There are 12 million of us in the United States who live with cancer and the number rises every year as researchers find new drugs to extend our lives. Some of us hide our diagnosis even from trusted loved ones, while others freely share it for a variety of reasons. I’m sure at least once in everyone’s life they will learn that a close friend or family member has cancer. How will you respond when you hear “I have cancer?”
Often, there is an awkward moment when people hear someone is living cancer—or worse, expects to eventually die from it. Listeners hear “cancer” and they become silent as if struggling to find the right words to say. Those of us who have decided to share our physical condition with you, often hear words that are based on your difficulty dealing with illness and death, rather than on what the diagnosis means to us.
Some well-meaning and sensitive people try to minimize the magnitude of what we are sharing, with words such as, “Oh don’t worry, we’re just around the corner from a cure.” Or statements filled with optimism such as “Let’s hope for the best.” And also the sympathetic “Oh, I feel so sorry for what you’re going through.” The search for the “right” words is futile. There are none.
Revealing one has cancer is not simply an issue of deciding to be honest or closed. The decision is based on a dance between the world of a person who knows he or she has a limited future and their expectation of how the listener will react. It’s as complicated as a jazz improvisation occurring between John Coltrane and Miles Davis.
So, what should you say if there aren’t any “right” words? When I first started playing the shakuhachi (Japanese bamboo flute) I struggled to produce the “right” notes in a song I was learning. My teacher, who not only is a great musician but also a wise philosopher, said, “Stop worrying about the notes. Think how you would play the song to your child when he was a baby.” For him, notes came from one’s soul, not from the flute. The same applies in deciding what to say. The words are secondary to your understanding of how our lives have changed.
Instead of thinking about the words, try to imagine what those of us with cancer are experiencing. Many of us no longer think about death in theoretical terms. It has become something very real to most, frightening to many, and enlightening to some. Instead of having a lifetime to make up for our regrets, we may have a limited amount of time to remedy them. Instead of years to complete goals, we may begin focusing on how we are currently living our lives. How we approach that understanding is rarely straight-forward. It’s as circuitous as Lombard Street is here in San Francisco.
It is from this world that we are sharing with you that we have a life-threatening illness. And your understanding of our world should guide your response. And if you can’t imagine what we are feeling, rely on compassion.
Someone once asked the Vietnamese Monk Thich Nhat Hahn to define “compassion.” He said to think about the person you are talking to as if he or she was your mother; the person who fed and cared for you when you couldn’t do it yourself.
So don’t worry about the right words. When you hear “I have cancer,” visualize that it’s your mother saying the words. And if you still can’t imagine what she would be feeling, then just ask us. We wouldn’t have shared something this personal if we weren’t prepared answer the question, “How do you feel about it?”
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EARLY PRAISE FOR LEANING INTO SHARP POINTS FROM LIVESTRONG
“Stan Goldberg brings wisdom and personal experience as a caregiver and hospice volunteer to this compassionate and honest guide to providing care for one who is chronically or terminally ill. Written from the perspective of both the caregiver and the one who is receiving the care, it is a sensitive, rich, and often compelling resource.”
– Andy Miller, MHSE, MCHES, Executive Vice President of Mission, LIVESTRONG, LANCE ARMSTRONG FOUNDATION
Excerpt from Leaning Into Sharp Points: Practical Guidance and Nurturing Support for Caregivers.
I would sit for long periods with Jim in his kitchen when Lisa slept. He was a large man who had laid bricks his entire life, until he retired, five years before Lisa received a terminal prognosis of congestive heart failure. Unlike her husband, Lisa was very small, and, in the words of Jim, “the disease shrank her to the size of a tiny bird.”
“Neither of us is into the touchy-feely stuff,” Jim said to me one day. “Lisa and I have been married for almost fifty years. Before we knew she was dying, I don’t remember the last time I told her that I loved her. But she knew it by the things I did. We came home from the doctor’s office that day, the day Dr. Louis said she would be the one to leave first, and we sat at this kitchen table and had coffee. Mind you, there was nothing special about us sitting here. We did that almost every day. It was a kind of ritual.
“We never talked when we drank our coffee. She usually had a book, some woman’s novel I’d never look at, and I had a newspaper folded back to the sports section, which she wouldn’t read even if nothing else was around. We’d sit there every morning, year in, year out, not even looking at each other, just reading and drinking coffee. Well, it usually took us about fifteen minutes to drink a cup. We’d hang around it, you know. Not really drinking it, just being together without fussing.
“We started doing the same thing that day when we returned from the doctor’s office. I was hiding behind the newspaper when Lisa reached her hand over the table and held mine. I put my paper down and she saw my tears.
“Jim,” she said, “I love you. I always have, and I’m sorry I’ll be leaving you.” Well, I started bawling. Can you imagine that? Me, a guy who never cried. My father taught me that men should hold in their feelings. We must have held each other’s hand, not saying anything, for a good five minutes. That was longer than I could ever remember doing. Finally, I told her how much I loved her and what she had meant to me all these years. It was as if one of my brick walls tumbled over and I was able to say things I hadn’t even thought about for years, maybe never.
“From that day on, I’ve told her how important she’s been to me. I know I’ll miss her when she’s gone, but I’ll have the memories of the last six months we had together.”
Lisa died three weeks later with Jim holding her in his arms. Just as he predicted, he was lonely without her, but at the memorial service he spoke about their last months together and how important it was to him that he was able to relive their wonderful life together by recalling his memories. The grief was still palpable but, I believe, less painful than it would have been had they not had those incredibly honest discussions about their intertwined lives. Instead of being hobbled by what wasn’t said and done, he was able to reflect on some of the most honest and meaningful conversations he and his wife ever had. It’s never too early to start these conversations with a loved one.
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EARLY PRAISE FOR LEANING INTO SHARP POINTS
“Stan Goldberg brings wisdom and personal experience as a caregiver and hospice volunteer to this compassionate and honest guide to providing care for one who is chronically or terminally ill. Written from the perspective of both the caregiver and the one who is receiving the care, it is a sensitive, rich, and often compelling resource.”
– Andy Miller, MHSE, MCHES, Executive Vice President of Mission, LIVESTRONG, LANCE ARMSTRONG FOUNDATION
Excerpt from Leaning Into Sharp Points: Practical Guidance and Nurturing Support for Caregivers.
Caring for anyone who can’t care for himself opens a door to your soul that I don’t think is opened by any other activity. The person who allows you to do so is saying, “I’m totally vulnerable and I’m placing myself in your hands.” After eight years of caregiving, I’m still learning and, I hope, still growing.
You have the same opportunity with your loved one. If you’re open to the experience, you’ll learn about yourself, death, and, most important, life. But to do that you must be willing to lean into the sharp points of caregiving.
Tibetans say that, to get over the things you fear most—the sharp points of your life—bring them closer instead of pushing them away. It’s an idea that many people in Western societies view as counterintuitive. For example, some try to hide from the sharp points of aging by glossing over them, which has the same degree of success that a new coat of paint on an old car has in stopping the car’s engine from sputtering. Some who have lost physical or cognitive abilities grasp at what is gone, doing little more than increasing their suffering. And faced with death—probably the sharpest point of all—we hide from it as if it were a tyrannical schoolteacher coming to discipline us. It is always our choice whether to follow the ancient Tibetan advice.
The poet Rainer Maria Rilke thought bringing the sharp points in life closer was an opportunity for healing. He said our greatest fears are like dragons guarding our hearts. Few dragons are as intimidating or as capable of hiding our wisdom from us as long-term caregiving. Pushing away the sharp points of caregiving is like covering them with a permeable membrane, something porous enough that they emerge at unexpected moments.
A smell, word, or sight allows them to resurface. Think about the transformative events in your life. I would guess that most, if not all, involved getting past the dragons. Personal growth doesn’t seem to occur when life is pleasant. Few people would say something like: “Yes, I turned my life around sitting on the beach in Kauai being served piña coladas by attentive wait staff.” Just as intense heat and pounding are necessary for creating the highest-quality swords, sharp points are necessary for shaping our lives.
Considering all the things that can go wrong with our minds and bodies, I’m amazed we can last as long as we do. But when things start going wrong, very wrong, caregivers are often thrust into chaotic situations. Daily, they are often forced to make momentous decisions without much guidance. What was needed yesterday may not be sufficient today. Just when they understand how to care for a loved one, the illness takes an unexpected twist and they’re dumbfounded about what to do next.
A loved one was grateful for what was done yesterday, but today it’s just not good enough. And tomorrow? Will things finally stabilize, or will the roller-coaster ride continue? With chronic and terminal illnesses, nothing stays the same for long. Instead of trying to become comfortable with what you are already doing, it’s better to become malleable, ready to move along with the ebb and flow of the situation.
Much has been written about the hows, whats, shoulds, and should nots of caregiving. But to clearly understand caregiving, all the peripherals need to be stripped away, leaving its most basic component, offering compassionate service to someone who can’t do things by him- or herself.
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This is the featured article in the Winter 2011 Buddhadharma: The Practitioner’s Quarterly. I’d like to thank Shambhala Sun Publications for permission to reprint it. Although I wrote the article from the perspective of a “practical” Buddhist, it’s applicable to people with other spiritual convictions.
If you are not already a caregiver for someone with a chronic or terminal illness, statistics say you will be. It’s estimated that there are at least 45 million family caregivers in the United States and that number will keep rising as people live longer. You should assume that at least once in your life, you will be asked or feel obligated to provide care for someone who can no longer care for him or herself. It may be occasional and for a short period of time, or constant and last for years.
The question asked by millions every day is, “How do I do it?” The question asked by anyone with deep spiritual convictions, is “How do I do it for someone who holds very different beliefs than me?” As a Buddhist caregiver in both hospices and other settings, and whose caregiving population is nearly all non-Buddhist, I’ve often had to ask myself the latter question. And with Buddhists comprising a tiny fraction of the American population, you too may be faced with the same question.
When Needs Conflict With Buddhist Values
We all have a tendency to look at the misery of others and think, if only they would believe as I do, they could lessen their pain. Our beliefs are often in the form of “if only” propositions. The core message is, “If only everyone followed the teachings of (place your favorite teacher here) the world would be a better place.” And by extrapolation, the person you are caring for could be more at ease with their chronic or terminal illness if only (fill in the blank with your favorite life maxim).
From a safe distance, helpful suggestions based on millennium-old principles seem logical and righteous. I know that as a Buddhist, the application of certain principles and beliefs have made my life more meaningful. From a distance, it’s possible to look at the misery of others and feel the certitude of “if only” statements. But what if the person needing care is your non-Buddhist partner, brother, mother, father, child, or close friend whose idea of “letting go” is trading in a car every two years for a new one. Or “living in the present” means keeping up with current fashion? The objectivity that is possible from a distance dissolves when it’s someone whose hand you can hold. And the universal truth of some concepts, such as letting go and living in the present, becomes equivocal. There is a Spanish proverb that says, “It’s not the same to talk of bulls as to be in the bullring.” The same applies to caring for anyone who has a chronic or terminal illness and has not lived their life as a Buddhist.
Serving Needs While Ignoring Doctrine
The way I’ve served patients for the past eight years is based more on their needs, than on many of the Buddhist principles that structure my life. I did it with someone who believed the holocaust—where thirty-nine of my relatives died in Auschwitz—was fiction. Even though I have a daughter, I listened without judgment to the sexual exploits of a former member of the Hells Angels who was released from prison so he could die in a hospice. And I did the same with countless others whose lives were examples of how not to live. The mistakes my patients made throughout their lives were powerful incentives for me to change my own, but did not alter my service to them.
