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More than 15 years ago I was asked to sit on a contentious committee at San Francisco State University that was given the task of recommending curricular changes that would sensitize students to cultural differences.
Suggestions were brought to the committee at its first meeting by faculty members. Ethnic Studies faculty made proposals for including what they believed were fundamental concepts related to the cultures of African-Americans, Asians, and Hispanics. Each speaker made an impassioned plea for why all students should be sensitized to these cultural values. And by the head nods and smiles it was clear that the audience believed in the importance of what was being said.
Are All Human Rights Equal?
But a strange thing happened when faculty teaching courses in Women’s and Gay studies (the names used at that time) presented what they believed were important for sensitizing students to the issues of the populations they represented. “Gall” would be an appropriate word to describe the tone and words used to describe the outrage of the ethnic studies faculty. They asked how it was possible that women and gay issues were comparable to ethnicity.
What began as a rational academic argument rapidly descended into a “me first” discussion, especially when it became clear that there could be only limited modifications made to the general curriculum. Critical comments about the value of Women Studies and Gay and Lesbian studies continued until the representative of the Disability Rights Office asked to speak.
Instead of arguing for the legitimacy of including Gay, Lesbian, Women issues, and Disability, she decided to take everyone through a typical day of a quadriplegic, beginning with the most basic of personal needs that few people cared to hear about, to understanding what she felt in a room of people all standing, physically looking down on her. When she finished, she asked if there was anyone whose own ethnic culture dictated their lives more than her disability determined everything about her existence. There was no response.
Unfortunately, the committee, as so many other university institutions, eventually descended into rhetoric and predicable quotes. But that was 15 years ago and we’ve come a long way in understanding that dividing human rights into those that are supportable and those that are not, is ludicrous. Right?
Hypocrisy From Those Who Should Know Better
Not really. I feel we are at the same point now we were 15 years ago. The only difference is that the actors have changed. We are now having a national discussion on what are “legitimate” human rights, and what are illegitimate ones.
Some African-American ministers who stood with Martin Luther King in fighting for the civil rights of African Americans are condemning President Obama’s support for LGBT rights as something that violates their fundamental religious values. These are some of the same people, who standing next to me condemned the governor of Alabama in the 1960’s for asserting that integration violated a deep sense of southern cultural and religious values.
Some Hispanic activists who I rallied with in Pittsburgh, Pennsylvania for the fair treatment of farm workers in the 1970’s, are now vehemently opposing equal treatment for Gay and Lesbian couples, since, they maintain, equality for gender issues are somehow different than economic ones.
From the parents of disabled children whose equality of human rights I fought for against the callousness of some public school administrators in Illinois and California, I hear views that Gay and Lesbian marriage is something having nothing at all to do with what they and I have been trying to achieve for their children.
Where is the acceptance of Gay and Lesbian marriage by International Jewry, who pleaded with the world to affirm their right to exist and be treated with all of the human rights given to all other ethnic groups—and now vehemently oppose or remain silent about equal rights for Gays and Lesbians?
And what about the Conference of Catholic Bishops who for years quietly shuffled known pedophile priests from parish to parish until their complicity was exposed, and now condemn people who only want to openly love each other as Jesus asked his followers to do?
Are there exceptions? Of course, but I find the silence to be deafening of people I’ve respected in the past who championed civil rights. Who don’t I point the finger of hypocrisy at? Ironically, the evangelical right, who have never deviated from believing everyone should live as they do and don’t see the folly of selectively pulling sections from the bible to support their positions while ignoring others that contradict them. So to the far evangelical right, I offer my admiration for not being hypocritical, while historically holding onto unchristian, hurtful positions.
When They Come For You
As I try to understand the hypocrisy of the opponents for equal rights for my LGBT friends, I remember a poem that was traced back to a speech given on January 6, 1946 by Martin Niemöller, a protestant pastor and social activist in Frankfort, Germany. Since this original version, there have been many modifications, but they all point to problems that are created when we begin qualifying human rights.
When the Nazis came for the communists,
I remained silent;
I was not a communist.
