Traumatic Awakenings

To be alone is one of the greatest evils for a person.

William James

I've always appreciated James' idea of loneliness as a threat to the human being.  We don't give it much thought through the societal bedlam and over-scheduled lives.  Many of us are constantly surrounded by both people and stimuli- auditory, visual, olfactory.  Yet, is it possible to be lonely even when you are with others?  Is it possible to be woefully alone while surrounded by friends? I say, indeed, it is. In fact, I believe this state of existential loneliness happens often in societies where disingenuous, superficial relationships flourish in commonplace. We rarely pause long enough to build the types of authentic and circumspect relationships necessary to avert loneliness- Martin Buber's idea of the "I-Thou" relationship. More importantly, many rarely journey inward to build the most important relationship of all- the relationship with the self.  Loneliness is a way of life in 21st Century Western culture, and the cost may be far too high.

James Lynch, PhD, professor of psychiatry and author of the book, The Broken Heart, asserts that loneliness is one of the leading causes of premature death in society.  The idea that chemical perturbations- the evolution of cellular regulation- incites emotional responses such as love, anger, fear, and loneliness set the stage for modern medicine.  Lynch disagrees with the Cartesian model that the language of emotion is separate from the body. Instead, he posits, the somatic reaction to stress, or loneliness, or grief is the body's way of communicating its suffering.   He asserts that some physical illnesses- cellular dysphoria- occur as a direct result of our bodies' failure to connect with others - and frankly, our true selves: "Because we do tell people to hide their suffering, their vulnerability and loneliness, and so they also hide their beauty...when you wall off your capacity to feel pain, you also diminish your capacity to feel pleasure."

Lynch extrapolates the result: narcissism.  Narcissism, he counters, means no self, no authentic self. These are people who are most likely to suffer heart disease, high blood pressure, and other chronic illnesses according to Lynch.  They cannot feel, really feel, their feelings at all. They do not know themselves, and they have no boundaries between themselves and the world. Narcissists get stuck in their suffering because they are wholly incapable of seeking out meaning; the eventual result being deriving joy even amidst pain. These types of individuals- very lonely individuals- are the least likely to awaken after a trauma- the least likely to recognize that fulfillment and pathos coexist throughout the human experience. Lynch says he has the scientific evidence to back his postulations.  

And I would further ask: How can we be in a real relationship with another if we are not in real relationship, first, with ourselves?  The longest journey is the journey inward. It may begin in loneliness, but it will most certainly end in knowing the self better than ever.  And the reward for this may be the gain of genuine, sustaining relationships and connectedness that enable us to truly be with others- and ourselves- during our short time on this earth.

"Too many things are occurring for even a big heart to hold."

W.B. Yeats

(Art entitled "Loneliness" by Santosh Gupta)

Death Talk: Docs dodge honest conversations

Elisabeth Kubler-Ross began this fight in the 1960's; before her death, she told me how it frustrated her that some physicians- even psychiatrists- had not yet "gotten it"-that the dreaded "D" word was still relatively unspoken in the medical community.

Indeed, it is difficult for me to imagine that this battle still continues, that it is even a controversy at all. It illuminates three things for me- 1) the ever present paternalism still alive and well in medicine, 2) the reluctance to build the types of relationships wherein honest discussions about death can take place, and 3) our ongoing circumvention of death at all- as if not speaking of it will help extend life... An important article posted today from the AP:

CHICAGO, Illinois (AP) -- One look at Eileen Mulligan lying soberly on the exam table and Dr. John Marshall knew the time for the Big Talk had arrived. Eileen Mulligan's doctor told her upfront that there are no good treatment options left to try for her cancer. He began gently. The chemotherapy is not helping. The cancer is advanced. There are no good options left to try. It would be good to look into hospice care.

"At first I was really shocked. But after, I thought it was a really good way of handling a situation like that," said Mulligan, who now is making a "bucket list" -- things to do before she dies. Top priority: getting her busy sons to come for a weekend at her Washington, D.C., home. Many people do not get such straight talk from doctors, who often think they are doing patients a favor by keeping hope alive.

