In 2011 I wrote Shoot Me Please: The Right to Die, where I described my reactions to a patient who asked me to help him die. I recently received a comment on the article by Jarad Hughes from the Compassion and Choices Organization that made me realize I never wrote anything about terminal sedation, also known as palliative sedation. Basically, it’s a medical procedure that renders unconscious a patient who is in intractable pain, until the illness takes the patient’s life. Not an comfortable topic to think about or discuss, but one that needs to be understood.
In this article I provide Jarad’s verbatim comments and my response to the concept of terminal sedation and the use of politically correct words. I apologize for the length of this article, but the issues can’t be adequately addressed in twitter-length bits. I hope you’ll find it informative, or a least provocative. Be assured, I’ll go back to my 900 word articles next time.
Dear Dr. Goldberg,
Thank you for this thoughtful and choice-affirming essay on end-of-life choice and personal bodily autonomy. I am glad to read that you seem to be an advocate for patient-centered end-of-life care where the patient gets to choose the time and manner of their own death that is actively happening to them either contemporaneously or extemporaneously. However, the debate in the country is not over euthanasia – though our anti-choice opponents who number about 20% of the public – would have us all think so. It is actually over Aid in Dying.
I encourage us all to consider ones vocabulary used to describe what your first hospice patient was asking you to do more carefully. While he was asking the impossible (to resort to violent means to end his suffering with a gun) of you, why was he not then offered palliative sedation or VSED as an alternative and legal option since he was begging to end his untenable suffering and invoking the California Right to Know Law.
As a Californian and EOLC expert, I am sure you know that the Palliative Care Information Act which we passed some years ago now requires that patients who make such requests of their health providers and ask what their options are, are told about the full range of palliative care and treatment options they have at the end of life – including VSED and Palliative Sedation along with a host of treatments / interventions they can opt to discontinue (IE: pacemakers, antibiotics, heart medications, dialysis, etc) that are prolonging what would otherwise be a natural dying process. In fact, we are suing Vitas Hospice for breaking that law resulting in gross – I would personally say criminal – negligence and elder abuse.
You can read more about that case here:
None of these end of life / standard of care options are anything remotely defined as euthanasia – nor are they considered “assisted suicide.” We’ve issued a FAQ that is helpful in making these distinctions clear and is gaining traction in the media who are correcting pejorative and gross factual errors contained in headlines and articles.
As the public and policymakers discuss end-of-life options, it is critical to describe accurately the medical option of terminally ill people self-administering prescribed medicine to shorten a dying process they find unbearable. “Aid in dying” is the most neutral term to describe what advocates call “death with dignity” and opponents call “assisted suicide and / or euthanasia.
Thank you for your help in making sure our language is at least value neutral and in line with many nationally recognized medical associations’ – most notably the Nation’s oldest and largest public health association has affirmed since 2006. It states that “the term ‘suicide’ or ‘assisted suicide’ is inappropriate when discussing the choice of a mentally competent terminally ill patient to seek medications that he or she could consume to bring about a peaceful and dignified death.”
The APHA policy emphasizes “the importance to public health of using accurate language.” In 2008, the APHA adopted a policy supporting aid in dying. The policy acknowledges “allowing a mentally competent, terminally ill adult to obtain a prescription for medication that the person could self-administer to control the time, place, and manner of his or her impending death, where safeguards equivalent to those in the Oregon DDA are in place.”
Thank you for your kind words about the article and the valuable information. And you are right, I am an advocate for people determining when and how they will die; whether it’s in a hospice/medical facility, at home, or standing on the edge of a building feeling there is no hope.
I also agree that hospice facilities should provide patients with the full-range of options, including terminal sedation. However, before being too harsh on organizations that feel uncomfortable with terminal sedation, I think it’s important to look at context. When my first hospice patient asked me to shoot him 10 years ago, the notion of “hospice,” was still very frightening to the majority of US citizens. I believe it’s now only frightening. I knew my patient wasn’t literally asking me to shoot him, but wanted me to assist him in ending his life.The gut-wrenching reactions people had to the article or the section in my book Lessons for the Living, which goes into more detail, had nothing to do with the words I used. It was about choosing to die, no matter how it was described or what it was called.
As someone who was new to the hospice movement in 2003, I had no idea that terminal sedation was a possibility. And even five years ago it wasn’t something that I heard about in three of the four hospice organizations where I was a beside volunteer. Earlier, I mentioned “context.” I think it needs to be considered in two ways.
The first is the larger context of society’s fear of hospice. People are still afraid of making a decision for themselves and family members to do only palliative care despite knowing that the end of theirs or their loved one’s life is imminent. Japan, South Korea, and Taiwan (countries where I’ve lectured) are still years behind us. Written descriptions of the hospice movement in Canada and the UK indicate that their population’s acceptance of hospice is greater than in the US. But the statistics on the number of people in hospice and their average stay are no better than the US. I know the worldwide interest in hospice is growing, if for no other reason than the sale of foreign language rights to my books in mainland China, Taiwan, Brazil and Indonesia.
I believe many hospice organizations are painfully aware that they are caught up a continual PR campaign about end of life issues. One small misstep can not only damage their own precarious financial position, but the hospice movement in general. For example Senator Grassly’s and Sarah Palin’s deceptive reference to death panels set the hospice movement back years.
The second context is an individual one–the patient’s immediate world. I know hospice organizations struggle with the question of when to talk about terminal sedation. For example, would it benefit the patient and family to discuss it at the beginning of service, or when it becomes–in their minds–an appropriate option? I’ve served two patients who were given the option of terminal sedation and took it. It was an incredibly difficult decision for a 50-year-old woman in intractable excruciating pain from breast cancer, and a quick and easy decision for a 45-year-old man just beginning to lose functioning with ALS.
Does Political Correctness Lead to Change?
I’ve never been good at selecting politically correct words. Not now, nor during my thirty-five years of serving children and adults with disabilities, caregivers, or people facing their own deaths. My experience suggests that while using the correct words to describe something is laudable, it has minimal influence on changing people’s hearts. I’ve always thought the choice of words has little effect on how people act to something they are afraid of, or don’t want to understand.
Changing “handicapped,” to “disabled,” to “challenged,” hasn’t resulted in better living conditions for those identified by these labels. Relentless pressure from social activists made the difference. While “living with dementia,” is more accurate then “an Alzheimer’s victim,” it hasn’t changed the social isolation anyone with a cognitive disability faces. Whether you call the right to have health care “Obamacare,” or “The Affordable Care Act,” almost 4 million people in Texas are still without insurance. Changing the terminology from “queer” to “homosexual,” to “gay” to “LGBT,” hasn’t stopped homophobia. In the 1960′s, it didn’t make a difference to people in Alabama if I was referred to as “a freedom rider,” or “northern agitator.” It was their fear of change that trumped labels.
