Orphaned in adulthood —

“Losing both your parents doesn’t get any easier”

There are painful and sometimes unexpected feelings associated with losing both parents in adulthood.

By Caron Kemp

If it’s possible to have a good death, that’s how I’d describe my mum’s. Within the unlikely surroundings of a quietly attentive intensive care unit, she went peacefully, flanked by her family. It was a mere five months after her cancer diagnosis and none of us believed that the Large B-Cell Lymphoma coursing through her blood, lungs and chest would beat her. But the chemotherapy regime was gruelling, rendering her weak and even more ill at every dose and the final bout of pneumonia proved too much.

I was just 33 and juggling three young children of my own, yet as I sat vigil at her bedside in her final hours, all I wanted was to be scooped up into the arms that once cradled me, to be looked after.

A mummy’s girl to my core, I looked like her, shared many of her quirks and, in her latter years, doted on her as she endured more than her fair share of poor health. Yes, we bickered and, yes, she drove me mad regularly – but my mum was my biggest cheerleader. Even when I failed my driving test over and over again, or felt like I was falling apart at university, she was on hand to remind me of my worth.

Her death hit me hard. However long we’d lived with the realities of hospital visits and hushed conversations, living without her wasn’t an option. The funeral passed in a daze and once everyone else’s world carried on turning, I was left fumbling in the dark for a way to carry on.

Stoic to the end – I’ll never forget the final thumbs-up sign my mum gave as she was put into an induced coma – here was my lead. She never lamented her situation, and neither would I. Her greatest riches in life were her family and I knew all she’d want was for myself and my sister to rally around my dad; her soulmate of more than 35 years, himself bereft and broken-hearted.

“I was left fumbling in the dark for a way to carry on”

So, I poured all my energy into him. I sobbed until I physically hurt, I sought her out in the feathers that landed at my feet, and I got my first tattoo in a big ‘screw you’ to the world. But my dad gave me purpose. Thus, when he was diagnosed with a rare blood cancer exactly two years after my mum died, the cruelty of the situation wasn’t lost on me.

In the seven months that followed, I watched the wisest man I knew become reduced to a shadow of himself; frail, dependant and scared. In the last four weeks – played out from a small, clinical hospital room – life existed in a vacuum, where fear was palpable.

My dad’s death was not a good one. Riddled too with pneumonia and sepsis, I was woken in the middle of the night to news that he’d had a heart attack. He died before we could get to him. It was Mother’s Day.

It was my sister who first helped me try on the title of ‘orphan’ for size. But a fully-fledged adult, juggling a career and motherhood, I felt like the proverbial square peg. Yet here I was, without the greatest anchor in my life, and somehow the shoe began to fit.

Losing both parents is not the same as losing one, twice over. When my dad died, I didn’t just lose him. I lost my identity as someone’s daughter, I lost the family and friends only connected to me through them, and I lost anything standing in the pecking order between me and my own demise.

Plus, without my dad to anaesthetise my pain, I found the wound of my mum’s death finally laid bare too. It was all too much and for weeks I couldn’t muster a tear; numb to the earthquake that had ruptured my world as I knew it.

Life since has been punctuated with plenty of difficult days, but my first birthday without either parent was the toughest yet. However hard it was receiving a card signed solely from my dad, receiving nothing stung so much more. I spent the day at home in my pyjamas, because some things can’t be fixed and at times it’s ok to feel crushed.

Before my dad died, I’d always found camaraderie in others walking a similar path. But this was unchartered territory and it was a very lonely place to be. People tried to empathise. Like the friend of my dad’s – himself in his 70s – who told me he ‘knew exactly how I felt’ having recently lost his second parent. Grief is not a competition, but I can tell you – comparing two completely different experiences hurts.

“There are so many questions that now have no answer and so much I wish I could still weave into our family tapestry”

As someone who struggles with vulnerability, being honest about my feelings is a constant work in progress, yet opening up to the rare few individuals who don’t wipe away my tears, who hear what I say and what I don’t and who share my newfound dark and often inappropriate sense of humour, has been fantastically medicinal.

There are so many questions that now have no answer and so much I wish I could still weave into our family tapestry. But no one leads a perfectly curated life; it’s what we do with our pain that makes the difference.

Losing my parents has been an incalculable, lasting blow, but it’s also been surprisingly freeing. Without anyone to be my guide, I’ve emerged into a new stage of adulthood; finding out who my truest, deepest self is, what serves me well and what really matters. At times it’s been ugly, I’ve been very angry and I’ve lost and found many relationships along the way.

I am also, though, acutely aware of how short and precious life is and I’m more motivated than ever to live mine fully – with my parents’ values and spirit carried with me in my heart.

Complete Article HERE!

The surprising benefits of contemplating your death

Now is the perfect time to face your fear of mortality. Here’s how.

