Posts under ‘books’

On occasion I am profoundly moved by a film or a movie which actually causes me to look at life differently. These moments are few and far between in actuality, but last night on a Valentine’s date, my wife Mary and I experienced the profundity of The Diving Bell and the Butterfly in all of its cinematic glory. It is very rare for me to walk out of a movie theatre and feel that what I’ve just seen has changed me in a dramatic way, and this experience was certainly of that caliber.

For those of you as yet unfamiliar with the story, the film is an adaptation of the book by the same title which was written by Jean Dominique Bauby, a former publisher of Elle Magazine who experienced a massive stroke in the prime of life. Bauby was diagnosed with Locked-In Syndrome, a condition in which the afflicted individual is completely paralyzed—except for eye movement—but is fully cognizant with complete brain function and intellectual capacity. Hence, s/he is considered “locked in”. Through the efforts of his caregivers, Bauby was able to dictate his profound insights through blinking his eyes in response to the recitation of the alphabet. Letter by letter, he made his thoughts, wishes, and writings known, and the book was published shortly before his death in 1997.

Visually, the film is almost completely shot from the viewpoint of Mr. Bauby, using soft focus and other techniques to simulate how he might experience his visual field. Dream sequences are used to great effect, as are sequences in which Mr. Bauby consciously chooses to allow his imagination to bring him to beloved places and to relive peak (and less-then-peak) life experiences. Through the film, we understand that Bauby is struggling to come to terms with his maddening physical condition, the challenges of communication with the use of only a single eye, and his desire to make amends with those he has hurt. Unable to hug his children or comfort those around him, his desire to communicate his inner world does battle with his desire to simply relinquish his hold on life and sink into self-pitying despair.

Seeing such a portrayal of an individual’s struggle with absolutely debilitating illness puts into perspective my own constellation of infirmities. Taking into account my own collection of diagnoses—which, mind you, is considerable but wholly relative—I am moved to take a fresh look at how much I feel these conditions truly impact my quality of life and whether I can assuage some of that impact by simply shifting my perspective. The powers of the mind can truly help one to rise above the vicissitudes of physicality, and it may be time for me to take further action on that account.

So, what does it mean to experience pain and suffering? And what is suffering when one bears in mind the greater suffering of others? How great is my suffering in relation to that of a Sudanese woman from Darfur who was brutally raped and watched her husband and children be killed? How does my suffering compare to her desolation as she sits alone beneath a plastic tarp in the midst of a refugee camp on the border of Chad? I consider the stress I experience while sitting in traffic, running errands or trying to repair my Internet connection, and I think of that woman sitting under that tarp in the desert, utterly alone. Does this assuage my own suffering? Can I use this as a lesson?

As the sun streams in my picture window and I admire the lush greenness of the rhododendron that peaks through the glass, I also see the richness of my surroundings, the abundance of wealth and comfort in my home, the new cozy couch delivered just days ago. I see the rocking chair, the portable heater, the new computer and speakers, the hundreds of books and CDs, the beautiful art on the walls. All this is mine, and I take it for granted.

Considering that I just quit my job and now have the grace of time to remake my life as I see fit, I remember how large a role the pure power of choice plays in my daily comings and goings. Is it truly a source of stress to decide whether or not to go swim at the pool today? Need I truly allow my mind to worry about whether I forgot to buy cereal or not? How much stress and worry is a broken plate worth? Is a bathroom in need of cleaning or a pile of laundry really that important?

Mr. Bauby’s decision to eschew his initial desire for death was born of his realization that he still had something to contribute, and that the power of imagination and memory could take him to the places where he could no longer physically go. Completely paralyzed and dependent, I would say that Bauby had a right to pity himself and to sink into despair, and he surely availed himself of those emotions, especially after first regaining consciousness and realizing his predicament. Still, he did not live in that space for long, and Bauby’s greatest achievement is the fact that he shared that journey with the rest of humanity.