When they locked up the social democrats,
I remained silent;
I was not a social democrat.
When they came for the trade unionists,
I did not speak out;
I was not a trade unionist.
When they came for the Jews,
I remained silent;
I wasn’t a Jew.
When they came for me,
there was no one left to speak out.
I wonder if my thirty-three Polish relatives would have been sent to Auschwitz and murdered if people had the courage to speak out. And even if they still would have died, think about the legacy these brave people would have left for their families, instead of one that currently looks at Poles as complicit with the Nazis genocide.
I’m I saying that Nazi collaboration is the same as remaining silent on issues of gender rights? Not necessarily. But I believe we have entered into a political and ethical milieu where acquiescing to the belief that human rights are divisible, may be the first step in “picking off” the most vulnerable in our society by those who want everyone to live and believe as they do.
And as Niemöller so elegantly stated, if we wait until it’s our human rights that are being threatened, there may be nobody left to speak out.
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Whenever I hear about the importance of letting go of the past, I think about a conversation I had with my mother more than thirty years ago. She emigrated to the United States from Poland when she was six years old, just before the rise of Hitler. Her memories of Poland and the indignities she suffered as a child because she was Jewish, would resurface whenever there was a discussion about Germany, Poland, the Nazis, antisemitism or Volkswagens. Whatever she experienced as a child was still vivid sixty-five years later, and worse, the memories repeatedly pulled her back to the past.
Leaving the Baggage Behind
I didn’t understand the full impact of her past experiences until I visited the Buchenwald concentration camp and stood on the same ground on which many of my mother’s family died. As I looked out to where indescribable atrocities were committed, I wondered how anyone involved in the events that occurred there could leave that baggage behind—whether they were a holocaust survivor or the child of an SS officer. But we don’t need to look for extraordinary events to understand how difficult it is for many people to leave the past behind. Everyday occurrences, while not necessarily as dramatic, create similar dilemmas. For example, how does a woman whose husband left her when she became ill, let go of intense feelings of abandonment? How does a mother who held her infant as she died forget the dreams she had for her child and herself?
Answers regarding how to let go of the past often refer to what the person is doing wrong that prevents them from living in the present, such as believing in false identities, not accepting impermanence, elevating “self” rather than “no-self,” just to mention a few. They are all explanations of why the past exerts control—illogical thinking. But few contain suggestions for how to release the grip, other than to think more rationally.
Yet it is the how of living—those messy, transient, undisciplined things—that transform ageless concepts into something more useful than repeatable quotes.
How, Not What
When I’ve attended workshops and asked how to implement the wisdom the speaker was espousing, I often felt as if I asked someone how to drive to New York from San Francisco and told “Go east.” Accurate, yes, but not very helpful. A similar philosophy became popular a few years ago when a running shoe company created the advertising slogan “Just do it.” The implication was that there were some things in life that should just be done, not analyzed. The idea of focusing on the what and assuming the how is self-evident creates problems whether it comes from a basketball player—who having practiced thousands hours—describes the arc of a three-point shot; a Buddhist monk—who having spent his life in monastic study—lays out the wisdom of the universe, or my shakuhachi (Japanese bamboo flute) teacher—who having studied and played the instrument for sixty years—instructs me to see music through my “third eye.” As someone who is too short to play basketball, isn’t enlightened, and began studying the shakuhachi too late in life to ever know it intimately, I need more than what suggestions. “Go east” doesn’t work when I’m trying to understand something I’ve never done or have had limited experience doing.
The notion that learning is more meaningful when one struggles to obtain knowledge never proved fruitful when I worked with children who had learning differences, nor with adults as they struggled to make sense of their lives as they approached death. The “Eureka!” experience one has by stumbling upon knowledge is often outweighed by the frustration and guilt experienced along the way when success appears elusive. And learning research bears out this point: success leads to more success in learning and failure only leads to more failure. Implementing great ideas, such as living in the present, takes more effort than just articulating the words—regardless how much we accept them or idealize those who espouse them.
