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Verstehen, through shared perspectives


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THE PROBLEM OF PAIN

In his 1940 publication The Problem of Pain[i], C. S. Lewis includes the following paragraph:

The Christian doctrine of suffering explains, I believe, a very curious fact about the world we live in. The settled happiness and security which we all desire, God withholds from us by the very nature of the world: but joy, pleasure, and merriment, He has scattered broadcast. We are never safe, but we have plenty of fun, and some ecstasy. It is not hard to see why. The security we crave would teach us to rest our hearts in this world and oppose an obstacle to our return to God: a few moments of happy love, a landscape, a symphony, a merry meeting with our friends…..have no such tendency. Our Father refreshes us on the journey with some pleasant inns, but will not encourage us to mistake them for home.

While it is apparent that Lewis was writing primarily about the emotional pain and grief that we experience in life, he was also a chronic pain sufferer. For the majority of today’s chronic pain patients—including myself—the pain waxes and wanes, sometimes giving us a day or more of blessed freedom from pain, at other times causing us to simply curl up in bed and pray for the pain to go away. For those who are able to find the strength to live and be productive despite the pain, many are able to do so because they have been given sufficient moral support, alternative treatments, and pain medications that take the edge off the pain for a time.

It is so much easier to see those bright moments, those “pleasant inns” when everything is working and life is free of pain—whether physical, emotional, or psychological. We are able to enjoy the company of friends; to appreciate the beauty of a flock of geese in flight; to simply breathe in the pleasure of living. The future seems brighter, laughter comes easily, and one feels at home in the world again.

But even as Lewis warns that this happiness is not “home,” our own nature is to begin to fear the return of the pain; to want to do anything possible to ward off having to cope in the loneliness of being that is centered wholly on dealing with that enormous threat to well-being. To long for the freedom from this life-robbing, happiness-destroying monstrous condition that plagues our days and our nights.

We would do anything, give anything, to return to the easier state of merely coping, when all the treatments and medications make life at least possible, and occasionally happy. We begin to fear the return of pain so much that at the slightest threat of pain, we return to the medication that gives us relief and hope; we do this with our physician’s blessings so long as we do not abuse the prescribed rules of when, and how much, to use.

This is actually rational: to relieve the pain before it takes over the mind and body just makes sense, and prevents much worse episodes of pain with devastating effects on the physical and mental condition of the patient. To lengthen the periods of less pain and shorten the periods of intense pain is the goal of pain management for most patients.

However, that goal has been usurped and denied by federal and state governments who want us to believe that the War on Drugs is best served by taking pain relieving medications from the people who need it most, in order to punish the people who sell illegal drugs and those who abuse legal or illegal drugs. We are not impressed with this kind of logic.

A couple of weeks ago, as I entered the waiting area of my pharmacy, the only other occupant spoke up once I was settled in and inquired if I noticed how cold it was in the building. I noted that he appeared to be my age or younger, was very thin, wearing a light jacket on a typical hot day in this region. I replied that I had just come from an air conditioned car, so had not noticed the temperature in the building yet. He went on to tell me that he was a cancer patient, and that two years previously he was told he would probably not live more than two years.

In the past three months he had lost 60 pounds. He was not allowed to have his opioid pain medication anymore because he had two alternative pain medications, which were no longer helping him.  He went on about his wife who was also very ill, and how difficult it was to take care of himself and his wife with no help. Suddenly he bent over, head in his hands, and began to sob. “I just wish that someone would put me out of my misery,” he almost whispered.

I moved over to the seat next to him and began to gently rub his shoulders (with his permission). I didn’t talk, because I was too overwhelmed with anger and pain for this man’s unnecessary suffering.The changes in the opioid regulations are egregious enough when applied to pain patients, but since when were cancer patients no longer exempt from this kind of torture? 

I listened to him, and was sorely tempted to give him my pain medication—but that would not help anyone and could potentially do great harm. So I seethed with frustration at my inability to do anything to ease his pain, and recalled the days in the not so distant past when I suffered those same feelings, when I was unable to take medication for the chronic pain that had finally become unbearable and disabling. (My subsequent encounter with a pain management specialist, resulting in my return to the “real” world, has been written elsewhere on this site).

Eventually his tears ceased, and he was notified that his meds were ready to pick up. He left, and I was alone with my anger, and my guilt for no longer suffering as this stranger suffered. Probably, I had never suffered to the extent that he suffered, because pain is not the same for every patient, nor is it relieved in the same way for every patient. Plus, I only had myself to care for, without the additional pain of needing to care for a loved one.

I swung between the longing to run out of the pharmacy and shout my anger and frustration to the world, and the dark experience of powerlessness in the face of known legislative deafness and blindness.  In such a dark mood, I had no expectation of experiencing the opportunity for a pleasant, albeit brief, stay in one of Lewis’ “pleasant inns.” In truth, I probably would have snarled at anyone who suggested that I look for the brighter side of life.