For myself, I have a personal goal of purchasing a copy of this profound and life-changing film as soon as it becomes available, and to force myself to watch it at those junctures when I’m losing hope and falling into despair over life’s circumstances. Perhaps I’ll make it a double feature in which I will also watch Control, a film depicting the life, struggles, and extreme depression of Ian Curtis, the lead singer of the post-punk band Joy Division. Diametrically opposed to Bauby’s story—but equally superb in its execution—the film depicts how one young man allowed himself to lose perspective and sink into depression and suicidal ideation just as his life was opening into relative fame, fortune, and new horizons.

Perspective is certainly one of the keys to realizing one’s relative place in the world and the profundity of one’s own suffering. As the bumper sticker slogan says, “suffering is optional”. But are we courageous enough to actualize that reality each and every day? We can only try, and when we succeed—if only for a moment—we can celebrate that moment when we did indeed find ourselves in that timeless space of true acceptance and equanimity.

I have a predilection for reading books about medicine and nursing, and nothing pleases me more than discovering yet another satisfying or thought-provoking read, of which there have been many, and of which I fully expect hundreds more such experiences.

Apropos of such literary leanings, today’s praise report involves Open Heart: A Patient’s Story of Life-Saving Medicine and Life-Giving Friendship by Jay Neugeboren. The author is best known for his book Imagining Robert, the story of his brother’s struggles with mental illness and the burdens born by the families of individuals thus afflicted.

Open Heart tells the story of Mr. Neugeboren’s experience as a man of more than sixty years of age, who, in excellent and athletic physical condition, experiences symptoms which go misdiagnosed for months, eventually leading to emergent quintuple-bypass surgery which saves his life. In the process of telling his story, the author not only communicates wonder over the technological developments which contributed to his survival. Mr. Neugeboren delves deep into the psyche of lifelong friendship, its importance to quality of life, and the challenges faced by the patient who confronts an often splintered and impersonal healthcare bureaucracy. His insights into the world of medicine, doctor-patient relationships, as well as his relative position as a upper-middle-class author whose well-heeled and educated childhood friends—all of whom are doctors, by the way—contribute to his well-being through their advocacy, professional connections, and knowledge.

There are many ironies addressed in Open Heart, not the least of which is the notion that, even given his relative privilege and access to high quality healthcare, several of Mr. Neugeboren’s medical providers completely missed his tell-tale signs and symptoms of ischemic heart disease, putting him at great risk of debilitating illness and eventual death by myocardial infarction or stroke. That said, the author also is very determined to clearly acknowledge the additional (and enormous) privilege of having well-educated doctors within his closest circle of friends, all of whom went out of their way to support him, advocate for him, and procure for him the finest surgeons, hospitals, and medical treatment possible within the American healthcare system.

Despite (or perhaps in response to) his own class privilege and elevated societal status as a successful author, Mr. Neugeboren spends a great deal of time discussing what is wrong with American healthcare, eventually coming to the conclusion that access to appropriate, high-quality, affordable, and timely healthcare is the crux of the challenge facing the United States today vis-a-vis the health of its citizens. While he does not offer specific policy solutions to resolve the current healthcare crisis, the author does indeed use citations of appropriate literature to drive home the conclusion that the American healthcare system is broken, the poor are often left out in the cold, and that too many Americans go without healthcare in a country which spends more per capita on healthcare than any other industrialized nation. Taking his findings further, Mr. Neugeboren extrapolates his conclusions further into a global picture, wherein AIDS and other controllable diseases continue to ravage less developed countries, mostly due to a lack of political and economic will on the part of the United States and its economic peers. To wit,

“Valuing freedom of choice over constraints, and individual freedom over government regulation in the specific ways Americans do, we seem a long way from knowing how and when, if ever, we will be able, if in inevitably imperfect ways, to set reasonable and effective national healthcare policies.”

