Says Who??

Verstehen, through shared perspectives


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COLLEGE STUDENTS GIVE MY LIFE MEANING

bare tree

The university academic year begins for me this week, and—not for the first time—my thoughts are heavy with the implications of the grave responsibility of educating the young. This year, though, seems to weigh heavy on my heart more than any such year in the past, with the possible exception of the years in South Africa during the end of apartheid and the first years of democracy. It could even be because of those years, and the comparisons that can be made between South Africa then, and the United States now, that my concern is great.

Of course, no comparative study would find a perfect correlation between the two countries. But there are many similarities, especially when observing the issues of race, intolerance, social injustice, disenfranchisement, rule of a power elite—I could go on, but already it become obvious that there are points to be made, as well as huge differences in the two situations. Can anything be learned from the past in another country, that would shed light on a way forward for us in the present?

My course load this semester consists of Intro to Cultural Anthropology, Social Theory, and Political Anthropology. All three courses contain a great deal of material that directly relates to August 2016 in the United States. Some of these situations, like the failed war on drugs and its ongoing, devastating aftermath, do not appear to be related to anything that occurred in South Africa. But when you look deeper at the combinations of political misinformation, low intensity violence incited deliberately by the government, and antipathy between police and the often innocent subjects of their brutality, a shared trend appears.

In fact, one can see that the troubles in both nations were not caused by failed societal structures so much as by a shared failed personal accountability for human actions. I always try to find an opportunity to explain to my students why it is true that to the extent we dehumanize others, we dehumanize ourselves. And the more often that we do that, the less human we become. At some point, it no longer matters who we hurt, or how much we hurt them. Having reached that point, nothing is sacred—we can lie to each other, cheat in personal and public relationships, and shame our religious traditions by turning them inside out and using them against each other, rather than in enjoyment of the sacredness of our existence. Some people blame this on the capitalist profit motive; I blame it on unrestrained greed grown to inhumane size, however you want to rationalize it.

Our inhumane behavior is seen in social media pages, day after day. Many posts are deliberate lies, some are propagated by people and organizations who make a great deal of money developing the ways and means of destroying political opponents, or spreading ideas in order to challenge inconvenient truths about how we should live. Our youth often do not trust our government, our news media, or our religious leaders. We have an entire generation of youth who have grown up in the midst of uncontrolled verbal and media bile, day after day. Yet many parents and teachers are still able to reflect the values of integrity and community to their children; too many others have failed.

I don’t want to be one of those who fail those precious young people. It would be safe for me to just present the information in the texts as is, and avoid controversy. Unfortunately, sociology and anthropology are not calculus. They exist to provide a learning situation whereby we may study, compare, theorize, and determine the state of our world, and consider possible ways to improve our situation and that of others. If we learn anything at all from these disciplines, it is that humans are not meant to live just for themselves. We are psychologically and mentally geared to living in community, from whence we learn our sameness as well as our beautiful uniqueness; where we learn to share, to care for others, and to be cared for. It is where we discover the meaning of our lives, as Victor Frankl explains so beautifully.

On the surface, our country is in what Durkheim would call a state of anomie; of “normlessness.” There are too many who live by disregarding the norms of human interactions, of human responsibility. The rest of us are not free of responsibility for this state of affairs. The rapidity of progress has allowed us all to enjoy an unprecedented mobility, separation from family and old friends, from the norms that defined our lives when we were young people. The sense of normlessness that has grown has produced political and religious apathy, as our values as a nation have withered into weapons for some groups to hurl at others in hatred.

It could appear that all is lost. It is not. We can, and must, regain our humanity by treating others as the precious human beings they were meant to be. We cannot separate ourselves from community, especially from communities of meaning. We can look to the examples of those around us who are good people, who live honestly and compassionately. We can seek justice for those whose lives have been broken by injustice.

…..We can demand from our government leaders the same values that we hold for ourselves, and make sure not to repeat errors in judgement on that score.

….. We can bring family life back into vogue, securing the early years of our children with the nuts and bolts of honesty, responsibility, and community.