Severity
I’ve come to believe that the degree to which someone is able to move into the present partially depends upon the severity of a past loss or injustice. And the more severe, the more important are how suggestions. For example, it’s probably easier to leave behind an intensive, but short love relationship, than it is the death of a spouse one had a symbiotic relationship with. Rejection from a friend may be easier to get over than the abandonment one feels when a livelong partner leaves for someone much younger.
Knowing that one should relinquish the pain of what no longer exists doesn’t necessarily provide the tools for understanding how to do it. And when people believe it should, the resulting guilt just adds to the past’s baggage. What people should be able to do and what they may be capable of, may have as much a gap between them as Tea Party stalwarts and progressives in the United States. So what can we do to not allow, or reduce the influence of our past on our present? It involves understanding why unskillful acts occur. And to do that, means accepting the validity of value systems that may be significantly different than our own.
Understand If You Can’t Forgive
With some of my hospice patients, the psychological pain many experienced earlier in their lives overwhelmed their consciousness at the end of it. Tragically, instead of trying to make sense of their lives, thanking loved ones, asking for forgiveness, and allowing themselves to be forgiven, they focused on something in their past that was very painful. For one month a patient told me the same story every time I visited her. She would go into detail about how her fellow teachers rebuffed her and the immense pain it caused. Even knowing she had little time left, she dwelled on an injustice she experienced more than fifty years ago. For her, the pain of rejection began to diminish when she understood that often unskillful acts are more about the needs of the “perpetrator” than the deeds of the “victim.” She never was able to forgive her colleagues, nor forget the pain they caused. They did something that was so antithetical to her own values, that it went beyond cruelty. Her death was made easier when she began to understand that their hurtful behaviors were more a reflection of their needs than anything she did.
“Understanding” may not have the redemptive quality of “forgiving,” or as powerful in releasing past demons. But it does enable a person to view an unskillful act directed against them within the context of the other person’s value system. In 1965 when I was in Montgomery, Alabama, I viewed the behaviors of the mounted police within my own value system-liberal, committed to civil rights, belief in equality, etc. What I experienced shaped my attitude toward southerners for many years. It was easy for me to be critical of what they were doing, based on how I thought I would behave in their circumstances. Despite meeting many southerners years later who espoused the same values as I did, my history colored my perception of what I thought motivated their words and actions—ones I would have found positive coming from someone not from the South.
Forty-years later I had a hospice patient whose great, great, grandparents owned slaves, believed in the righteousness of the confederacy, and he, like everyone else in his family, had a very dismal view of anyone like me. He shared his history with me as I sat with him near the end of his life. It was then that I realized if I had been born in the 1930’s in Alabama and inculcated with the values of that society, I could have become as brutal as the mounted policemen who tried to knock my head off, because they felt it was the righteous thing to do.
Everyone embodies the history of their experiences and whatever changes occur in our present lives happens within that context. The more devastating the loss we have suffered or the injustice, the more likely there will be a problem moving on. That includes our ability to let go and how we choose to accomplish that. Being told what we should be able to do may not be that helpful. Learning how to do it is.
So the next time you try to let go of a past traumatic event and can’t, don’t feel guilty. Don’t repeat quotes to yourself of what you should be thinking. Rather, try to understand why someone did or said something you would never do. A very young, but wise monk once said to me, “We do the best we can given the circumstances of our lives.” And I think it’s understanding the circumstances of unskillful behaviors that puts us on a road to New York rather than just heading east.
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Simon Singh and Stan Goldberg have a conversation about caregiving.
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When I gave a workshop on change at a well-known retreat center, one participant told me that this was the tenth week-long workshop he attended in the past five years.
“Why so many?” I asked.
“I’m looking to find meaning in my life.”
What I wanted to say was “why not stop looking and do something instead?” Trying to be compassionate, I nodded as if I understood, but didn’t.
We often look for meaning in our lives by relying on gurus, enrolling in workshops, seeing psychotherapists, and meditating for hours. And when we fail to achieve the success expected through these approaches, we may blame ourselves for not being sufficiently committed to change, rather than questioning the path’s validity. It’s analogous to the old story about a student seeking enlightenment.