New research shows they are wrong.

Only one-third of terminally ill cancer patients in a new, federally funded study said their doctors had discussed end-of-life care.

Surprisingly, patients who had these talks were no more likely to become depressed than those who did not, the study found. They were less likely to spend their final days in hospitals, tethered to machines. They avoided costly, futile care. And their loved ones were more at peace after they died.

Convinced of such benefits and that patients have a right to know, the California Assembly just passed a bill to require that health care providers give complete answers to dying patients who ask about their options. The bill now goes to the state Senate. Some doctors' groups are fighting the bill, saying it interferes with medical practice. But at an American Society of Clinical Oncology conference in Chicago earlier this month, where the federally funded study was presented, the society's president said she was upset at its finding that most doctors were not having honest talks. "That is distressing if it's true. It says we have a lot of homework to do," said Dr. Nancy Davidson, a cancer specialist at Johns Hopkins University in Baltimore.

Doctors mistakenly fear that frank conversations will harm patients, said Barbara Coombs Lee, president of the advocacy group Compassionate Choices. "Boiled down, it's 'Talking about dying will kill you,' " she said. In reality, "people crave these conversations, because without a full and candid discussion of what they're up against and what their options are, they feel abandoned and forlorn, as though they have to face this alone. No one is willing to talk about it."

The new study is the first to look at what happens to patients if they are or are not asked what kind of care they'd like to receive if they were dying, said lead researcher Dr. Alexi Wright of the Dana-Farber Cancer Institute in Boston. It involved 603 people in Massachusetts, New Hampshire, Connecticut and Texas. All had failed chemotherapy for advanced cancer and had life expectancies of less than a year. They were interviewed at the start of the study and are being followed until their deaths. Records were used to document their care.

Of the 323 who have died so far, those who had end-of-life talks were three times less likely to spend their final week in intensive care, four times less likely to be on breathing machines, and six times less likely to be resuscitated. About 7 percent of all patients in the study developed depression. Feeling nervous or worried was no more common among those who had end-of-life talks than those who did not.

That rings true, said Marshall, who is Mulligan's doctor at Georgetown University's Lombardi Comprehensive Cancer Center. Patients often are relieved, and can plan for a "good death" and make decisions, such as do-not-resuscitate orders. "It's sad, and it's not good news, but you can see the tension begin to fall" as soon as the patient and the family come to grips with a situation they may have suspected but were afraid to bring up, he said.

From an ethics point of view, "it's easy -- patients ought to know," said Dr. Anthony Lee Back of the Fred Hutchinson Cancer Center in Seattle. "Talking about prognosis is where the rubber meets the road. It's a make-or-break moment -- you earn that trust or you blow it," he told doctors at a training session at the cancer conference on how to break bad news. People react differently, though, said Dr. James Vredenburgh, a brain tumor specialist at Duke University.

"There are patients who want to talk about death and dying when I first meet them, before I ever treat them. There's other people who never will talk about it," he said. "Most patients know in their heart" that the situation is grim, "but people have an amazing capacity to deny or just keep fighting. For a majority of patients it's a relief to know and to just be able to talk about it," he said.

Sometimes it's doctors who have trouble accepting that the end is near, or think they've failed the patient unless they keep trying to beat the disease, said Dr. Otis Brawley, chief medical officer at the American Cancer Society. "I had seven patients die in one week once," Brawley said. "I actually had some personal regrets in some patients where I did not stop treatment and in retrospect, I think I should have." James Rogers, 67 of Durham, North Carolina, wants no such regrets. Diagnosed with advanced lung cancer last October, he had only one question for the doctor who recommended treatment. "I said 'Can you get rid of it?' She said 'no,' " and he decided to simply enjoy his final days with the help of the hospice staff at Duke. "I like being told what my health condition is. I don't like beating around the bush," he said. "We all have to die. I've had a very good life. Death is not something that was fearful to me."

Getting Through the Human Experience

To be alone is one of the greatest evils.

