Category: Death Education

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When a Grandchild Asks, ‘Are You Going to Die?’

With the coronavirus largely affecting people who are grandparent-aged, it’s a good time to talk with children about death.

By Paula Span

My granddaughter was a few months past 3 years old when she first asked the question, as we sat on the floor playing with blocks.

“Bubbe, are you going to die?”

Nobody is as blunt as a toddler. “Yes, I am going to die one day,” I said, trying to remain matter-of-fact. “But probably not for a very long time, years and years.”

A pardonable exaggeration. Bubbe (Yiddish for grandmother) was 70, but to a kid for whom 20 minutes seemed an eternity, I most likely did have a lengthy life expectancy.

My granddaughter, Bartola (a family nickname, a nod to the former Mets pitcher Bartolo Colon), was beginning to talk about the deceased ladybug she found at preschool. Make-believe games sometimes now featured a death, though a reversible one: If an imagined giant gobbled up a fleeing stuffed panda, he would just spit it out again.

So I wasn’t shocked by what a psychologist would call a developmentally appropriate question. I did mention our conversation to her parents, to be sure they agreed with the way I handled it.

Such questions resurfaced from time to time, even before something she knows as “the virus” closed her school and padlocked the local playground. Though her parents talk about hand-washing and masks in terms of keeping people safe, not preventing death, even preschoolers can pick up on the dread and disruption around them.

Long before the pandemic, it occurred to me that grandparents can play a role in shaping their beloveds’ understanding of death. The first death a child experiences may be a hamster’s, but the first human death is likely to be a grandparent’s.

With tens of thousands of young Americans now experiencing that loss — most coronavirus fatalities occur in people who are grandparent-aged — it makes sense to talk with them about a subject that’s both universal and, in our culture, largely avoided.

Parents will shoulder most of that responsibility, but “grandparents have lived a long time,” said Kia Ferrer, a certified grief counselor in Chicago and a doctoral fellow at the Erikson Institute in Chicago, a graduate school in child development. “They’ve been through historical periods. They’ve lost friends.” We’re well positioned to join this conversation.

But that requires setting aside our own discomfort with the topic when talking to children. “It’s symptomatic of our society that we get nervous about what we tell them and how we’ll react,” said Susan Bluck, a developmental psychologist at the University of Florida who teaches courses on death and dying.

“But if they’re asking questions, they want to know,” she added. If we shy away, thinking a 4-year-old can’t handle the subject, “the child is learning that it’s a bad thing to ask about.”

We want kids to understand three somewhat abstract concepts, Dr. Bluck explained: that death is irreversible, that it renders living things nonfunctional, that it is universal.

We don’t need to prepare a lecture. “Only answer what they’re asking and then shut up,” advised Donna Schuurman, former executive director of The Dougy Center in Portland, Ore., which works with grieving children. “Listen for what they’re thinking. Let them digest it. The next response might be, ‘OK, let’s go play.’”

What and how much our beloveds understand depends on their ages and development, of course. Kids Bartola’s age will have trouble grasping ideas like finality.

They also tend to be awfully literal: My daughter, who knew better but spoke in the moment, once explained the Jewish custom of sitting shiva by saying that the family was going to keep their sad friend company because she had lost her father. “She lost him?” Bartola said wonderingly. “Did he blow away?” Oops, take two.

But 5- to 7-year-olds can think more abstractly. “That’s when they start understanding the cycle of life and the universality of death,” Ms. Ferrer said. And kids 8 to 12 “have an adultlike understanding,” she said, and may want to know about specifics like morgues and funeral rites.

What each age requires of us, experts say, is honesty. Euphemisms about grandpa taking a long trip, being asleep or going to a better place, create confusion. If someone died of illness, Ms. Schuurman advises naming it — “she got a sickness called kidney failure” — because kids get sick too, and we don’t want them thinking every ailment could be fatal.