By

Nikki Mirghafori has a fantastically unusual career. After getting a PhD in computer science, she’s spent three decades as an artificial intelligence researcher and scientific advisor to tech startups in Silicon Valley. She’s also spent a bunch of time in Myanmar, training with a Buddhist meditation master in the Theravada tradition. Now she teaches Buddhist meditation internationally, alongside her work as a scientist.

One of Mirghafori’s specialties is maranasati, which means mindfulness of death. Mortality might seem like a scary thing to contemplate — in fact, maybe you’re tempted to stop reading this right now — but that’s exactly why I’d say you should keep reading. Death is something we really don’t like to think or talk about, especially in the West. Yet our fear of mortality is what’s driving so much of our anxiety, especially during this pandemic.

Maybe it’s the prospect of your own mortality that scares you. Or maybe you’re like me, and thinking about the mortality of the people you love is really what’s hard to wrestle with.

Either way, I think now is actually a great time to face that fear, to get on intimate terms with it, so that we can learn how to reduce the suffering it brings into our lives.

I recently spoke with Mirghafori for Future Perfect’s limited-series podcast The Way Through, which is all about mining the world’s rich philosophical and spiritual traditions for guidance that can help us through these challenging times.

In our conversation, Mirghafori outlined the benefits of contemplating our mortality. She then walked me through some specific practices for developing mindfulness of death and working through the fear that can come up around that. Some of them are simple, like reciting a few key sentences each morning, and some of them are more … shall we say… intense.

I think they’re all fascinating ways that Buddhists have generated over the centuries to come to terms with the prospect of death rather than trying to escape it.

You can hear our full conversation in the podcast here. A partial transcript, edited for length and clarity, follows.

Sigal Samuel

You’ve worked in Silicon Valley and you still live near there, so I’m sure you’ve encountered the desire in certain tech circles to live forever. There are biohackers who are taking dozens of supplements every day. Some are getting young blood transfusions, trying to put young people’s blood in their veins to live longer. Some are having their bodies or brains preserved in liquid nitrogen, doing cryopreservation so they can be brought back to life one day. What is your feeling about all these efforts?

Nikki Mirghafori

It’s the quest for immortality and the denial of death. Part of it is natural. Human beings have done this for as long as we have been conscious of the fact that we are mortal.

A person who really put this well was Ernest Becker, the author of the seminal book The Denial of Death. I’d like to offer this quote from him:

This is the paradox. A human is out of nature and hopelessly in it. We are dual. Up in the stars and yet housed in a heart-pumping, breath-gasping body that once belonged to a fish and still carries the gill marks to prove it. A human is literally split in two. We have an awareness of our own splendid uniqueness in that we stick out of nature with a towering majesty, and yet we go back into the ground a few feet in order to blindly and dumbly rot and disappear forever. It is a terrifying dilemma to be in and to have to live with.

There is a whole field of research in psychology called terror management theory, which started from the work of Ernest Becker. This theory says that there’s a basic psychological conflict that arises from having, on the one hand, a self-preservation instinct, and on the other hand, that realization that death is inevitable.

This psychological conflict produces terror. And how human beings manage this terror is either by embracing cultural beliefs or symbolic systems as ways to counter this biological reality, or doing these various things — cryogenics, trying to find elixirs of life, taking lots of supplements or whatnot.

It’s nothing new. The ancient Egyptians almost 4,000 years ago, and ancient Chinese almost 2,000 years ago, both believed that death-defying technology was right around the corner. The zeitgeist is not so different. We think we are more advanced, but it comes from the same fear, same denial of death.

Sigal Samuel

It seems like in the West, we really have a bad case of that denial. I think we rarely talk about death or are willing to face up to the reality that we’re going to die. We seem to be wanting to always distract ourselves from it.

You are a Buddhist practitioner and you have a practice that is very much the opposite of that, which is mindfulness of death, or maranasati. You’ve done trainings and led retreats around this subject. But some people might say this is too morbid and depressing to think about. So before we actually delve into the mindfulness of death practices, could you entice us by telling us a few of the benefits of doing them?

Nikki Mirghafori

First and foremost, what I found for many people, myself included, is that facing the fact that I am not going to live forever really aligns my life with my values.

Most people suffer what’s called the misalignment problem, which is that we don’t quite live according to our values. There was a study that really highlighted this, by a team of scientists, including Nobel Prize winner Daniel Kahneman. They surveyed a group of women and compared how much satisfaction they derived from their daily activities. Among voluntary activities, you’d probably expect that people’s choices would roughly correlate to their satisfaction. You’re choosing to do it, so you’d think that you actually enjoy it.

Guess what? That wasn’t the case. The women reported deriving more satisfaction from prayer, worship, and meditation than from watching television. But the average respondent spent more than five times as long watching television than engaging in spiritual activities that they actually said they enjoyed more.