The doctor-patient relationship also plays a significant role in Open Heart, and Neugeboren describes how managed care, too much reliance on technology, and the economic pressures which drive the American healthcare system have only served to undermine the trust between patient and doctor. He continues,

“We might begin, if only begin, it occurs to me, by thinking in terms of what my friends and I have been talking about—providing those contexts in which greater access to care, continuity of care, long-term care, preventive measures, and public health measures are encouraged and endowed. If, too, we restore the doctor-patient relationship to a central position in medical care, and if we avail ourselves of the marvelous technologies that exist while at the same time remaining skeptical of those technologies that are more expensive than they are curative (and that cause us to neglect more urgent health-care needs), then, I say, we have a pretty good shot at making it happen.“

Neugeboren outlines how American tobacco companies prey on the young and the poor—both here and abroad—to make their profits while undermining the health of the world. He elucidates how access to quality care is often blocked by a class-based system which favors the wealthy and shuttles the poor to understaffed, overburdened, and poorly funded public healthcare facilities. The author also expounds how, in our post-modern awe of expensive technological advances, we have lost sight of what is most important in healthcare—the face-t0-face meeting of doctor and patient. And if that doctor is constrained from spending more than ten minutes with each patient due to increasing malpractice insurance, sky-rocketing overhead, and endless student loan repayments, this is a recipe for misdiagnoses, under-diagnosis, shoddy care, and missed opportunities for preventive measures which can ward off the advent of chronic (and ultimately expensive) disease.

On a global scale, one of the author’s closest friends, Jerry Friedland, a medical doctor committed to fighting AIDS in Africa, describes his frustration at the (as of 2002) inadequate response to AIDS in Africa by the industrialized world. Taking a potentially controversial stance, Mr. Friedland and Mr. Neugeboren describe how Americans are quick to respond to sudden catastrophes—like 9/11, where 3,000 people died, however tragically—with fervor and purpose, yet, in the face of a long-term catastrophe like AIDS, we lose our momentum, even in the face of more than 3 million deaths per year in sub-Saharan Africa alone. Of course, they hasten to add, 9/11 was a watershed moment for the world and deserved the attention which it garnered, yet the relative loss and destruction inherent in that singular event cannot compare numerically with the ravages of worldwide disease, antibiotic-resistant organisms, global poverty, famine, ongoing war, and genocide. According to Dr. Richard Horton, the editor of The Lancet, “the major issue in medicine is not one of maintaining the pace of discovery, but of making sure there is equitable access, throughout the world, to the discoveries we have already made.”

Citing studies by the World Health Organization, Neugeboren implores the reader to comprehend that, between 1990 an
d 2020, “unipolar depression (also called clinical depression) is second behind ischemic heart disease, in rank order of the global burden of disease (a measure of health status that quantifies not merely the number of deaths but also the impact of premature death and disability on a population).” He also cites a study stating that, “of the ten leading causes of disability worldwide, five are psychiatric conditions (depression, alcoholism, bipolar disorder, schizophrenia, and obsessive-compulsive disorder).” Food for thought.

Immunization, preventive healthcare, sanitation and hygiene, screening technologies, life-saving medicines—these are all well-understood tools in our arsenal against disease, yet economic constraints, xenophobia, and lack of political will often prevent such simple technologies from reaching those most in need. Lobbyists for the tobacco, alcohol, and firearm industries fill the halls of our Capitol every day, squeezing out the small voices who call for parity, justice, and equal access to quality healthcare for all. It is a sad state of affairs, and authors like Jay Neugeboren are able to bring such disparities to bear with wit, wisdom, and personal reflection.

Open Heart not only explores the challenges of personal, national, and global healthcare in the 21st century. It is also an ode to friendship, to connection, to self-reflection, and to gratitude for life. From the micro to the macro, from the familiar to the foreign, we are urged to consider the whole, be it our best friend down the street or an AIDS orphan in Niger. There is no qualitative difference between your visit to your local doctor and that orphan’s need for a 20-cent immunization against measles. But there is a quantitative difference, and that orphan, sadly, is much more likely to be denied what she needs to survive.

