Enduring the Edge State of COVID-19

We certainly are living through interesting times.

The level of despair and anguish being experienced is like nothing that has happened in decades. For most of us, not in our lifetimes. Urban hospitals all over the world are being converted into mass casualty triage tents previously only used in active combat zones. There is so much uncertainty, anxiety and stress everywhere. It can feel completely overwhelming.

For the past 20 years, I have helped people going through cancer treatment and their loved ones navigate the strange new landscape of uncertainty a life challenging diagnosis can bring. This process is now repeating itself on a planetary scale. The entire world-- billions of people-- have been very quickly taken from the familiar into the unknown. The economic toll is just beginning to be felt, but the human toll is already rippling out all over the world.

It was from Roshi Joan Halifax that I first learned the term "Edge State". This refers to the boundary between the known and the unknown. For all of us, the world we knew is gone. The world that we will make out of this is still to be determined. We are in the in-between-- the Edge. What Tibetan Buddhists call a "bardo".

Edge States are not easy. There are some tips and coping skills that are helpful. But I don't know if they can "solve" the Edge. The Edge is something we have to be at home in, like living in a hut on the lip of a smoldering volcano.

I don't think it's an exaggeration to say that for many of us, certainly all of us in health care, this is a traumatic time. It's a slow motion, serialized trauma that will unfold for weeks, probably months. There is only so much one can do to be ready. Of course, in our happiness based society, the goal is already targeted to be "resilience", but that may be more for economic wishful thinking than for emotional health.

I believe that before we speak of resilience, we have to experience what is happening with the best available tools in our toolkit. What we are experiencing is grief for the world we knew, the people we love who will not survive this experience, perhaps already for so many who have succumbed. We are also grieving the lives we thought we were going to live. We all had plans and roles that have disappeared, crumbled and changed.

How do we experience this in as healthy a way as possible?

My work with people going through cancer treatment, when life becomes a prolonged Edge State, has  taught me a few things:

1) Accept that this is happening. You don't have to be immersed in the news all the time, but stay informed just enough to guide your daily decision making and daily choices.

2) Structure your time. If you are now working from home, or not able to work, set up a schedule. Most humans find safety in routines, even if they are annoying routines. Wake up and go to sleep at the same time. Eat meals at the same time. Exercise if you are able to.

3) Find your breath. Mindfulness has become increasingly popular, but with its popularity have also come a bunch of unfounded claims. I believe that mindfulness is a mind-body technique to improve the human stress response through breath awareness. This may be helfpul to watch. Practice breath awareness as often as you can, especially after watching the news.

4) Try and keep a clear mind. Avoid alcohol and other intoxicants. If you smoke anything, quit. There is growing concern that inhaled smoke in any form makes people more susceptible to increased complications and death from COVID-19.

5) Do the best you can. This is a global pandemic. The world is grieving what it knew. The horrors of this time will be told for years to come. This doesn't need to be the most productive time in your life. You may not make the best decisions every day. The goal is this: be a loving friend to yourself. Treat yourself and others with kindness. That is surprisingly difficult for most of us in a slow moving trauma like we are all experiencing. Do the best you can. That may be hard enough.

My Mother's Story

Three years ago my mother died. Since then I’ve been unable to write anything more than short bursts. These words that she longed to share with the world, that she shared with me, have been stuck inside of me. So now I am sharing them.

These memories should never have been created but they must be spoken.

The story is not my own but what my mother told me for many years on the anniversary of what happened. She never wanted to speak of those days but could never forget them. They were on her mind every day from September 1947 until her sudden death in 2016. A few days before she died, she had visited the Holocaust Memorial in Krakow, Poland. She had broken down there, recollecting the never forgotten but largely unacknowledged pain of Partition.

Her name was Adarsh Kumar. She was raised in Pind Dadan Khan, Jhelum District in the Kapoor family. She created a beautiful life over many decades, but with a pain inside of her from having survived unimaginable horrors. Every September, we would have a havan (Hindu fire ceremony) for her parents and brother who were killed in those days. Not every time, but often, she would sit down with me and tell me of those days before and after Partition. I can still see her now, feel her presence, telling these words that she struggled so hard to say.

Life in undivided India had, for all intents and purposes, come to an end several months before India and Pakistan became independent. Pind Dadan Khan back then was home to Hindus, Muslims and Sikhs. It was deep in Punjab and so many miles from the new border. Their Muslim neighbor, Raja Ghazanfar Ali Khan, was the head of the town. He was a believer in an undivided and diverse post-independence India until the political realities dictated otherwise. He faced opposition from members of the Muslim League and his own household for his views.

