Says Who??

Verstehen, through shared perspectives


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AN UPDATE FOR FAMILY, FRIENDS, AND THE MERELY CURIOUS

 

For months, now, I have neglected to write or keep up with you. There have been several reasons for this—ironically, none of them due to continued chronic pain. I no sooner reached the point of finally having my 45-year battle with chronic back, neck, shoulders, hands and feet pain under control, than I developed a cardiac problem serious enough to make normal functioning very difficult. At the same time, I had taken on three adjunct courses a semester in the mistaken belief that my new pain-free status would allow more activity. To make a long story short, my intolerance for many medications complicated everything, cost me a fortune at the pharmacy, and greatly reduced my newfound activity tolerance.   It has been one hellacious year, in other words.

Make no mistake. I still love teaching, and I still found that the time spent in the classroom or in my office with students on any given day was the best antidote to pain, and now also to cardiac problems and their side effects. It was only that the long hours of preparation and grading papers, along with the difficulties of getting around the university with a backpack filled with books, etc., rapidly undid all the good of the time spent in the classroom. Not that time spent in the classroom wasn’t worth it—but over time I developed a roller-coaster life with all the emotional and physical ups and downs.

Additionally, the rapidly increasing cost of living, plus my medical costs, had finally totally depleted my savings. Obviously, my social security and wages from being an adjunct were not going to suffice, and now the summer break without any adjunct income was looming. Should anyone ever question the fuel driving the anxiety and chronic pain cycle, I can document it, and add that the combination doesn’t do much for cardiac problems, either. By the end of the second semester I began having chronic pain from multiple arthritis sites. Thankfully, none of the nerve pain has recurred. But I knew it was time to look for more work for additional income, nevertheless.

I have always loved that verse from the Psalms that says “Weeping may endure for a night, but joy comes in the morning.” So many times past, deep into the darkness of whatever crisis was facing me, that verse would eventually be brought to my attention. And when it was, the promised joy and relief from the crisis would begin and move steadily toward resolution. Always. And it has happened again.

Strangely—perhaps even ironically—it was not my PhD in Sociology that was the sole credential for my new part time job. Most of you know how I loved working in medicine and finally being a nurse, before going back to school for my Sociology degree. It was that, and probably my experience with chronic pain as both advocate for patients and a patient myself, that resulted in my new job. For the past six weeks, I have been truly blessed to work 4 days a week in a pain management clinic. From day one, I have felt the joy and freedom of doing what I have always loved best, along with the capacity to use the sociological skills and information gained later in life. I do not have the ability to explain how richly this fulfillment has affected my life, including my physical abilities. I truly believe that every day of my life, every experience, has brought me to this time and place. And the joy is not limited to the immediate experience of interacting with the patients I have already begun to love, but it extends around the clock, and through the week. My exercise tolerance has improved; my arthritis pain has subsided; and my blood sugar is manageable again after a long period of ups and downs. My cardiac problems are no longer debilitating, and I rest better at night. Despite the uncertainty of life in our country, especially for pain patients and others who are most vulnerable, I retain the joy of this new situation and all that it means to me.

My gratitude for this blessed gift is pre-ordained, of course. My advocacy for pain patients, and for those pain management physicians who daily manage the tightrope walk between patient need and over-reaching government regulations, will be taking on a new life. Expect new articles on this site about the real history of drug abuse, pain and addiction in the future. Expect new energy to keep up with what is happening in the failed War on Drugs, and the failing efforts to kick-start it again with the scare-mongering about the prescription opioid epidemic (which, I point out frequently, is deliberately worded to look like it is caused by a. doctors, and/or b. pain patients.)

While I have not specifically stated it, I would like to assert at this point that there is an element to pain management that is sometimes ignored, sometimes over-advertised as a panacea for all ills, and sometimes actually realized in the lives of those who believe. I do believe, from vast experience, that God answers prayer—even when the answer is a firm “no.” I also believe that what we experience in life, both positive and negative, are the true elements of living that make us mature and strong, or they break us. Most of the time, that choice is our own. Especially when God says no.   He said no to me a lot, yet I have been privileged to enjoy incredible blessings, including healing from physical and emotional trauma, and experiences that have enriched my life beyond belief. I would not overlook the role of faith in healing, in guidance through life experiences, or in provision for meaningful relationships and work.

Much love and blessings to you all, and may your walk through life provide you with blessings, rich relationships, and purposeful work. And may your relationship with your God always guide you through it.

Peace,

Marylee


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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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KALAHARI

The Kalahari Desert of Southern Africa, once home to the beautiful and graceful little San people (aka Bushmen), can be a place of miracles. Springtime, for example, brings an explosion of beauty and color as far as the eye can see, in the form of a multi-colored blanket of cosmos flowers. It is breathtaking. All too soon, though, the landscape returns to the scrub and sand vista that appears hostile to life itself.