Ms. Ferrer talks about a loved one’s body not working anymore, and medicine not being able to fix it. Even kindergartners know about toys that no longer work and can’t be repaired.

Nature can be helpful here. On walks, I’ve started pointing out to Bartola the flowers that bloom and then die, the leaves changing color and falling. A lifeless bird in the driveway presents an opportunity to talk about how it can’t sing or fly anymore.

Ms. Schuurman endorses small ceremonies for dead creatures. Wrap the bug or bird in a handkerchief or put it in a box; say a few words and bury it. “Let’s honor this little life,” she said. “It sets an example of reverence for life.”

Psychologists favor allowing children to attend the funerals of beloved humans, too, with proper preparation. In some families, religious beliefs will inform the way adults answer children’s questions.

The professionals I spoke with suggested some material to help grandparents with this delicate task. Ms. Ferrer is a fan of Mr. Rogers’s 1970 episode on the death of a goldfish and the 1983 “Sesame Street” episode in which Big Bird comes to understand that Mr. Hooper isn’t ever coming back.

Complete Article ↪HERE↩!

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Sometimes a ‘Good Death’ Is the Best a Doctor Can Offer

Despite everything we do, we have lost so many battles with Covid-19

By Dr. Hesham A. Hassaballa

There has been so much clinician distress with the Covid-19 pandemic. So many physicians, nurses, and health care professionals have suffered physical, emotional, and moral difficulty taking care of severely sick patients. Some have even committed suicide.

As an ICU physician, I feel this firsthand and believe the reason for the anguish is that we, as critical care doctors and nurses and health professionals, are used to making a difference in the lives of our critically ill patients. Yes, we do lose some patients despite all that we do. But, for the most part, the majority of the patients we see and care for in the ICU get better and survive their critical illness.

Covid-19 has upended all of that.

Before Covid, I would not think twice about placing someone on a ventilator. It is a life-saving measure. With Covid, however, many patients who go on ventilators never come off. This is very distressing.

It is just so hard to try and try and try — spending many waking and sleeping hours — to help these patients pull through, only to have them die on you. Many times, the deaths are expected. Sometimes they are not, and those deaths are the most difficult to bear.

We are used to seeing death in the ICU. It is inevitable that some patients, despite all that we do, are going to die. With Covid, however, it is different. So many have died, and what makes it so hard is that these people are dying alone. Their families are only left to watch them die, if they so choose, on FaceTime or Skype. I’ve lost a daughter to critical illness. I cannot imagine the horror of not being able to be there at her side.

I was speaking to a fellow ICU doctor, and he told me that it seems all he is doing in the ICU is ensuring a “good death” for his patients, and this has deeply bothered him. He is not used to this amount of death. None of us are. It is very, very hard.

Is there any such thing as a “good death”?< It seems oxymoronic that the words “good” and “death” can be juxtaposed. As doctors, our whole existence is to prevent our patients from dying. So, in one sense, there is no such thing as a “good death.” To be sure, I have seen plenty of “bad deaths” in the ICU. Of course, those include patients whose death was unexpected. At the same time, there are patients who we know (despite everything we do) will not survive. In those cases, we do our best to make sure the patient does not suffer. If a patient dies while suffering pain or distress, or they get care that is not consistent with their values and wishes, then — to me, at least — this constitutes a “bad death.” But, indeed, there can be a “good death.”

None of us knows when or where we are going to die… If, however, we can die with comfort, without pain, without distress, and with complete dignity, then that is sometimes the best outcome.

As a doctor, especially an ICU doctor, it is awesome to see our patients do well and survive critical illness. It gives me an indescribable feeling of warmth and joy, and it is the fuel that keeps me going for a very long time. This joy has only been amplified during the Covid crisis. Watching one of our patients — who was very sick and I thought for sure going to die — walk out of the hospital on his own made me absolutely ecstatic.