This is a misalignment problem. There’s a way we want to spend our time, but we don’t do that because we don’t have the sense that time is short, time is precious. And the way to systematically raise the sense of urgency — Buddhism calls it samvega, spiritual urgency — is to bring the scarcity of time front and center in one’s consciousness: I am going to die. This show is not going to go on forever. This is a party on death row.

Sigal Samuel

So the approach here is to bring to the forefront of our consciousness how precious our time is, by impressing upon our minds how scarce it is. And that helps align our life with our values.

Are there other benefits to practicing mindfulness of death?

Nikki Mirghafori

The second benefit is to live without fear of death for our own sake. That way, we don’t engage in typical escape activities. And it frees up a lot of psychic energy. We have more peace, more ease in our lives.

The third benefit is to live without fear of death for the sake of our loved ones. We can support others in their dying process. Usually the challenge of supporting a loved one is that we have a sense of grief for losing them, but a lot of that grief is actually that it’s bringing up fear of our own mortality. So if we have made peace with our own mortality, we can be fully present and support them in their process, which can be a huge gift.

My mom passed away two years ago. And for me, having done all of these practices, I could be with her by her deathbed, holding her hand and supporting her so that she could have a peaceful transition. She didn’t have to take care of me so much and console me. She could be at peace and take delight in this mysterious process that we just don’t know what it’s like. It might be beautiful, might be graceful. We don’t know — there might be nothing; there might be something.

Sigal Samuel

Now I feel sufficiently enticed to learn about the actual practices of mindfulness of death. Let’s start with one that seems simple: the Five Daily Reflections, sometimes called the Five Remembrances, that are often recited in Buddhist circles. Would you mind reciting those?

Nikki Mirghafori

Happy to. These are the Five Daily Reflections that the Buddha suggested people recite every day.

Just like everyone, I am of the nature to age. I have not gone beyond aging.

Just like everyone, I am of the nature to sicken. I have not gone beyond sickness.

Just like everyone, I am subjected to the results of my own actions. I am not free from these karmic effects.

Just like everyone, I am of the nature to die. I have not gone beyond dying.

Just like everyone, all that is mine, beloved and pleasing, will change, will become otherwise, will become separated from me.

Allow whatever arises to come up. It’s okay. These contemplations can bring a lot up. So just be with them as much as possible.

Sigal Samuel

I’ve done these reflections before, but every time I do them, I notice that some are much harder for me to absorb than others. The fourth one — I’m of the nature to die — does not terrify me. Maybe that’s weird, but that’s not the one that really scares me. The one that I find impossibly hard is the fifth one. Everyone that I love and everything that I love is of the nature to change and be separated from me.

It’s really the death or the separation from the people I love that I find much harder to face than the death of myself. Because if I’m going to die, you know, then I’ll be gone. There won’t be any me to miss things.

Nikki Mirghafori

Yes. So appreciate and make space for the one that really touches you.

Also I would say that with the fourth one, making peace with our own death, I’ve done the practice and sometimes I’m like yeah, sure, whatever. And then I’ve really stayed with it, and thought, “This could be my last breath.” When the practice really takes hold and becomes alight with fire, it’s like, “Oh, my God, I am going to die!” It really hits home.

Sigal Samuel

Just to clarify, this is a separate mindfulness of death practice, where you contemplate with every breath, “This could be my last inhale. This could be my last exhale.”

Nikki Mirghafori

Yes. And to bring the historical context into it: This particular teaching is what’s called maranasati. Marana is death in Pali, the language of the Buddha. Sati is mindfulness. The mindfulness of death sutra, that’s where the Buddha taught it, and it’s actually quite a lovely teaching.

The Buddha comes and asks the monks, “How are you practicing mindfulness of death?” And one of them says, “Well, I think I could die in a fortnight, in a couple weeks.” Another one of them says, “Well, I think I could die in 24 hours.” Or “Well, I could die at the end of this meal.” Or “Well, I could die at the end of this bite of food I’m eating.” And another one says, “Well, I could die at the end of this very breath.”

And the Buddha says, “Those of you who said, two weeks, 24 hours, whatever — you are practicing heedlessly. Those who said right at this breath, you are practicing heedfully, correctly. That is the practice.”

There are ways to really bring the sense of immediacy and urgency to all this. It’s not out of the question that there could be an aneurysm or that a meteor could just hit the Earth in this moment. Use visualizations; be creative.

Sigal Samuel

Another thing I find really helpful is remembering the idea of impermanence. Which, of course, is the theme of our whole conversation — that our whole life is impermanent — and that’s a very central Buddhist teaching. But also any emotion that I’m feeling is impermanent. So if I’m feeling an intense surge of fear as I do a practice, that’s impermanent, too.

Nikki Mirghafori

Yeah, I love that. When I teach impermanence, there are little impermanences that come and go, and then there is the big impermanence, which is your life! I’m chuckling because this is a case where impermanence is on your side. Impermanence is just a rule of how things run in this world. It’s impersonal. It’s just the way things are. But in our perspective, it’s either working for us or against us.

