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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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PERSPECTIVES ON PAIN CARE PROVIDERS DAY

As I write this post, the date is February 1st. When I noted the date this morning, my reaction was “Finally! February is here. What a relief!” I surprised myself. The first 28 years of my life were spent in western New York State, so I can assure you that this is not my normal reaction to the first day of February – or any other day in February, for that matter. February was always the month when Seasonal Affective Disorder (SAD) reached its peak: Gray days, dirty gray snow, cold days and colder nights, chapped skin, shoveling snow day after day – by the second month of the year the reality of winter was enough to send me into at least a minor depression.

…Until recently. Chronic pain has for years held an even greater power in my life for bringing on depression, especially after a few long months of winter weather. However, once I had become convinced that my thought patterns and beliefs could actually make my pain even worse, I decided to try an experiment. Last year, I decided that instead of suffering through the blues of February – or grays, if you prefer – I would welcome the month as a certain sign that we were on the downside of winter, and better days were ahead.

That was actually true for me in several ways last year. I did concentrate on thinking positive thoughts about February, which was no small achievement. I also met my pain management physician that month, and had two epidural procedures which alleviated my pain enough to allow me to manage several other medical problems over the following months. I didn’t think any more about my experiment until this morning, when I surprised myself by welcoming the thought of February. My perspective has certainly changed.

All this soon led me to thoughts of chronic pain, and the Pain Care Providers Day campaign. I thought how over this past year I have watched and read about chronic pain patients who have joined their voices and efforts to bringing about national awareness of the hundreds of thousands of people who exist with daily, even constant, severe chronic pain. I thought of those professionals and clinical personnel who have joined to champion the cause of those people that they care for, day in and day out. And I remembered the families, and friends, and neighbors who join in to assist people who cannot always manage on their own, and who have also supported this campaign.

As I looked back over the year, I realized that attitudes are changing. Perspectives are changing. Many people who have been victimized by both their own bodies and by unreasonable laws and regulations regarding their care have refused to be labeled victims. They have found their voices, and are speaking out, demanding to be heard and treated fairly. And they are being supported by the voices and efforts of their caretakers.

Physicians are pushing pharmaceutical companies to produce medication that will not harm their patients. Medical societies are pushing for multidisciplinary approaches to treatment for chronic pain patients that will be more effective. During the month of September 2014 we celebrated Pain Awareness Month, and more people joined the efforts to bring new resources to the treatment of chronic pain.

So now, on March 20th, 2015, we will celebrate Pain Care Providers Day (PCPD).

What is this day all about?

It is definitely NOT about drugs. It’s not even about chronic pain patients, per se. It is about celebrating the steadfast and selfless gift of presence and help by all those who have cared for us all these years when we have generally been thought of as malingerers, hypochondriacs, drug seekers, or worse.

Admittedly, we chronic pain patients are not always easy to deal with. Sometimes it is difficult to discover what has caused our pain. Sometimes we are cranky, angry, depressed, uncooperative, or downright mean. Sometimes we are hopelessly fatalistic. Sometimes we are suicidal, because the pain and isolation is winning out over any potential for loving life. Yet our caretakers and providers are still there.

But there is hope—which for many of us, is an entirely new perspective.   Awareness is happening throughout the nation, thanks to the campaigns, and more changes of perspective are taking place in unique places. Some people are actually changing their opinions about pain care providers and their patients. Of course, it takes longer for government agencies to adjust their perspectives, but with all our voices together, we can and will be heard. And those who have cared for us will still be right there, working alongside of us. And on March 20th, the first day of Spring—a day of hope—we want to celebrate their presence and work in our lives, and what it has meant for us.

 For our pain care providers, and for those who will join their ranks in future generations, I offer the following statement in support of these achievements, and these changes in perspective. It was written by Henri J. M. Nouwen, and I have borrowed it from his delightful book Bread for the Journey:

 Joy is hidden in compassion. The word compassion literally means “to suffer with.” It seems quite unlikely that suffering with another person would bring joy. Yet being with a person in pain, offering simple presence to someone in despair, sharing with a friend times of confusion and uncertainty…such experiences can bring us deep joy. Not happiness, not excitement, not great satisfaction, but the quiet joy of being there for someone else and living in deep solidarity with our brothers and sisters in this human family. Often this is a solidarity in weakness, in brokenness, in woundedness, but it leads us to the center of joy, which is sharing our humanity with others.

 

Please join us in celebrating Pain Care Providers Day on March 20th. Tell your friends and neighbors, and encourage leaders to proclaim the day. It is our day to share our humanity with others. It can be a day of joy.

justinhighrock