Many Buddhist teachings may have limited value when the person you are caring for can only see the world and your advice through their illness. I recently experienced a pain so intense that I asked my wife to call 911. It was something unusual for me, since I have always been reluctant to seek help before trying to control my pain through meditation. But not that time. The intensity made every technique I spent years practicing as useful as a 1970s computer. Fortunately, it was nothing serious. But I learned that given a battle between the immediacy of a problem and a concept, the practicality of a problem always wins out. That was the case with one of my patients who described himself as a “confirmed atheist.”
He noticed the mala I was wearing on my wrist and asked me what it was. When I explained that it was the Buddhist version of a Catholic rosary, he asked me about Buddhism. Not in a way that was inquisitive, but rather challenging. As I struggled to explain my “practical” Buddhism using centuries-old concepts, I realized my words were sounding like the canned speeches of people who came to my door and wanted to lead me from damnation to salvation.
“I can have a monk visit you and explain it,” I said, since the San Francisco Zen Center was across the street.
“No,” he said breathlessly, an oxygen tube in his nose. “I don’t want to hear any mumbo jumbo for a professional religionist. Just tell me how what you do because of your beliefs can help me die better.”
That was the first of many interactions I had with patients who taught me to see my words and actions through their eyes—the eyes of someone who looked at the world through cancer, HIV, a chronic heart condition, early stages of dementia, ALS, or any of the hundreds of illnesses that tainted everything they felt or perceived.
If Buddhist caregivers are to be effective, they need to understand that almost everything experienced by people they are caring for is seen through the lens of their illness or the certainty of death. It’s a very different world than the one a caregiver lives in. Urging them to look at it through a Buddhist perspective, as well intentioned as it is, may be counter-productive.
Imagine being dropped into a strange country with a language you don’t understand and customs that are unfamiliar. I experienced this when I was in Prague in the Czech Republic and decided to drive to Weimer, Germany, a four-hour trip away. I didn’t speak any Czech and my German was as inadequate as it was when I studied it in high school. But I did have a GPS that guided me. Without the GPS I probably would still be wondering around Germany. In many ways, the person with a chronic or terminal illness is on a similar journey, but without a GPS.
Before their illness, how they viewed themselves was based on roles, affiliations, values, abilities, and relationships, just to mention some of the multitude of things that constitute “identity.” All of these in combination are used by people to create a picture of who they are, and by other people as they anticipate reacting to them. When an integral part of a person’s life is lost, identity changes, and so does their self-perception and place in the world.
Even though you, as a Buddhist, may believe that the stripping away of ego-enhancing activities should bring someone closer to understanding their “original nature,” it may not for someone such as the Fortune 500 executive I cared for with ALS who became dependent on a caregiver for things seemingly as inconsequential as scratching an itch. Or the novelist with dementia known for her intricate plots, who painfully wrote about becoming lost in the supermarket she had frequented for years. Losses of ego-enhancing abilities are rarely thought of in positive terms by non-Buddhists as they face a world that is constantly changing because they are. As the world of the person requiring caregiving changes, guidance for what to do should be based more on their needs than most of the Buddhist values that are the basis of your own life.
Accept Where They Live in Time
I know that the more I remain in the present, the more aware and more appreciative I am of every day I’m still alive. But is that true for everyone needing care? Is it important for everyone to remain “aware” in the present?
For Eric, it was. He stayed in the present during the last two weeks of his life. It wasn’t out of philosophical conviction, but rather because that’s where he was most comfortable. He was dying from pancreatic cancer, had been divorced twice, had a history of drug problems, and had never been able to hold a job for long. But he had an eighteen-year-old son who was devoted to him. Eric told me his son’s love was sufficient for easing his death, and up to the time when he peacefully lost consciousness, our conversations were firmly rooted in the present.
For Mary, her dying was eased when she focused on the past. For twenty years she had been instrumental in changing the lives of poor children through an afterschool reading program. As her disease painfully progressed, she focused on her past accomplishments to make the present tolerable. In her mind, she had made a difference in the world; there was no need to regret not having a future, and the present, devoid of family or friends, was no match for the joy she experienced just by remembering the past.
Although the past and present held equal relief for these two patients, death for those living in the future did not. That was the case with an author who had made significant contributions to the field of journalism and was widely published. Though he had a list of important publications that would have been the envy of most writers, he found no solace in what he had done. With only days left to live, he kept looking for a manuscript.
“I have to finish it,” he said to me one morning. “It’s due on Saturday. What day is it?”
“Tuesday,” I said.”
“Tuesday? How many days until Saturday?”
“Five.”
“Five days! I have six chapters to complete. I need to find it now.” He tried to get out of bed, but was too weak to sit up by himself. Another volunteer and I gently eased him back down.
“We’ll find it for you, Bill,” I said.
We kept searching the room until he fell asleep, but we couldn’t find anything that even resembled a manuscript. Until he died two days later, the most I could offer him in the way of comfort was to sit next to him and witness his anxiety about not finishing the manuscript. After he died, staff, volunteers, and a few of his friends sat around his body and each of us spoke about the impact he made on our lives. I asked a friend who had known him for many years about the manuscript.
“What manuscript?” the woman said.
“Bill said he needed to finish a manuscript by Saturday.”
“There is no manuscript,” she said. “Bill hasn’t written anything longer than a short article in ten years.” For this gifted writer, I don’t think there could ever have been enough accomplishments.
Being stuck in a specific time frame or effortlessly migrating back and forth is based on experiences, values, and needs. For many of my patients, residing firmly in the present resulted in easier deaths. In the present they could let go of the past and relinquish the future. But for others like Mary, nothing could compare with a specific era in her past, and the longer she stayed there in our conversations and her thoughts, the happier she was. Unfortunately for others like Bill, their life was future oriented. Changing how one lives close to the end of life is possible, but difficult. Sometimes the only thing you can do is be supportive of where the person has chosen to reside.
Compassion or Understanding
As someone who spends more time with ailing non-Buddhists than Buddhists, there is one principle that guides me more than any other: compassion. Thich Nhat Hanh’s explanation of it is to think of the person in front of you as if he or she was your mother who cared and fed you when you couldn’t do it yourself. With that image in mind, being compassionate with some patients became as easy as breathing. But for others, the mother envisioned by Thich Nhat Hanh took on all the characteristics of the witch in Snow White and the Seven Dwarfs. That was the case with Clarence, who was eighty, born in Alabama, and hated Blacks, Jews, Catholics, and “them damn agitators.” As someone who was involved in the civil rights movement, whose parents were Jewish, and who’s been a lifelong activist, I stood for everything he hated. He was dying and looked to me for compassion. My convictions said, “Give it.” But I couldn’t.
There will be times, despite your best efforts, that you can’t become the compassionate caregiver you want to be. I aspired to be compassionate to Clarence. I wanted to serve him, but thought I couldn’t. I realized that when compassion couldn’t be tapped into, understanding might be. How different would I be if I had been born in Selma to segregationist parents whose great great grandparents owned slaves, and whose fundamentalist religion espoused the superiority of whites, Protestants, and the Confederate cause? It was the circumstances of our lives that had made us different. When you think you can’t be compassionate, try understanding the circumstances of a person’s life. It definitely mutes those parts of it that you find unacceptable.
What’s in It for You?
Tibetans have a saying, that to get over those things you fear most—the sharp points of your life—bring them closer, rather then pushing them away. It’s an idea that many people in Western societies view as counterintuitive. For example, some try to hide from the sharp points of aging by glossing over them, with the same degree of success that a new coat of paint has on stopping an old car’s engine from sputtering. Some who have lost physical or cognitive abilities grasp at what is gone, doing little more than increasing their suffering. And for death—probably the sharpest point of all—we hide from it as if it were a tyrannical schoolteacher coming to discipline us.
The poet, Rainer Maria Rilke, thought bringing the sharp points in our life closer was an opportunity for healing. He said that our greatest fears are like dragons guarding our heart. There are few dragons as intimidating or as capable of hiding our wisdom from ourselves as long-term caregiving. Pushing away its sharp points is like covering them with a gossamer cloak; something so porous, that they emerge at unexpected moments when a smell, word, or sight allows them to resurface.
Think about the transformative events in your life. I would guess that most, if not all, involved getting past the dragons. Personal growth doesn’t seem to occur when life is pleasant. Few people would say something like “ I turned my life around sitting on the beach in Kauai being served piña coladas by attentive wait staff.” Just as intense heat and pounding are necessary for creating the highest quality swords, so are sharp points for shaping our lives. Caregiving is one of the sharpest.
The space occupied by the caregiver and the person served is special. Some would say spiritual. Depending on someone for your continued existence creates a connectiveness that is unmatched in almost any other setting. The person is saying “I can no longer continue living without your help.” The caregiver’s response should be “I’m honored to be given an opportunity to make the last phase of your life peaceful.” And while some of the experiences are enlightening, others will be unpleasant. Coming to caregiving with compassion based on a person’s needs, rather than a doctrinaire position, will allow the dragons to surface, each providing a lesson on life and death.
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I was reluctant to tell my new hospice patient in San Francisco that I would be traveling in Turkey for the next two weeks. Two weeks for me was a short amount of time. For him, it would most likely be a significant portion of the life he had left. But it was a trip my wife and I had scheduled six months prior, and as is the case with so many things, my life involves a merging of these two schedules.
“Why do you travel ?” my patient asked.
Judging by the tone of his voice, I thought he was looking for more than the usual common answers such as “to experience another culture,” “to relax,” or any of various reasons related to escaping from an ordinary life.
As I’ve grown older I’ve come to realize that the reasons I traveled when I was younger, has little to do with why I travel now. When I was younger, I traveled to learn about the world. Now, I travel to learn about myself. And in many ways, how I learn when I travel has similarities to how I learn as a hospice volunteer.
Many strange thing happens when you’re at the bedside of someone who is dying. One is mystical connection that often develops. If I tried to describe it, you might say, “What on earth does he mean?” So, instead I’ll use a more practical, useful explanation.
I think we all walk around with holes in our souls and minds that cry out to be filled. We may be trying to determine why our relationships are not fulfilling. How we can move on after being offended by an unskillful person. Why we aren’t happy. Or why other distressing conditions remain despite our best efforts to rid ourselves of them.
What I have continually experienced at the bedside is that the honesty of the person who is dying is so profound, that the lessons they provide me—none of which I ask for—sweep over my consciousness, and where there are holes, the most appropriate ones settle in, and the remainder move on. It’s almost as if I’m on a street in San Francisco with potholes crying out to have a little asphalt thrown into them. The only thing required to fill my holes is to listen and nonjudgmentally observe what I experience.
And that’s what I decided to do in Turkey. Flying over the Atlantic I asked myself what holes I needed to fill. There were many, and instead of choosing one, I decided to do what has always worked in hospice: just observe and allow what was most significant to make on impact on me. I didn’t have long to wait. When we arrived, almost immediately my attention was drawn to aspects of Turkish life that involved “adjustment,” rather than “conflict.”
I saw it in Muslim women’s head scarves signifying fundamental Islamic values, that were made from the finest European silks. In women wearing gray trench coats hiding everything from neck to ankle, as they walked arm-in-arm with other women who could have stepped out of Vogue.