….. We can demand improvements in our education systems so that our children learn to think, not just to memorize.

And we can treat the people we run into each and every day as though they were human beings like ourselves: imperfect, yet full of potential; sacred to their Creator and therefore sacred to ourselves. Deserving of respect—enough so as to inspire those who have none for themselves to strive for improvement.

 

……Yes, this is indeed a heavy responsibility to owe to the students in my classroom. But why else would I even want to be there? The intergenerational discussions and learning that will take place give my life meaning. My students, who are also my teachers, are the joy of my life. When I meet with them again, that “heavy responsibility” will be rediscovered as a great privilege. So begins another year.

classroom


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RESPONSE TO DR. JEFFREY FUDIN’S REQUEST

In Dr. Fudin’s post today, comPASSION Fatigue https://t.co/rilJGgQxFG , he defines Compassion Fatigue as “essentially a form of burnout common to those of us who actually care.” He and his co-author explain the problems of advocating for good care for chronic pain patients while navigating the endless stream of misinformation, outright lies, overreaching legislation and its advocates, and the inability to understand the differences between the illnesses of substance addiction, and the suffering of chronic pain patients. “[W]e continue as a society unable to hold two thoughts in our heads, the suffering of the addict now that rules the day and the suffering of the pain patient has been relegated to a bottom dweller,” the article states.

Since most fail to listen to anyone they do not agree with, and no one seems to care about truth in advertising, chronic pain advocates and their physicians (and pharmacists) grow disillusioned and weary of the task. I urge the reader to use the link above to read this very relevant article, where the authors make a much more articulate argument for the case than I have made here, as well as reporting important new information.

However, it is not my intention to simply report on the article or its excellence. The authors realistically ask a very relevant question: Is anyone out there still playing the game? Are we still actively advocating for chronic pain patients? My answer is difficult to write.

Having been an undertreated chronic pain patient for well over 40 years, as well as a nurse in a county jail who worked with police, substance abuse addicts, and drug dealers, I believe my claim to a broad understanding of the situation to be credible. I am also well trained in both statistical and qualitative research as a result of my graduate degrees. Yet I am repeatedly called out as ignorant, as a probable drug seeker, or as simply being wrong about everything. I do have pretty thick skin, having been an academic dean for several years, and while friends compliment me on my ability to persevere, my parents called it “stubbornness.” But so far, it has served me well.

Again, I hate to quit, or to give up on a good cause. But at my age I have learned to pick my battles. I have only so much energy, thanks to my years of pain and the many disease processes that have resulted from that pain.

At the same time, that last sentence explains exactly why I have chosen THIS battle, and I will not give up or shut up. You may not see me in writing as often, because I am tired and ill much of the time. But I will write, and I will talk, and I am definitely still in the game—just benched to rest a little more often. I am far from being alone in this situation, and I no more want to see hundreds of thousands of others suffer than I wish to suffer myself.

Meanwhile, here is a thanks to Dr. Jeff, and to all the compassionate pain management physicians (especially mineJ) who stay in the game despite all the prejudice, dishonesty and even the honest ignorance and misunderstanding that muddies the waters and stains our souls. Then too, the devastation of the lives ruined and lost unnecessarily because of undertreated or ignored pain, and the new rhetoric that is based on the notion that we are all alike and our pain should be treated the same, accordingly. And let us not forget to acknowledge those compassionate physicians who have lost so much after being targeted and charged by federal agents with no accountability for their actions when they were wrong.

I am beginning to ramble, so I end with this statement: The pain of burnout and the pain of disability cannot end this battle. It is too easy already for many to forget or deny the reality of our existence. Our voices must continue to compel the truth into being.

Talmud quote


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I AM NOT A ROBOT (not a Luddite, either)

robot pt

Last summer my beloved Mercury Milan decided to give me mechanical problems, for the first time in the five years I had owned it. It simply refused to start occasionally, without any causality that my mechanic or I could discover. After several nerve-wracking months of this (along with the inevitable and infuriating responses from mechanics: “It starts just fine for me”), I was ready to drive it into the Ohio River. It probably would not have started so I could get it there, though.