Sadly, however, that experience has been fleeting with Covid, which has been so disheartening. Yet, even in death, there is an opportunity to do good. Even in death, we can do all that we can to ensure our patients die in peace, without pain, without suffering, and with the dignity they deserverecent study found that approximately 25% of patients experienced at least one significant pain episode at some point in the last day of life. More than 40% of patients experienced delirium. Delirium is an altered state of consciousness, and as ICU doctors, we work very hard to minimize this experience in our patients. In more than 22% of ICUs in America, there were high rates of invasive therapies at the time of death. Almost 13% of patients were receiving CPR at the time of their death, and more than 35% of patients died on a ventilator.

If getting CPR or being on a ventilator will only prolong suffering, or if either is not consistent with a patient’s wishes or values, then I — as their physician — must do everything I can to ensure this does not happen.

When I speak to families on the phone, trying to comfort them in the face of the death of their loved one, I promise this one thing: “I promise you that your loved one will not suffer. I promise you that I will make sure they are not in pain or in distress.” It doesn’t make the death of their loved one any easier, I know, but it is the absolute least I can do to make a horrible situation better.

None of us knows when or where we are going to die. Many (if not most) of us do not know what will cause our death. Those factors are beyond our control. If, however, we can die with comfort, without pain, without distress, and with complete dignity, then that is sometimes the best outcome. That is a “good death.”

And if it is inevitable that a patient will die, and I can help that patient die a “good death,” then that is my job. And in that duty, there is some good, some light, in the overwhelming darkness of this pandemic.

Complete Article ↪HERE↩!

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Coronavirus reminds you of death

– and amplifies your core values, both bad and good

Gustav Klimt’s ‘Death and Life’ suggests the way many people are unaware of death’s ever-present influence.

By &

There’s nothing like a worldwide pandemic and its incessant media coverage to get you ruminating on the fragility of life. And those thoughts of death triggered by the coronavirus amplify the best and worst in people.

The results of this psychological phenomenon are all around: people hoarding toilet paper and hand sanitizer, hurling ethnic slurs and attacking Asian Americans, heaping praise or scorn on President Trump, hailing new political and health care heroes. Sheltering at home has drawn some families closer together, but is a crucible of domestic violence for others. For many, social distancing has increased feelings of isolation, boredom, anxiety and despair.

What’s behind these attitudinal and behavioral shifts?

Back in 1986, we first developed an idea called terror management theory that explains how people double down on their essential beliefs, without even noticing, when confronted with their own mortality.

Hundreds of psychology experiments from the past 30 years have explored how people react to the thought of their own death. These reminders bolster people’s core worldviews, making racists more hateful, the religious more devout, the charitable more giving and constituents more suportive of charismatic leaders.

At a moment when the idea of death is front and center for many people, this psychological tendency has important implications for everything from how grocery store cashiers are treated to how people will vote in the upcoming presidential election.

No one gets out alive

Terror management theory acknowledges that human beings are animals biologically predisposed to try to survive. But at the same time, people also realize how dangerous the world is, how vulnerable we are and that ultimately the quest for continued existence is doomed to fail.

Knowing that we will all die, and it can happen at any time, can give rise to potentially paralyzing terror. To manage this fear, people work to see themselves as valuable contributors to a meaningful universe. Viewing yourself as an important worker, entrepreneur, teacher, artist, scientist, lawyer, doctor, parent, spouse and so forth allows you to feel like you’re not just a material creature who will disappear upon death.

Rather than dwelling on that disturbing thought, you can believe in things like immortal souls, in your offspring carrying on your genes and values or in your work having an enduring impact. It’s comforting to believe that some part of you will continue after death, through your connections to your family, profession, religion or nation.

Thoughts of death lead people to cling more tightly to these soothing beliefs. Such thoughts can be triggered by simply reading a news story about a murder, being reminded of 9/11 or even glancing at a funeral home sign.