My mother tells of growing up in this town where neighbors celebrated every religious holiday together. The Raja would celebrate rakhi with her mother. Rakhi is a ceremony that’s usually only celebrated between brother and sister, but the Raja and my maternal grandmother were close friends.  When the Shia Muslims would walk in bloody processions on Muhurram, my mother and her family would watch from their balconies as they cried out “Hai Hussein!”, in memory of their fallen imam from so long ago. Hindus would celebrate Eid, and Muslims would celebrate Diwali in their neighbors’ houses. They met together in the markets, used the same communal tandoors and washed in the river, together. Everyone was united, various religious communities that were also part of neighborhood communities.

This peace was shattered in February 1947. Someone threw a rag soaked in kerosene into my mother’s house in the middle of the night, when everyone was sleeping and there was a limited water supply. The fire was put out by the family and neighbors, including my mother who was around 10 years old. An uneasy feeling began to spread around the town. There was word of religious strife in other parts of Punjab, but until then Pind Dadan Khan had felt safe. It still felt like home.

In March, as my mother watched from her balcony, a Hindu man came running down their street, bleeding profusely from his head. A Muslim family had arrived from India and moved into the now vacant house next door that had once belonged to a Hindu family that had left to India. The new neighbor decided to use wood from his Hindu neighbor’s roof beams for cooking fuel. When the Hindu neighbor protested, the wood was used to club him. The Raja was enraged that the fire that was burning all over Punjab had now spread to Pind Dadan Khan. As the neighborhood watched, the Raja declared that no Hindus should leave the town, and everyone would have his personal guarantee of safety. “Not a hair on their [Hindus] heads will be touched in Pind Dadan Khan!”.

The most serious blow came shortly afterwards in May. My grandfather’s cousin, Anant Ram Kapoor, was traveling home to Pind Dadan Khan by train and bringing a box of pears and dried fruit. He was harassed by some Muslim youths who began eating the fruit and tossing it off the train. The teasing quickly escalated, and he was stabbed to death, disemboweled right there on the train. The other Hindu passengers could only watch helplessly. His body was then tossed off the train. After his cremation, my mother says that a gloomy atmosphere enveloped the town. It didn’t feel safe. It no longer felt like home. No one knew then what horrors still lay ahead on those train tracks for millions more.

The Kapoor family knew they had to leave. In the summer, someone had dug a hole into their ground floor pantry to rob the house. The ground floor was a pantry and storage area, so it made easy access. Most disturbingly, the hole was made in a common wall that they shared with the Raja. He surely was not responsible, but it was a sign that law and order were deteriorating. Hindus could find no justice in Pakistan. The same was happening across the border in India to Muslims.

By August 14 and 15, when Pakistan and India respectively gained their independence from the British, my mother had family members scattered across the border in Jammu, Pathankot and Delhi. Her parents, herself, and her younger brother and sister were all still in Pind Dadan Khan, awaiting the return of her brother Raj from British military service in Iraq. There was no celebration for Independence. There was anxiety, fear, and a foreboding sense of gloom. They were refugees, and they knew it.

Once her brother returned, they packed up what they could and left their house. While they awaited their chance to board a train, they went to a large refugee camp that had been made near the railroad station in Pind Dadan Khan. This was the same train station they had used so many times to visit the family run coal mining business in Dandot to the west. India, however, was to the east. My mother didn’t speak much about life in that camp. She told me there was a virtual town there. They could only bring  a few things with them—a rolled-up mattress, some bedding, and a few belongings. My mother would navigate the narrow unpaved roads in the camp holding her mother’s hand, bringing food and other supplies to their father and younger siblings.

The evacuation of Hindus and Sikhs from west Punjab and Muslims from east Punjab took many months. At first it was done by trucks, but they were easily stopped and their occupants killed. Fearing the trucks, many chose to flee on foot. This was just as perilous. The next obvious choice was trains. These proved to be even deadlier.

According to another resident of Pind Dadan Khan, the first train for evacuees, that departed on September 20 or so, was filled mostly by Sikhs. No Hindus wanted to board this train because they expected it to be targeted due to the intense animosity and bloodlust flowing between the Muslims and Sikhs of Punjab in those days. My mother’s family was supposed to ride on the train departing September 22, but instead left a day earlier, on September 21.

