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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.

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.

“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.

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.

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.

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.

Excerpt from Leaning Into Sharp Points” Practical Guidance and Nurturing Support for Caregivers.

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.

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?”

“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.