But I do understand that the choice of words can be offensive and I will try to be more cognizant of using “aid in dying,” rather than “euthanasia,” or “assisted suicide.” I don’t think using the correct words is as the important as the valiant efforts of your organization and similar ones for shaping behaviors. Two of the many lessons my 10 years as a beside hospice volunteer to more than 500 patients has taught me, is that context is critical for understanding differences in lifestyles and decisions, and actions are more important than words for changing societal norms.
Take care and keep up the fight,
Grief is an emotion that is pervasive. It can arrive on a passing breeze, the sounds of a familiar song, the taste of a loved one’s favorite food, or in the middle of the night when a hand reaches over and feels the empty side of a bed. While everyone who has lost a loved one knows the feeling, getting beyond it is unfathomable to many.
On September 30, 2013, Sutter Health will be sponsoring a free workshop facilitated by Stan Goldberg, Ph.D. for people who struggle with grief. His approach is unique: he’ll explore with participants ways of understanding why the loss of a loved one hurts as much as it does, and he’ll offer specific strategies for reintroducing joy in a person’s life.
Where: 700 S. Claremont Street #201, San Mateo, CA 94402
When: Monday September 30, 2013, 6:15–7:30 pm or so
Cost: Donations graciously accepted for Sutter Care at Home, but not required
RSVP: Because of Limited Space Initial registration required: Stephanie at 650-685-2821
About Stan Goldberg: He is a Professor Emeritus of Communicative Disorders at San Francisco State University. For 30 years he has taught, provided therapy, researched and published in the area of learning, aging, caregiving and sudden change. Stan has published 8 books, written numerous articles/poems & delivered hundreds of workshops throughout the US, Latin America, and Asia.He has been associated with hospices in several capacities for 10 years. His latest book is Leaning Into Sharp Points: Practical Guidance and Nurturing Support for Caregivers and was awarded the 2012 1st place (death & dying category), International Book Awards.
He is currently completing a novel and working on books about aging and grieving.
Change is frightening, whether it’s a person coming to terms with a terminal diagnosis or an evangelical minister learning his son is gay. Both are forced to let go of cherished beliefs for a world that has the stability of Jell-O.
For thirty years, I’ve seen it in clients who have lost lifelong abilities due to chronic illnesses and patients who are nearing the end of their lives. What I didn’t realize until recently is that what my clients and patients experienced are similar to the angst of social conservatives.
Fifty years ago, Martin Luther King, Jr. delivered his “I Have A Dream” speech. It engendered hope in some and fear in others. Since then, many events have had similar effects including the peace movement, LGBT rights, the election of an African-American president, the Affordable Care Act, and increased voter access.
Each of these was a lightening rod for cultural change as traumatic to their opponents as were the loss of my client’s abilities and the terminal diagnoses of my patients. And just as those I have served who had difficulty adjusting to their new worlds, so do those whose values are under attack.
In 1964, my parents couldn’t understand why I would go to Alabama to march for equal rights for African Americans. Trying to explain why I was in jail in Montgomery on a hunger strike was frightening to them and unfathomable to their first-generation American friends.
In 1965, I didn’t anticipate the physical threat level to me, and other members of Students for a Democratic Society (SDS) at a peaceful demonstration when we asked only to have a conversation about the war in Vietnam.
I wasn’t prepared for the angry reactions in 2009 to the articles I wrote on the Affordable Care Act (Obamacare) from people who were delighted with Medicare, but feared government intrusion into their health care. And I was astounded when those who entered into a dialogue with me admitted they never read one word of the more than 600 page document, but rather, were relying on the unimpeachable sources of Glen Beck and Rush Limbaugh.
I was disappointed by the level of vehemence against LGBT rights in 2012 from African-American ministers who walked side-by-side with me for their own civil rights in Alabama, couldn’t see any parallels between what they sought in the 1960’s and what my GLBT friends were demanding in 2013.
From 2008 to the present, I found inexplicable the hyperbolic ranting of senators, congressman, political commentators, and Donald Trump about anything President Obama proposed. I knew their “just say no,” philosophy couldn’t be based only on political differences.
What I’ve recently come to realize is that these individuals, and others who identify themselves as “social conservatives,” have much in common with individuals I served who have lost abilities because of chronic or acute illnesses, or are facing death. Social conservatives—just as my clients and patients—are being pulled from a world were rules are understood and expectations are known, into one that at the very least makes them uncomfortable, and at the worst, attacks values that have shaped their lives. It’s a changing world that’s moving faster than they can.
Although voter suppression is the most current example of this discomfort, it’s the same millennium-old fear of change dressed up in modern clothes. The Tea Party’s slogan, “We want our country back,” echoes the fear of change found in my culturally insular parents, anti-gay African-American ministers, people with European ancestors who oppose immigration reform, and politicians who long for the days when political power was mostly in the hands of white, protestant Americans.
Change is frightening. Whether it’s the Archbishop of San Francisco professing centuries’ old dogma, Rand Paul living in the fictionalized world of an elitist novelist, my mother trying to understand her son, or your pleasant neighbor harboring strange beliefs about the superiority of one race. All are being dragged, kicking and screaming from a life as comfortable as an old easy chair, into a strange new world.
And what is being challenged is not just an isolated behavior or value, it’s usually something integral to their identity; something that has given meaning to a lifetime of actions and beliefs.
Social conservatives are not just being asked to “do the right thing” because it’s moral. They are being asked to abandon belief systems that have served as the foundation for their personality—whether it’s the belief in racial superiority, the holy union of marriage, a bootstrap approach to life, or who has the right to govern.
So when we listen to rationales that make no sense, drip with hate, or bring us back to a time when justice was a term that didn’t apply to some people, we shouldn’t be surprised. Most are expressions of loss that are as significant to social conservatives as the losses are to the disabled or those coming to terms with the end of their life.
When you watch the hysterical ranting of Fox commentators, read the bizarre justifications of anti-science congressmen denying the existence of greenhouse gases, or are physically confronted by someone who believes our president is the devil incarnate, you might view it as a direct attack against you and your beliefs, but don’t. In the words of the characters in The Godfather, “It’s nothing personal.” It’s not about you or about what they are railing against. It’s a reaction to threats against their identity and way of life. There will always be new social lightning rods, most of which we can’t imagine. But the fear of change will remain constant.
I was asked to join Thich Nhat Hanh, Jane Goodall, Norman Fischer, and other writers I have long admired in contributing to Shambhala Sun’s July 2013 special edition on the body. In my article, I relive what I felt when I was diagnosed with an aggressive form of prostate cancer and how I came to grips with my life and the possibility of its premature end.
It was 3:30 in the afternoon and I was gazing through my kitchen window at the Pacific. I’d recently decided to retire from the university because of a chronic sleep disorder, which resulted in memory problems, and I was reluctantly accepting the loss of an important part of my identity. My thirty-year-old title of “professor,” would be swapped for “professor emeritus” and, as compensation for losing the status that went with the role, I’d receive a library card and a free lifetime email address. But I’d also finally have an opportunity to resume my woodworking and travel to exotic countries. Maybe even a trip to Tibet.