The steam train arrived at the station and was loaded. The family was told they could not bring any large belongings, only what they could carry. Anyone who was armed was disarmed, including Sikhs carrying their ritual daggers and swords. There were a few closed passenger train compartments which they were unable to board. Like most Partition refugees, they instead sat inside flat cargo cars. My mother would use the term “coal” cars, but I think she meant “cargo” because there were no seats, and the cars were open on all sides.

Men sat in one car and women in the other, facing each other. My grandmother was sitting with her younger children: my mother (who was around 11 years old) and her younger sister and younger brother. They sat close to each other, protected from the elements by my grandmother’s blanket or woolen shawl. Eventually, as night began to fall, the train pulled out of the station.

After it picked up speed leaving town, it came to a halt near Chalisa, not very far away. I’m not sure if the pause was initially due to the rail gauge being different past Chalisa junction. My mother always said someone had cut a tree and placed it on the track to block further movement. A crowd gathered around the train, armed with farming tools, machetes and swords. They were chanting “Allahu Akbar!” (“God is Great!)  and “Kafiro ko maro!” (“Kill the infidels!”). The slaughter began systematically with the men, including her father and eldest brother Raj, in the cargo car in front of theirs. 

The details at this point would become spotty from her tears and the sheer agony of the memories that were burned into her heart.

Her mother hid the young children under her shawl. There was a brief conversation between her and her mother.

“Adarsh, say the kalaam [become a Muslim], they’ll spare you if you do.”

“I won’t become a Muslim, they’ll have to kill me!”

The slaughter continued under the night sky. I don’t know what else she heard or saw. It was too painful for her to share. Her mother was either wounded or about to be. They all knew she was dying that night. I have reason to believe my mother witnessed my grandmother being struck by a weapon, but was hidden enough under cover that she and her younger siblings were spared.

My mother was handed some 500 rupees by my grandmother. “Take care of your sister and brother. Go.” These were the last words my mother would hear from her own mother. The advice was taken to heart.

The line of killers either had moved further down the compartment, were exhausted from manual slaughter, or were consolidating  their loot when my mother quietly led her sister and brother off the blood-soaked train. They jumped off the car and into a neighboring corn field. They ran some distance away and hid. The train eventually started again and delivered the cargo of death and slaughter to Amritsar, where my aunt Hans collapsed in horror upon its arrival the next day.

I cannot imagine what it must have been like to witness the total destruction of all that she knew, alone in a field, the bodies of her parents and older brother moving away quickly into the night as she moved toward an uncertain fate. The three young children—my mother, her sister and her brother, were soon discovered in the corn field by a farmer who recognized them as the Kapoor children, and was horrified at the role he had played in aiding—perhaps participating—in the slaughter of his neighbors.

With much lamentation, he took them to his simple house. There, they were to sleep. My mother didn’t sleep. She overheard the farmer and his friends—accomplices?—debating what to do. Marry the girls off for a decent price? Convert the boy to Islam and use him as a servant? There was much discussion. Finally, the decision was made to inform the Raja; he would decide.

The Raja was horrified to learn what had happened. He took his own horse and rode over to Chalisa to personally bring the children to his house. My mother makes it sound like the journey took hours, but on a map the distance is not that significant. I cannot imagine the exhaustion and trauma she had experienced. Certainly, from the moment she set foot on the train, even in her storytelling, time would seem to slow to a crawl.

When they got back to Pind Dadan Khan there was much mourning. The Raja was horrified at what had happened to the train, and at the fact that his beloved neighbors had been killed. Yet, ironically enough, it could have been worse. The train that left the next day, on September 22^nd, the train they were supposed to be on, fared much, much worse. That slaughter took place in the urban area of Gujranwala and was almost complete. There was no escape there for young girls and boys on that train.

As much as the Raja wanted to help them, there was little he could do. This would become a recurring theme until my mother was married, even after. There was no home for her anymore. Raja had his own family with grown children who were agitating that having Hindus under their roof now put all of them at risk and that Hindus had no place in the town anymore. So it was decided that my mother and her siblings would go to the camp in Pind Dadan Khan for Hindu and Sikh refugees. I don’t know for sure if this was the same camp she had left from, and whose narrow alleyways she walked with her mother just days before. She didn’t talk about the camp, and what must have been unbearable sorrow and agony, not to mention terrible conditions after a heavy monsoon season.