We have a choice, and Mr. Neugeboren has given us a gift to once again see that choice clearly. I, for one, accept that gift gratefully, and will continue to bear in mind the lack of such a qualitative difference between me and that orphan, and will use my voice to remind others of her equal right to life, liberty, health and the pursuit of happiness.

For me, vacation is often about reading books, and this vacation was no exception. This time the main read was “Three Cups of Tea” by Greg Mortenson and David Oliver Relin.

Mortenson, an avid mountaineer who became ill while attempting to climb K2 in Pakistan in 1993, fell in love with a Pakistani village that showed him enormous generosity, promising to return and build a school for the girls in that impoverished mountain community. More than a dozen years later, Mortenson’s Central Asia Institute has built and/or supported scores of schools (mostly for girls), trained women in vocational centers and programs, funded projects involving sanitation, water filtration, cataract surgery, and infant oral rehydration training, and provided earthquake relief for the impoverished people of Pakistan and Afghanistan.

When Mary and I traveled to rural eastern Jamaica some years ago, we were similarly moved by the poverty we witnessed, and subsequently partnered with a US-based NGO to provide a three-year community development project focusing on education, sanitation, and hygiene. But our energy and the sustainability of the project was self-limited, and it is people like Mortenson who truly make a difference by creating sustainable, culturally appropriate programs which directly impact both quality of life and community well-being. In Mortenson’s view, building schools to educate girls, providing vocational training for women, and decreasing preventable infant mortality is more key to the so-called War on Terror than any military endeavor of the past, present, or future. It’s no wonder that the subtitle of Three Cups of Tea is “One Man’s Mission to Promote Peace…One School at a Time.”

For its occasional literary flaw or editing glitch, Three Cups of Tea far makes up for its failings due to its crystal-clear message. In my mind, there is truly no argument against the notion that education is the key to peace, health, and prosperity, and Greg Mortenson has inspired me to again seek avenues through which my presence in the world can more fully repay the debt of my existence.

I am reading “My Grandfather’s Blessings: Stories of Strength, Refuge, and Belonging” by Rachel Naomi Remen, M.D., a book which appeared in our house from an unknown source. Many books grace our shelves and I personally have no recollection of how they landed there. More fool me. But these organically-acquired books which seem to grow from the very shelves out of nothing often seem to hold wisdom and messages far exceeding their exterior qualities or appearance. “My Grandfather’s Blessings” seems to be just one of those sorts of books indeed.

Dr. Remen writes: “We bless the life around us far more than we realize. Many simple, ordinary things that we do can affect those around us in profound ways: the unexpected phone call, the brief touch, the willingness to listen generously, the warm smile or wink of recognition. We can even bless total strangers and be blessed by them. Big messages come in small packages. All it may take to restore someone’s trust in life may be returning a lost earring or a dropped glove.”

About compassion, she adds: “Without compassion, the world cannot continue. Our compassion blesses and sustains the world.”

Through her recollections of her early childhood experiences with her grandfather, an Orthodox rabbi, Dr. Remen uses his wisdom—imparted through simple acts and simple words communicated to a little girl from a wise elder—to discuss simple axioms illustrating the beauty and simplicity of a life of compassion and service.

Not three chapters into the book, and I can feel in my bones that the lessons to be gleaned in the subsequent pages are many. My hope is that I can not only read the words and understand them intellectually, but truly hear them, integrate them, and embody them in daily life. This is the challenge—cultivating compassion, even in the moments when it seems far beyond one’s reach. That certainly must be the task at hand, and its fulfillment is not a mundane achievement. His Holiness The Dalai Lama has said that kindness is his religion. So, if kindness were to be one’s religion, I would venture to say that compassion would then by necessity be one’s commandment. And living by that commandment of kindness and compassion must be one of the greatest goals that anyone could ever strive to fulfill.

Please take a moment to surf over and peruse a review of a book by nurse-author Pat Colwell which I have written and posted on Nurse LinkUp .