My thoughts were interrupted by a phone call.
“You have cancer,” the physician said to me. “And it’s aggressive. If you don’t have surgery, it will kill you. Even with surgery, the escaped cancer cells may still be fatal.”
I don’t remember what I said to him, but eleven years later I still feel nauseous thinking of his three words. He couldn’t see me for four days, so in the interim I reread my favorite Buddhist authors. I was hoping to learn from them how to tell my wife and adult children I might be dying and to find some comfort. Yet I found little consolation in anything I read and—despite the warnings not to—I grasped at my conditioned existence. There was a gap between what many of our greatest teachers wrote I should be feeling and what I was feeling.
As the philosopher Alfred Korzybski said, “The map is not the territory.” The writings of renowned Buddhist thinkers provided me with a map, but it didn’t reflect my territory. I took no solace in the concept of “letting go” or the ancient adage “draw closer those things you fear the most.” I couldn’t get any closer to my cancer; it was so close that I couldn’t possibly run away from it. And contrary to what I read, living in the moment wasn’t enlightening—it was emotionally and physically painful.
I preferred thinking about a past pleasant experience rather than the pain emanating from the incision. Drawing the pain closer only resulted in needing more morphine. In the past, I’d been able to derive comfort by unquestioningly following the words of great Buddhist teachers. Why not now?
For me, it had to do with the severity of what I was experiencing. Though letting go of a publisher’s rejection of a book proposal wasn’t pleasant, it was manageable since my life didn’t revolve around writing. But the stakes were entirely different when I would momentarily forget where I was because of the sleep disorder or exhaustion from the cancer treatments.
Without asking me for permission, my body and mind had changed the rules for how I lived. I appeased them by no longer going into the wilderness alone and relying on my Iphone for remembering even long-standing, reoccurring appointments. Unfortunately, my cancer and sleep deprivation decided to be cute and began stripping away other components of my identity that I’d hoped were untouchable. Over the fifteen years I’ve lived with the sleep disorder and eleven years with cancer, I’ve learned that progressive illnesses are open-ended and dynamic. Just when you’ve accepted one change, another one occurs, then another, and on and on.
It’s natural for those of us who are ill to add guilt to our load when we believe (or hear others say) that it’s possible to isolate our thoughts from the physical effects of the illness through meditation and other techniques. Despite practice, I’ve found it difficult getting beyond the effects. “Trying harder,” hasn’t made it easier to remember an appointment or play a better game of handball.
Maybe committed, lifetime practitioners or someone with an occasional headache can send the effects of their illness to the back room of their consciousness. But for others, life isn’t that simple. Illnesses change identities. As mine progresses, I ask myself; Am I the person today I was yesterday? And who will I become tomorrow? It doesn’t help hearing or reading that the “core” of my being is unchangeable. I interact with the world dressed in a history of experiences that’s as thick as a winter coat.
I am what I do and believe. That’s my identity. It’s an amalgam of values, embarrassments, unskillful behaviors, defenses, triumphs, defeats, etc. Together it’s as complicated as a Texas chili.
Eventually, I realized I wasn’t doing to die, at least not soon, and my memory losses didn’t foreshadow Alzheimer’s. I thought I had two choices: graciously accept the loss of my abilities as just another part of living or remain miserable without them. It took me years to realize there was a third way—adaptation. Trying to find a direct substitute for the abilities or experiences that I could no longer enjoy wasn’t usually successful. For example, going to a nature preserve did not diminish my longing for wilderness. The thing is, I wasn’t grieving the loss a specific activity, but rather the feelings certain activities created.
I discovered that if I could pinpoint the emotion a lost activity had generated, I could often recreate it in a totally different way. The feeling of serenity from being alone in the wilderness, for instance, was almost replicated by playing the shakuhachi, the Japanese bamboo flute. Similarly, although unscripted presentations were no longer possible, the use of Power Point was effective for conveying useful information. I adapted to each loss as it occurred.
My life is different now than it was before I became ill, and this reminds me a little of the Buddha’s experience. Within the confines of his father’s compound, he thought the world outside the walls was similar to what he experienced in the palatial estate. But, when he left, he found that it was a very different place. Those of us who move from relatively good health to living with chronic or progressive illnesses gain a similar awareness. Living with an illness is very different than what we thought it would be.
(An Excerpt from Leaning Into Sharp Points). Change is analogous to a large boulder balanced on a precipice. It looks like it could tumble off the cliff if just a little pressure were applied. But despite your great effort, it won’t budge. The weight and inertia of the boulder prevent it from moving. And just as with the boulder, inertia prevents us and our loved ones from changing a behavior that’s been with us for a long time.
There is a story told of a dog lying on the front porch of a house and moaning loudly. Next to him sat an old man in a rocking chair, impassively whittling a piece of wood. A stranger came by and was amazed by the scene. He walked up to the porch to see what the problem was with the dog.
“Howdy,” he said to the old man.
“Howdy,” the old man responded, barely looking up from the piece of wood he was carving.
“I was wondering why your hound is yelping.”
“He’s lying on a nail,” the old man said, taking a puff on his corncob pipe.
“How long’s he been doing that?” the stranger asked.
“Oh, I reckon about eight hours.”
“Eight hours!” the shocked stranger said.
“Well why doesn’t he get off of it?”
The old man stopped whittling, took another puff on his pipe, and stroked his beard as if in deep thought. Then after a moment he looked up at the stranger. “I guess he forgot what it feels like not lying on it.”
We are all resistant to change, even when we say we are not. And just like that old hound dog, we fear change’s double-edged sword: giving up the known while simultaneously accepting the unknown. As a caregiver, change may be difficult for you and the loved one you’re caring for.
Your loved one is moving from independence to dependence, from health to illness, and from being in control to having little of it. You are about to give up significant parts of your life and substitute activities you never would have chosen if your loved one were healthier.
Both of you are moving from A to B: from what you were to what you are becoming. It’s a rootless psychological state that inevitably causes anxiety. There is discomfort in most transitions, sometimes even fear. You and your loved one will be moving from something you both know to something unknown to either of you. The discomfort can be reduced by holding on a little less tightly to what is familiar. Assume that many things in your and your loved one’s “pre-illness” life will lose their permanence and letting go of them may be the best way to keep what is important to you.
You can read more about the problems of change in Leaning Into Sharp Points: Practical Guidance and Nurturing Support for Caregivers.
When I attended a workshop on the Native American flute (NAF), I didn’t realize that the lesson I would receive was one not only applicable to music but also to aging and grieving. “Play the contour of mountains,” the instructor said. “It will open up your music and let you hear the inherent melody of nature.” The technique involved playing notes as if they were following a mountain ridge: raise the notes as the ridge ascends, lower them as it descends, and adjust the duration of the notes by how long the elevation stays the same: short peak—short note, plateau—long note.