The student would sit meditating for long periods of time, waiting for enlightenment to engulf him. A teacher, watching him for weeks, sat down next to him and grabbed a piece of broken pottery. Without looking at the student or saying anything, he placed the chard in his lap and began rubbing it with a filthy cloth. After two hours of silently watching the old man, the student asked a question.
“What are you doing?” he said.
“Making a mirror.”
“But how can you make a mirror by polishing a pot shard with a cloth?”
“How can you become enlightened by just sitting?”
There is nothing wrong with attending lectures given by knowledgeable people, or meditating on a specific problem (or on nothing), or going on an introspective journey. Each can contribute to making one’s life better. But, none, either singularly or together will provide the wisdom that comes from engaging in the world.
There is a Buddhist belief, that only by moving into the sharp points in life—those things that we fear the most—can one grow. I doubt few can say they transformed their life by laying on a beach in Hawaii, looking at the waves, and being served Mai Tais.
I believe personal transformation is related to struggle—anything that moves us away from our comfort level into a zone of uncertainty. And there’s nothing like community service to offer a smorgasbord of sharp points.
When you serve others there is no theory, no distance between what is happening and you. It takes you from being an observer to a participant, getting your hands dirty by immersing them into the lives of people who need you.
I witnessed it with those who volunteer in hospice and with family caregivers of chronically and terminally-ill loved ones. Many of their life-long problems that were unsuccessfully treated with psychotherapy or repeatedly addressed in growth workshops, became trivial by comparison to the problems of the people they served. How can one remain obsessed with a stagnating personal relationship when someone you are serving who has no friends or family looks to you for comfort?
I remember a person at one of my workshops who said throughout his life he struggled choosing between options, such as which of two equally wonderful jobs to accept. According to him, the inability to make a decision was the basis of a history of anxiety and endless “What if…” scenarios. That changed when, as a volunteer for a cancer support group, he was asked by a young woman to help her decide if she should continue heroic medical efforts to prolong her life in pain, or to enter hospice and allow the cancer to progress.
The essayist H.L. Menken wrote, “We are here and it is now. Further than that, all human knowledge is moonshine.” Meditation and insight therapy aren’t necessarily moonshine, but neither should they be confused with knowledge. I know my friends who are mediators and those involved in insight therapy will disagree. They forcefully argue that both can lead to an understanding of what’s involved in precepts of living such as acceptance, compassion, living in the moment, and gratitude, among others.
But how would their understanding of acceptance be changed if instead of thinking about it, they listened to a mother who realized her five-year-old severely disabled son will need supportive care throughout his life? Compassion, by feeding a dying AIDs patient no longer able to hold a fork? Living in the moment, as they watch a mother cradle her terminally-ill newborn during a surprise Mother’s Day party? And gratitude, in the gentle kiss of a man with ALS as they help him prepare to die?
Yes, it is possible to have a distant understanding of these concepts through meditation and insight. But for me it’s the same as a physician, who, having completed medical school first in his class, performs an advanced open-heart surgery without ever having touched a scalpel.
The mathematician and humanist, Jacob Bronowski said the world can only be grasped by action, not by contemplation. There’s a story of a young man who came to a monastery hoping to learn the secrets of life from an enlightened old monk. After being there one year, he was allowed to ask the master one question.
“Master, what is the secret of life?”
“Have you eaten your rice gruel?” the old man asked.
“Yes,” the confused student responded.
“Then go wash your bowl.”
Maybe we need to listen to the old master and wash our bowls rather than thinking about doing it.
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“If we just could increase awareness,” some of my friends with Alzheimer’s say, “funding would rise and the illness could be eventually controlled or eliminated.” I wish it was that simple.
Politics of Research Funding
As we live longer with illnesses that in the past killed us off quickly, the demands for research funding that would lead to their control and elimination increase. With limited federal funding, the demands on the money pie expand while its size may only increase slightly. The 8” pie capable of feeding four people, may increase to 10”, but the number of hungry people waiting for a slice may have expanded to 20.