I finally convinced a mechanic at the dealership to put the car on the computer for diagnosis. As both a former nurse and present patient, I liked that word diagnosis, and had no qualms about using it for the vehicle I had anthropomorphized by naming it Mahitabel, projecting both positive and negative emotions and reactions on its “behavior,” and more recently developing a love/hate relationship with it. The diagnosis, according to the computer, was that on several occasions in the past few months someone had tried to start my car with a key that did not belong to the car. Therefore, it did not start.

It took about ten more minutes of questioning by the mechanic, who proposed the possibility that someone was trying to steal my car, and answers by me insisting that this made no sense at all, before he looked carefully at my car key. It was bent, and one tiny place may have been chipped. He made me a new key and my buddy Mahitabel and I have traveled together predictably and smoothly ever since.

My point? The computer (a machine) understood more about my car (a machine) than both the mechanic and the owner. Yet both the mechanic and the owner had to engage in some research and analysis on the human level before the “diagnosis” could be corrected and treatment applied. The computer supplied data based on its programmed knowledge of the vehicle; the humans provided the ability to utilize both inductive and deductive reasoning, applied to real-life, present-world situations, to ascertain the actual problem.

This brings me at last to the reason I am writing this post. Two years ago, I posted “The Healers,” in which I compared the observations and insights of an African traditional healer with the best of today’s physicians, noting that in each case the healer was most effective when working as a caring and observant human healer to a human patient. I concluded that computers could not take the place of any physician true to his or her calling https://www.maryleejames.com/2014/08/08/the-healers .

Two years later, I have more reason than ever to challenge the efficacy of computers in the exam room of a physician’s office. In fact, I would go so far as to say that along with insurance company rules and overreaching legislation intended to make physicians toe the (sometimes contradictory) lines drawn by groups of people who lack the training and calling of the physician, the present demands of computer program doctoring have the capability of being the last straw that finally destroys medicine as we know it.

As the title to this article insists, I am not a Luddite. I love technology, especially when it works. I love the capabilities of the internet, and the ability to keep up with friends and relatives both far and near. I enjoy being able to get online on a busy day and save myself hours of shopping, and have the desired object delivered to my door within 24 hours. I love needing an answer quickly, and finding it; needing an outline of resources for research, and locating them with ease. But it is also these answers and resources that become the problem. I have to exercise my ability to discern the junk from the credible; the scams from the honest reports, because all that this wonderful piece of machinery can provide me with is the data that has been entered, just like my experience with the computer at the car dealership. It can’t make human judgements for me. Without my education and my experience, the overwhelming amount of unquestioned data could get me into a lot of trouble.

Therefore, I am concerned about the time my physicians must spend entering data about me into a limited machine. I am a sociologist, after all, and acutely aware of the reality that whenever humans are the subject of analysis, results are immediately complicated by a lack of predictability, and of psychological understanding; accuracy is also complicated by the uniqueness of every human being and his or her response to a given situation, whether physical or otherwise. And no situation for any patient is completely within the realm of any one discipline. We are affected by more than our pain—we are emotionally affected by its consequences, or by outside considerations that have nothing to do with the pain, but that affect our lives. We are affected intellectually by our understanding of the meaning of the pain, and what it may mean for ourselves and those closest to us; this translates again into emotional effects, which may or may not complicate the situation of the pain and therefore any understanding of the real diagnosis and best treatment.

That only considers the tip of the iceberg. It is dehumanizing to both doctor and patient to reduce medical practice to the inadequate data that can be acquired from, or placed into, a machine. It is dehumanizing to try to explain one’s most frightening and intimate problems to someone who may never look you in the eye, or ask a question not required by the computer program. Especially when that computer operator is frustrated because he or she is not familiar with the program, or because it is not working properly. How do you know if the diagnosis or treatment is going to be safe and effective under these circumstances?