Since my playing at that time was, at best, mediocre, I limited using the technique to playing a picture in my office of mountains. So when my wife and I scheduled a seven day hiking trip with friends in the Sierras, I thought it was time to try the technique with the real thing. I brought a NAF and a shakuhachi (Japanese bamboo flute) with me. At sunrise, I took both to the top of a hill and with the NAF began matching the notes to the contours of the mountains that surrounded me. It was a spiritual experience. I thought if this works with the NAF, why not with the shakuhachi? I tried playing my shakuhachi and what came out was awful. I realized there was a mismatch between the instrument and the technique. It was then that I had a Eureka moment.
Choosing the Wrong Instruments
I’ve come to believe that our lives, just as the mountains, have an inherent melody. Most of us spend a vast amount of time trying to discover it. And when we find it, we often believe that the activity or person is indispensable for experiencing the melody. We grieve the death of a partner believing no one can replace him; the loss of a friend with whom we had shared our deepest thoughts, who now no longer speaks to us; the deterioration of an ability that with age is a poor imitation of what we were once capable of doing; or that memorable experience we know can never be recreated. For me, “it” was solo wilderness backpacking, an activity that gave me more pleasure than anything I ever did. And one, that as I aged caused tremendous anxiety for my family. Instead of the serene feelings I had experienced in the wilderness when I was younger, I began worrying about everything; from why my coffee wasn’t flavorful, to wondering if I would see my family again. I thought the joy I had experienced before becoming ill would never return. I tried playing the melody of my life with the wrong instrument.
Grieving the loss of an ability, activity, or person is often related to believing that with the loss of something so precious, the emotions they generated in us will never again be experienced. In my mind, what I felt in the wilderness and the wilderness itself were synonymous. I has taken me years to realize that I wasn’t grieving the absence of wilderness visits, but rather the emotion the experience created–solitude. When I separated the two, I understood that the search for a direct wilderness replacement was needlessly restrictive. I needed to find something that created the emotion, not the wilderness. I found what I was looking for when I closed my eyes and improvised on my shakuhachi.
The Melody of Our Lives
Just as most melodies are not limited to being played on one instrument, cherished emotions are not inherently related to how they were originally experienced, or even experienced over a lifetime. For example, a lifelong partner may never be replaced, but the emotions she engendered can be, and sometimes as it was in the case of a friend, through a decidedly different type of relationship. They had been married for forty years, and each was the other’s best friend. They shared everything, and he felt that when she died, he lost half of himself. Following his wife’s death, my friend spent years looking for a new partner. After a number of disappointing encounters with women, he concluded that he would be emotionally unfulfilled for the remainder of his life. Since nobody could replace her, he believed her loss would shape his life until he died. By happenstance, he discovered hospice and found that the relationships he developed with patients gave him the same feelings he thought were gone forever. Same melody, but just a different instrument.
As we age, the skills we have cherished our entire lives may diminish. We may lose the company of those we love. And activities once thought to be crucial for our happiness may now be just a fading memory. If we persist in trying to replicate them, our lives may become a series of failed attempts to play again our life’s melody. But it doesn’t have to be that way. We just need to switch from the accordion to the violin.
My Catholic friends are apprehensive about Pope Benedict’s resignation. Who will be the new Pope? Will he pull the church more to the right or left? Will the new Pope become more forceful in addressing the abuse of children? For me, a non-catholic, the Pope’s resignation contains a humanistic and universal lesson: the grudging acceptance of aging.
At sixty-seven, I would like to think I have the physical strength I had at forty-years-of-age. Unfortunately, I’m forced to confront my self-deception when I struggle to lift a single case of bottled water. Ten years ago I carried two at a time. Fifteen years ago I played four-wall-handball with guys in their thirties and was energized even after playing for two hours. Now, I look for men older than me, and I am thankful when I have the strength to play a second game. As a university professor, multi-tasking was a way of life, and I usually could anticipate what a student was asking after the first few words of a question. Now, holding onto a single thought can at times be challenging, and anticipation usually leads to awkward misinterpretations. These changes and many others are like that annoying person who you have avoided inviting to your party, shows up anyway, and after alienating everyone, announces she is your best friend.
It’s easy to accept aging when we think of it as something that will eventually happen. It even can be as humorous as a joke on Saturday Night Live or a self-deprecating scene on a television Sit-Com. But the humor evaporates when it moves from something that happens to other people, to what is happening to you. It becomes most poignant when it results in changing your identity.
Dynamics of Identity
Identities are based on how we view ourselves—our abilities, roles, values, needs, and beliefs—whether that person is Pope Benedict or me. While the components of our respective identity stews differ, the Pope and I face the same dilemma: change one significant thing and the flavor changes. Change too many things and what was minestrone soup becomes vichyssoise. Who we are consists of a complex amalgam that is unique, and like a good Texas chili, has no specific recipe. If unimportant components of our identity are lost, few things may change. Losing the ability to add numbers in my head is not significant since I can rely on a calculator or the bank teller. But I become a different person if I view the loss as an indispensable part of who I am. Hats off to the Pope for realizing the same thing.
We Are What We Do and Believe
Some people maintain that everyone has a “core” that never changes despite what we believe in or do. The reasoning goes like this: All we need to do is strip the non-essentials away, and there it is; our unchanging, universal soul. Ah, if life were only that simple. But we are what we do and believe. The person who was an acclaimed professional football player ten years ago is not the same person now as he experiences the cognitive problems associated with a brain injury. The husband who relied on his wife for being socially appropriate, is not the same person who now, without her, stubbles through cocktail parties always wondering if he’s being politically correct. And it’s a rare caregiver who views her chronically-ill husband in the same way she did when they were first married.
Probably, one of the most important ways of accepting aging, is to understand that changes in our identity will continue to occur, right up until we die. The Pope today is not who he was when elected by the College of Cardinals. And who we are today is not who we were five years ago, and not who we will become next year.
Identities are dynamic, ever-changing entities. As our minds and bodies wind down, death is no longer something on the distant horizon, but rather an approaching appointment. And that realization changes who we are. I applaud and marvel at the Pope’s decision. Here is a person who holds the most powerfully autocratic position in the world and could remain in it, without challenges until he dies. Yet he recognized that he can no longer function effectively because of aging. Maybe I can now graciously accept the 20-something’s offer to give me her seat on the bus.
Visit the KQED Archives, where you can hear me read a shortened version of this article and nine other Perspective pieces that I recorded.
I look at my aging body and resolve to get in shape, lose weight, eat better, listen without judging, and practice my flute more often. They are the same resolutions I made last year, the year before, and ….you get the idea. I’m aware and committed enough to understand that I don’t have time to make many more of these resolutions, especially since my body is increasingly looking like an abandoned vintage car.
The solution to successful change is uncomplicated and usually ignored. There are three keys that transform the grueling process of change (often unsuccessful and temporary) into something as pleasant as a walk through a forest and as lasting as concrete.