I heard about it from a tour guide who explained that the ban on wearing head scarves in schools and universities was ignored if they were covered by baseball caps.
I felt it as our driver took us through the ancient streets of Istanbul in an elegant Mercedes touring van with all of the latest electronic devices, as my feet rested on an old Turkish rug that softened the European origin of a car made by a past invader.
I heard it in the form of a digitally recorded call for prayer echoing through the narrow streets in Istanbul from 3000 mosques, as a street musician improvised an accompanying jazz rift on his Kabak Kemane, an ancient bowed instrument, and I watched it on the faces of shop owners intent on completing a business transaction, regardless of the Imam’s words.
I saw it on the walls of the 2200-year-old Hagia Sofia where its conversion from a Byzantine church to a mosque was allowed by Sultan Mehmed II, who refused to destroy the frescoes and mosaics depicting the life of Jesus; instead covering the iconic faces with removable paint and plaster.
I experienced it as diners sat down for an evening meal in an outdoor cafe, and watched a group of eight Muslim woman dressed in black, each with one crutch, some with young children, scream at each other—presumably who had to right to ask for baksheesh (money), as annoyed Muslim non-sectarian policemen ordered them to disperse and stop bothering the tourists.
In horror, I witnessed the inability to adjust as a cruise ship passenger—one of thousands—cuing in line to see the Sultan’s treasures, yelled at people behind him who were six abreast “Not to jump the line,” while ignoring the exquisite carvings in front of him.
I heard it in the sound of the metro trolley hooting it’s horn as an Asian tourist stood in front of it snapping endless photographs while expecting the car to slow down in order for him to take home the perfect shot—and it did.
I saw it watching poor children diving between multi-million-dollar mansions on the Bosphorus with its treacherous tides, trying to cool off during the unseasonably hot September afternoon while old men wearing tattered clothes caught anchovies on multiple hooks for their families evening meal.
I heard it listening to people extolling the quality of Armenian and Kurdish food as if neither culture had a painful history in Turkey.
In Cappadocia I felt it crawling through endless caves dug into the soft rocks by Christians in the first century, preferring life without sunlight to death by Roman soldiers.
I witnessed it in the farmlands surrounding Izmir as Muslim men and women avoided eye contact on the road as my wife reminded me that saying hello to everyone, especially women was not a culturally correct thing to do.
I felt it rising at dawn in a hot air balloon over Göreme and saw the wonders of this country on a vessel guided by wind, something the pilot had no control over.
I tasted it when offered pumpkin seeds in a field whose meat was always left for the animals to eat.
I marveled at the cats who respectfully sat on the pavement by my table and waited for me to offer them food, gracefully moving on when I didn’t.
I felt it in the coldness of the onyx blades used to carve out an underground city that housed 40,000 people, that 1000 years later would be used to make lifeless miniature Sufis for the tourist trade.
And I imagined the thousands of pidgins at the entrance of 3000-year-old caves signaling the approach of Roman Legends, while providing it’s inhabitants with eggs, meat, and guano.
So what did I learn from this 8000-mile journey that crossed 11 time zones? We have choices in life: we can either adjust to the circumstances over which we may have little or no control, or pretend that we do, and as did the few early Christians who didn’t want to live in caves, endure consequences far worse than not seeing the sun.
Possibly I could have learned the same lesson closer to home, say in Daly City or Hayward. But then, it wouldn’t have been an adventure and I wouldn’t have realized the importance of visiting cities where cruise ships don’t dock.
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“Daddy, please come,” my daughter said on September 11th. Together, we watched the towers fall. Me, from the safety of my San Francisco home. She, from an office building in Rockefeller Plaza, wondering if her friend survived.
In August, I had scheduled a trip to visit her on September 18th. Nationwide, the planes were grounded and I didn’t know when the airports would reopen. But I knew I had get to New York. Mostly to give support to my daughter, but having grown up only one-hundred miles from New York City, I felt an affinity not only with the city, but also it’s people and culture. Only a few days before my scheduled departure, the Federal Aviation Administration announced that on September 18th, the planes would start flying again.
As I waited to board my plane at the Oakland International Airport, I heard, “He’s moving towards the gate!” It was a security guard frantically speaking into her walkie-talkie as she tailed a well-dressed man of middle-eastern decent. Within a few minutes, three policemen appeared and trotted through the terminal trying to catch up with her. It was the beginning of ten days where the events I witnessed and was involved in generated emotions that are still as vivid today as when they originally occurred.
In New York City, it began when I went into the subway at Lexington Avenue to get on The 6 Train to lower Manhattan. Walking down the stairs, I heard the refrains of Ava Maria played on an accordion as pristine pictures of the missing appeared on graffetied walls. The missing were always smiling, sometimes with friends, but mostly with children. “Have you seen him?” “Have you seen her?” the posters read. Throughout New York City they kept reappearing as did the tears of people who stopped to read or even glanced at them.
When I exited two blocks from were the Twin Towers once stood, I saw empty gray buildings beneath a blue sky, as earth generated clouds drifted up and vanished. The smells of devastation and death combined, easily passing through the clean white mask given to me by a tired policeman.
I saw people push to photograph images that were too horrible to forget of twisted steel skeletons guarding lifeless spaces. Spaces that once held the dreams of people whose families waited for news, but already knew.
From atop one building a Sousa march tune blared from speakers for the benefit of people who were too numb to listen or too grieved to care. And phamleteers unashamedly thrust words of salvation and doom into hands willing to accept anything.
I watched reporters trying to tape the perfect interview, while thousands of cell phones described images that had no words, to people who listened, but I’m sure couldn’t understand. And later that day, at the Metropolitan Museum of Art, the entrance to the Islamic art exhibit was closed.
In the city’s parks, I saw babies play in a world that was newer than they, while pigeons took crumbs from trembling fingers, and emotionally bruised and battered New Yorkers pulled out damp cloths from Gucci suits and stained overalls.
At the half-priced tickets kiosk in Times Square, a steel drum played patriotic songs as an indescribable smell stopped conversations in mid-word, until it moved on, spreading throughout the boroughs.
That evening, my daughter and I walked past candles glowing in front of a fire station in which flags were readied to wrap comrades. Later, in a mostly empty restaurant, we listened to glasses clink to missing friends, as we and other strangers who heard the toasts sobbed along with those offering them.
For six days I aimlessly wondered through a city that I had known in different times and realized it would never be the same. The memories I took back with me to San Francisco were more surreal than a Dali painting. It’s been ten years, but they still slip through the walls of my consciousness, riding on innocent sounds and visions.
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Of course you remember she says.
It was your sixtieth, and
we came from across the country
to express our love.
I don’t remember, I say.
But you do remember she says.
We ordered your favorite Indian foods
sang songs of the 60’s
and danced to Eleanor Rigby.
I don’t remember, I say.
But you must remember, she says.
We drank Woodford Reserve
and reminisced about motorcycle days
and drugged pleasured nights.
I don’t remember I say.
But surely you remember, she says.
we spoke of memories
some new and others old
that made you, you.
They all look at me as if
I’m playing a game
designed to torture
worse than Abu Ghraib
And with resignation I say
yes, Yes, YES!, I DO REMEMBER!!
Punctuating each word hoping
the melody hides the truth.
And finally people relax
wanting to believe
I had too much to drink
or was too lazy to think.
But I don’t remember.
I don’t remember the wonders
I’m told defined my life
and changed others
who thanked me for entering theirs.
My friends repeatedly tell me
of events whose weight,
once significant
now have shrunk to pebble-size,
Evaporating into wisps
that slip from my mind
as if they were breaths
escaping through a gossamer web
I’m told I cried
When my children were born
both times,
and I knowingly nod my head
But only remember my tears
I’m told I exchanged whispers with Martin Luther King
as citizens of Montgomery
hid in shadows
holding gray cold objects.
But I only remember the smell of night blooming jasmine.
I’m told I sent students
on livelong journeys
and taught children
who couldn’t speak to speak.
But I see only a few nameless faces.
I’m told I eased
the lives of many
with compassion
as they prepared to die.
But I only remember torn pieces of faded pictures.
All bits of yesterday
the most important
slowly descending without control
as if vacuumed from my mind,
On the way to a doorless place
I don’t know how to enter,
Or if I could, what I’d find,
Or once found what I’d do
And the repetitive painful questions
keep coming from those
desperately hoping
That the me I was is still within.
I see their fear painfully grow
as if it isn’t me they’re seeing
but a stranger they now fear.
So, with a smile I again say,
Or course I remember.
They relax comforted in believing
it was just a fleeting senior moment.
Like ones they have and laugh at
before their own doubts begin.
And I wonder how often
I’ll need to repeat this painful drama.
Smiling and nodding
because they don’t understand that
I can’t remember.
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A friend recently said to me, “When my friends learned I had Alzheimer’s, many looked at me as if I had some kind of contagious disease. Then, they just stopped calling or coming around. Don’t they know it isn’t the bloody plague?”
What It’s Not
I’ve spent eight years with people who were in various stages of Alzheimer’s and other forms of dementia. Although my hospice patients in San Francisco were all in the later stages, I heard painful stories from their families of how people reacted to them when they still could function with some help.
From others who are in the earlier stages, I heard identical stories involving relatives, long-time friends, and close colleagues who drifted away or interacted with them as if they :
-Stepped back into their childhood
-Possessed the mind of a developmentally delayed child.
-Or became psychotic
None of these are true, yet as a society, we treat those with dementia as if at least one of these misconceptions was the gospel.
The Harm We Cause
When we act out of ignorance, we may unintentionally cause immense harm to those who are struggling with the disease. One person with dementia, who held a Ph.D. in chemistry, no longer would order a meal from a fast-food chain because, according to him, “The server made me feel like a moron” when he couldn’t quickly decide what to order from a board menu containing more than 50 items, with a multitude of combinations.
Changing Identities
As memories are lost and the ability to manage those that remain becomes a struggle, the identities of people with dementia change. We all view ourselves—our identity—by the roles we play, the activities we enjoy, the affiliations we have, the values that structure our lives, our abilities, and relationships. Imagine how your life would be transformed if significant parts of your identify disappeared–sometimes quickly, at other times slowly, and maybe the worse, stealthily.
And It’s not only self-perceptions that create identities, but also how others perceive us. Imagine what it must have been like for that chemist who spent 8 years in graduate school and was involved in the development of life-saving drugs to be afraid of ordering a hamburger from someone who possibly never graduated high school.
Pulling the Sharp Points Close
Life is full of choices. We can run away from those with the disease, either out of ignorance or fear of what we might eventually become, or we can choose to put ourselves in the place of someone with dementia. Tibetans have a saying that if you want to get over the fears in your life–the sharp points–bring them closer, rather than running away.
But, eventually, you won’t be able to run away from Alzheimer’s or other forms of dementia. Statistics say that many of you reading this article will develop dementia. If you’re 60, you have a 1% chance of developing some form of dementia and your risk increases every year until you reach 85 when it levels off to 35%. If you have a parent with early onset Alzheimer’s your chances of developing the disease dramatically increase. And if you don’t know someone who is close to you with Alzheimer’s or other forms of dementia, trust me, you will.
How to Help
In many ways, having dementia it’s like being dropped into a strange country with customs and a language you don’t understand. And just as you’re learning how to maneuver your way, something changes and you have to start all over again. And nobody is there to provide you with a GPS for getting out.