William James

Psychopharmaceuticals are plentiful here in the United States as a way to help individuals cope with  psychic angst.  Pharmaceuticals are marketed as a means to help anyone who is bereft with depression, PTSD, personality disorders, anxiety, PMS, menopause, postpartum-related depression, mood disorders, dysthymic conditions, and even grief.  

A high number of bereaved parents, in my experience mostly mothers, are also prescribed anti-depressants. For some, these pharmaceutical remedies can bring equilibrium to a person who is fraught with debilitating mental illnesses.  Yet, are we pathologizing normal, albeit painful, human experiences of suffering?

Indeed for others, according to Dr. Elio Frattaroli and psychiatrists critical of the overuse of prescriptions, SSRIs are being used as a shortcut to healing, the McDonald's treatment plan of the 21st Century- the comfortable numbing of a society.  We are afraid to feel suffering.  We are uncertain of our own strengths to cope with loss. We do not know how much we can- and should- rely on one another to help us through the human experience.

Interestingly, while SSRIs can help some selective patients with legitimate mental disorders, there are also long-lasting effects of SSRI use. Researchers at the University of Ottawa have discovered a correlation between stillbirth and other negative birth outcomes and SSRIs.   While other studies have demonstrated inefficacy of some SSRIs, even in the case of the severely depressed wherein SSRIs were no more efficacious than a placebo. In some cases, it's worse than we realize. SSRIs were identified to increase violent thoughts toward self or others, including suicidal thoughts. The FDA has warned of these dangers at least twice; yet so many people remain enslaved in a cycle of medication and remedication.

I am not an expert in the use of psychopharmaceuticals for the severely depressed.  

I do, however, know that there are voluminous studies on the benefits of human connectedness, social support, and compassionate others.  Being connected with and supported by others helps women have healthier babies with higher Apgar scores. It helps women cope with the stress and angst of breast cancer. It reduces the effects of postpartum depression.  It helps the homeless and mentally ill.  It even helps accelerate recovery from a myocardial infarction (heart attack).

We are a society of aloneness, a society afraid of really experiencing our own emotions and the feelings of others. Many are emotionally bankrupt, while others are depleted of the most basic of human empathy. We are rushed, hurried, and harried. We do not have time for pause, or reflection, or grief- we have not scheduled suffering into our calendars. Our lives are consumed and constricted by things that are not real- Hollywood gossip, Blackberries and Palm Pilots, parties, Prada shoes, and consumerism. We are so diverted from what really matters that we hardly recognize that which is real- even real relationships. So few of us really have time for authentic relationships- the types of friendships in which we can entrust our pain and suffering. And it takes a tremendous amount of psychic energy to maintain the fraudulence of empty lives.  Is it any wonder so many in Western society face the types of existential crises that cry out for meaning and purpose and connection?

There is no substitute for human relationships. In the absence of meaningful connections to others, we will not survive as a species nor as individuals. We need one another to help us through suffering. We need guidance through the human experience. The answers do not lie in a bottle or in a pill or in distractions or in diversions. Our salvation from suffering, what will save us from the darkness, is the hope, love, empathy, and compassion we offer and receive from one another. It is the only way through the human experience.

Have you come to that Red Sea place in your life 

where there is no way out but through?

Merritt Malloy

Primum non nocere, prosum beneficum

When my daughter died in 1994, I heard nothing from the hospital staff after our discharge. Instead, I returned to my home where grief had taken residence, and I was left alone.  No social worker or nurse attended to my needs. No pastor or clergy offered aid. No physician called to check on our family. No cards were sent from the medical staff. Nothing. Just the silence of apathy and death, now camped next to my bedstand.

In 1999, five years later, our dog, Bandit, died.  The veterinarian and his staff were gentle, kind, and empathic. They called that same day to check on us and express their sympathy.  And four days later, we received this card in the mail:

To Bandit's Family

Our thoughts are with you, 

when sometimes the hurt is too big for words. 

We are so sorry for the loss of Bandit. 

I know you loved him and that he will be missed. 

Roger William DMV and staff

I was, frankly, both awed and angered.  How is it that years earlier, I had not received this type of care and compassion upon the death of my child?  What gives?