Sigal Samuel

Can you tell me about another kind of contemplation — the “corpse contemplation” or “charnel ground contemplation”? Charnel grounds are these places where, after people have died, their bodies are left to decay above ground, to rot in the open air. And Buddhist monks would go and observe them up close, right?

Nikki Mirghafori

Many monks do that, especially in Asia. In order to become more intimate with a sense of mortality, the practice is to go to the charnel ground and to actually see a corpse. And the contemplation is: My body, this alive body, is just like this body that is decaying. It’s in different stages of being a body, of decomposing.

A specific practice in the Buddhist canon is to contemplate a corpse in different stages of decay. This particular practice requires a sense of stability of mind. Do the other ones first. I only teach it on a retreat when there’s a container of safety, holding people and supporting them through it.

Sigal Samuel

I definitely have not yet worked myself up to doing corpse contemplation by looking at images of actual human corpses. But when I go for a walk, whenever I see a dead bird or squirrel or mouse that’s been run over in the road, I actually pause and take a minute to look at it. I’m trying to ease my way into this practice.

Nikki Mirghafori

Brilliant. Similarly, another informal practice I wanted to share is having a memento mori. Like a little skull, or those bracelets that are all skulls. I just drew on a little Post-It a skull and bones, and posted it on my computer monitor, so I would remember: Life is short. I’m going to die.

I’ve had various memento moris on my desk throughout the years, and I invite people to have them. They don’t have to be sophisticated. On a piece of paper, just write out, “Life is short” or “You are going to die” or “Traveler, tread lightly.” Whatever works for you to keep death in your perspective. And I think it’s good to switch memento moris around so that your mind doesn’t get used to seeing the same thing all the time.

Sigal Samuel

I’m glad you brought this up because I was going to say the corpse contemplation reminds me a lot of that memento mori tradition, which is a centuries-long tradition in Christianity. So many different religious traditions have emphasized the importance of meditating on our death and have devised ways like the memento mori to try to keep forcing the ego to recognize its looming demise.

Nikki Mirghafori

Yes. And I know that for me, I feel most alive and I feel happiest and I feel most connected with myself, when I’m aware of my death. If it happens for a day or two that it’s not in the forefront for whatever reason, I’m not as bright, as sharp, as alive. So I just love bringing it back. It enlivens me. It supports me to live more fully and hopefully die with more delight and joy and curiosity.

Sigal Samuel

I’m wondering if you can help me with something else. I mentioned earlier that I’m not really scared of my own death so much, but I am scared of the death of the people I love. And especially during the pandemic, I think that’s causing a lot of anxiety for me and probably a lot of others. We’re scared about the potential death of our grandparents, our parents, our friends. Is there a way to free ourselves of the overwhelming fear of their death?

Grief is a natural part of the process. However, it is complicated by our own seen and unseen fear of death. So I invite you to actually work with the practice of making peace with your own death. That’s what’s underlying it. Even if you think you’re not afraid of your own death, you probably are.

When people are really at peace with their own passing, there is a different perspective. There’s a different way of being with the fear or sadness of losing others. There is still a pain of loss, but it shifts.

Complete Article HERE!

‘Spiritfarer,’ a game about the afterlife, seeks to ease the terror of death

“Spiritfarer”

By Elise Favis

“Goodbye, my friend,” said a deer named Gwen, holding me close in a final embrace as we sailed into the blood red waters of the River Styx. Despite the intense color of the sea, and the intensity of the moment, I felt calm. Flower petals drifted on the surface of the water, and white, lush trees swayed in a tranquil way. Gwen disappeared into thin air.

“Spiritfarer,” a game releasing later this year (on several platforms including Switch, PlayStation 4, Xbox One, PC and Stadia), is about guiding spirits to the afterlife. It hopes to make the subject of death comfortable, even cozy, by focusing on relationships and care in people’s last moments while guiding them to the other side. After playing for an hour, I came away feeling hopeful and uplifted, even after experiencing its somber themes.

You play as Stella (or Daffodil, her accompanying cat, if you’re player-two via local or online co-op), a young girl who becomes a new spirit guide to the dead after Charon, inspired by the ferryman of Hades in Greek mythology, retires from that same position. You sail a fantastical world, gathering spirits and convincing them to board your ship. You help them through their problems and encourage them to accept their fates. For creative director Nicolas Guérin, building a death-positive game was cathartic; a way to cope with his own mortality as well as the passing of loved ones.

“I’m terrified of dying,” Guérin told The Washington Post in a recent interview. “I’m terrified of leaving my daughter behind me. I’m terrified of losing my friends and my family.”