So how would you react if was your spouse, your parent or a friend who had dementia? Instead of providing lists of “shouldisms” and going into the specifics of Alzheimer’s and dementia (see the links above), I thought I’d just suggest some things to consider the next time you interact with a person who has or you suspect has dementia.
Be Patient. It may take longer to process information
Memories are not willingly lost. There will be things someone with dementia won’t remember, both recent and distant. Not remembering has nothing to do with not trying.
Accept changes. Dementia is progressive. The person’s abilities today may be different tomorrow.
Offer help to the person. There are few things more frightening then being disorientated, such as being a few blocks away from your house and not knowing how to get home. When you see someone who is obviously confused, don’t be afraid to offer help. The worse that happens is they say “No thank you.” The best that happens is you’ll provide unimaginable comfort to another human being.
Offer Help to the Caregiver. Unless someone has been a long-term caregiver, they have no idea of the effort it takes. Offer to help. Anything will be appreciated. Knowing that people care is a blessing to the person receiving the offer, and as my mother would say a “mitzvah” to the person making the offer.
You live in different worlds. As with any chronic or terminal disease, almost everything is seen through the perceptual filters of the disease, from noises to the frustrated looks of fast food cashiers.
Be Compassionate. Imagine the person with dementia is your parent who you love dearly. How would you want other people to interact with him or her and even more importantly, what would you want them to feel after the interaction?
Leave Them With the Best You Have to Offer
Yes, the person you once knew as gregarious will eventually withdraw inward to the point where you may not be able to connect with them. But that may be years away. Enjoy their presence while you still can and offer them the support and compassion you would want if it was you who were slowly moving on a one-way road to a strange, structureless place.
We don’t know what the person with dementia takes with them to that place we’re not allowed to enter. But doesn’t it make sense to give them memories that are pleasant rather than ones that aren’t?
(to read Of Course You Remember, a poem related to this article, press here.)
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Originally Published as Steve & Mac
Stan Goldberg
North Beach Beat, Arts and Literary Edition,
December, 2004
Through an old sealed window,
the garden softens as daylight fades,
and in the shadows a hand still strong
caresses another that’s not.
He sits daily in a hospital chair,
Uncomfortable, yet never complaining,
surrounded by odors of life and death,
watching a part of himself move on.
Tenderly looking at Mac,
he sees the curled, taut body
leaning toward him.
Both become more peaceful,
as together, they move to
real and imagined places.
Soft words gently fall on ears
understanding intent, but not words,
and monologue becomes dialogue
as Mac’s thoughts become Steve’s words.
Opening cloudy eyes, he smiles,
and forces stiff fingers to squeeze
the hand still gently clasping his,
and both understand.
Their lives, intertwined for 40 years
still move together,
but now at different speeds.
One lingering, the other comforting.
Both wait for the separation
they know will shortly come.
Today? Tomorrow? What matter.
They’ve had each other
and always will.
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This article was originally published in Saltwater Fly Fishing, December, 1999
Almost every trip now is a fishing trip. Whether it is a professional conference in Anaheim or a visit to see my son at his summer camp in the Adirondacks. So when it was decided that as a family we would go to Kauai for Easter, I pulled out every old fly fishing magazine I owned along with the few books available on saltwater fly fishing to see what I could learn about Kauai. Zip. Dinato. Nothing
It seemed that Kauai was a non-destination for fly fishing. The information I received from the Hawaii Tourist Bureau was also devoid of anything useful. It mentioned the wonderful off-shore fishing for billfish and huge caches of rock fish taken by the local charter boats. But nothing on fly fishing. Calls to the charter boat operations on Kauai were equally disappointing.
“Fly fishing? You mean like for trout? This is deep sea stuff man. Maybe you want to call the people who do inland bass.
“No, I’m interested in fly fishing for saltwater game fish. On the beach, or from a skiff or even for billfish offshore.”
“Oh, I see, you made a mistake, you wanted to call the Bahamas but you got Kauai instead, right?”
“No, I’m coming to Kauai and I want to do some saltwater fly fishing.”
“Forget it. Nobody does fly fishing here. Big tackle and big fish. You bring your spinning outfit for the beach and use bait like we natives do. You come with me offshore and we catch Mahi Mahi, Ulua, Ahi, Uku, Ono, and A’a. Or if it’s no good, we go over to the reef and get many stuff there”. There was a pause, then in an angry voice the charter captain said, “Hay, is this you Mano? You trying to play a joke on your uncle?” With that the telephone was slammed down.
So much for friendly advise from the islanders. I was beginning to think that fly fishing in Kauai was going to be a Quixotic quest. There was still one chance left. The San Mateo International Sportsman’s Exposition was to take place a month before our trip. All the legends of saltwater fly fishing would be there: Lefty Kreh, Chico Fernandez, Dan Blanton, Flip Pallot, and who knows how many others. I would still be able to spend almost every day at the show, gathering information on all aspects of fly fishing, but especially on saltwater fly fishing. If these guys didn’t know what could be done in Kauai, nobody would. If I couldn’t get any information, then, and only then, I would then resign myself to taking along my old surf rod and fishing with cut-up squid.
The seminars at the show were terrific. In a matter of minutes I was able to correct years of ignorance, sloppy techniques and useless bits of advise passed on from one generation of fly fishers to another. Unfortunately, nobody even mentioned Hawaii in their presentations. After each of the presentations on saltwater fly fishing I would go to the podium and ask the speaker the same question.
“Do you know anything about fly fishing in Kauai and what flies should I be tying?” The answer was always the same. “Fly fishing in Kauai? Nobody fly fishs there. I hear that they have some bone fishing on the Kono coast or is it Molokai? Why don’t you call some of the local charter captains there? They probably can give you more information.”
Although I learned much about every aspect of fly fishing at the show, Kauai was still a black hole. Fly fishing was either an outlawed houli (mainlander) practice or something so wonderful and private that no one was willing to talk about it.
The show was a wash-out in terms of getting information on Kauai, and the thought of throwing frozen bits of squid to fish was too depressing to accept. I would bring my fly fishing equipment! As the time for our trip drew close, I realized that this probably would be nothing more than a practice session for Costa Rica. I would be going there shortly after our Kauai trip to deliver a workshop on stuttering therapy, then off to fish for tarpon on the Rio Colorado. I was told that I would need to routinely cast 100 feet using lead core if we fished in the ocean. After repeatedly banging myself with 35 feet of 385 grain line at the fog shrouded casting ponds in San Francisco’s Golden Gate Park, I couldn’t ask for a more beautiful training ground then Kauai. At least nobody knew me there and they might believe that raising welts on one’s back was a normal part of this crazy form of fishing.
With my hectic schedule, there was little time to tie flies. Contrary to popular opinion, university professors work long hours. Based on all the information I received, I knew that what ever I went with would probably constitute the entire stock of fly fishing equipment in Kauai. The night before the trip, I tied a few Lefty’s Deceivers in various colors, some Glass Minnows and a Clauser Minnow. This was just going to be for practice anyway. and I desperately needed to sleep. With only 6 flies I knew that my fishing would be limited.
Since once having an airline lose my rod for two days, I’ve always carried them with me on the plane. As it went through the metal detector at San Francisco International Airport, the security guard stared at me as if I was a terrorist and asked what was in the metal tube.
Although I was tempted to say “an air to ground missile”, my wife’s look of admonition caused me to think more rationally. “A fly rod” I answered. He smiled at me and shook his head with approval. Maybe this wasn’t going to be the disaster I envisioned. When we arrived in Honolulu, we had to go to the inter-island terminal for our flight to Kauai. Another metal detector, another security guard, and another question.
“What’s in the case?”
“A fly rod” I again answered, but this time with a smile.
However, there wasn’t an approving nod from this guard. After looking at me with the most pitiful look I had seen since I used the word “dungarees” instead of “jeans” in front of my daughter and her friends, he said, “A fly rod? Are you telling me that you’re taking a fly rod to Kauai?” I felt as though I had just committed an unforgivable sin and probably the headlines in the morning paper would read,
HOULE PROFESSOR BRINGS FLY ROD TO KAUAI
THOUSANDS HYSTERICAL
RENEWED CALL FOR SEPARATION FROM THE STATES
With great trepidation, on our first full day in Kauai, I decided to try fishing on the grounds of our condominium complex. The rocks jetted far enough out that I could get a line into the water that was at least 12 feet deep. The words of the 75 year old man came back to me, who, after watching me wince with each slam of the line on my back, had offered his advise to me at the casting ponds.
“Big slow open loops and never look back unless you want to look like Popeye for the rest of your life”.
With little wind, I was able to cast the most beautiful Lefty’s Deceiver I had ever tied 60 feet without permanently disfiguring my back. As I began retrieving, the fly immediately lodged in the coral just below the surface. No matter what technique I used, it wouldn’t come free. Finally, with a hard tug, I broke off the 15 lb. test leader. For some expert fly tiers, losing a fly as easy to tie as a Deceiver is something that can be easily shrugged off. But for me, a struggling semi-competent tier, losing any fly, while not as traumatic as losing a family member, is an event worth a little mourning. Especially, when it’s the best one you ever created! As I turned my eyes from the piece of coral that ate my masterpiece back toward the condominium, I saw 10 people watching the debacle. It seems that a young child had seen me go down to the rocks and thought this was something his whole family should see.
As they walked down to the beach, they informed other guests that something interesting was happening on the rocks. Events like that make you want to think about mandatory vasectomies. I immediately put on a Glass Minnow and tossed this one 90 feet. As the fly turned over perfectly and plunged into the azure blue water, I could see the father’s expression that said “maybe I should get into this sport”, and his wife whose look said “Oh brother, another stupid thing for him to fool around with instead of working on the house!” As a teacher, I was pleased. Here I was, a pioneer, a role model for someone who wanted to join the fraternity. With self-adulation I began retrieving. Again a hang-up. Again a break off. The expressions began changing now on the faces of my observers. I’m sure my new student was thinking “maybe this isn’t the great sport it’s cracked up to be.” Gratefully my son came down to the water and informed me that it was time to leave and find a place for him to boggy board. Since I now had lost 40% of my flies in less than 5 minutes, I thought it might be a good idea to stop off at a tackle shop before searching for the ideal boggy board – fly fishing beach.
“Could you tell me where I can find a tackle shop?” I asked the clerk in the office who was dressed in the flower shirt that I am sure all hotel personnel throughout the island must wear in the presence of mainland tourists.
“Of course. We’re close to the best tackle shop on this part of the island. They got everything there. Go down the highway about one mile and then go into the shopping center on the left. Payless Drug Store is right there.”
“Is it next to Payless?” I asked.
” Next to? Oh no! It’s right there, right inside Payless. Go inside and then go to the back of the store. Look for the shoe section. You can’t miss it. Payless got everything. Shoes, candy, fishin stuff. Everything!”
As I drove toward Payless I kept admonishing myself. Why didn’t I start tying a little earlier? So what if I didn’t send in those last two chapters to the editor? How important was the book anyway compared to fly fishing in one of the most beautiful places on earth?