Death reminders first trigger immediate, front-line defenses – you want to feel safe by getting death out of your mind right away. Then subconscious downstream defenses work to fortify the protective bubble of the symbolic reality you believe in. Researchers have found that these downstream defenses include more punitive reactions to criminals, increased rewards for heroes, prejudice toward other religions and countries and allegiance to charismatic politicians.

Pandemic provides nonstop reminders of death

Because of the coronavirus, death reminders are all around. Front-line reactions range from efforts to shelter at home, maintain social distancing and wash hands frequently to dismissing the threat by comparing it to the flu or calling it a political hoax meant to undermine the economy and thwart President Trump’s reelection effort.

People who are more optimistic about their coping skills and have confidence in health care providers are prone to react constructively. They typically follow the recommendations of health care experts.

But people prone to pessimism and skepticism regarding health care authorities are more likely to deny the threat, ignore recommendations and react hostilely to expert advice.

These first-tier defenses banish death thoughts from consciousness, but do not eliminate their influence. Instead the thoughts linger just outside your attention, triggering downstream defenses that reinforce your valuable place in your world.

One way to enhance your value is through contributing to and identifying with heroic efforts to defeat this threat. That can happen via your own behavior and by lauding those leading the charge, such as first responders, health care workers, scientists and political leaders. Even those who inhabit social roles not usually given their due are recognized as heroes: grocery cashiers, pharmacists and sanitation workers.

At the same time, many people question their value more because of the pandemic. Earning a living to provide for one’s family and connecting with others are fundamental ways to feel valuable. Pragmatic health and economic concerns and impoverished social connections can combine to threaten those feelings of meaning and value. In turn they can increase levels of anxiety, depression and mental health problems.

Existentially threatening times also tend to create heroes and villains. American scientists, like Anthony Fauci, and political figures, like New York Governor Andrew Cuomo, are more widely admired. President Trump’s approval rating temporarily increased. In times of crisis, people typically turn to their leaders, and put additional faith in them.

At the same time, people also seek to assign blame. Some turn their fear and frustration about the coronavirus that first emerged in China into hate toward Asians and Asian Americans. Others, depending on their political leanings, blame the World Health Organization, the mainstream media, or President Trump.

Even if the coronavirus abates, thoughts of mortality will linger on the fringes of consciousness as the November election approaches. If President Trump is perceived as a heroic wartime president who got the country through the worst of this invisible enemy, such death reminders could work to his advantage.

If, however, the president is viewed as an incompetent bungler responsible for the virus spreading and the economy collapsing, the same death reminders could undermine his chances.

We’re all in this together

If you’re interested in trying to short-circuit some of these unconscious defenses, our research suggests a few promising possibilities. Maybe the best approach is to consciously acknowledge your mortal fears. By doing so, you can gain some reasoned control over their influence on your judgments and behavior.

We also suggest keeping in mind that all human beings are one interdependent species sharing the same planet. Recognizing that the coronavirus poses the same existential threat for all of us helps underscore that humanity is a group we all belong to. It’s by working together and not turning on each other that we will be able to recover our economic, physical and psychological vitality.

Complete Article ↪HERE↩!

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I’m an oncologist with terminal cancer, and I support medical aid in dying.

Here’s why.

As my cancers progress, I want to be in charge. I want the legal option to die, if need be, before it is too late to consent to my own death.

By Dr. Tom R. Fitch

Remarkable advances in medical care are helping us live longer. But that means there also are an increasing number of people living with advancing serious illness.

The vast majority understand they are living with a terminal condition, yet they and their families are unprepared for the final stages of life. Relatively few have had discussions with their physicians about their prognosis and end-of-life care options. Their wishes and goals are not discussed, and no meaningful informed consent regarding further disease-directed treatments is provided.

“Let’s try this,” becomes the default recommendation, and patients are commonly led down a path of relentless disease-directed therapies of limited to no benefit. Tragically, more treatment too often results in more suffering and shortened survival.

With the expert end-of-life care currently available, dying and death can be meaningful and peaceful for many. But to believe all deaths are “natural” – peaceful and without suffering – is just wrong.