The three children stayed there for some time. As the weeks went on, some semblance of law and order was restored, and it became relatively safe to travel. Her older sister’s husband came to fetch the children from the camp and took them to Delhi. She stayed with her eldest sister and her family in Delhi for many months, but due to the overcrowding in the house she spent the summers in a refugee camp where she had some access to supplies.

Within a couple of years, she obtained a scholarship for refugees and displaced persons sponsored by the Birla family. This enabled her to attend a boarding school in Pilani, Rajasthan. She distinguished herself academically and thus was able to fulfill two wishes that her mother had for her—to become educated, and to take care of her younger siblings. Her grandfather, had, after all, founded the only girls’ school in Pind Dadan Khan some years before.

A decade later, she met my father while in graduate school. Thirteen years after the horrible events of Partition, they were married. She went on to become a mother of three children while pushing forward her career as a researcher in studying neuroendocrines, with a seminal research project on music therapy. For decades, she felt the obligation to take care of her sister and brother well into their older years.  

She spoke often of the joy of living in a diverse society with different religions and languages, memories that glowed with the warmth of her childhood in Pind Dadan Khan and came full circle in the cultural melting pot of south Florida.  And always, the memory of being with her mother in the house when it felt like home.

---

My Grief

My mother died on April 11th, 2016.

It was sudden, very unexpected. She lived 20 minutes away. We were very close.

So now, grief.

For 20 years, I've sat with grieving people suffering from all kinds of loss. Loss of a child, parent, spouse, sibling and friend. Sudden loss, gradual loss, traumatic loss, graceful loss. I've witnessed death and the dying process hundreds if not thousands of times. I've had years of education, training and experience. I've written books on the subject that have helped thousands, and taught my techniques of coping with grief to thousands as well.

But this was my mother. My dear, sweet mother, who first sat me down and taught me to do most of the important things I cherish in my life.

I've learned a few new things about grief that training and professional experience didn't teach me. It's been less than two months, and the arc of grief is long. Very long. I'm sharing these to help people who are suffering from grief who might feel alone or unprepared for their pain. I expect that there will be new pieces of information along the way.  But so far, here's some morsels:

1) Grief sucks. This is really hard to convey in any other words. We all have our set of beliefs, or lack of beliefs, but there's no mistaking or sugar-coating this simple fact: It's really, really hard. Sure, it can be meaningful. It can be a lot of things. But from  the moment I wake up in the morning to the moment I fall asleep, it's impossibly difficult. The pain is massive. I have an acute sense that this pain of grief is a species-wide event. It's so much bigger than me, my relationship to my mother. It feels like a vast realm of the collective unconscious that spans the entire span of human existence.

2) The fog of grief is not to be underestimated. The forgetfulness is daunting. I have an incredibly diminished capacity to multi-task or remember things. Conversations I am somewhat aware of seem to have vanished in a blur. Things I did that first week feel like a dream. There's countless items that were sorted that seem to have disappeared, no doubt kept in a "safe place" at the time. That safe place is clearly not my brain.

3) Some people can be really awkward about being around you. Most people really don't want to know when they ask "How are you?". It's nothing personal. Just shrug and move on. Some people don't even want to talk to you. Perhaps they think it's helpful to give you space? Who knows. I've learned that it's a waste of resources to try and figure out these people. Move on to the ones who feel comfortable being around. The only thing worse than being asked how you are is not being asked how you are. There are no right answers on how to behave. Give people room to mess it up.

4) Give yourself room. The Pain is so big, it's got a life of its own, and it might not match yours. Healthy self-care is essential. Be kind to yourself. Go out of your way to find healthy ways to cope. Meditate. Exercise. Eat plants. Don't drink alcohol. Stay hydrated. The last thing you need with all of the pain is getting sloppy or unhealthy. The path of nihilism, that what you do doesn't matter because the pain is relentless, is wrong. The pain feels vast and endless, but what you do does matter. The choices you make of how to face the pain will determine who you will be as you grieve.

5) Expect nothing. Don't expect straight lines or finish lines in grief. Don't expect pain. Don't expect relief. Each day, each moment is full of surprises that can be pleasant or unpleasant. Be open. There are a million triggers a day that are impossible to control. There are also a million opportunities for joy that are easy to overlook. Try and be present. Just try.

6) Keep your heart open. See #4.

7) Don't be an expert. Be human.

Why Aren't We Ready for Cancer Survivors?