Worse, how do you trust that the information entered into that computer is correct? I can’t tell you how often I have read reports of my office visits only to wonder whose record has been confused with mine. I have read “patient states” something I not only did not state, but that wasn’t true. I have read reports of findings of physical examinations that never took place….and also failed to accurately reflect my physical condition at the time. Yet in years past—even after computers were commonplace—when doctors simply dictated their reports of office visits the results were informative, correct, and usable. I know, because for years I used to type up those dictated reports, and saw letters of thanks from recipients like other physicians, insurance companies, and physical therapists who were able to understand and make use of them.  I even learned a lot of medicine from their logical presentation of cause, effect and treatment.

Even more important, however, is the effect of human touch: The caring hand on a shoulder while explaining a difficult prognosis; the gentle holding of the hand of a terrified patient. The healing effects of caring human touch cannot be measured, and certainly cannot be replaced by a machine of any kind.

I do not propose to take computers away from medical practice, but only that the computers not take the physician away from medical practice. We were intelligent enough to invent computers, and I would hope that we would be intelligent enough to discern the times when their data gathering and sorting capability can be used to best advantage, while the very human, intuitive and caring abilities of our physicians remain in the human realm where they are most effective. Perhaps then physician suicides might drop from more than 400 each year, and more brilliant young people might consider the medical field desirable.

 We need human physicians, because we are not robots.

robot doc


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THE SOUL’S MUSIC RESTORED

 

scenic pianoHuman beings have a wonderful gift that I firmly believe connects our spiritual nature to the source of its being. The ability to create beautiful sounds from our own throats, to use our brains to compose melodies and harmonies that become operas, concertos, requiems, ballets, and marches; to combine our voices in the multiple harmonies and rhythms of the choir, accompanied by instruments we have invented for that purpose, is beyond comprehension. The results are so pleasing to us that whether for a free concert or when having to pay a large price for tickets, we will gather together to enjoy this gift that speaks to our souls as a community, or we will listen to recordings by ourselves as we bask in the restoration and pleasure of the experience.

Many of us are drawn to a particular genre of music that has a greater capacity for energizing, calming, or healing that is special to our unique self. Maybe it has the ability to do all of this; perhaps it also becomes a comforting presence to the person who is alone with their joy, sorrow, or just with their thoughts. In any case, those for whom music is a vital part of their life enjoy a profound relationship with it, even if they only have the ability to listen with all their hearts and cannot produce the music itself.

For me, music has always been important. I am almost transported to a higher plane of being when listening to classical music, my favorite—especially to classical piano. Having played several instruments when I was younger, including piano, organ, violin and alto clarinet, I often found myself fingering the notes of a particularly moving or thunderous passage—sometimes even waving my arms in the fashion of a conductor as my entire body listened to, and was moved by, the music. Until it was not.

It has been more than twenty years since I could bear to listen to the classics. Listening to the music was not something I did passively; it could not be background for other activity. I had to stop and concentrate, to listen with my entire body and soul. The music demanded it. So as I grew older, and the disease processes that create my chronic pain grew worse and required all my energy to cope, I no longer had the ability to listen to the classics—especially the piano. It actually hurt, because those pathways of pleasure were now overcome by pathways of pain and illness. Instead of soothing, the music irritated inflamed nerves.

pain photo

 In my previous articles, however, one could follow the wonderful restoration of my ability to function physically under the dedicated care of a pain management physician. I have even regained the ability to work part time, and to function quite normally in taking care of myself. I have often remarked that my brain is not what it used to be, but I was beginning to feel more like myself. This has been an amazing journey; one that continually filled me with awe and gratitude for being given a second chance to live a productive life unbound by severe chronic pain.piano keys

In fact, in the past few weeks I have become aware of an additional blessing. I find myself, more and more often, listening to classical music and especially to classical piano. It has now even taken the place of the less demanding substitutes that occasionally accompanied my drive to work. I am able to listen at home now, giving the music my entire attention.   In other words, I am once again able to listen to “my” music with my body and soul, and to experience the healing and restoration, the uplifting resonances and the calming adagios that exemplify the genre.