Twenty-five years ago, in the first months of my dissertation research, I was privileged to witness another Kalahari event. That is, it did take place in the Kalahari, and the desert contributed its own flavor to the experience. But it was actually more of a cosmic phenomenon with a profound impact that resounded within my personal universe–whih still resonates with the memory.

It occurred when I was driving south along a straight highway through the desert one late afternoon, still far from my destination and already hours on the road for the day. The landscape, flat to the horizon in every direction, was monotonous to the point of being mesmerizing. At first it was like being in an infinity pool, where one goes through the effort of forward motion but nothing changes. Then it started to feel like a still life painting, with car and driver captured in place at a moment in time.

As I drove, I was completely absorbed by radio reports of one of the most violent days in the country since my arrival. In future months I would never be able to reach the point of sublimating my response to the violence –“violence” being euphemistically referred to by South African press as “unrest”—and this early in my visit each occurrence was a fresh wound to my soul. My arrival in the country had almost coincided with P.W. Botha’s stroke, which would ultimately allow his cabinet to oust him from power. Long-term leadership of the nation was as yet unresolved; the population seemed to alternate between holding its breath in fear of–or in anticipation of–the future, and ever-worsening violent responses to the present.

The juxtaposition of areas of abject poverty literally in the shadow of diamond and gold mine infrastructures mirrored evidence of immense wealth, surrounded by acres and acres of homelands and townships where children were often malnourished and undereducated (if educated at all) and water supplies insufficient and far between. Yet within these extremes, and despite the rising violence, life went on. The sun set, the moon rose, and another cycle of life would begin. Children laughed and played when they could. In the cities, people shopped, went to the theatre, danced, and met in each other’s homes for meals. Except when it got too risky for a time, then they could not.scan24
This photo, taken not long after my desert experience, recalls a day of escape into a kind of normality. I refer to my “Margaret Mead mode” when showing it. We were near a village in the mountains on the Swaziland border where the World Vision team had taken me to view one of their projects.

There was much laughter, exchange of ideas, and purpose to that day, unlike the day that I drove all alone through the desert and violence erupted in a world I could not at that point see. Now, even in writing, I feel the jarring effect of pulling out of my thoughts about the seemingly insurmountable troubles of South Africa, to look outward at the bleak, unchanging, flat and seemingly unending desert before me, where I was racing down the road on autopilot.

I was forced out of my thoughts when out of nowhere a huge 18-wheeler blared past me, going much faster than the 120kph speed limit I was observing. At first, the tractor trailer’s speed and noise seemed to emphasize my sense of immobility; of standing still in an unchanging environment. Then the car rocked in the afterwash of air from the truck, and I snapped out of my fugue state to look around me. What I saw was exquisite, awe-inspiring and unforgettable.

Out of my right window I saw a huge ball of sun just beginning to reach for the horizon. The colors of sunset were still to come, but the sky had darkened just enough to make the sight memorably impressive by itself.

sunset over desert

Then I looked to the left, where a huge, bright “super moon” had just cleared the eastern horizon at virtually the same height as the opposite sun.

 desert moon

I stopped the car and got out with my camera, which to my eternal frustration would remain useless. This was one photo that would not come together; I could not capture in one frame the inexplicable coincidence of sun and moon, seemingly of equal size and brightness, facing one another across a flat, featureless desert.

I stretched out each arm in the direction of a heavenly body. I looked first east, then west, and back again. I slowly turned all the way around, absorbing the sight with eyes and heart; then I did it again. I actually pinched myself, to make sure I had not fallen asleep, or worse, had some psychotic break. I am rarely rendered speechless, but I still simply do not have words to describe this surreal experience, and its effect on me. I was alone beside the highway in the middle of a desert in a strange land, and I was embraced by both sun and moon, awash in natural brightness and awed by the vastness of a reality I could not begin to take in and could not even record.

Eventually, of course, the sun met the horizon and the splendid hues of sunset began to stain the western sky, while the moon, becoming smaller with passing time, rose higher in the eastern sky. I returned to the car and headed on toward my destination, humbled yet comforted by the reminder of my minuscule presence in the universe. Later, others would affirm the reality of this rare phenomenon but I met no one else who had actually experienced it.

Over the past quarter of a century and several spiritual desert experiences later, there have been times when I was reminded of that event. Sometimes the memory returns on its own at appropriate moments, to revitalize my energies when I am both immobilized by failure to make forward progress in a bleak environment and spiritually wounded by events of the day. Other times I have needed the equivalent of a speeding 18-wheeler blasting by to snap me out of my preoccupation with the woes of the present, and restore my equilibrium. In either case, while regaining my perspective I have had to absorb the experience, learn from it, and begin to move forward. But I have treasured those occasions when I have revisited that Kalahari experience, when awe of the beauty and vastness of the universe restored calm and peace to my soul.