After nearly 18 years of caring for people with cancer, I've seen some remarkable improvements in cancer treatment. Diseases once assumed to be life limiting are more chronic. Many more have had years of quality life added to otherwise dismal prognoses. Certainly, much work needs to be done for a whole host of cancers and in improving treatments. But to deny the progress that I've seen with my own eyes would be disingenuous.

You would think that society would be enthusiastic about all the cancer survivors out there. Unfortunately, society is completely unprepared.

It's so frustrating for me as a professional, I am sure even more frustrating for the people I try to help. There are two socially acceptable ways you go through cancer: 1) lose a brave battle, or 2) have a wake up call. Either of these simplistic narratives has the same predictability-- a beginning, a middle and an end.

What about the thousands, maybe millions in between? The people who got cancer, did their treatment and are disease free. BUT. Exactly-- disease free, but...

But neuropathy. Chemo-brain. Deconditioning. Limited endurance. Loss of senses like taste or smell. Feeling different. Looking different. Thinking different. All those colleagues who disappeared during the illness. The other ones who moved into your work space.

Whole rounds of doctor's appointments that can take up an entire afternoon, days, for months or even years after a cancer diagnosis. "I thought you were fine" is the most common retort. I'm sure the intention isn't to push uncomfortable buttons about fears of recurrence, but that's exactly what it does.

What about the employer who isn't willing to have an employee disappear for a week every 3-6 months for follow up appointments? That employee already ate up all their sick time.

They get fired. Sure, not for being a cancer patient, but for missing work. It's all legal.

Too much affected by cancer for full-time work. Over qualified for part-time work.

Lately the only safety net available to this growing population of cancer survivors is social security disability. Some of the lucky ones have employee long-term disability as well. But what a horrible predicament-- survive cancer, but now you have to amplify your general helplessness and hopelessness on a disability application because otherwise you'll get fired.

Society isn't ready for cancer survivors.

Society is losing its brave battle with cancer.

So frustrating.

Dreams of Memories

My job as a psychologist is not what probably comes to mind when you think of psychotherapy. For a good chunk of each day, I spend time with people in the hospital dealing with a cancer diagnosis. Most have just had what will turn out to be life-saving surgery or chemotherapy. But many of my inpatients are hospitalized because their health is too precarious for them to be home.

It was one of those days in the hospital.

It seemed like every room I walked into had some heavy things going on. Big decisions to make. Incredible questions to answer. Uncertain futures to predict.

There was the overall feeling-- life is slipping away too quickly, time is running out. Mind is clear, body is failing. Relationships are being torn apart too soon. There are still dreams of memories to be made.

It doesn't seem fair.

As a health care provider, the known path is to build a wall. Don't get too close. Don't get to personal. Don't feel their fears, don't fall into their arms. As an old book once dictated, "always remember, you're not the patient". Mutter some line about hope and positive thinking and quickly leave the room. It's "them", we are "us".

That doesn't seem  to help.

The supposedly riskier path is the uncharted territory-- at least in health care-- of the open heart. Let's step into this darkest part of this cave, together. The person I am with is too sick and weak, perhaps also overwhelmed by pain, to navigate it alone. Here, we can use the light I can shine to illuminate these dark walls, scatter the scary shadows. Let's feel out the path, together.

Into this space of light in darkness, unexpected things begin to happen. Time seems to stop, even for a moment. When you come out of a conversation in which you've had a wall up around your heart, time seems to be going too fast. But that wall isn't just for the patient, it very quickly takes over your life. It amplifies this sense of powerlessness in the face of suffering.

It seeks to perpetuate itself. It seeks out unhealthy coping to numb the natural state of existential terror that is life. Alcohol, junk food, tuning out instead of turning on the experience of life and relationships.

The open heart that allows the light of compassion to shine-- into that space, time become irrelevant. Life feels deeper because it's being deeply felt. Coming out of these conversations feels like connecting to something much, much larger than just another person. It feels like tapping into something much grander, something cosmic.

I suspect this is what Martin Buber was referring to as "I and Thou". It's a sacred space, even if God doesn't feel present or caring. This is the opening that brings healing.

It also seeks to perpetuate itself. But this is about turning on to life. Light seeks light.

Once ignited sufficiently, the light of compassion seeks to keep itself burning. For me, this is the motivation to wake up early, meditate for an hour, work out. Keep that light lit. I might not know why I will need it on any given day, but it needs to stay lit.

The darkness is all around all of us. If we don't ignite the light within, the darkness will take over.