His whole team drew inspiration from their experiences with losing someone. The characters in the game are each inspired by grandparents, uncles and friends who died. They’re not “carbon copies,” Guérin said, but composite characters; a mix of traits, personalities, feelings and anecdotes derived from connections they’ve had with deceased loved ones.

Guérin and his colleagues at indie studio Thunder Lotus Games had “no idea at first” if they could pull off themes of death positivity in a management sim, saying he “lucked out” with how it all came together. He said it was important to combine normal, mundane tasks with the “extraordinarily, terribly gruesome moment we face when we know we’re going to die.”

In “Spiritfarer,” your ship evolves over time as you build different structures on top of one another like eclectic towers. Some of these are temporary homes for the spirits you gather, and others are stations for cooking, harvesting, gardening and more. Each character wrestles with something. A lion couple, for example, struggles to find happiness together when one of them is unfaithful. Others, like Stanley, a talking and walking mushroom with childlike traits, just wants to be cared for, so I made him his favorite meal: french fries. Some just want to be hugged. You spend time on and off the ship, completing quests for these spirits and finding out more about Stella along the way, too.

It isn’t just through mechanics that “Spiritfarer” achieves a sense of serenity. The game has a calming atmosphere, with a striking art style inspired by Japanese painter Hiroshi Yoshida and from whimsical Hayao Miyazaki films like “My Neighbor Totoro.” This world about death is bright and colorful, rather than dark and morbid.

Having spent 15 years in the games industry, much of that time at Ubisoft working on franchises like “Assassin’s Creed,” Guérin wanted to explore death in a way that forces the player to think about it outside the bounds of a game. Instead of a fail state mechanic, death in “Spiritfarer” is the key to progress. Every time a character dies, they leave behind a room filled with beautiful, overgrown flowers. It’s a symbol of heritage, Guérin explained.

“You need to actually gather some of these flowers that are used as a token to pay a shark, to build upgrades on the ship,” Guérin said. “And those upgrades will allow you to go across specific barriers like ice or rocks.”

Guérin’s brother is the chief of staff for a geriatric ward in southern France. During early development for the game, Guérin spent a significant amount of time “documenting and understanding” what people think and feel during their final moments by meeting patients in hospice and end-of-life care facilities. As he visited the terminally ill, he noticed their drive to experience human connection or enjoy a peaceful moment. He wanted to convey this in “Spiritfarer,” rather than have characters give grand speeches or make sweeping life changes as they faced death.

“They just want to still wake up in the morning, brew themselves some coffee and spend time with their family, relatives and friends. And that’s it,” he said.

Complete Article HERE!

How I Spent My Summer Vacation 2020

Only the most avid readers of this blog may recall a similarly titled posting, How I Spent My Summer Vacation, from August 1, 2016.

St. Joseph Hospital Main Campus

Well, here it is nearly five years later and I have another harrowing experience to tell you about.

Three months ago, I started having some pain in my left shoulder while walking. (Actually, the shoulder pain started three years ago. But after a stress test scheduled by my GP a year ago, to confirm if this was discomfort was heart related, and the test coming back negative, I decided that the pain was structural. I just figured that I had bursitis.) In fact, all symptoms disappeared after the stress test. Go figure!

Anyhow, the shoulder pain reappeared in March. This time around, it began to radiate down my arm. Soon I couldn’t do any kind of walking, let alone hiking, without discomfort. This was a bit of a problem because I’m an avid walker. Two months ago, the shoulder pain began to radiate not only down my arm but into my arm pit and then into my chest and back.

By this time even I knew that this wasn’t no stinkin’ bursitis.

At the behest of my GP, I reached out to my cardiologist again. I had just had a major pain episode that nearly brought me to my knees, and I wanted his input. At the appointment the cardiologist showed only minor concern. He said he wanted me to do another stress test in 30 days and then see him again in six weeks, the end of July. I couldn’t believe it. I was exhibiting all the classic symptoms of angina and I thought I needed more than a promise of a stress test and a follow visit.

At the end of the appointment, as the doctor was leaving the exam room, I said; “What am I supposed to do about all this crippling pain?” “Oh,” he replied, “I’ll write you a prescription for nitro glycerin. When you begin to experience pain, pop a tab under your tongue. This will give you relief.” And so, it did. It was kinda miraculous actually.

Problem was, I needed to pop a tab at least once a day, often twice a day.

When my GP discovered that I was doing so much nitro, he became very proactive. He ordered a chest x-ray, a CT scan, and some blood work. He wanted to rule out lung problems among other things.

When my first nitro glycerin script was nearly exhausted, I call the cardiologist for a refill. His nurse freaked out at the amount of nitro I was taking and said; “Nitro glycerin is supposed to be used sparingly, for emergencies.” I replied; “Well, then I’m having emergencies each and every day, and often twice a day.”

Apparently, this nurse’s concern lit a fire under my cardiologist. She told me that the doctor now wanted me to skip the stress test, still weeks in the future, and come in for an angiogram. He had an opening on July 2nd. Could I last two more weeks? I didn’t think so.