As soon as I walked into the store I immediately saw the “tackle shop”. A prominent display located between shoes and auto parts. The whole back wall was covered with everything a bait angler or off-shore fisher person would need, from rods perfect for 400 pound tuna to power bait for bass in the inland waters. As I scoured the little packages of hooks, jigs and lures, I saw something that vaguely resembled a fly. There were 6 of these things in the package. It looked like a #12 1x hook poorly wrapped with green chenille and four pieces of hard monofilament spayed out toward the tail and attached to the head with a staple. Since the writing was in Japanese I had no idea that these abominations were used for. I grabbed a pack and keep looking for anything that I could modify. Nothing. In the best tackle shop on this side of the island the only thing I found was a pack of ridiculously tied plastic flies with a description of how to use them in Japanese.
I took them to the clerk at the check-out counter who was humming what sounded like a Lawrence Welk classic.
“Excuse me, could you tell me what these are used for?”
He stopped in the middle of his rendition of “Lady of Spain” and slowly examined the package, turning it over twice, then thoughtfully said, “I think for fish.” In the states I would have taken this as a bit of sarcasm, but not here. He was serious. He continued ” I’ve been working here for 5 years and I never seen anyone buy these. Do you really think the fish are going to bite that? How about some nice frozen squid? We got a new batch over there in the freezer”. My depression grew. Hopefully nobody would be on the beach when I fished.
I have fished the surf in San Francisco, Florida, British West Indies and in Mexico, so I knew the importance of finding some place were the wind wasn’t too much against me and if possible to have the waves pull my line out. These conditions usually occur if you can find a sand bar close enough to shore to safely wade to. They not only allow you to cast with the incoming wind and breakers, but the sand bar often creates a hole in which fish can leisurely pursue their pray.
As we drove around the island I noticed a spot in Waihlua Bay were the Waihlua River flowed into the sea, forming a nice sand bar that created a hole that was at least 7 or 8 feet deep and 50 feet long. Logic said that this should be a good holding spot. I pulled out my rod and strapped on my stripping basket. Hopefully, nobody would be watching. I could use this as a practice session, perfecting my double haul for Costa Rica. The only place to park my car was in a lot at the far end of the beach. In order to get to the mouth of the river, I would have to walk about 100 yards down the beach, past the 15 locals who had positioned themselves throughout the stretch. So much for anonymity.
Hopefully they would be so engrossed in their own fishing that they wouldn’t see me in my Christmas Island wading boats, swimming trunks, Albert Einstein cartoon T-shirt, florescent blue flowered baseball hat and a 9 foot 9 weight rod and reel, the likes of which I’m sure had never been seen on the island. Although I managed to go unnoticed as I quietly walked behind the first few fishermen, the rest spotted me as I tried to nonchalantly stroll the 100 yards to my spot, which fortunately was unoccupied. It seemed that the longer the locals had to observe me, the more time it provided them to develop body postures and facial expressions designed to humiliate me. By the time I had passed the last person, I could see that my observations from the road were correct. Geographically, it was a great spot. I was able to wade on top of the bar about 40 feet from shore and cast with the wind and waves into the hole. I tried each of my remaining 4 flies with no luck. At least the sandy bottom graciously gave them back to me. With each cast I knew that 30 eyes were fixated on my every movement. I have given presentations to over 600 of my colleagues and felt less angst then I did casting in front of 15 men who I didn’t know, would never speak to, and would have no relevance to anything I would ever do in my life.
I found that the easiest way of retrieving in the surf is to tuck the rod under my arm and use both hands to pull in line in the stripping basket. This allows you to have a more direct line to the fish and set the hook fast and hard. After 15 minutes of using various retrieving speeds, the locals mercifully began to ignore me. They probably thought, “Just another dumb houle doing his mainland thing here.” I had desperately wanted to catch anything, even a sand crab, just to show them that I wasn’t completely crazy. But nothing.
I had gone through every fly that I tied. The only thing left was those ridiculous looking Japanese plastic flies. Reluctantly, I tied one on without impaling my finger on the stapled head and started fishing. On the fifth toss I got a strike. Well, maybe not a strike, more like an anemic tug. As I retrieved the line I could feel that there was something that actually was fooled by my Japanese fly. The jubilation I felt equaled the feeling I had when I caught the first rainbow on a fly I had tied. As the end of the line came closer I could see a thin wiggling creature about 10″ long. It was a trumpet fish, a fish similar to a mainland needle nose fish, except blessed with a musical instrument for a nose. Not exactly a game fish, but maybe enough to rescue my self-respect.
Without releasing it, I let out line and looked to the shore. Nobody was watching. I tried to develop a little bend in the rod by leaning backwards and even walked up the bar, trying to simulate a decent strike. The men were sitting on their beer coolers and just barely looking at their own lines. I no longer was an interesting diversion, just one of those tourists who come to the islands, spend money and make fools of themselves. I pulled in the line and carefully released the little fish. I could tell that he was as embarrassed at taking the fly as I was of using it. As I looked to tie on one of my remaining real flies, I noticed that there was something hidden underneath my tippet spool. It was a Comet that I had been using for steelhead fishing on the Russian River in California.
I thought I might as well use it, after all, this was just practice for Costa Rica. With the second cast the line went taut 1 foot into the retrieve. This was not a trumpet fish, nor obviously was it a steelhead. Whatever was on the other end that just got fooled by a poorly tied fresh water fly was angry and decided that the hole it had been using as a luncheon spot should be traded for the open sea. As the running line was pulled out, I still had no idea what I had hooked. I guess that is one of the most exciting aspects of saltwater fishing. Until the fish jumps or surfaces at your feet or at the side of the boat, you could have anything. As the fish turned towards me, I furiously reeled in line as fast as I could. About 100 feet from me, parallel to the sand bar and directly in front of the fisherman closest to me, the fish jumped at least 7 feet out of the water.
I still had no idea what it was, but I could hear one fisherman yelling something down to the next person, who in turned yelled to the next person, until everyone on the beach stopped fishing and began walking towards me. After playing the fish for 10 minutes I was able to get it close enough to see what it was. I didn’t know it at the time, but it was an Ono, the Hawaiian equivalent of a bonefish. It was approximately 20″ long and weighed about 4 pounds. Hardly a trophy, but I don’t think I ever caught a fish that gave me more delight. I carefully lifted the fish out of the water, just high enough for everyone to see, gently pulled out my steelhead fly, revived the fish and let it swim away. All of this of course being done in the most casual manner, as if this was just another day of fishing.
When I started to cast again, I could see that although everyone had gone back to their rod locations, they were now watching my every move. Not in the way they had done when I was providing them with the material for what would be an amusing story, but with the kind of awe I have only seen in the eyes of a client who wrongfully believes that I was the person responsible for increasing their ability to speak fluently. It had to have been luck. Fishing blind with a steelhead fly in a place where nobody fly fished is not an exercise in fishing knowledge; its just dumb luck.
However, if I was to catch another one, I would have to at least replicate what I had just done. Since I thought I was just practicing, I didn’t remember the spot I had cast too, nor the length or speed of my retrieve. The only thing I knew for sure was that I was in paradise, fishing for something I didn’t know the name of, with a steelhead fly, an amazed audience, and the future reputation of fly fishing in Kauai depending upon that I was about to do. I tossed the fly in the general area of my first strike and began retrieving. This time I would try to remember what I was doing.
The first retrieve consisted of 12-15″ strips with erratic movements. First fast, then slow, then medium. Nothing. I remembered reading in one of my books that there is nothing subtle about the movement of a bait fish when it realizes that it is about to become another part of the food chain. I tossed again and waited for the lead core head to drop into the center of the hole. Of course my audience was still there, not caring if Neptune himself would come out of the sea and take their lines. I was the center of their attention now and probably would be until I left the beach. I placed the rod under my arm and retrieved fast with 15″ strips.
At about the six strip the line went taut. I set the hook, held onto the line and before I had a chance to reel in the excess line in my stripping basket in order to play the fish off of my reel, it began heading for San Francisco. The line jumped out of the basket and peeled endless yards of Amnesia off the reel. My rod now resembled the neck of a crane looking for sand crabs. Catching that second fish was just as exhilarating as the first. Although I knew what to expect, the excitement of hooking into his aquatic performer was thrilling.
I could feel that it was definitely bigger than the first. It pulled out to sea for about 100 feet than began making a run that was parallel to the beach. With any luck it would position itself in the middle of the line of bait fisherman and perform an acrobatic movement worthy of a Michael Jordan dunk shot. Some days when you fish, you feel that you can’t do anything right. Other days no matter what you step into, you still smell like the expensive perfume you wish you had given your non-fishing wife before telling her about an upcoming fishing trip.
Today, I felt drenched in Channel No. 5. The fish not only had gone parallel to the beach, but had moved toward shore. The fishermen where pointing to the movement of my line when the Ono jumped straight up in the air, no more than 30 feet from the closest fisherman. Although the leap was not as high as the first fish, this was a much bigger fish, and being closer to shore, a more dramatic performance. After playing it for 15 minutes, I was able to bring it close enough to me to land and gently cradle it under its stomach. I felt like emulating the bass fisherman, Jimmy Houston, on ESPN who gratefully gives each fish a kiss before releasing it. Fortunately, I regained my senses; this fish should be respected and released without that indignity.
It was getting close to the time I was supposed to meet my family for dinner. As I walked back to the beach, I noticed that each of the fishermen were positioning themselves so that they could nonchalantly encounter me as I walked back to my car. The first two merely nodded their heads approving and barely smiled. What a change from the look of patronizing disbelief they had given me when I first came on the beach. When I came upon the third fisherman, he put down his pole and obviously wanted to talk.
“Can you show me what you used there to catch those Ono?” When I showed him my Comet, he turned it over, examined each part of it and shook his head. “You catch other things with stuff like this and that rod?”
I feigned the all-knowing “arrogant guide” look and said “Everything. I use them for all fish.”
It isn’t often when you can see the look of true reverence on another person. It is quite a humbling sight. To have that look directed to you may be great for the ego, but can also be very embarrassing when you know you don’t deserve it. By the time I walked back to the car I could see that all the fisherman were standing together, and one of them was trying to demonstrate fly casting to the others with his surf rod. I decided to come back tomorrow and try it again. The next day was Saturday and as I walked down the beach with my son and daughter I saw that the stretch of water I had laid claim to the previous day was now occupied by children in inner-tubes, adolescents on boggy boards and adults attempting to get the final crisping effects of the sun before heading home to the mainland.
This obviously was not the place to fish on weekends. I decided that this would be a day to just relax, watch my son and daughter and remember what I had experienced the previous day. As I began to dose I could hear a conversation between a man and woman walking down the beach.
“No, I’m not kidding you. This guy caught two fish on a thing he calls a fly rod.”
“Get out of here! You been drinking again before you picked me up?”
“No, I’m telling you the truth. Ask any of the guys, they were all here. I realized that the couple hadn’t seen me and I enjoyed hearing the legend of the strange mainland fisherman.
“Look” the man said in hushed tones. “There he is”, pointing to me laying on the sand. “See, look at that rod. You call that a surf rod? No, that’s what they call a fishing fly rod. No doubt about it. Let’s go down to Payless and see if we get one and some of them flies he used.”
copyright 2003 Stan Goldberg, stangoldbergwriter.com
This article can be reproduced and distributed without charge for any non-commercial project if the source is provided.
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He pleaded with me to shoot him and the request wasn’t figurative. He was my first patient as a hospice volunteer in San Francisco. That moment, eight years ago, still haunts me. Not because I was confronted with a real life decision of immense consequences, but rather because I knew that I couldn’t honor his request, nor relieve the enormous psychological pain he was enduring—one that lasted for the next few months until he died.