—Understanding the role of personal history
—Willingness to modify goals
—Applying at least one proven principle of change
These three gems apply if you are trying to change your behaviors or the behaviors of other people. It can be a child, someone you’re a caregiver for, a loving but obstinate partner, an insufferable boss, your beloved dog, or a recalcitrant employee.
Into our present actions we bring a history of what we have experienced, have been gloriously successful at, or miserably failed at doing. If I’ve never practiced playing my flute for thirty minutes a day, why should I think that I can practice it consistently in 2013 for two hours every day? Great expectations are best left for titles of classic novels. It does little other than to set us up for failure.
There is the vegan saying, “you are what you eat.” Possibly a little too radical for me since I do eat things I’d be embarrassed to make public. But it does apply to what we have experienced. We are our history.
I keep hearing diet pundits, exercise gurus, and personal change “experts” talk about change as if what you do today, is not related to what you did yesterday, last week, or last year. Start anew! Become the person you always wanted to be! Do a complete make-over by sending me $39.95 for a program that will reinvent you! Ah, if life could be only that simple.
Maybe these maxims for change work with six-year-olds whose past weighty decisions are ones such as whether to have strawberry or vanilla ice cream, and who suffer the trauma of selecting the wrong flavor. But for the rest of us, and especially for us “older” folks, we bring into the new year experiences and decisions that are a bit more substantive. We may not be what we eat (God forbid!), but we are what we’ve done.
That doesn’t mean change is stymied by our past. Rather, we should view our past as if it is a wise old grandmother. Just listening to what she has gone through tells us what to be wary of and what to embrace.And that knowledge can take the form of goal selection. If I failed meeting my musical practice expectations for the last five years, why should I think I’ll magically succeed in 2013 just because I’m more resolved to do it?
Does that mean we shouldn’t make new year’s resolutions? Absolutely not! But I’m suggesting that you choose a reasonable goal if for no other reason than to succeed rather than fail. Don’t plan on loosing 20 pounds in 2013 (30 pounds for me), think in terms of 5 pounds. It’s reasonable and you’re more likely to succeed. And nothing stimulates new successes more than old successes. Conversely, the same is true with failures.
As we age or develop chronic illnesses, we often look at what we were able to do five, ten, or fifteen years ago, and assume we can still do the same things today. Fifteen years ago, I could still play four-wall handball with guys half my age. As I got older and still played against them, my love of the game diminished. The game didn’t change, my body did. I was able to rekindle the love by playing people around my age rather than younger players. I adjusted my goals to changes in my ability.
Principles of Change
In my thirty years of counseling, I’ve rarely found that failures in change occurred from a lack of motivation. Rather, it has more to do with not knowing the research-proven principles that govern change in everything from diet to personal relationships. We all know what we want to change, but may not know how to do it.
More Information On Change
If you are interested in learning about the “how of change” and using the knowledge immediately to be more successful in 2013, you can receive a free pamphlet. Just sign up to receive occasional articles (every 3-4 weeks) such as these, and you’ll be directed to a free pamphlet on change.
Don’t what to receive further notifications? You can remove yourself from the email list after receiving the pamphlet. If you’re a current subscriber to my email list and aren’t given the option of getting the free pamphlet, email me at firstname.lastname@example.org, and I’ll send you the link.
The material in the pamphlet is based on my thirty years as a communications counselor and researcher in human information processing, eight years as a hospice volunteer, and four years as a caregiving consultant and coach. There’s little philosophy here, but a lot of factual “how to information” that I’ve personally seen work.
Have a happy and changeable New Year.
On news shows and press conferences about the Sandy Hook Elementary School, I repeatedly heard things such as
—-Our hearts go out to the families and survivors.
—-Pray for them.
—-Although we can’t understand it, it’s God’s will.
—-This is a tragedy of unimaginable proportions.
Although all were said by well-meaning and genuinely compassionate people, none of these suggestions or explanations were helpful for understanding what I felt.
Blame and Understanding
On the talk shows, pundits placed the blame on the NRA, the easy access to firearms by the mentally unstable, and a culture that idolizes violence. Maybe all are true, but that can’t explain the emotions I experienced when I heard the news.
I didn’t know any of the children or their families, nor have I ever been to Connecticut. Yet I felt grief more appropriate for a family member than a stranger. An easy explanation for my grief and that of the millions who didn’t know the children but feel a tremendous loss is that we are mourning the death of a life—and especially one that is young.
But last week only two minutes of news were given to the UNICEF report that more than 500 children have been killed in theSyrian civil war. And I don’t recall anybody I know even mentioning that tragedy or grieving for those children and their families.
Does that mean that I think the grief I hear on television from every newscaster, politician, and talk show host is disingenuous? Absolutely not. But understanding it requires looking at the hidden nature of grief.
What is Grief?
We all are familiar with what grief looks like: crying, emotional labiality, disengagement, anger, etc. But these and other behaviors everyone has experienced are expressions of grief—not grief itself. Those of us who are involved in dealing with people who are grieving try to understand what’s behind the outward expressions. The answers aren’t as straight forward as many believe. We grieve what is lost or what may be lost. Think of grief as concentric circles with you in the middle. The closer the loss is to you, the easier it is to understand.
For example, when you lose something that is an essential part of your identity, your grief is immediate and as personal as it can be. I cared for an avid walker who developed ALS. When he longer was able to walk through the Rose Garden in Golden Gate Park, the grief he experienced was as genuine and profound as losing a life-long loving partner.
The next outward circle is the loss one experiences when someone significant in your life dies or leaves. That person could have been a part of your identity or generated emotions within you that made life meaningful. This type of grief is also easy to understand. We all have experienced it and seen it in others.
But things become muddled when we grieve for someone we don’t know with the emotion usually reserved for a loved one. I watched hysterical people at impromptu memorials grieving Michael Jackson’s death as if he was their son, father, or lover. I doubt few ever met him, and probably none had a personal relationship with him. So why was the grief so profound and genuine?
Confronting Our Fears
I think grieving over the deaths of people we don’t know often has to do with confronting our worst fears or realizing how important the person was for establishing our identity. President Obama said it best when addressing the nation that he was speaking as a father, not the president of the United States. And as those of us who are parents know, at least once in our lives we’ve had the nightmare of losing our children.
With the loss of a child comes not only the loss of a life, but the dreams we had for our children and ourselves, and the loss of a significant role that defined us. When we mourn the death of someone we don’t know, our mourning may be embedded in understanding that potentially, we can experience what their families did. Although it wasn’t my child who died, next time it could be. The uncertainty of what may happen to us or our loved ones can be as devastating as the actual deaths in Connecticut.