I am so very grateful to the physician who continues to serve those with chronic pain despite the cultural unpopularity of that service, and who kept working with me until I regained my ability and determination to live. As a special and additional blessing, I now feel as though a missing piece of my soul has been restored by “my” music, and I am finally, wholly myself once more. And more than ever, I believe that music is one gift given to us that connects us spiritually with the source of our being,  and I again experience the connection, in gratitude.


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“ALTERNATIVE” VS. “SUPPLEMENTAL” PAIN CARE

The latest heresy propagated by the misguided War on Drugs, particularly the version that is an opiophobic war against pain patients and their physicians, is that engendered by both pop and professional psychology. In short, it is the claim that to control one’s own pain by controlling thought processes is a better alternative than pain medication for chronic pain. Thus, mental self-control is added to physical therapy, diet, and exercise, as purveyors of these so-called better methods hope to gain the income they saw going to legitimate, board certified pain management physicians who actually provide relief from pain. The heresy is that theirs is an alternative therapy, when in fact for far too many chronic pain patients it is at best a supplement to actual pain relief by medical methods.

Before addressing this heresy, allow me to outline my credentials for debunking it. For 46 years I have suffered from degenerative disc disease. At the present time, there is no part of my spine unaffected by this process, no part that fails to add to the pain. At four different places in my back and neck, there are outgrowths (stenosis, protruding disc material, arthritis and one spinal meningioma) intruding on the spinal cord itself, with resulting radicular pain, weakness in extremities, and the potential for paralysis. In addition, 14 years ago I was diagnosed with Type II Diabetes, with severe diabetic neuropathy. Walking produces paradoxical pain and numbness, often resulting in missteps and falling if I do not actually see where my feet are.

Because I have always been unable to take pain medications (as well as many other medications), early on I accepted the responsibility for dealing with my pain pretty much on my own. To the extent possible, I considered it a “mind over matter” situation and learned to compartmentalize the pain while I worked full time all those years, was divorced and learned to support myself, gained first a nursing certification and then a Ph.D.  While these “alternatives” to pain medication made life possible up to a point, it remained very difficult and the control was as often geared toward forcing myself to keep going as it was to training my mind away from the pain.

I held positions that were demanding and stressful, often working 60-70 hours a week and rarely getting more than 3-4 hours sleep because of the pain. As both a nurse and a professional social scientist, I was knowledgeable about the supplemental psychological and physical methods I was using. But no matter how well I used distraction, being useful, loving my job, and being positive; no matter how I accepted my pain as simply another part of my life and tried to minimize its presence in my thoughts and mind, it continued taking its toll on my body and my life. THESE SUPPLEMENTAL METHODS OF PAIN CONTROL WERE INSUFFICIENT, NEITHER REMOVING MY PAIN NOR REDUCING ITS EFFECTS ON MY BODY.

Three years ago, all the defects in my efforts to control chronic pain came to a devastating but inevitable concluding failure. The discs on either side of a lower thoracic vertebra “imploded”—displacing the vertebra, and creating scoliosis from that point upward in my spine. The pain, added to what I already suffered, was too excruciating for me to fight. Additionally, other disease processes were becoming worse from the long-term stress: my diabetes was out of control, I had cardiac problems, allergies, and severe gastric issues. I retired from full time work at the age of 72, and moved to a city where I hoped to find good medical care and a church family where I would feel at home. I did not think it would be for long, and often my pain was so exquisite, so unrelenting, that I prayed for the relief of death.

That, in summary, is the story of my life without pain medication. It was a long nightmare of having to give over so much of my personal energy to keeping pain levels manageable that I had nothing left for the responsibilities of any kind of family or personal life. Pain was the constant companion of my days and nights for so many years that I had forgotten many of the pleasures of a life free of pain. Don’t get me wrong—I am not looking for the reader’s sympathy. I am simply stating facts, not just for myself, but also for the millions of chronic pain sufferers in the USA who also live with untreated or undertreated chronic pain because of unjust and unreasonable regulations about what kind of treatment and how much of it they are allowed. Regulations too often created by people without the credentials or experience to understand the “unintended consequences” of their need to control a situation that has nothing to do with legitimate pain care, and everything to do with a dysfunctional understanding of addiction.