It’s understandable that someone affected by, or living with a chronic or terminal illness wants more funding for their problem—even if it means less for another illnesses. And as someone who is living with prostate cancer, I, of course, believe my illness should receive the most money. Self-preservation is a powerful factor in justifying inequities.
But if for a moment we can put aside our own biases, we probably could all agree that the greatest number of yearly deaths or the number of people living with a chronic or terminal illness should receive the greatest amount of research funding. But even a cursory look at the latest NIH funding figures suggests other factors may be influencing priorities—especially with Alzheimer’s.
NIH Spending People
Amount Illness Living With It Yearly Deaths
$890 million Breast Cancer 2.6 million 40,000
$285 million Prostate Cancer 2.4 million 34,000
$226 million Lung Cancer 373,000 160,000
$381 million Cardiovascular 27.1 million 600,000
$3 billion AIDs 1 million 18,000
$450 million Alzheimer’s 5.4 million 82,000
Only cardiovascular illness (which includes various illnesses) has more people living with the illness than Alzheimer’s. And it’s estimated that over the next four decades, Alzheimer’s care will cost the United States approximately $20 trillion. Advocates would say, that based on the data, funding for Alzheimer’s should be at the top of the list. And many maintain that the path to a more favorable ranking is increased awareness.
The problem is that “awareness” follows a willingness to look. Without the willingness—because of fear or other factors—awareness often doesn’t occur. People tend to avoid things that frighten them. And Alzheimer’s is a big one.
A Lesson from Women
To understand how the fear of Alzheimer’s may prevent awareness, you can look at the history of research funding discrepancies between prostate cancer and breast cancer. While both kill approximately the same number of people each year, and both have the same number of people living with the illness, breast cancer funding is almost four times that of prostate cancer. So what could account for it?
I think it’s related to men equating what happens below their belt to who they are—their identity. In the late 1960′s, women and their families realized identities weren’t tied to body parts. Very bluntly, women knew they weren’t their breasts. Men, on the other hand, are still light years behind. I believe it was the willingness of women with breast cancer and their advocates to openly deal with issues of fear and identity that allowed them to increase awareness of the illness, which led to demands for increased research funding, which hopefully is leading to its elimination or control.
Acceptance Before Awareness
The problem is more insidious with Alzheimer’s. It’s not the patient who needs to struggle with identity issues—unlike many men with prostate cancer—but rather society.
When people with little understanding of Alzheimer’s look at someone who suffers with it, they see someone who they fear, or a person who has regressed to being a child, or most frightening, someone who they fear becoming. One person painfully described how when he told good friends about his Alzheimer’s, they gradually stopped coming by to visit.
The fear of what isn’t understood gets translated into isolating those with Alzheimer’s from a life filled with people with whom they’ve had a connection. It isn’t done because people lack compassion, but rather because they don’t understand what someone with Alzheimer’s is experiencing. And that uncertainty and fear can reduce awareness of the illness, which results in reduced demands for research funding, and delays its elimination or control.
I would guess that before breast cancer funding dramatically increased, it was proceeded by a changed view society—and men in particular—had of women with breast cancer. I think before research funding for Alzheimer’s can substantially increase, society needs to see the person with Alzheimer’s as someone who lives with a dreadful illness, rather than someone who is the illness, with all of the stereotypes that our culture attaches to it.
So yes, I agree that increased awareness is important. I welcome all of the impassioned pleas from Hollywood celebrities, pronouncements by politicians, hearings by senators, and even articles of support by writers like me. But, in the overall picture, unless society is willing to look at the person with Alzheimer’s with the compassion and understanding we would give to our mother if she had a debilitating illness, all the awareness in the world may not effect funding priorities, and worse, will just continue the isolation people with Alzheimer’s experience.
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When I was in college I would take whatever I was driving and offer it and $50 to a used car dealer for anything that ran on his lot with a current inspection sticker. Within the first few weeks, something would inevitably fall off. As I age, I feel as if I’ve taken on the personality of my clunkers. If I’m lucky, nothing of importance will drop off.