It was the first and only time I was so directly confronted by the issue of a person’s right to die—from the person who wanted to control the timing of his or her own death. At presentations that I do, both in the United States and other countries, the question almost always comes up, “Do you believe in euthanasia?”
It’s a question almost always asked by someone who has strong ethical or moral convictions about the right to die. Instead of answering the question immediately, I try to learn about the person who’s asking it. Always, I find that their question is theoretical—there are no immediate real-world consequences for either themselves or anyone they know.
They ask it because of a campaign for or against euthanasia, something heard on television, read in a newspaper or religious journal, or it’s related to deeply held religious, ethical, or moral convictions. When I ask, “But are you dying?” The startled answer has always been “No.”
And I believe that’s the problem in most discussions about the right to die. There’s an old Arab saying, “If you want to know how well the medicine works, don’t ask the doctor, ask the patient.”
The way people who are healthy perceive their world is very different than someone who knows he or she has months or only weeks to live. The healthy person believes there will be enough time to make amends for their unskillful words or acts. For many terminally ill people, they know there won’t be. And with that realization, comes a shift in how they perceive their world and the relevance of values that have been untested in the crucible of living.
For some, like the late Reverend Rosi Jiyu-Kennett, the Abbess of the Shasta Buddhist Abby, adversity was viewed as a gift. One of the monks had the evening assignment of making sure she was comfortable before going to bed. As her cancer progressed, she was in constant pain. According to the monk, as he left her room he heard her say something like, “Thank you dear Buddha for giving me one more day to perfect myself.”
Roshi Jiju-Kennet looked at every day—even those filled with intense pain—as an opportunity to become a better person. Others also felt that their life was sacred.
A devote Catholic patient of mine was in enormous pain despite the heavy dosages of medication. For her, although she wished for an early death, her beliefs dictated that “God will take me when he’s ready.”
But for many other patients I’ve served, how they approached their deaths wasn’t quite as unambiguous as it was for Roshi or my devout patient. Knowing they would die soon changed how they viewed most things, including the values they thought were unassailable. I’ve listened to the words of terminally ill patients as they contemplated their journey towards death. For each, their view was partially determined by their past.
For some, there were no regrets, and their approaching death held no psychological demons. But for others. there were many. One athletic patient with ALS (Lou Gehrig’s Disease), was painfully obsessed with the thought of eventually being unable to move any part of his body. My first hospice patient believed he was responsible for the death of his son, and expressed remorse whose depths were unimaginable to me, as a father.
In discussions of the right to die, the focus tends to be on the physical pain a person is enduring. The argument is often made that with advances in palliative care (pain reduction) virtually all pain can be reduced to tolerable levels or eliminated. That’s not always true, especially if someone wishes to remain alert until he or she dies. And it completely ignores the psychological pain many of my patients have shared with me.
The religious and spiritual values that people use to guide their own lives and deaths should be respected, regardless if that involves the sanctity of life in Catholic doctrines, the Buddhist belief that adversity is important for preparing oneself for the next life, or the decision of a dying person to determine when his or her intractable physical or psychological pain should end.
What I believe is disingenuous is when someone who views their own death as beyond a distant horizon suggests how someone who is about to cross it should die. So the next time someone adamantly opposes a person’s right the die, ask the question, “But are you dying?”
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Many people believe that everyone lives in the same world. At an event, we all see, smell, taste, or touch the same things, and therefore, our experiences are identical.
But when we crunch the information into something that goes beyond observations, unique worlds—ones we may not understand—are created. For example, two people are listening to a Thelonious Monk CD. The first person, whose favorite musician is Lawrence Welk, hears discordant random notes. The second person, listening to the same cut, is a professional jazz musician and hears an incredible tune embellished by wonderful chords. The same event, but very different perceptions.
As you try to understand people with chronic illnesses, think about the Thelonious Monk- Lawrence Welk example. It doesn’t make sense to talk about an independent reality that’s the same for both you and the person you’re trying to understand.
Unique filters continually shape everyone’s experiences in accordance with their needs, fears, and beliefs. A patient once said to me, “I never know how long the pain will last, nor when it will begin again. No matter what I’m doing, I’m either waiting for it to go away or to start.”
The presence of an illness, either stable or progressive, shapes almost everything that is experienced. The constant presence of something that is life-altering effects people in more ways than non-chronically ill people may understand. The physician objectively talks about the minor changes required by his patient as his strength diminishes. You hear what you’ll need to do to compensate for living with your loved one in a two-story house. Your loved one hears that his life is over.
We often argue with friends and loved ones that their interpretation of what they heard or experienced is not “real,” or they are over-reacting to a situation. We are telling them what they should feel, rather than what they do feel. We are telling them that despite the effects of their chronic illness, their perception of the world should match ours. It doesn’t, and it can’t.
When I was still at San Francisco State University, I treated a young woman who had a stroke and recovered most of her speech and language functioning. To someone who didn’t know her, there were no outward signs that her ability to organize the world was severely compromised.
“Maybe I should wear a sign,” she said, “something like My Brain is Fried.” She went on to tell me that her “non-chronic” friends continually interacted with her based on how they thought she should experience the world. They would choose restaurants that were noisy, because for them it meant this was a “happening place.” Noise for my client meant it would be an evening of confusion, frustration, and humiliation when she would pleasantly look at someone who was speaking, smile, nod her head, and have no idea what was being said.
A hospice patient expressed similar differences between the world of people who didn’t have chronic illnesses and those that did. He said that as portions of his memory disappeared, he struggled to hold on to his short-term memory. While in the past he could keep a multitude of dates in his mind, now, even with writing them down, he forgot them since he wouldn’t remember to look at his calendar.
When he was chastised by a relative for forgetting an important date, he realized that few people understood how his life was transformed by a chronic illness. His inability to remember was interpreted by the relative as being irresponsible. For my patient, forgetting the date meant that his chronic condition was progressing. Same event, different reactions. Same event, different worlds.
So the next time you are perplexed by the “over-reactions” or “bizarre behaviors” of someone with a chronic illness, don’t assume that they were being inconsiderate or thoughtless. It just could be that you don’t understand how their illness shapes their world view. You’ll be amazed how far a little compassion, acceptance, and a lot of understanding will go.
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I’d been a bedside volunteer for more than five years; sitting with dying patients and their families once or twice a week for up to four continuous hours. Sometimes I stayed with patients overnight. Regardless how demanding my responsibilities, I knew that when I left the bedside, I’d have three to six days to “recover.”
It was a time to prepare myself for next week’s activities that could range from cooking a meal, to witnessing a friend’s active dying. My downtime—something that allowed me to recharge my batteries—is a luxury many caregivers don’t have.
I thought I understood what they went through, until my wife suffered a stroke from a heart arrhythmia. Overnight, my daughter and I became 24/7 caregivers for her physical and emotional needs. Fortunately, she recovered with no lasting disabilities. But the three-month experience left me with a new and deeper understanding of what long-term caregivers go through.
Addressing the physical needs of someone with a chronic or terminal illness is difficult enough. Adding in the emotional needs of both that person and yourself is like being tossed into a riptide.
I’ve been in patient’s homes where the physical caregiving was provided by health care workers; allowing the family to focus on the patient’s emotional needs. I’ve also been in homes where physical and emotional care were provided by the same person. Unless you have provided constant care for someone 24/7, it’s difficult to understand the struggle caregivers experience between satisfying their loved one’s needs and their own.
For example, after three weeks of redefining my life in terms of my wife’s needs, I stopped activities that had given me pleasure. Although I knew it was necessary to subvert my needs to hers, I couldn’t help feeling some resentment—a totally irrational emotion I was ashamed of having, since I did (and still do) love her, and knew my needs were trivial compared with hers.
Similar guilty feelings are expressed by long-term caregivers. Although these feelings are present, caregivers rarely feel comfortable talking about them. Why? Because the mantle of “Mother Teresa” is often imposed on them by others or themselves. Expectations, regardless of the source, can become strait jackets from which even Houdini wouldn’t be able to escape.
A patient once said to me, “Dying is hard work.” I agree. Possibly being the primary caregiver for a loved one is right up there in difficulty with dying. Caregivers experience flip sides of emotions; love—hate, acceptance—criticism, and gratitude—rejection, just to name a few that might occur in a single day. Some caregivers would say within a single hour.
Try to imagine what you might feel after giving up your life to care for an aging parent, who screamed at you that you weren’t doing enough for her because a meal was ten minutes late. And you knew her ingratitude would continue until her Alzheimer’s eliminated this hurtful behavior.
Having contradictory emotions is neither right nor wrong. They germinate from situations that are so expansive, those of us experiencing them are forced to sit still and just observe.
With increases in lifespan, people are living longer with chronic and terminal illnesses. That aunt who 10 years ago would have died from an incurable disease, is alive today and in need of constant care—maybe for the next five years. Will you be ready when it’s your turn to become a caregiver for a loved one?
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“How do I do this?” he said. His wife was just enrolled in hospice. “We’ve been married for 40 years, but God help me, I don’t know what I should be doing.”
It’s a question asked by millions of people every day when they anticipate or find themselves thrust into the role of caregiver for a loved one who is dying. Their involvement may be continuous, providing physical and emotional care, or sporadic and limited to conversations ranging from pleasantries to final goodbyes. While everyone wants to “do the right thing,” few have had the experience.
Who Will Benefit for the Workshop? This is a workshop for significant others who want to be as helpful as they can for their partners. For adult children who want to repay their aging parents for a lifetime of love. For family and friends who want to do what they can for people who have been an important part of their lives. And for parents who may have the dreadful task of helping their adult or young children die.
What Will Be Covered? In this interactive workshop, caregivers will learn more than 50 things they can do that will ease the death of loved ones and reduce their own eventual grief. The suggestions are based on 8 years of hospice experiences and 30 years of communications counseling.
Who Will Lead the Workshop?
The workshop will be led by Stan Goldberg, Ph.D., author of the award-winning Lessons for the Living: Stories of Forgiveness, Gratitude, and Courage at the End of Life. His next book, Leaning Into Sharp Points: How Caregivers Can Ease Loved Ones Transitions at the End of Life, will be published by New World Library in Fall, 2012. Stan has been a hospice bedside volunteer for eight years and is Professor Emeritus at San Francisco State University where for 25 years he researched how to communicate difficult emotions and taught more than 3,000 graduate students to implement therapy procedures based on his original research. Read the reviews of his workshops and also see videos of a past presentation.
How to Schedule a Workshop Agencies should contact Stan directly at stan@stangoldbergwriter.com or by phone 415-566-7200. If you are an individual, you can bring this email to the attention of an agency that serves you and your loved one.
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“How do I do this?” he said. His wife was just enrolled in hospice. “We’ve been married for 40 years, but God help me, I don’t know what I should be doing.” It was my first visit and the question was unexpected.
It’s a question asked by millions of people every day when they anticipate or find themselves thrust into the role of caregiver for a loved one who is dying. Their involvement may be continuous, providing physical and emotional care, or sporadic and limited to conversations ranging from pleasantries to final goodbyes. While everyone wants to “do the right thing,” few have had the experience.
* How do you begin the conversation of how much loved ones have meant and how much they’ll be missed?
* How do you ask for forgiveness for unskillful acts and words?
* Why is it important to sit rather than stand with a dying loved one?