I cared for patients with cancer for more than 30 years and increasingly provided palliative and hospice care over the final 17 years of my career. I saw agonizing deaths despite my best efforts, and it was not rare for patients to ask me how I might help accelerate their dying. That, however, was not an option in either Minnesota or Arizona where I practiced.

Patients must understand their options

Now, I too am faced with terminal illness. I have multiple myeloma and non-Hodgkin’s lymphoma, and despite aggressive care, I have not achieved remission. My cancers are incurable.

I contemplate dying and my death and those thoughts include consideration of medical aid in dying. I do not know if I would ever self-administer a lethal dose of medications, but I pray that the option is available for me.

I do know that we must help patients and families overcome the taboo of discussing their prognosis, dying and death. We need to facilitate meaningful end-of-life care conversations among patients, their families and health-care providers; promote the completion of advance directives; and encourage discussions of patients’ wishes, goals and values.

Patients and families must be informed of the many end-of-life care options available – including the expertise of palliative care and hospice providers, discussions regarding the possibility of stopping disease-directed therapies, withholding or withdrawing more advanced supportive care and/or devices, voluntarily stopping eating and drinking, and palliative sedation.

Patients near the end of their life also should have access to medical aid in dying (MAID).

What medical aid in dying laws do

I fully respect the conscience of those who oppose MAID; they are opposed for passionately held personal beliefs and values. I simply ask that they similarly respect my strongly held beliefs and values.

Guidance in the American Medical Association Code of Medical Ethics understands this divide: “it encompasses the irreducible moral tension at stake for physicians with respect to participating in assisted suicide. Supporters and opponents share a fundamental commitment to values of care, compassion, respect, and dignity; they diverge in drawing different moral conclusions from those underlying values in equally good faith.”

MAID is now legal in nine states and the District of Columbia, available to more than 70 million residents. After nearly 50 years of real-word experience, there has been no evidence of the “slippery slope” or “increased societal risk” opponents routinely cite.

We have seen no indication of a heightened risk for women, the elderly, poorly educated, the disabled, minorities, minor or those with mental illness. There has been no rising incidence of casual deaths and no evidence to suggest that MAID has harmed the integrity of medicine or end-of-life care.

MAID laws clearly provide adequate safeguards and allow for the position of dissenting physicians. The laws respect their conscience and give the right to any physician not to participate.

This is patient-centered care

Those of us who support MAID are asking for the same – respect for our conscience and considered judgment. We do not believe we are doing harm. We are caring for a competent adult who has a terminal illness with a prognosis of six months or less. We are providing patient-centered care consistent with the patient’s wishes, goals, beliefs and values – helping that patient avoid protracted, refractory and avoidable suffering.

One false narrative espoused by opponents – that “participation in MAID is suicide” – needs to be addressed. Participants do not want to die. They have a progressive terminal illness, and meaningful, prolonged survival is no longer an option.

They have full mental capacity with an understanding of their disease, its expected course and their prognosis. They have the support of their family. They feel their personhood is being destroyed by their illness, and they want their death to be meaningful and peaceful.

None of this is true for people who die by suicide.

Personally, I no longer struggle with the ethics, morality and other controversies surrounding MAID. Ethical principles and moral laws alone are just not sufficient to answer the complex questions surrounding an individual’s dying and death.

Our diverse country and our Constitution forbid us from imposing our own religious and faith beliefs on others. When we try, we are forcing others to conform to our beliefs and we are turning a blind eye from truly seeing the very real human suffering that is in front of us.

It is devastating for patients if we ignore their life stories, their family, their culture, and the impact of their disease and treatment on their life and well-being. The value of their life, as they define it, has vanished and they want to die on their own terms.

This is not a challenge to God’s divine sovereignty but a challenge to the disease itself. Patients are vowing that it will no longer be in charge.