I often hear discussions of aging at both ends of the continuum. At one extreme are those who have successfully aged and have found great comfort in their maturation. They often feel fulfilled in what they have accomplished, who they are living with, and satisfied with amenities they’ve spent their lifetime accumulating.
And at the other end are those who fight aging as if it is the antithesis of living and something that can be avoided by shear will, denial, a nip and tuck, and sometimes a younger partner.
But for the vast majority of those of us who are straddling middle age and what follows, things aren’t quite so black and white, nor tragic or joyful. We live in that gray zone where things aren’t quite as they should be, nor as bad as they can get. It’s the real world of illness, limited finances, competing priorities, and changing capabilities.
I believe those of us who are struggling to age successfully can get so enmeshed in our losses and unclear future, the strategies we develop become distorted by what we are experiencing and our visions of an impossible future. Sort of like the “Heisenberg Theory” in science that maintains the introduction of an observer changes what you are observing.
So how do we eliminate the contaminating factor? How do we start clearly seeing a way of incorporating aging into living? The answer for me came from the words and actions of the people I’ve served in hospice.
Daily, sometimes hourly, some experienced and accepted changes they knew would continually progress until they died. Those who had problems walking knew that shortly they would be confined to a wheelchair. Patients who occasionally required oxygen quickly realized that the flow settings would need to be increased. People in pain understood that morpheme dosages had to be increased so the pain wouldn’t become intolerable.
But there were other patients who couldn’t adjust to the rapid changes. For them, it was important to hold on to abilities that no longer existed. The emotional upheaval they experienced almost daily, made their journey more difficult. When I play handball and an opponent steps in front of me as I’m going for a shot, he’ll concede a “block,” which means, that he acknowledges his position prevented me from hitting the ball. When that happens, I often say, “Yes, that was a block 10 years, but not now.” It’s not only the honest thing to do, but more importantly, it’s a recognition that I’ve changed and I’m willing to accept my new limitations.
As we age, it’s almost inevitable that many of the things we were able to do in the past, we can’t do now, or if we can, we do it with less competence or vigor. My patients’ lessons on the importance of “acceptance” has allowed me to look at the gradual deterioration of my physical abilities, not as an affirmation of moving closer to dying, but rather the need to accept moving thresholds of what I’m able to do. It’s seeing aging without being contaminated by memories of what I was once able to do.
So on those days when your body feels like a 1960 Edsel, remember, its purpose is to get you from one place to another, not to race in the Daytona 500. And if you can remember that, maybe nothing will fall off.
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How we view ourselves—our identity—is based on what we do, the roles we play, activities we enjoy, affiliations we have, the values that structure our lives, our abilities, and relationships. When a meaningful part of a loved one’s life is lost, their self-perception and place in the world may change.
Losing something that gave meaning to life is often a bi-product of chronic and terminal illnesses. It can be the daily jog for someone who has run for forty years, the loss of hearing for someone who played the cello her entire life, or the gradual memory loss of a writer who spent his days in front on a computer crafting short stories.
Most people can look at these losses and understand how devastating they are. But what about something like the inability to knit for someone with crippling rheumatoid arthritis? Or the inability to read the morning newspaper over a cup of coffee as eyesight diminishes?
Unfortunately, the magnitude of a loss is often thought of in terms of someone else’s sense of what’s important. An active person might think that no longer being able to walk is tragic, but the inability to knit inconsequential. Yet for someone with rheumatoid arthritis whose entire life centered on knitting, the loss is far more devastating then being unable to walk. Many chronic and most terminal illnesses result in life-changing losses. The ability to knit, run, walk, write, or converse may disappear, but its memory is constantly present, sometimes acting as a slap in the face when it’s seen in other people.
Caregivers try to be supportive by presenting “but look” arguments. “Yes, I know you can’t jog anymore, but look at what you’re still able to do.” But how convincing can that argument be when the activity or ability that was lost was a central feature of a person’s life? Ask anyone who has had a significant loss in their life what they think about “but look” propositions. The head knows that it makes sense to relish what they’re still capable of doing, but the heart mourns the loss.