Meanwhile, my GP wanted me to consult with another cariology practice in Bellingham, 45 miles from where I live. Since I had lost all confidence in the local cardiologist, I agreed. In a matter of hours, I was set up with the PeaceHealth cardiology practice. I was to call the next day and set up an appointment with the next available cardiologist. Things were that critical. Last Friday morning I called and set up an appointment for the following Tuesday.

PeaceHealth Logo

My GP also insisted that I call 911 if my pain increased.

That night, Friday night, it did. Despite popping two nitro glycerin tabs in three hours I was still in acute pain and short of breath.

At about 10:30pm I woke up Steve and asked him to drive me to Emergency Receiving at Island Hospital.

Once in the ER, I was immediately strapped to a heart monitor, blood was drawn, and arrangements were made to medivac me to St Joseph Hospital in Bellingham. The first blood test revealed normal levels of the cardiac enzyme which measures the levels of enzymes and proteins that are linked with injury of the heart muscle. I thought that was good news. Four hours later, still in the Island Hospital ER, there was another blood draw. This time the cardiac enzyme reading had spiked. The doctor told me I must have had a heart attack in the interim.

I languished for ten hours in the Island Hospital ER. They were having a problem finding transportation to Bellingham.

At 9:30am Saturday morning I was finally on my way to St. Joe’s.

Once there, I was placed in the Cardiac ICU where I was poked and prodded to within an inch of my life. I also got an echocardiogram. I had had no food or water since the previous evening. I was exhausted and, I’ll admit, frightened.

Being the good little end of life educator that I am, I had the foresight to bring along a copy of my POLST (Physician Orders for Life-Sustaining Treatment) form. The ICU nurses were so surprised that I had this important document with me. They said they never see patients being this proactive.

At the top of the POLST form, the very first question asked is about Cardiopulmonary Resuscitation Orders. One can either choose: YES CPR: Attempt Resuscitation, including mechanical ventilation, defibrillation and cardioversion (or) NO CPR: Do Not Attempt Resuscitation. I had chosen the second, NO CPR. I hadn’t come to this decision lightly, but it did reflect my deepest held feelings about end of life care for myself.

Later that afternoon I had my first encounter with the cardiac surgeon. He sauntered into my room as brusque as you please and announced that he wouldn’t even consider the life-saving treatment I needed, an angioplasty, if I didn’t change my POLST form to allow a full code should complications arise during the procedure. I was absolutely stunned! I was being held hostage at this most vulnerable point of my life. And for what?

Cardiac surgeons are at the pinnacle of the medical pantheon and most have egos that surpass their bountiful skills. They almost never encounter resistance from anyone, least of all from a lowly patient. But I stood my ground.

“Are you telling me that you won’t save my life if I don’t grant you a full code?”

He responded; “Yes, my hands are tied.”

I couldn’t believe my ears. I tried to explain why I had chosen the DNR (Do Not Resuscitate). He just blew me off. He was so condescending and patronizing. My efforts to defend my choices fell on deaf ears. I could just imagine him thinking; how adorable is this? A layman trying to play doctor with the big boys? The standoff continued.

“Why do we even have POLST forms?” I asked.

“They are for emergencies.” He responded.

“So, and EMT (Emergency Medical Technician) or an ER doc would be constrained by my POLST, but not you, a cardiologist? I see! Actually, I don’t see. This is ridiculous.”

He just stared at me.

You know how this is gonna end, huh?

In the end I sheepshly relented. What could I do? I was so bummed.

The cardiologist walked out of the room without another word and I had no idea where I stood.

Hours later, I asked one of the nurses; “Will I be getting the angiogram, or not?” He didn’t have an answer. Nothing like adding anxiety to an already overburdened heart.

Around 6:00pm two burly nurses stopped outside my room with a gurney. “Let’s get you up here.” One said pointing to the gurney. “What’s going on?” I asked. “Time for your angioplasty.” And just like that I was wheeled off.

I guess it was determined that my case was critical, and no time could be wasted in attending to me, POLST form be damned. My echocardiogram showed a major blockage in my already weakened heart. An hour and a half later I was the recipient of two brand-spankin’ new heart stints, don’t cha know.

Heart Stent

I’ll spare you the gory details of my recovery. I’ve gone on too long already. Suffice to say that with the assistance of a cohort of amazing nurses and other support staff, I am here to relate this story to you. God bless ‘em all!

There are a lot of lessons to be learned here, not least of all is our right to choose the end of life path we desire despite the pressures of conflicting interests. And how we ought to stick to our guns because our wishes are sacred all bullying aside. But the biggest lesson and…

The Moral Of This Story Is
My friends, life is short! Live every day like it’s your last. Be kind to yourself and those around you. Because, in a twinkling of an eye, it can and WILL be over.

The End

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

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!

