and we weren’t there to see it. And that is for a very good reason, because we were trying to stop the spread of COVID. So having family members in hospitals did not make sense.

But it means that people are without these memories of watching their loved one become more ill and watching those changes that happen in their body that prepare our mind for the possibility that they might die. To go through that process without those memories makes it much harder to learn what has happened. So many people feel it hasn’t really sunk in yet that they’re gone.

What I don’t hear very often is the fact that with COVID, the loved ones that are left behind made the sacrifice of not being with their loved ones in the hospital in order to stop the spread. And that sacrifice needs to be recognized, I think. In part to help people heal, so that it’s understood why they’re having such a difficult time. And to elevate the understanding that they did something for the greater good — and they gave up something while they did it.

Complete Article HERE!