I’m sure, there will be many analyses of what precipitated the tragedy and even more suggestions for how to prevent it in the future. And I’m sure lessons will be learned—and if history is repeated—not applied. But I’ll leave those weighty issues to others. For me, tragedies such as the deaths at the Sandy Hook Elementary School will never make any sense. But I can ask myself, what was it about this tragedy that caused such a strong emotional reaction in me and others? What is it that we fear so much that this tragedy can press an instant emotional reaction button, and why didn’t that happen when we heard about the Syrian children?
If there is any lesson to these senseless deaths, it is that it forces us to confront our worst fears. Tibetans have a saying, that you should bring the sharp points of life closer to you in order to get over your fears. Unfortunately, sharp points will probably repeatedly occur from events that will be just as tragic—or even more so—than what happened in the Sandy Hook Elementary School.
We move in a world created by our history and often pretend the past and present aren’t connected. A partner becomes annoyed at what we do or say, and we can’t accept the notion that their annoyance is our fault. They say something we find hurtful and don’t recognize that their words are connected to past experiences. We give advice in the form of “If that were me….” and don’t understand why it’s ignored or viewed negatively.
The delusion that life exists within a vacuum without connections to the past is lauded in the belief that a “fresh start” is always possible; that we have the ability to wipe clean the slate. Admonitions such as “that’s the past,” does little to diminish present day effects of old unskillful words and behaviors. Just as the turtle does with his shell, we bring our history with us into everything we do—unless we have perpetual amnesia.
Personal History and Present Behaviors
As I age, I see that many of my current behaviors connect to my past. I know much of my writing on discrimination is based on my experiences growing up in a small, anti-Semitic town in Eastern Pennsylvania. If my life as a child had centered around a privileged social position, I know I currently would be focusing on different topics.
Our history not only consists of those things we have experienced, but also the losses we have suffered—emotional, physical, and cognitive. Those losses that are significant—ones that defined our identity—are rarely just accepted and put to bed without any further thought. They become “issues” that ferment like a wound that won’t heal. A family caregiver once said to me when talking about the death of her daughter, “I knew I’ll never get over it. The pain just transforms itself into different things.”
How We Process Information
We may have a better understanding of why we do what we do, by thinking in terms of how we gather, process, store, and use information. And conversely, why other people choose to do things we may think are wrong or bizarre.
People often think of brains as bigger versions of laptop computers. But there are vast differences between how the two work. The brain never quite “fact-checks” the way a computer does. You write an email with a specific address and your internet server “decides,” whether to accept or reject it. You then receive one of two messages: “email sent,” or “no such address.” The feedback is simple—you either typed the address correctly, you typed it incorrectly, or the address no longer exists.
Nothing is quite as straight-forward when the brain processes information. For example, someone you love says “You aren’t sensitive to my needs. You never listen.” The brain says, Okay, I know what the words mean, but is that true? Is that what I remember doing? Am I capable of being insensitive? It compares the incoming information with its historical memory—experiences and beliefs.
If the information is totally new (very rare), the brain just stores it with minimal distortion for future use. But, if it’s not new, or is a modification of what’s already been stored, the brain views it through a complex filter of experiences, beliefs, and needs. It does this to attach “meaning” to it.
Unless you have Alzheimer’s or other forms of dementia that stop access to memories, you’re stuck with perceptual filters that can bend the meaning of the message. And what makes the interpretation even more difficult is that you may not have any idea why your behaviors were interpreted as they were.
The World According to Rashomon
Since all perceptual filters are unique, we live in a world of multiple realities where what I think of as “the truth” is just as colored as what someone else believes. In the 1950’s movie Rashomon, written and directed by Akira Kurosawa, four characters describe a gruesome death. Although the four had witnessed the same event, their descriptions of what happened were substantially different. Many people would reject the possibility that all four were telling the truth. After all, they all were involved in the same event and heard, touched, smelled, and saw the same things. But “truth” in the movie starts to change when information is crunched through each individual’s unique values and needs.
In the 18th century, philosophers spent countless words arguing about “truth” and “reality.” Some believed that there was only one reality, regardless of what anyone believed. Others maintained that truth is relative since everybody sees the world differently. While that discussion was largely academic, the importance of understanding why people may see things differently has real world consequences.
The bottom line? The next time you are in an argument with someone and begin to evaluate their words and behaviors in absolute terms, or think of saying “If that were me…”, remember, you’re looking at it through your own set of distortions. To some extent, we all are actors in Rashomon.
Most of us believe the world should be viewed as we see it. And when there is a discrepancy between the right way—ours—and the wrong way, we are, in the words of Captain Louis Renault in Casablanca, “shocked.” However, he always knew that gambling occurred in Rick’s Café Américain. Our shock over the differences is genuine.
I saw it on the face of the thirty-something-year-old in an Apple Store as he tried explaining to me—someone in his sixties—the simplicity of a computer program I viewed as more unfathomable than the birth of the universe. I heard it in Starbucks from a man who was wearing a Romney button and telling his friend that he couldn’t understand why everyone didn’t see the left-wing conspiracies he believed were so obvious. And as I counseled a caregiver, I painfully listened to the woman’s description of her terminally-ill husband’s ingratitude after she spent ten years compassionately caring for him.
CAPTIVES OF OUR HISTORY
Whether it’s issues involving age, political preferences, caregiving, or virtually any other form of human interaction, our personal history may be at the root of our shock when we make it the sole reference point for understanding the words and behaviors of other people. How many times have you said, “If it were me, that’s not how I would have acted.” But unless you lived an identical life and have identical values, your belief that you would have reacted differently is just a theory.
I remember my mother becoming annoyed with me more than forty years ago because I bought a Volkswagen. “How could you?” she said. “Have you forgotten that thirty-three relatives died in Auschwitz?” Her view of life was shaped by genocide in Poland and bigotry in the United States. Conversely, I’ve cared for a hospice patient who emigrated from Germany as a teenager in the early 1950’s. She couldn’t understand why people treated her as if she masterminded the holocaust, especially when the judgment came from people who, like my mother, were caring and rational.
NO INDEPENDENT REALITY
The older I get, the more I realize there probably is no such thing as an independent reality—despite my acting as if there is one. I’m not talking about academic discussions of whether or not something exists outside of our consciousness (e.g., does a tree make a sound when it falls if nobody hears it?) But rather, a much more down-to-earth, useful idea—we see everything through our history. I know some people would argue for the universality of certain beliefs—both religious and secular. This type of black and white distinctions in a gray world become the moral certitudes that cause us to be shocked, angry, disappointed, and hurt when someone doesn’t see the rightness of our interpretation of reality.
There are few consequences when the person we are disagreeing with or chastising is someone who may be distant from us, such as a politician. But often it’s closer to home, such as a partner doing something we consider disrespectful to us or a person we are caring for being ungrateful for that we have sacrificed. The problem with expecting others to live by our convictions is that it says, “You should act as I do, because this is something I believe is true.”
I’m sure some shouldisms are universal, but when I think about most points of friction in my own life and those of my clients and patients, it’s personal history rather than abstract, universal values that are most often responsible.