The ethos of primum non nocere, first do no harm, has been a guiding principle of medicine since the mid-nineteenth century.   This axiom quickly becomes familiar to med school students as they endeavor toward epistemic gain and become introduced to the micro-culture of medicine.

But is a postmodern detached, passive interpretation of this canon enough? Do we stop at first, or is there an imperative to do more?And should physicians strive for better than merely doing no harm? Why not strive toward beneficence?

A recent article published in the journal Academic Medicine (Newton, Barber, Clardy, Cleveland, & O'Sullivan, 2008) titled "Is There Hardening of the Heart During Medical School? Physician-Patient Relationship"  explored vicarious empathy during medical education. 

They found that "empathy significantly decreased during medical education (P < .001), especially after the first and third years". The authors concluded that diminished vicarious or emotionally driven empathy occurs after the first year and after the third, clinical years of medical education when students “were seeing patients they had, presumably, looked forward to helping.”

Interestingly, another study conducted by Jean Decety, Professor in Psychology and Yawei Cheng of the Institute of Neuroscience found that physicians unconsciously learn to turn-off the center of the brain that initiates empathic responses. In their 2008 article,  “Expertise Modulates the Perception of Pain in Others,” published in Current Biology, they note that physicians "have learned through their training and practice to keep a detached perspective; without such a mechanism, performing their practice could be overwhelming or distressing, and as a consequence impair their ability to be of assistance to their patients”.

Based on their current and previous research, Decety and Chang affirmed that these physicians are unique: their neural circuitry, which normally registers pain when one person sees another person in pain, experiences no activity during such an exercise. The response in this circuit, which includes the anterior insula, periaqueducal gray, and anterior cingulate cortex, is automatic and likely represents evolutionary panic responses in order to respond to danger. Unlike the control group, the sample group of physicians did experience an increase in the frontal areas of the brain- the medial and superior prefrontal cortices and right tempororparietal junction, where emotions are regulated and cognitive control occurs.  This unconscious training of the brain can incite emotional detachment, which some argue helps physicians avoid their own high levels of personal distress that may incite a host of psychological problems.

But is there a middle ground wherein a physician- or a nurse, social worker, therapist or other helper- can engage in empathy while maintaing important, self-preserving boundaries?  This is an important area for further social and neuro scientific research. For example, we should explore whether or not empathic traits actually do expedite vicarious trauma or perhaps burn out.  In other words, does compassionate and empathic care, in fact, "impair [physicians'] ability to be of assistance to their patients"? We should explore the positive, insulating benefits of relational mutuality for patients, their families, and the physicians as well.  These types of studies may provide more answers to many unaddressed questions about the nature of human relationships during distress.

As a clinician who has helped bereaved parents for thirteen years, many of whom have experienced trauma beyond any normal range of experiences, I would assert that, indeed, we can engage in this way. In fact, I'd go as far as to assert that there is no other way in which to experience authentic, meaningful, and healing human interaction.  It moves beyond the acquiescence of first, do no harm and prompts an imperative to then do good.  How to reach this place is complicated and I cannot teach it in a few words electronically scribbled on these pages.  It takes willingness to learn, and requires an abandonment of academic arrogance and the assumption of humility. They are lessons hard learned. But it is what I teach because it is that in which I believe. It is what I know to be true.  

And I think it is because I do go there with people, because I have trained my brain to remain responsive to and not allow flight during those fearful times, that I have been able to listen to thousands upon thousands of stories of trauma and loss, to watch hundreds of children die in the arms of their parents. 

I have allowed the germination of those meaningful relationships, and I have tried to nurture interconnectedness, even through the vicarious pain and angst.  I am nearly certain that if I'd tried to protect myself, sequestering my heart from these experiences, and not invited those empathic relational interactions, I would have suffered from caregiver burnout long ago.  And, oh what I'd have lost would be far greater than that which I've gained.  