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.

Complete Article HERE!

In the Coronavirus Crisis, I Can’t Visit My Sick Mother

—So I Wear Her Perfume Instead

By

I woke up terrified last Friday. Or was it last Thursday? Maybe yesterday. Today?

Each day bleeds into the next when in social isolation to hinder the spread of the novel coronavirus. This pandemic brings with it an acrid kind of despair, infiltrating every hour of our lives, every call we make and text we send. It’s this nauseating smog in my home, where I’ve had the privilege of working remotely, shut away from the world.

One morning, the miasma began to suffocate me. Reports said that nearly 4.4 million people were newly jobless in the U.S., some of my friends among them. Dreadful images of overcrowded hospitals appeared all over the news, while the number of those who tested positive for the virus only continued to rise. It was hitting me that people are dying because a president too concerned about his re-election chances did not acknowledge or prepare for the oncoming global health crisis.

I couldn’t breathe. I opened my windows and watched my quiet Brooklyn street. I went to my dresser. Deeply stressed, I did what I’d always done: I put on some perfume.

It’s my mother’s old favorite, a scent called “Thé Vert,” French for green tea. I bought the bottle during my first summer in New York. Overwhelmed by my magazine internship and yearning for a whiff of home, I went to a L’Occitane near Lincoln Center and sprayed the fragrance on my wrist. It’s a clean scent, floral yet piercing—Camellia sinensis with talons. My pulse steadied. My mind went from cloudy to clear. A single spritz was a vivifying hit.

A salesperson came over, eager to assure me Thé Vert was unisex. I didn’t care either way. I marched to the register with 750 milliliters of the stuff and emptied my wallet onto the counter. That evening, I ate dinner street-side (a five-dollar lamb and rice plate), as the oily halal cart aromas mingled with my new perfume.

It’s been a good investment. That was eight years ago and I still have that same bottle to this day. Some of my fragrances have turned bad over time, but Thé Vert, I think, hasn’t changed much. The green tea is still there, though now it smells peppery when it tickles my nose. Ultimately, its effect is the same: Wearing it, I inhale botanical grit, my mother’s eternal fortitude. And then, whatever anxiety I can release, I get to exhale.

L’Occitane launched Thé Vert in 1999. Bitter orange is the primary top note; the middle notes are green tea and jasmine; nutmeg, cedar, and thyme make up the base. Some reviews on the perfume site Fragrantica associate it with “a happy summer day” or “a picnic at the park.” But when I smell it, I conjure other images entirely.

To me, Thé Vert is five o’clock in the smoggy Manila morning. It’s my mother in her blazer and pencil skirt, applying a full face of makeup in the two-hour traffic jam, dropping me off at school en route to work. Thé Vert is me sobbing into my mother’s collarbone, hurt and confused by men in my family who told me to “man up.” It’s her consoling embrace, her reminders that this storm will pass once we beach upon more welcoming shores.

Thé Vert is my mother in her bedroom in Las Vegas, crying on the phone to my stepfather in the Philippines, separated from her beloved. It’s me hugging her, reminding her that we have each other as we restart our lives in this strange new country. It’s us finding solace in beautiful, simple things—in shared meals, in French perfumes, in our mutual trust and friendship.

As time wore on, my mother wore her perfume less and less, until she finally stopped. L’Occitane discontinued Thé Vert in 2013, a year after I first bought it. They replaced it with the remixed Thé Vert & Bigarade. On Fragrantica, a reviewer called the new formula “bitter and sickly,” and preferred the original Thé Vert because it was “penetrating” and “sharp.”

My mother was similar, someone who cut her own path—for herself in the Philippines; for us both in the United States. That’s the woman I try to channel whenever I put on Thé Vert. I imagine walking through a cloud of atomized courage, borrowing my mother’s conviction, her grace. The bloom of it on my skin tells me that, against all odds, all will be well.

“I’m wearing your perfume today,” I told my mother recently. (This Sunday? Last Tuesday morning?)

Daytime in Brooklyn meant nighttime in Manila, where she and my stepfather now live together. Their self-isolation began around the same time as mine. I could hear the television in their townhouse. They were watching a press briefing live on CNN.

She doesn’t wear fragrances anymore, she said, “so it’s your perfume now, anak.”

I said that it still reminds me of her. It comforts me, makes bearable the fact that I can’t be by her side in the middle of what, on the worst days, feels like the end of the world. I wish I could see you, I told her. She smiled; I could sense it over the phone.

“It’s safer that you’re not here,” she said. “But I miss you too.”

I was supposed to visit my family this spring. But between my work schedule and preparing for the publication of my book this summer, I never got around to buying a plane ticket. This procrastination did me a favor, sort of. When New York governor Andrew Cuomo declared a state of emergency on March 7, my mother told me—jokingly, I think—that God had willed my indolence.