* How do you give permission to die?
It is the lack of answers to questions of this type that repeatedly torment caregivers after their loved ones have died.
That’s what this book will attempt to change. It’s not a manual on death, or a blueprint of step-by-step directions for caregiving. This is a book of preparation. Preparation for significant others who want to be as helpful as they can for their partners. For adult children who want to repay their aging parents for a lifetime of love.
For family and friends who want to do what they can for people who have been an important part of their lives. And for parents who may have the dreadful task of helping their adult or young children to die. It’s also for those in the health caring professions who want to have a more in-depth understanding of the emotional turmoil that follows caregivers throughout the dying process.
Two terms are repeatedly used: caregiver and loved one. “Caregiver” is an inclusive term applied to anyone who wants to compassionately serve someone who is dying. “Loved one” is the person fortunate enough to have someone who wants to serve his or her needs. They are terms that apply to all of us; if not now then sometime in the future.
For the past eight years in San Francisco, I’ve had the privilege of being invited into the lives of dying patients and their families. The experiences have been nothing short of transformative. As a bedside hospice and vigil volunteer, I’ve served patients and their families as a compassionate friend and a midwife to death.
After thousands of weekly interactions I began seeing regularities and I listened to words that made some deaths easier than others. As a communication counselor for more than thirty years, I witnessed how the verbal and nonverbal transmission of heart-felt feelings affected the deaths of loved ones and enriched the lives of those who survived them.
What my patients and their families taught me was that how we prepare loved ones for their deaths, not only affects the peacefulness of their journey, but also the duration and severity of the survivors’ grief.
Most people look at death as if it is a single event, analogous to a light switch—the light is on or it’s off; someone is alive, then they aren’t. But death is a process that spans time, beginning with a terminal diagnosis and ending with working through grief.
How loved ones deal with it is analogous to a square dance where partners are continuously changing. But instead of other dancers, loved ones’ hands may be held by fears, beliefs, an unresolved past, and a nonexistent future. Into this witch’s brew steps caregivers whose primary goal is to help loved ones die more peacefully. They learn very quickly that death, both as a concept and a reality, is messy.
Death is always seen through the perspective of one’s own history, values, and fears. It is inherently tied to loss—what one had, what one will lose, and what will never occur. As it approaches, time frames shift almost effortlessly from the past to the present to the future in ways that are less than orderly.
There is a saying that death is to living as the elephant is to the jungle; both leave the biggest footprint. Yet, we in western society treat death’s impending approach as if it was a squirrel. We use words such as “eternal sleep,” “going back home,” “passing away,” “crossing over,” and many other terms and phrases that attempt to soften the end of life.
As afraid as we may be, our fears become even more magnified when it comes to being honest with our children. We hide the knowledge that a loved one is dying, believing that our action will spare them emotional distress. And when they pointedly ask about the absence or condition of a relative, we often become as disfluent as if we were answering a young child’s question of how babies are made.
Leaning Into Sharp Points: Easing Transitions at the End of Life, will be published by New World Library in March 2012.
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There were many things I did in college that were beyond my mother’s understanding. Becoming involved in the civil rights movement was the most difficult. S. Goldberg (2002) 1st Place National Greyhound Essay Contest
I stepped aboard the chartered bus and sat in a comfortable reclining cloth seat with a pull-down footrest. It looked no different than thousands of other Greyhound buses in the 1960’s. A gleaming silver box with sleek greyhounds painted on both sides that soon would be driven by a driver who was greeting entering passengers with a smile. What I didn’t realize was in twenty-five minutes, this bus would begin a journey that would change the lives of its passengers and the soul of the country.
It was March, 1965 and there was a nationwide call for college students to come to Montgomery, Alabama for the arrival of the civil rights workers marching from Selma. Black citizens were determined to register to vote and white state officials were determined that they would not. We boarded the bus in late afternoon with a variety of emotions and motivations. Most felt a moral obligation to help right a terrible injustice. Others were delighted to be missing classes. And a few were on the hunt for new partners.
The mood on the bus was relaxed as we left the University of Pittsburgh campus. Father Carroll and Rabbi Rubenstein discussed philosophy and moral imperatives with anyone who would listen. Some people formed pairs and started quiet conversations punctuated with affectionate words. Only a few thought about what might happen when we crossed over that imaginary line separating the North from the South. By dusk, folk songs were sung and political impressions had everyone laughing. But in less than ten hours the joyful innocence of this evening would become only a distant memory.
Throughout the night, the bus moved on, quietly through Pennsylvania, West Virginia, Tennessee, and Georgia. With each mile, we moved farther away from what was safe and familiar. As we crossed into Alabama at dawn, we were greeted with a beautiful blue sky and a huge billboard telling us, in no uncertain terms, to go home. Catholics, Jews, the Pope, anybody named Kennedy, Martin Luther King, the President, and northern agitators. We were not welcome and now that we were warned, we should be ready to face the consequences if we continued. On the right side of the sign was a white-hooded Ku Klux Klansman holding a flaming red cross and sitting erect on his white-hooded horse. With the cross pointed directly at our bus, it appeared that the rider was ready to leap off the sign and attack when the order given. Later, we learned that similar signs were erected on every road that entered the state. These signs were intended to intimidate, and they did just that.
Montgomery was still two hours away. Two hours to wonder if the decision to come had been the right one. Two hours to create images of what was waiting for us in a state that publicly proclaimed its hatred for who we were and what we believed in. As we entered Montgomery, the bus driver turned on the announcement system. Through tinny overhead speakers he said, “Can I have your attention please.” He didn’t need to ask for our attention. Although it was one-hunded miles away, everyone still saw that sign, but now in the face of every white person on the street who was staring at our bus.
“I just received a report from our dispatcher that there may be some unruly people on this street. We’re going to turn on to another one to get you to your destination. Now there’s no cause for alarm, but could everyone please move away from the windows”.
Before he even finished saying the last word, rotten vegetables and rocks pelted both sides of the bus. People screamed and dropped to the floor. Through a cracked and smeared window, I saw the distorted faces of hundreds of people. Adults, adolescents and children as young as five, were throwing objects at the bus while hysterically yelling. Although we couldn’t hear them, as each object hit the bus, we could feel their hatred. Behind them stood the Montgomery Mounted Police, some watching impassively, others smiling. The driver increased his speed and abruptly turned left into a narrow alley in which the bus could barely fit. On both sides only the brick walls of the building were visible, now close enough that their cracks and crumbling mortar lines were seen.
Minutes later, we arrived in front of the Jackson Street Baptist Church, located in what had been a quiet black section of Montgomery. We weren’t the first bus to arrive, nor would we be the last. Lining the street were seven other buses, all covered with splattered vegetables and some with broken windows. Within hours, an additional twenty would come. In a daze, we stepped off the bus. After the last person exited, our driver pulled a handkerchief from his back pocket and began cleaning the greyhound on the side of his bus. Although he tried to remove the splattered vegetables, he did little more than rearrange them. Within minutes, a young black man came out of his house carrying a bucket of water and rags. Without saying anything, he moved along side the driver and began cleaning the logo with as much affection as you would give to a loved, messy child. The driver, now with glistening eyes, nodded his head without saying anything. Similar scenes would occur with each new bus that arrived on the street.
For the next ten days, these buses and their drivers stood vigil while we marched, were hit by batons, trampled by horses, jailed, completed a hunger strike and spent intimate moments with Martin Luther King. They were waiting to take us home. Throughout our stay, every newspaper in the country, and many throughout the world, carried stories of the events in Montgomery and the march from Selma. In most of the pictures, only the non-violent demonstrators and their frenzied tormentors could be seen. In a few, the Greyhound buses, clean and guarded by their drivers and the community’s residents were visible.
Our journey home would be very different from the ride to Montgomery. No songs were sung, nobody arranged dates, philosophic discussions didn’t occur. We had witnessed and experienced the extremes of human behavior, from self-sacrifice to murder. During the fifteen hour ride, most reflected on what had happened to them, and how their lives would forever be changed.
It has been thirty-six years since the Selma to Montgomery March took place. Many view it as the turning point in the civil rights movement and have offered tributes to its participants: Martin Luther King, Julian Bond, Ralph Abernathy, James Farmer, James Foreman, Stokely Carmichael, the college students who risked their lives, and the people who lost theirs’ for an ideal. Everyone has received the praise they deserved except for one important player.The bus. In the 1960’s driving to the south in a car was too dangerous and flying there cost more than most college students could afford. The only safe and affordable way to Montgomery was on chartered buses, most of which were Greyhounds. It was in these chariots of conscience that committed young people became involved in an event that galvanized the country’s attention and made civil rights something more than a vague concept. Without the buses in the 1960’s, the civil rights movement would still have progressed, but I don’t think at the speed that it did.
I doubt any of these buses survived. When they were retired from service, most were converted into traveling motels for hippie communes, rock groups, and country bands. By now, I’m sure, all have been crushed into blocks of steel, unceremoniously trucked to smelting mills, and endlessly recycled into useful and common objects. But these buses were anything but common.
copyright 2002 Stan Goldberg, stangoldbergwriter.com
This article can be reproduced and distributed without charge for any non-commercial project if the source is provided.
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When Christians in the Middle Ages
extolled the virtue of holy missions
and heard that Crusaders killed innocent Muslims,
they cried out
“It’s not our fault.”
When Brigadier-General Reginald Dyer
murdered 1500 unarmed Indians,
members of the House of Parliament,
who had called them “children,” said
It’s not our fault.
When the people of Weimer
who cursed the Jews,
smelled and saw the smoke
coming from Buchenwald
they said,
It’s not our fault.”
When Martin Luther King and Medgar Evers
were assassinated,
Vocal opponents of equal rights said
It’s not our fault.
When the Houties and Toutsies
annihilated each other
former colonial occupiers said,
It’s not our fault.
When the May Lai atrocity was revealed,
politicians who called Vietnamese “Gooks” said
It’s not our fault.
When Harvey Milk was killed,
hate-sign homophobics said,
It’s not our fault.
When Dr. George Tiller was assassinated,
Taunting anti-abortionists said,
It’s not our fault.
When congressional members
supporting health care reform
were spit upon.
The right said,
It’s not our fault.”
And just like the German rocket scientists
who took responsibility for launching V2 rockets,
but not where they fell,
The Glen Becks, Shaun Hannities,Bill O’Reilys, Sarah Palins,
Michelle Bachmanns, and Rush Limboughs
will say, “It’s not our fault.
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I thought about my father’s family tree as I drove from Prague to Weimer. Thirty-three relatives had died in Auschwitz, three had been liberated from Dachau, but nothing was written about Buchenwald, the concentration camp I would visit the next day, November 11th, 2010.
It was Veterans Day in the United States and Armistice Day in Europe. I stood just inside the entrance and looked at the sign which could only be read by prisoners after they entered single-file through an iron door, giving the SS an opportunity to formally “initiate” them into the culture of Buchenwald.
Jedum Das Seine.
The words were elegantly twisted with an art nouveau flair. “To each his own,” means everybody gets what they deserve.
If I had relatives who were taken to Buchenwald, they would have been on my mother’s side. But all that I had was her Polish name before Ellis Island immigration officials changed it. My mother was Chaya Gutheiner from Chestakova, Poland. I couldn’t even rely on her birth date, since she changed it on her own accord, to make herself younger.