There is obviously more to my story, and that is because my selection of this city proved to be an excellent choice. Here, I was referred to a pain management physician with the skill, compassion and integrity to not only medically provide periods of full relief from my pain, but also to help me find a pain medication that I am able to tolerate. I now know with certainty, for the first time in my life, that the so-called “alternatives” to pain medication do not qualify for the term “alternative.” They simply are NOT EQUAL to the task of relieving severe, chronic, disabling pain that takes its toll on both mind and body. They can be excellent supplemental methods for maintenance of the effects of tolerable levels of pain (which differs in EACH AND EVERY patient, as do the effects of all forms of pain management) but they are no match for the pain suffered by those of us whose lives of debilitating chronic pain are defined by pain management or the lack thereof.


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‘TIS THE SEASON……..

little Who

 

It is once again the Christmas season—or Advent, to be accurate at the moment—and although I have avoided posting to this blog for some time now I would really love to write something relevant. But my inner voice asks: Relevant to whom?

Those for whom the pressing problem of the season is a warm place to sleep, and some food to quiet an empty stomach? They are certainly one of the reasons for the arrival of this Baby in a Manger.

The ever-increasing number of elderly orphans, especially those who lack financial resources for life necessities and medications, and who will be alone at Christmas? Yes, of course.

Refugees all over the world who have been driven from their homes, and separated from loved ones, because of hate, discrimination and war? Definitely.

Those who have been marginalized and discriminated against by institutionalized bigotry, white privilege, and the insidious lie of “color-blindness” until their frustration is at the breaking point? These, as well.

Unfortunately, I could go on and on. The list of ways in which humans deny or ignore the image of their Creator in each other is endless, sometimes almost evilly ingenious.

Perhaps, then, I could attempt to put a Christmas face on the debacle of our political system and the present electoral campaign? Frankly, this is much more difficult for me. I find it much easier to feel the Christmas spirit for those neglected and in need than for those who contribute on a daily basis to that sad situation.

Of course, as a social scientist I could write pages enumerating the evils of the system, with empirical evidence and professional objectivity. But this is not a professional research paper, and in truth I am far from objective about this subject. In fact, I am disillusioned, angry, humiliated, and absolutely broken-hearted that my country has become this spectacle of greed, ignorance, sociopathology, hatred, bigotry and downright evil.

That, of course, is primarily those who wish to be elected to public office, and whose desperate antics I have the misfortune to see every time I turn on my TV or my computer. But in the Real World, the vast majority of Americans are still the good, honest, hardworking and caring people that the average American has always been. Including—perhaps even more so—the average immigrants, present and past. Our ancestors. Those good people upon whose backs this country was built. (Ahh-did I hear the National Anthem playing somewhere?)

There, I have it. My Christmas spirit can be renewed in the lives and faces of my friends and neighbors, my colleagues and my students, my family near and far…..these, who continue to embody real Christian values and possess the humanity to live by them. These who still have empathy for the sick and unfortunate, and will do their part to help them even when they can least afford it. Who recognize the poor and helpless as brother and sister human beings, for whom this season brings to mind the fact that we worship a God who sent us a King in a manger, to remind us of what true leadership is all about, and to provide us with an example of what every Christian should aspire to in this world. Whose Son refused to sell his soul to the devil for power and wealth.

Yep. That is definitely the sound of angels that I hear.

Merry Christmas, everyone. Christ still lives and reigns within us. Alleluia!

nativity

 


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A Letter to Patients With Chronic Disease

What I wish every pain patient understood about working with their physicians. What Dr. Rob says certainly matches my experiences, and is very helpful.

EDS and Chronic Pain News & Info

A Letter to Patients With Chronic Disease by Dr. Rob Lamberts

This is a re-post of a wonderful essay from a few years ago that delves into the reasons for the lack of understanding and empathy between doctors and their patients with chronic illness.

Dr. Lamerts gives good advice for how we pain patients can approach our doctors to get them on our side, instead of alienating them.

Dear Patients: You have it very hard, much harder than most people understand.  Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. 

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