Of course, the next day I was back at the university, teaching my classes and reveling in the sheer pleasure of the gift of returned productivity that allowed me to enjoy this beloved activity. As time went by, I was reminded that this joy was a mere stop in the road trip of my life; I would not be able to continue doing it for many years, or even months, more.

I thanked God for the reminder that I could not stay in this happy, even joyful state forever. There are still battles over injustices in our world that must be dealt with, and times of personal pain and darkness. They are just as necessary as the joyful times, if we are to be responsible, productive citizens of our world.  May we not forget to appreciate the precious times of joy because of the problem of pain. Nor let us forget the needs of the oppressed and suffering while we rest in “pleasant inns.”

 [i] Lewis, C.S. The Problem of Pain 1940 Centenary Press, London

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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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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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CAN RELIGION BECOME EVIL?

love others

My friend had joined me in the adjunct professor’s office when I finished my class, and because the day’s lesson had been on anthropology and religions, we were discussing religion. My friend is an atheist, so the discussion not only required a lot of honesty and thought from both of us, but it also became deeply rooted in my thoughts as a result. It was no surprise that when pain awakened me during the night, as it has so often done, that my friend’s final question not only returned to mind, but was interwoven with my ongoing concerns about the disruptive and heartbreaking laws and actions that have so negatively affected physicians and their patients.

It was a long night. The pain was intense and unforgiving. I thought that there is no more “alone” a person can be than when being alone and in pain. Especially if nothing can be done to alleviate the pain. In my case, it is because my body will not tolerate many medications, including pain medications. But for so many others it is because an unthinking and unfeeling state and/or federal body of lawmakers has taken their medication from them. Some lawmakers have gone so far as to falsely claim that chronic pain patients are the reason that addictions and illegal drug-induced deaths occur*. The majority of these lawmakers claim to have made their decisions in the name of Christianity, and/or morality. Thinking about all this, I again considered the final question my friend put to me:

 CAN RELIGION BE EVIL?

 It is a legitimate question. Jesus was put to death, in the name of religion. The decision was made by a government official under intense pressure from religious leadership – the separation of church and state is not always clean or clear! Again, the apartheid laws of South Africa were based on religious beliefs and carried out by members of the most conservative and pious of denominations, while being upheld by churches throughout the country. Islamic followers have also left bloodshed in their wake since the Prophet died, and ISIS makes religious claims for their terrorism. And I haven’t even scratched the surface of the harm done to humanity in the name of religion. On the other hand, Christians, Muslims, and members of other faiths have spoken and fought against these evils, and lived lives that more fully represented the tenets of their faiths.

There is also the emotional and psychological harm done in the name of religion. On the first Mother’s Day after my infant son died, which happened to be the first anniversary of his birth and death, my own father announced from his pulpit that God had taken my son because I had married a divorced man. I left the church—and the Church–that day, 52 years ago, swearing never to give my heart and work to another church. It was not God I was mad at, it was the Church. I had been both beneficiary and victim of its teachings my entire life, but uneducated as I was at the time, I still was able to see organized religion as a human construction, using the power of the name of the Creator to manipulate and control entire populations to submit to the will of its’ very human membership. It took 51 years to the very day for me to finally give up that resolve, when I was confirmed into a church that not only accepted me as I was, but has a membership that loves and cares for each other and our community, living as best it can the highest commandments: “Love the Lord your God with all your heart, ….and love your neighbor as yourself.”

So today I can say from the knowledge and experience of an entire, long life lived observing, loving and hating religion–while remembering the reason for the religion–gave me, among other really great truths, this understanding shared with my friend: Can religion be evil?   No, my friend, nor can it by itself be good.   Just as its human members have the ability to choose whether they will do good or evil, so do we choose whether to use our religion and our beliefs for good or for evil. I suppose the litmus test would then be the two commandments quoted above.

Which brings me back to my lonely and painful vigil of the night. Actually, I realized I was not alone. My thoughts—my very soul—amplified my own pain alongside the hundreds and thousands of pain patients sharing my misery, who might have been sleeping relatively comfortably had they been allowed their medications. It would do me no good to go to the streets for illegal medications, but my heart broke for those who that very moment were deciding to do so–the very law intended to end illegal drug use actually making criminals out of law-abiding citizens. I also hurt for those physicians who, at that same dark hour, might be considering suicide because of a life ruined by the harassment of a law enforcement chain of events that considers them “guilty until proven innocent.”

So, in the dark with my physical and emotional pain and in the awareness of a company of fellow sufferers, I prayed for us all. And especially for those who take it upon themselves to decide to use religion and their “moral” values to make everyone live by their very low standards, no matter who it kills.

“Low standards?” you say? Yes. Low standards. Slash and burn is the low road. Restore and rebuild in the name of the Creator is a much higher road.

 hands, heart

*I can say that this is a false claim because drugs and alcohol have been used by almost every culture as far back in history as we can document. Drugs had both religious and recreational purposes., and still do in many cultures. Up until recent history, most people did not live long enough to acquire the long-term chronic pain suffered by the majority of such patients today. Today’s chronic pain patients are not the cause of the problem.