It’s our personal history that leads to absolute positions about abortion, relationships, caregiving, and end of life decisions, just to mention a few. The problem is that many things we believe are absolute, are just reflections of our personal history. When we pretend that it doesn’t matter, we demonize those who we disagree with, and worse, fail to understand why they did or said what they did.
VIEWPOINTS REFLECT NEEDS, NOT NECESSARILY TRUTHS
When I visited Buchenwald to do research for a novel I just completed, I tried to understand how the people in Weimar—a small city which is only six miles from the concentration camp—could pretend that something terrible wasn’t occurring within it’s electrified barbed-wire fences. And even if they initially couldn’t, how would they explain the ashes and smells from the huge chimney in the camp that drifted over the town every Tuesday and Thursday?
When I found someone who would talk honestly about their life as an adult in the 1940’s, he explained that, before Hitler, he and his family ate only once a day. And in the winter, there wasn’t enough money to buy even a few pieces of coal to heat their house. In a moment of incredible honesty, he said, “We believed in the Nazi ideology because it filled a need in our lives. Yes, we saw horrible things when we bought pork from the guards at the entrance of the camp. And yes, we saw the ashes and knew where it was coming from. But our belief in Hitler was more important than what our eyes and noses told us. He wasn’t a madman, just someone who understood our needs and how to fill them.”
UNDERSTANDING RATHER THAN CONDEMNING
Today, many people face a similar dilemma—a disconnect between what they want to believe and what they experience. As I look at my own behaviors, and those of my client’s and my patient’s, I’ve come to understand that because we are human and have lived very different lives, everyone sees the world differently. A caregiver sees the sacrifices she made to care for her husband and doesn’t understand his ingratitude. Her husband doesn’t believe his annoyance at his wife is ingratitude, but rather a way of dealing with a loss of control and his imminent death.
It’s so much easier to evaluate someone’s behaviors in black and white terms: I’m right, she’s wrong. I’m sensitive, he’s ungrateful. I care, they don’t. These absolutes may be necessary in an age when we seek clear distinctions between right and wrong, ethical and non-ethical behaviors, moral and immoral decisions. Simplifying the complexities of human relationships may lead to easy condemnations, but it often prevents our understanding why a person does or says something that to us is as unfathomable as the origins of the universe are to me.
So the next time you’re shocked with someone’s behaviors or words and are tempted to make a value judgment, try to understand their history, which may involve the inculcation of parental values, abandonment, a life-long disability, a chronic illness, the realization that their death will occur within months, or any other aspect of a personal history that forms the vessel into which they pour their lives.
Righteous judgments and moral outrage move us to the past—things that have already happened. It does little to explain why something occurred or was said. And, more importantly, offers little guidance for the future.
The Buddha said who we are today is based on who we were yesterday. And tomorrow we will become what we decide to do today. His words are just as poignant today as they were more than two-thousand years ago. It’s understanding and not condemnation that allows use to prepare for the future. Maybe we’re not always right and maybe those who we criticize aren’t always wrong.
The good news is we are living longer. The bad news is it’s taking us longer to die. Soygul Rinpoche, the Tibetan monk and philosopher said that “Death is no big deal. You breathe in, you breathe out, and then you don’t breathe in anymore.” As a hospice volunteer for eight years, I would agree. But I’ve found the big deal is the journey towards death—aging. In the middle ages, most severe illnesses were followed quickly by death. Today, new medicines are allowing millions of older people to live longer. But longevity often comes with a price—the loss of dignity.
Loss of Dignity
I visited a woman who was dying of lung cancer in a nursing home. What should have been the most spiritual time of her life became a nightmare. Not because staff weren’t compassionate—they were. Although she was occasionally delusional because the cancer had spread to her brain, moments of lucidity far outpaced the fantasies. When alert, she was treated as if she was either a child or someone who could no longer reason. She was neither. She confided in me that the worse thing was neither the pain nor the frightening delusions. It was the loss of dignity.
As a society, we often forget that people partially define themselves by how others treat them. Many people equate age with diminished capacity until they become “older” and treated as the village idiot because they forgot a name, lost the ability to be socially appropriate, or took a little longer to respond than a thirty-year-old.
Aging and Child-Like Behaviors
Any adult over 60 with children has experienced their offspring’s attempts to reverse roles. And as we age, the efforts become more pronounced and annoying. I remember a twenty-something computer store employee explaining to me how to run a simple software program as if I was a child who never got beyond crayons. It was irrelevant to her that I began using computers before she was born. The only thing she saw was my age. It wasn’t disrespect, but rather assuming that needing extra time to process verbal information was the same as reduced cognitive functioning.
As people age, many culturally dependent behaviors diminish and some eventually disappear. When superficial layers of one’s ego drop off, what’s left is the core of a person’s being—not necessarily their charm or witty demeanor—but core characteristics of being human.
What many younger people misidentify as “childlike behaviors,” are really behaviors stripped away of superficially and are as honest as those of a child before she or he learned to “shade” the truth. Honesty should never be confused with diminished cognitive ability. We often focus on what is no longer there, rather than what’s left.
We’re living longer with new medicines and earlier detection of life-threatening illnesses. Those of us who are aging may still be cognitively intact, but need to do things a little differently. It may take us longer to process information, but that doesn’t mean our brains have become as porous as a sponge cake. And even when there are cognitive impairments, such as with Alzheimer’s and other dementias, the emotions felt before the ravages of the disease, are still there. They are just expressed differently.
Choices and Perceptions
Unfortunately, many people assume that with aging, relevant, meaningful choices can no longer be made. I’ve often heard, “I know what’s best for Mom (Dad).” Assumptions are made that the elderly can’t decide for themselves what is best for them—from what to eat for breakfast, to the decision to die.
There’s a widely-held belief among family caregivers that their worldview is identical to the person for whom they are caring. It rarely is. The perceptions of a healthy forty-year old who believes he’s invincible can’t be the same as a 70-year-old in poor health who realizes she doesn’t have long to live. For example, most people believe cleanliness is important. And therefore, an incapacitated loved one should be washed. But how do you balance your belief in the importance of hygiene with a parent who values modesty–especially when they are told they will be washed by a new healthcare worker of the opposite sex?
Often, how we make decisions is dependent upon our values, needs, and expectations. The same is true for the elderly. Maintaining their own sense of dignity, regardless how they define it, is just as important, or even more so, than being clean or well-fed.
What would you do if you learned from this moment until you died you would be in pain? Not something mild like an occasional headache, but something that overwhelms every one of your thoughts, feelings, and actions.
For those who are willing to think about this very uncomfortable possibility, your answer might be based on a theoretical, religious, or spiritual conviction. You might think about something you’ve read or a workshop you attended where it was asserted that with enough focus, the mind can reduce the severity of pain, or even eliminate it. And in looking back at your past, you may find instances of being able to do just that.