As my cancers progress, I too want to be in charge. I want the legal option to die, if need be, before it is too late to consent to my own death. I desperately want to avoid recruitment into that borderland where I would vegetate as neither here nor there.

I ask for your unconditional trust and I ask that those opposed to MAID for themselves, respect my prayerful discernment and personal requests for end-of-life care as I believe it is consistent with my needs, beliefs and values.

Complete Article ↪HERE↩!

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How to Offer Condolences in an Instagram Comment

Covid-19 deaths are being announced everywhere. Is “I’m so sorry” ever enough?

By Jocelyn M. DeGroot

Over 100,000 Americans have died from the coronavirus, and thanks to social media, many of us who aren’t personally in mourning are digitally connected to someone who is. Especially for people in the hardest-hit areas, death announcements in Facebook statuses, Instagram posts and tweets seem more frequent than they’ve ever been.

While social-distancing requirements have limited funerals and burials, sharing condolences online is as easy as ever — or at least it should be. But I worry that people will keep scrolling and fail to reach out — or worse, make hurtful comments — because they are simply overwhelmed by the scale of loss.

Because I’ve studied grief for nearly 15 years, I’m often asked what to say to a person whose loved one has died, and my response is always the same: Recognize the loss. And let the person have their grief.

The pandemic has made that advice even more salient.

But what if the grieving person is someone who has appeared in your feed for years but you haven’t talked with since high school? What if he or she is just a casual acquaintance or a former co-worker? What if you exchange likes on each other’s posts but haven’t met in person?

I repeat: Recognize the loss. And let the person have his or her grief.

When you see the bad news, don’t delay, deliberate or draft and redraft responses you’ll never send. “I’m sorry for your loss” or “I’m thinking of you” are perfectly good messages. I always advise sharing a favorite memory of the deceased, but if you don’t have one, it is fine to say, “I didn’t know your loved one personally, but I wanted to let you know I’m thinking about your family.”

If you’re thinking friends and family members who are closer to the mourning person will handle the comforting words, don’t be so sure.

The writer Nicole Chung, who recently lost her mother, said in a tweet, “One thing I’d almost forgotten from grieving my dad: you can suffer an enormous loss and hear almost nothing from people you thought you were close to, while near-strangers come out of the woodwork and send you the most life-giving messages.”

You could be one of those near-strangers.

With the absence of physical contact and proximity being limited to six-foot distances, grieving people will miss out on the important psychological aspects of touch and physical presence, exacerbating the grieving process. Many will be at home alone. So your words matter more than ever.

Preliminary findings from a study I conducted with Dr. Heather Carmack have revealed that the statements most appreciated by people after the death of a loved one are those that acknowledge the person’s grief or offer tangible help: I’m sorry for your loss; My condolences on the death of …; Deepest sympathies; Praying for you and your family (if they are religious).

Our participants also welcomed hearing memories of their loved ones. You can share these even if your recollections come from stories shared on Twitter or photos you’ve seen in your social feeds over the years.

When you navigate to the comments or replies to leave a message, you might see that others had the same idea and posted something similar to what you planned to say. That’s OK. Your words don’t need to be unique. I’ve learned that people often scroll through social media comments not to glean unique insights but simply to remind themselves that people support them — so the specific message is less important than the fact that the message is there.

But please remember not to make the loss about you. I’ve observed that at times, people who only tangentially know the deceased post extensive messages about the death, tagging close family members. Researchers have called this behavior “grief-lite” or “grief porn,” and it’s a practice born in the social media age. I call it emotional rubbernecking, and you should avoid it.

Our study’s preliminary findings indicated that the most damaging messages to bereaved people were those that marginalized the death in some way, causing the grief to become disenfranchised. Trite sayings such as “Only the good die young” or “God must have needed another angel” are decidedly not helpful. Admit that the death was terrible, the current circumstances are terrible, and if you don’t know what to say … say that.

Comments like “At least she lived a full life,” “I know how you feel,” “You still have your husband” are not supportive. Instead, these comments invalidate the person’s grief.