Ref: Academic Medicine. 83(3):244-249, March 2008.
Newton, Bruce W. PhD; Barber, Laurie MD; Clardy, James MD; Cleveland, Elton MD; O'Sullivan, Patricia EdD

Losses, Life's Many Losses

Now that we are parting

rain has returned

I want to be nothing

only the fragrance of some scattered

rose and pass like smoke

now that we are parting

the music will fall and settle

in the pages of your books

and wait to be opened

now that we are parting

my eyes follow invisible

birds across the ceiling

hands become wind

and earth turns faster

than a night ago

I leave a white cloud

in your hands

now that we are parting

I will dress in rain and

watch the warmth behind

some distant window slowly

take on your name

-Lidija Šimkutė

I found an old stack of letters a few months ago from my first love. There were about 60 letters from him- the envelopes had browned, dried like flowers left in the sun. The creases were perforations now, and thinning paper is hard to fold for the hundredth time.

It was 1984. And he loved me so. I, in return, loved him beyond my wildest imagining. We were to spend our lives together. Through a series of tragic interferences and events, he returned to his homeland, across creeks, dams, rivers, and oceans, and into another time zone. He may as well have left earth's atmosphere for an unsophisticated 18 year old girl in love. Still, I waited. My heart overflowed with hurt as I replayed his promise to return, spoken hurriedly as he boarded the flight that would carry him out of my life and into the dictatorial grip of culture and tradition.

It would be more than two years before I would see him again. To say that my heart was broken would be an understatement. He was married, and the sliding door that would be mine was decided, not by me and not by him. 

This was my very first experience with loss and resultant grief. It was grief from which I would never fully recover. Though I would go on with my life, choosing new relationships along the path, no one could replace this man with whom I'd fallen hopelessly in love years- even decades- earlier. The effects of this relationship's ending would endure far beyond the weeks, months, and years to follow. The effects would shadow me throughout my adult life.

And so this is loss. It takes many forms. Sure, losing a relationship is vastly different from losing a child to death. Yet, there still is a very real grief process that accompanies all losses. People are not replaceable with another. This is why it is important to mourn the uniqueness of the person and the relationship that is changed or lost. Within me, there will always be an 18 year old girl who lost the most precious thing in the world to her. And I will always miss him, and what we could have had together.

And within me, there will always be the mother who lost her most precious child- the fourth one- the irreplaceable, unique little girl who I will always miss, and what we should have had together.  The shadows of my grief stick like paste; and though I tried to hide from them, they only changed form with the casting of light. And so this is loss.

Indeed, the window on my horizon has taken on many names of those parted. Josephine and John, Joseph, Elisabeth, Cheyenne. And I am dressed in rain.

Mother's Day Redefined

May 11th is Mother's Day. Few people spend this day contemplating the women- the mothers- who will suffer on this day. It is a day, instead, for celebration and gratitude.

There are times in our lives, however, when we must redefine our understanding of previously held beliefs. For many, Mother's Day is such a time.

My mother died at a young age, suddenly and unexpectedly. The woman who gave me life and who would help me to discover both who I was and who I wasn't is gone from this world. I cannot offer her my gratitude this year by taking her out for brunch, showing off her grandchildren. This requires me to see myself as a daughter- and her as a mother- in a much different way than I did for 35 years. I will remember my mother and my daughter. 

Yet, the event that would really challenge the essential meaning of motherhood for me would be the death of my daughter. I experienced motherhood in an entirely different way; and since her death, have sought ways in which I can remain her mother. It is not the way I wanted to be her mom, yet, still it is mothering indeed.  I've had to supplant the normal ways in which I would have filled that role, mainly through service to others. I will remember my motherhood and daughterhood.

For some reason, it's easier for others to understand that on Mother's Day I will think of my own dead mother and miss her, honoring that relationship and mourning all that I've lost. Yet, on Mother's Day I also miss my own child, the MISSing piece of our family, and I mourn all that I've lost, while remaining incredibly grateful for all that I have.  

I've redefined motherhood to include the absence of their presence. 

This Mother's Day, I will think of them both and recognize, in my heart, that I am still both a daughter to my mother and a mother to my daughter. And, I choose to remember- to re-member- my precious girl. I will turn toward our love and the grief and bring them as a whole into my heart. 

Death, simply, is not bigger than that.