We get enjoyment and fulfillment, not from the thing or activity itself, but rather from the emotions it stirs in us. For example, I did solo wilderness fly-fishing throughout my adult life. It was the most enjoyable activity I ever did. When I no longer was able to do it because of my cancer treatments and a chronic sleep disorder, I mourned its loss as if it was a loved one who died.
My head knew that I was fortunate that one group of medications was containing the cancer and another was allowing me to sleep. And not going into the wilderness alone was a small price to pay for sleep and life. But my heart still longed for it. I eventually realized that it wasn’t the act of fishing in the middle of a pristine river that I missed, it was the serenity I felt being there. When I realized that, I sought other activities that could engender the same or similar feelings. I found it in playing various wooden flutes. Was it the same? Not really. But it allowed me to partially fill that pothole.
When your loved one laments about losing something that was of great importance, avoid using a “but look” response. The remorse they’re expressing is coming from their heart and it needs a heart response rather than a head one. Instead, begin exploring what it was about the activity that made it so important in their life. Once the emotions have been identified, jointly think about what other activities may generate ones that are similar. Often the answers are found in very different activities, as it was with my substituting playing and crafting flutes for wilderness fly-fishing.
As your loved one’s illness progresses, you’ll find that what works today may not work tomorrow. Look for something that may be do-able throughout their disease progression. If both of you realize that what they have chosen will only be possible for a short period of time, still do it, but think about what can substitute for it. For example, an ALS patient I served loved ambling through Golden Gate Park in San Francisco. He lived only a few blocks away and would spend hours there every day before he was diagnosed. As the disease progressed and he no longer could walk, I would take them to the Rose Garden each week in his wheelchair. When he was confined to a bed, people who visited would come with a flower they picked from the park.
Any loss that a loved one maintains is substantial, by definition, is. Accept it as valid and jointly explore substitutes. Chronic and terminal illnesses are rarely stable. As they progress, your loved ones’ identity will continue to evolve. Hoping that the person you knew before the illness is the same person who has lost meaningful parts of their life may be a wonderful spiritual ideal, but it’s rarely comforting to the person who has suffered the loss.
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One of the first things Dean did when I entered his apartment was show me the chair Tennessee Williams sat in when they discussed the state of theater in San Francisco. It was my first visit to Dean as a hospice volunteer for Pathways.
“We were good friends,” he said. “Well, maybe not friends, but colleagues. I’m sure if he was still alive he would be at my good-bye party.” Dean was a well-known actor in San Francisco and dying of liver cancer.
He told me about a huge affair being organized by friends, colleagues, and the many fellow actors he had helped throughout the years. “Why should my friends celebrate my life when I’m not there?” he asked. The planning started when he received a terminal prognosis. Because Dean had been an actor for sixty years, the event had to be choreographed as meticulously as if it were opening night on Broadway. And of course, he expected me to be there.
One week later I entered the lobby of a theater in which he had often performed. After elaborate trays of food and many glasses of champagne had been served, his closest friends went to his side and told him how much he meant to them, and how he had contributed to their lives.
Most were local actors, but a few I recognized from films and television. There was weeping throughout the conversations, but these were expressions of gratitude for having been allowed into the life of this wonderful person. During the time I served him afterward, he often retold the events that occurred at the party, marveling at how fulfilling his life had been and how the party was its culmination.
When he died only a week later, the following was reported in the SFGate.
Mr. Goodman requested that there be no memorial service, but a celebration of his life was held at ACT on June 19. The evening, attended by Mr. Goodman and some 200 guests, included a reading of his newest play, “Bloody August.” At the ceremony, Mr. Goodman received a special lifetime achievement award from Actors’ Equity for 63 years of service to the union and to the theater.
A good-bye party is a glorious event celebrating life, and it gives permission for people important in your loved one’s life to say good-bye, an act that is difficult for many to do. The good-bye party says to those who attend: “I know I’m dying, and I want an opportunity to tell you how much you’ve meant to me. And you have my permission to do the same.” People who have attended such parties rank them with some of the most meaningful and joyous events in their lives.
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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
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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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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