Remember that people are fearful that others will forget their deceased loved ones. You can make sure that’s not true, even as the number of people lost recently is so great. Make a comment now. Send a message in a month. Send another in six months. And when the pandemic is over, when the food photos and political debates remain but the tragic announcements are less frequent, reach out, recognize the loss and let the person have his or her grief, yet again.

Complete Article ↪HERE↩!

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How Dying Taught Me to Live

By Brad Dell 

His little ribs rose, then fell, then rose, then fell, then stayed still. The spark left his green, curious eyes — I swear it wasn’t a trick of the light. They were dull … dead.

I loathed myself for letting my first cat be put to sleep without me by her side. I swore I’d be there for my second when he passed less than a year later. I swore I’d look him in the eye, even if it meant nothing to him. And so I did.

The odd thing was that he wasn’t afraid. He was calm. He’d spent a good life of hunting, cuddling, and lounging. He knew his place in nature’s cycle. I didn’t understand that. Not then.

But my time came.

Sepsis destroyed me. As my soul ripped loose from my bones, I gasped to my girlfriend that I loved her but I would soon need to die. Then I pissed the bed. I realized that dying isn’t romantic like in the movies. I stank from rolling around in a soiled, sweaty bed, and my voice was hoarse from begging for an end.

While death isn’t romantic, it can be peaceful. In my time, I’ve known many who have passed — they’re either ready or they’re not. I wasn’t yet ready. I was ugly and bitter in my death, outraged by the unfairness of this world.

Somehow, I survived.

The paradox of death is that it teaches you how to live. The tragedy of death is not everyone gets a chance to apply what they’ve learned.

I woke up in an unfamiliar world. All details seemed illuminated and emotions felt overwhelmingly potent. I cried a lot more, hugged a lot more, prayed a lot more, loved a lot more.

Former priorities fell away; ambition, money, and comfort lost their gleam. Each day during recovery, I composed an obituary in my head: “Boy dies of cystic fibrosis. He had caustic humor, good grades, and a decent savings account.” I craved depth and vowed to thrive with passion and weave a legacy of compassion.

Did my old friend know I’m sorry for calling him fat in fifth grade? Did my sister know I look up to her? Did my parents know I regret every single time I lashed out at them? Did everyone know that I mostly only pretended to love, yet always yearned to learn its power?

I lay in my soiled bed and tried recalling instances in which I’d helped people out of love rather than for the potential of a self-serving debt. I sobbed at the realization that I’d lost myself long, long ago. In prayer, I begged for redemption, for help with becoming the Brad I was designed to be.

It’s been 47 months since that prayer. I’m nowhere close to perfect, but I’m far from who I was. Today, my joy comes from expressions of vulnerability, wide smiles and belly laughs, the bonds forged through struggle, the light in people’s eyes, the warmth of another body, the tears poured in prayers, the little acts of love and the big acts of love, the feet that tap along to music, the winding conversations over meals, the exhilaration of adventure, the richness of sharing nature and sunsets with strangers.

I am ready to die, when that time comes again, though I’d love to learn even more about life with a third pass. Death is liberating, driving me to be fully present and live intentionally for the things that truly matter.

Like my old cat, I know my place in nature’s cycle. Mine is to love and be loved in return. Maybe that seems sappy to those who haven’t yet died. But one day you’ll understand, too.

Complete Article ↪HERE↩!

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I put off explaining death to my autistic son.

Covid-19 convinced me I couldn’t wait any longer.

By Whitney Ellenby

Whitney Ellenby is the author of “Autism Uncensored: Pulling Back the Curtain,” founder of the charitable venture Autism Ambassadors and a former Justice Department disability rights attorney.

Even before I uttered a word, my son knew something was off.