The Buchenwald archives listed three Gutheiners from the area surrounding Chestakova who died in the camp. One archivist told me that there were probably others, and since it wasn’t that common a name in Chestakova, most likely I was related. But it would take four months to get more definitive results. I left the office and entered the camp.
The camp (which is in the first chapter of a novel I’m writing), took an a reality that was surreal. It was as if every object and even the ground I stood on contained within it a history of unimaginable brutality.
All of the 30 wooden barracks were torn down by the Soviets when they occupied East Germany after the war, leaving only the foundations. Within them were thousands of similarly colored stones, and occasionally a lone flower placed by a survivor or a survivor’s family. Only two of the 22 three-story guard towers remained. But the crematorium, with its 100-foot smokestack, was impeccably preserved.
On the morning I was there, a severe storm blew across Europe, forcing most visitors to seek shelter from the wind and rain. I stood on the muster grounds and looked to where the prisoners would gather daily to see who would work and who would die.
I was alone as visitors sought refuge under the roof overhang of the Cell Block, a small building in which Russian prisoners of war were routinely killed by injections of a “vitamin booster” after marching hundreds of miles.
With nobody near me, I unwrapped my shakuhachi (Japanese bamboo flute). It’s an instrument that I play at memorials, sacred sites, and for my hospice patients in San Francisco. It allows me to express myself in a way not possible with words.
As I stood at the top of the muster grounds and looked down the slope to where the barracks had been, I struggled to make a sound. I don’t know if my failed attempts were caused by the emotions I was experiencing or the almost gale force winds that blew the notes apart before they became audible. I stood with my eyes closed and played as if notes were emerging from my flute.
Eventually, the winds abated somewhat and I looked to my right and saw the chimney that must have emitted my relatives’ ashes onto nearby cities whose populations insisted they knew nothing of what was happening in Buchenwald.
The notes started to flow, not melodiously as I had envisioned when I was given permission to play before the trip, but with a great effort and an intonation that could only be described as wailing. I have no idea what I played or for how long. When I finished my last note, as if on cue, the wind and rain stopped.
I have repeatedly read that once you visit a concentration camp, you’ll understand how the experience changed the lives of survivors (the theme of my novel). It didn’t.
I spent eight hours in Buchenwald walking among the ruins, reverently touching the carts that hauled bodies to the crematorium, descended into a cellar those walls were lined with hooks where bodies were hung, and walked on paths leading to the factories and the stone quarry. I left understanding less than I did before I arrived. How can you understand what the deliberate juxtaposition of opposites does to a person’s mind?
It began when I turned onto the four mile tree-lined road to Buchenwald, aptly named Blut Strasse (Blood Road) by the prisoners. Thirty-thousand were sent from various camps to clear the forest and build a two lane road and railroad bed in three months. Nobody is sure how many returned. If any of my relatives didn’t, the official records would have listed their death as a “heart attack,” or “natural causes.”
And as I walked down a bucolic tree-lined path to the quarry, I wondered what the prisoners thought the first time they emerged from the glen and saw bodies of those who were worked to death, as they eventually would be.
I looked at ledgers of names written in an elegant cursive style of more than 500 gay prisoners who were infected with typhus, and I couldn’t understand how physicians who graduated from the most prestigious universities in Germany could impassively chronicle the course of their deaths as if they were conducting important research.
I stood in the zoo enclosure just outside of the electrified fence, where, after children of the SS fed the bears chunks of meat, they glanced left and saw up to 30,000 prisoners in various stages of starvation, then turning right, saw and smelled the Thursday smoke rising from the crematorium’s chimney.
And even the name of the camp, “Buchenwald,” was based on the Nazi technique of calling something other than what it was. In English, “Buchenwald” means “birch forest,” something that sounds like a wonderful place to vacation.
I have often read historical warnings that say we need to remember the Nazi holocaust, so it could never happen again. But we do remember, yet holocausts continue.
Stalin’s Gulag
Mao’s cultural revolution
Pol Pot’s killing fields
Milosevic’s ethnic cleansing
The Hutu’s and Tutsi’s genocide of each other
And there are others too numerous to list. It appears remembering doesn’t work. Maybe we need to do something else—like trying to understand how a children’s zoo can be built within sight of a crematorium.
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It’s December and I just got off the C train at 53rd and 5th, when I see his arms flailing above the thousands of people ascending the stairs. He defiantly stands halfway up forcing everyone to move around him. Those closest try desperately to avoid brushing against his layers of soiled clothes. He’s in his sixties and wears a red elf’s hat that jumps skyward as he stretches upward, his body moving in sync to the opening words of Good King Wenceslas. First, the words disintegrate into random sounds, then the melody becomes a one-note drone. Eventually, there’s no pretense.
“Ban people not cigarettes,” he yells as two policemen standing off to the side with machine guns flinch, then shake their heads.
“Be a man, cut the umbilical cord to women,” he yells, this time causing many to grimace.
“Marriage brings grief,” he yells, and I see some people nodding in agreement.
“Life is short,” he yells, and heads bow and the incessant holiday hum diminishes. His words follow me into the subway car, echoing off graffitied walls, sandwiched between closing doors, and caressed by the aroma of damp wool. I begin jotting notes so I won’t forget. A young man looks over my shoulder as the train rocks and says, “Should I know you?” I shake my head. “Maybe someday,” I say wistfully.
Across the aisle a man in this thirties has sound buds pushed deep into his ear, masking the screech of steel wheels on twisted tracks. He plays bass on his crutch as Coltrane’s sax gives way for his riff. His right hand plucks imaginary strings as his left forms cords on the metal crutch, and only he hears Naima. Eventually, the frenetic movement of his fingers becomes more steady, more appropriate for playing backup and John once again takes charge to end the set, as he mouths the words Naima, Naima. The bass morphs back into a crutch and the exhausted musician limps out at the Lincoln Center stop.
It’s only a short walk to the S Train when I get off under Grand Central Station. Crowds gently move me forward as if they were friends taking me to a ballgame. Somewhere in front of me I hear the strains of a familiar tune coming from a side passage. I stop and see a balding man leaning against the soot-spackled wall, puffing out sweet notes from an instrument I can’t see through his caressing hands.
He stands alone in the long corridor. His sleeveless wool vest providing warmth, yet enough freedom to play his instrument which I now see is a child’s plastic flutophone. A white threadbare shirt peaks through the holes in his vest, and his pants—still maintaining crisp front pleats—is bunched around his waist and held up with a black belt whose end dangles six inches below the clasp. On the gum-plastered floor is a neatly folded summer jacket and in front of it, a small brown cardboard box that should be filled with bills this time of year, but isn’t.
I stop and hear Silent Night, than Dradel, Dradel, Dradel, and finally Danny Boy. Ignoring me, he opens his eyes and looks into the box, then leans back against the wall. After a few deep breaths he’s playing Mozart’s Sonata in C. Implausible sounds bathe the corridor, but still, no one comes to listen. Those passing one opening continue on to a rap musician’s regular spot. At the other end, it’s a dash to Starbucks before the next train. I move towards him and drop a bill into the empty box. Sounds flow from the child’s toy for thirty minutes as if Mozart had invaded his lungs. Already an hour late for an appointment, I reluctantly leave to catch the 5, and see tears of joy flowing from his eyes.
Not a terribly bad way to begin the holiday season.
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It was the type of conversation we’ve all heard, and then thought, “I’d never do that!” In a small restaurant north of San Francisco, I heard a woman loudly complaining to a friend about the ingratitude of a relative. “I just don’t understand it,” the woman said. “I tried to be helpful. You know, her husband is in critical condition, and she just about bit my head off when I offered to help. You’d think she’d be more appreciative.”
EMOTIONAL SHOCK
Often the term “shock” is used to describe changes in a person’s behavior because of a traumatic event. Nineteen physiological symptoms have been identified, but very little is written about the effect an emotional shock has on words and actions. And when they are noted, most people identify them as aberrations of the person’s usual character. That’s so unlike him, or Yes, I know she can be self-centered at times, but this is ridiculous, are the types of statements I often hear when someone is describing a strange or hurtful behavior by a good friend or loved one.
In many cases, these “bizarre” behaviors begin shortly after a traumatic event and often linger. I think one reason they are misunderstood is that what’s traumatic for one person may be of little consequence to another. The loss of a pet may be just as traumatic, or even more so, than the loss of a spouse. The inability to run competitively for a professional athletic may produce more emotional shock than the loss of a leg of someone who was always been physically inactive. It’s the consequences of losses that are of significance, rather than where they should fall on an abstract list of things that are “important.”
THE EXPERIENCE
I witnessed an interaction between two friends that followed an emotionally traumatic event. In individual conversations with me, each said the other was uncaring and each looked to me to verify their own, unique interpretation of what occurred. I felt I was in the middle of the wonderful 1950’s movie. Rashomon by Akira Kurosawa, where three characters each describe a terrible event. But the description of each differs according to each person’s needs. And so it did for my friends. Each filtered what had occurred through the pain each was experiencing.
For more than thirty years in various capacities, I witnessed the effects of emotional shock. As a communications counselor I’ve seen “hostility” in clients who realize that their ability to communicate in a certain way is gone. As a speech-language pathologist I watched the “unexplainable” reactions of parents when they accepted that the dreams they had for their child would never be fulfilled. As a hospice caregiver I’ve witnessed the transformation of emotional shock into the “abusive” reactions of family members as the death of a loved one approached. As a change consultant, I’ve listened to supervisors describe the sudden “bizarre” changes in an otherwise model employee. And as a university professor, I’ve been the recipient of “hostile” personal invectives by a graduate student when I gave him a B+ instead of an A- for a term paper.
WHAT TO DO
Despite understanding that traumatic events effect relationships, my patients and clients felt unable to change their behaviors and words in the midst of an emotional shock. They looked back and couldn’t believe the hurtful words and behaviors that came from them. Even with hindsight, few believed they could have done or said anything other than what they did. If reactions to traumatic events are more irrational than rational—and I believe they are—then the focus on how to minimize their destructive effects falls on the person who is receiving the abuse.
As a hospice bedside volunteer for eight years, I’ve learned to park my ego outside the doors of my patients. There are instances when I’m just collateral damage for my patient’s anger at what is physically happening to them or the family’s frustration at a loved one’s discomfort. Just as the experience of dying is not about me, the emotional shock that translates into unskillful acts and words of a friend or loved one is not about you.
But understanding the unskillful acts of others, doesn’t mean “turning the other cheek.” A more appropriate response is the type found in the marshal art of Aikido, where you defend yourself while protecting your attacker. Defending yourself involves understanding that the invectives thrown out against you are probably more a reflection of your attacker’s unresolved problems then anything about you. Protecting him or her requires the type of restraint you might use when a drunk who can barely stand picks a fight with you, or a devastated loved one accuses you of unimaginable behaviors.
Arguing rationally with someone in emotional shock rarely changes their view, and more likely will result in building an even higher defensive wall. Although you may believe that counter-attacking is a way of disputing a delusional belief and protecting yourself, it can be destructive to a valued relationship. Learn from the Aikido Masters. Listen, don’t confront, and gently turn away your attacker’s anger by being supportive.
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Ideas Caregivers Can Use to Serve Loved Ones, Preserve Their Own Sanity, and Ease Their Grief (can be delivered as a workshop or short presentation)
Integrating Family Caregivers Into the Hospice Team
The Role and Importance of Volunteers