Just as well, we agreed. Flying from the U.S. to the Philippines would have meant going through multiple international gateways, potentially contracting the coronavirus along the way, and possibly passing it on to my mother and stepfather. They’re getting on a bit—she’s in her 60s; he’s in his 70s—and the Center for Disease Control states that older adults are at higher risk for severe illnesses from COVID-19. Also, my mother is immunocompromised. This is because she has cancer.

Again, I should say. My mother was initially diagnosed with breast cancer in 2015. Treatment put her into remission by the summer of 2016; by the fall, we were visiting Rome and Paris together for the first time. Then in 2019, last summer, she phoned me with the news.

Through tears, she said, “It’s back.”

The words my brain managed to pick up were stage IV, metastasized, the bones. She would have called sooner, she explained, but she didn’t want to interrupt my work. I was at an arts residency in New Hampshire for the month, finishing my manuscript. So, under sudden pressure and running out of time, I completed the first draft of my book the next day, unsure how to celebrate, unsure if I should.

The rest of my time at the residency, I wore Thé Vert. I wore it when I went to Manila to see my mother that fall—and again over the winter holidays, when it still felt safe to fly overseas. This year, I wore it at my pre-launch book party, when we could still gather in large groups. I wore it on a big date, when it still felt safe to date—to hug hello, to sip each other’s cocktails, to kiss.

I wore Thé Vert when I woke up terrified. Have worn it throughout the pandemic thus far. Even now, as I write this essay, I wear my mother’s perfume.

I’m not sure when I’ll get to see her again. She’s doing fine, all things considered. Regarding her cancer, I can say that there’s no ticking clock—not for now at least. But there’s also no assured end to the coronavirus crisis. According to experts, it could take anywhere from two months to a year and a half before we can reclaim even a few routines of the pre-COVID-19 world.

At the rate I’m going, I’ll run out of Thé Vert by then. I’ve been putting it on every morning in self-isolation. It keeps me calm, for the most part—as have the facts that I live alone; that I can do my job online; that I take a soapy shower after every trip to the grocery and liquor store; that I have books and video games and group chats to keep me entertained.

But that miasma, it lingers. Thé Vert cuts through it on most days, but when friends ask how I’m doing, I mention my ambient unease. My longing for a world we previously took for granted, a world to which we might never return. This fear, one I’ve felt since last summer, of looming death. The Harvard Business Review named my anxiety when it published an article about the coronavirus that said, right in the headline, “That discomfort you’re feeling is grief.”

More specifically, anticipatory grief—the kind we experience when facing an unknowable future. In the case of the coronavirus, there’s an invisible enemy still mysterious to us, shattering our sense of readiness or safety. Everything is going to change, we think, but how? That’s exactly what I’ve been feeling since my mother said, “It’s back.” Her death is around the corner. We don’t know how long we have on this road, or when we’ll make that turn.

To grapple with anticipatory grief, the HBR article says, we must first acknowledge it—the terrifying days to come. Before making meaning out of loss, before mourning too fast, we must first manage the current grief with counteractive thinking. We must focus on the present. Like so: At this moment, I’m fine. I have food and a home, a job and a warm bed. I am not sick.

But my mother is sick. Already I feel the future pangs of loss; time-traveling micro doses of unbelievable hurt. We are already so far apart physically. Yet there will be a day, who knows how soon, when that gulf widens further, when she will no longer be just a 17-hour flight away. I will not be able to reach her by phone. My memories will fade and I will run out of Thé Vert—the ways I summon my mother.

I wore Thé Vert on a date so that this boy I liked could meet her, in a way. I wore it at my pre-launch book party in order to feel her presence too. I wore it in New Hampshire to celebrate with her a milestone in my writing career. All while we still can. These days, I’ve realized, I don’t wear the perfume to borrow her bravery, to emulate her. I wear it to feel her near me, to alleviate the present distance between us, the future loss I dread.

Like many others living in self-isolation, my mother and I find consolation in the little things: phone calls, video chats, the time we do have on earth. I’m getting antsy though. I told her I’ve been looking at tickets to Manila for my birthday in September, to celebrate with her and my stepfather once the pandemic is over.

“One day at a time, anak,” my mother said. “Take care of yourself first. That’s how we’ll make it through.”

She’s right. Though time differences remain and continents still drift, at least the world keeps turning. If we play our cards right as individuals and as communities in this time of certain uncertainty, there’s a future to hope for, to work towards.

I look forward to the day when I see her again in the flesh, when we embrace and hold each other. She will get a whiff of Thé Vert, still sharp and insistent after all these years, and rest easy. She’ll know that, wherever I go—or, one day, she goes—I will carry her with me always, even long after our perfume has faded into the night.

But for now, I must relish the present. At this moment, she’s fine. She has food and a home, my stepfather and a warm bed. My mother is alive.

It’s like another spritz, another vivifying hit.

Complete Article HERE!