I recently read a book written by a well-known awareness advocate who wrote that with sufficient focus on the present, a person could separate herself from the pain that was being experienced. A religious writer wrote about the redemptive value of pain as if it was in the same category as a confession. The problem with many of these books on pain management and acceptance is that it presents a picture of what someone who is experiencing pain should be able to do. Often in these books pain is described as something that is static and bounded by specific borders (i.e., in pain and out of pain).
As someone who routinely sits with people suffering intense pain at the end of their life, I’m constantly amazed by the discrepancy between what many writers describe that the mind is capable of doing and what I see it doing. It’s analogous to looking at a 1930’s map of Los Angeles and trying to find a road in a section of the city that didn’t exist until 1960.
I’ve always found more truth in what I experience rather than what I find in theories. And that’s the case with pain. As I recover from a successful total hip replacement, I’m trying to understand the psychology of pain. Both from my perspective and those of the people who I serve, who knew that although the palliative medicines they received made the pain “tolerable,” it would remain present until they died, which for some was measured in months. For those with chronic illnesses, the time frame was years.
So what follows is a personal perspective, devoid of theories, concepts, or even the latest research on pain management. It’s a view of pain that I think will resonate with those who experience it, provide a roadmap for those who will eventually experience it, and hopefully help family and professional caregivers who are responsible for loved ones and patients living with it.
THE INSTRUCTIONAL NATURE OF PAIN
If you view yourself as a compassionate human being, don’t ever try to convince someone who is experiencing pain that there is much to be learned from it. Yes, it can be instructive, as I am sure it was for an Abbess of a northern California Buddhist monastery who was dying from cancer accompanied by intensive pain, and thanked the Buddha each evening for one more day to achieve enlightenment. I think most people who experience pain would prefer a lucid conversation with a friend over a bottle of 30-year-old rum. Pain is a sharp point of living that you may not be able to run away from. But it shouldn’t be romanticized.
PAIN REDUCTION THROUGH AWARENESS OR CONCENTRATION
There is no question that meditation can reduce the pain associated with some things like a headache, sprained ankle, or localized pain associated with the healing of surgical sutures. But once we go beyond these types of pain, we enter into a very different world.
A few years ago when I was rushed to the hospital because of intense chest pains I was unable to use any of the meditative techniques that had been successful after a past surgical procedure. Was it because my skills as a meditator dwindled? No. The pain was so intense that there was no room for anything else in my consciousness. Not my practice, not what I thought I would experience before I died.
Fortunately, it wasn’t anything serious. But, it definitely was a “teachable” moment that made me realize the discrepancy that exists between what we think we are capable of doing, and what we can do in the presence of excruciating pain, may be unbridgeable.
Think about a child’s teeter tooter. If both children weigh approximately the same, the slightest amount of added weight on either end will pull that side down to the ground. A little more focus, and the pain can be minimized. But what happens when the child at one end weighs twice as much as the other child. Or three, or four times the amount? A little more focus may have no effect on reducing the pain other than making us feel guilty about not being able to endure or control it. I think it might be similar to a husband telling his wife who is in labor how important it is to relax.
THE SPECIFICITY OF PAIN
When most people think about the pain, they’re thinking about a specific time period—when it’s happening. But pain has porous boundaries. For example, after my surgery I knew that once my non-operated leg was in bed, I would have to lift the operated one. And while I wasn’t feeling any pain at that moment, I anticipated what I would be shortly experiencing. And the reverse happened when I got out of bed. The actual pain lasted only a few seconds. But the anticipation of it continued as long as I thought about it.
Pain is not confined to just when it is experienced. Sometimes the dread of anticipating it is more debilitating psychologically than the pain itself. Imagine being faced with making a decision to do something you know will cause you immense pain, but something you know has to be done. And if you had to make that decision, as people with chronic and terminal illnesses do every day—maybe dozens of times a day—how much would that change you? It’s not only pain that changes personalities, but also the anticipation of it.
THE UNPREDICTABILITY OF PAIN
A hospice patient once said to me that she had learned to live with her pain. What caused her the greatest problems was not knowing how long it would last, or once relieve came, how soon it would leave. With pain often comes uncertainty. How intense will it be this time? How long will it last? How much will I be able to endure?
I don’t think my personality changed during the first three weeks of recovery. Even though I asked myself the above questions every day, I knew the pain would eventually cease. But what would have happened if this was just the beginning of a chronic pain disorder, rather than the end of a successful recovery? I believe the longer someone suffers with pain, the more likely there will be changes in their personality. As a friend, or caregiver you need to be prepared to accept the changes and understand that the person you knew before the acute pain began may not be the same person you are caring for.
USING PAIN MEDICATIONS
Without getting into the intricacies of palliative medicine (pain reduction), let me say that I’ve found the fear of becoming addicted significantly outweighs the likelihood of it happening. And doctors who are palliative care experts are very adept in managing it. Although many people react differently to pain medications, here are some generalities that may help you understand it. But of course, discuss these recommendations with a physician.
1. Increasing Pain. As the pain increases, more or stronger medication is needed.
2. Subjectiveness of Pain. The widely used pain management system (numbers 1-10) is subjective. What someone says is their pain number should be accepted. The person who is not experiencing pain is not in a position of telling someone who is that they’re exaggerating. The correct pain number is what a person who is experiencing says it is. Period!
3. Keeping Pain Manageable. Don’t wait until the pain is unmanageable. There’s no place for a stiff upper lip in pain management. And current research indicates that adequate pain management positively affects healing. It’s much easier controlling pain that’s less severe. Another way of deciding whether it’s time to use medication is being aware if the pain remains at the same level or is trending up. It’s important to stop the acceleration.
4. Don’t Wait. The longer you wait in a pain cycle to begin medication, the longer it will take for it to be effective, and the more you’ll need.
5. Palliative Intervention. Think of palliative (pain) intervention not only as a way of combating pain, but also preventing it before it becomes intolerable.
DISTRACTION, NOT AWARENESS
I know many of fellow Buddhists believe that awareness and living in the present is important. Logically, that would mean that those who are in pain should focus on it to overcome it. It’s been both my personal experience and experience with patients in acute pain that the opposite is more successful. For me, it’s either playing my flutes or listening to a Brahms Sonata. For one of my patients it was the TV Soaps. For another, his pain diminished when I read to him.
Although it’s possible to go into a long discussion on the physiology of distraction, it makes more sense knowing that it works.
We don’t like thinking about acute pain. And definitely reading about it doesn’t rank very high. Yet, millions of people experience it everyday and have trouble understanding why others react to them in a way that questions the legitimacy of their feelings. Hopefully, this article will shed some light on this misunderstand area of a part of life.
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.
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.
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.
Simon Singh and Stan Goldberg have a conversation about caregiving.
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 theywatch a mother cradle her terminally-ill newborn during a surprise Mother’s Day party? Andgratitude, 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.
“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.
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.
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.