My flustered movements alerted him to a shift in equilibrium in the house. The statewide coronavirus shutdown had just been announced, and as I struggled to wrap my head around the profound adjustments I needed to make, the fear of a grave illness was rivaled by an entirely different threat: How would I explain the crisis to my profoundly autistic 19-year-old son?

Zack’s language and comprehension are truncated; he has no conspicuous understanding of global adversity, personal sacrifice or collective safety.

The stakes of being truthful were greater than you might imagine. I’ve gone to extraordinary lengths to ensure that Zack fully participates in his community, even forcing him to remain at indoor venues he feared such as movie theaters, restaurants and airplanes. My “inclusion by fire” methods feel vindicated by the fact that Zack regularly navigates the world with competence and zeal.

But there is one dire exception — his absolute intolerance of unexpected closures. Zack has no interest in the reason: All venues should be open according to his schedule. Delivering news of a sudden closure — of a splash park shut due to lightning, a movie sold out — is perilous. In seconds, Zack lashes out in frustration. Sometimes I absorb the blows and hold my ground to enforce upon him the reality that disappointment is a part of life; more often I scramble for alternatives to distract him.

And now I couldn’t. For a young man whose life quite literally revolves around predictable schedules and recreation, virtually everything he depended upon had been eviscerated overnight.

In March, I sat Zack down and explained: “Zack, I need you to listen to me, something very scary is happening. You know how awful it feels to be sick? Well, a sickness is spreading across the whole world, and our job is to help keep people safe. So for now, school is — closed. Movies are closed. Indoor pools are ….”

I braced for impact, but instead Zack studiously began echoing the refrain of “closed.” I was astonished. In the weeks that followed, Zack’s ability to adapt to his constricted life far exceeded my expectations and reinforced my decision to tell him the truth.

Except I had not told him the whole truth. Zack had no notion that, as he rode his bike carefree against the wind, people were dying. Zack had no concept of death. Because I hadn’t summoned the courage to explain it to him.

I’ve always considered my most important job to be arming Zack with the knowledge and experience to function as competently as possible in the world, especially after my husband and I are gone. But I have not prepared him for the fact that we will be gone. As I listened to stories of beloved mothers and fathers dying, I was gripped with heartbreak and fear — would I further postpone and hope neither of us got sick?

That felt immoral. It was time.

“Zack, I need to tell you something serious,” I began. “Many people are getting sick, and some of the people who go into the hospital to get help will not get better. They will die from this sickness.” Zack is a literal thinker who deals in absolutes and concrete visuals, not abstractions. So in response to his quizzical stare, I turned on the TV to still frames I had taped of body bags being moved into a truck.

“Zack, these bodies are ….”

“Sleeping?” he asserted, tentatively.

“Broken?” he then offered, borrowing a concept he applies to objects that I’ve reassured him would soon “be fixed.” Dreading his response, I answered, “No, they are not asleep or broken, they are dead. They will not wake up. They were too sick to be fixed. They are ….”

“Closed,” he whispered gravely.

A huge exhale escaped me. “Yes, Zack, they are closed,” I said, explaining through tears that this happens to every person at some point, that their life comes to an end. And how, even when people die, as hard as it is, the rest of us have to keep living without them.

Zack became still. His countenance darkened as he processed my words — and then suddenly he lashed out. But the target was the TV, with its cruel, wintry images of death, as Zack smashed his fists into the screen and even his own head. The universe was once again disordered and the outcome unacceptable to him. I interrupted the exertion not to comfort Zack but to redirect his blows toward a wall sturdy enough to absorb them. He was incredibly infuriated, which felt entirely appropriate. More essentially, with each strike I was certain the excruciating lesson was being slowly, agonizingly absorbed.

So far, Zack has not openly made the intellectual leap that this state of permanence, which is “closing” the lives of so many right now, will one day end mine and my husband’s. That he will one day lose us, but must persist. Now is not the time to make that linkage, but it will come. Engraved into his consciousness of how the world operates is a new notion that while some closures are temporary and fixable, others are unchangeable. For now, that is enough.

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