Says Who??

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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“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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OPEN LETTER TO SEN. RAND PAUL

Senator, I am both offended and appalled by your statement that if I should “hop out of my truck and walk away” I am gaming the system– obviously not disabled.  I am 74 years old.  I suffer from degenerative disc disease, severe arthritis and stenosis in my back; cardiac disease; asthma; and diabetes.  The disc disease was diagnosed 45 years ago, and is often quite disabling.  But I worked full time up until two years ago, when I retired.  I still work as an adjunct professor when I am able.  I drive, shop, and attend church regularly.  I see my Pain Management physician on a regular basis.  I do daily physical therapy, and work out in a fitness center at least three times a week.  I CANNOT TOLERATE OPIOIDS OR NSAIDS, so it is necessary for me to keep as active as possible so that minimal treatment will at least take the edge off my pain.  In addition to the back and neck pain, I suffer peripheral neuropathy in my hands and feet.  Many nights I cry myself to sleep because of the pain — if I sleep at all.  Last year, for the first time, I obtained a handicapped placard for my car because my breathing problems, added to my back pain, make it difficult to deal with carrying anything at all and walk.  I don’t feel at all guilty about using a benefit my doctor thought I would have had for years already.  And I am not lazy – I would undoubtedly continue to teach even if I didn’t need the money for medications Medicare D won’t pay for, and to buy groceries.  Social security definitely does not cover rent, utilities, copays, groceries, car insurance and maintenance, medicare deductions and supplemental insurance.  In fact, after rent, utilities and insurances it is gone.  So while I know, as do others, that there is always someone gaming the system, that is a far sight from meaning that just because I do not look disabled (it is hard to keep a job that way) I could not be disabled.  Many, many legitimate disabilities don’t reveal themselves outwardly.  And chronic pain patients are NOT the cause of the opioid epidemic – but that’s another complaint that I won’t get into now.  For now, just know that you have lost my vote and I am deeply disappointed in you as a physician and so-called leader.

http://www.washingtonpost.com/blogs/fact-checker/wp/2015/01/23/rand-pauls-claim-that-over-half-of-the-people-on-disability-are-either-anxious-or-their-back-hurts/

.RAND PAUL ARTICLE


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THINGS I LEARNED FROM MY MOTHER

Mom & me 6-14-42For several weeks now, in that half-dream state immediately before awakening, I have had a powerfully strong sense of being in the bedroom I occupied in my teens, and of the presence of my mother downstairs, preparing the family for the day. Other times there is only the sense of her presence, but always the awareness of loss as I gradually come awake to the reality of my first floor bedroom in my ADA-approved apartment. Mom has been gone since her 80th birthday in 1992, but I still sometimes catch myself reaching for the phone, to share with her some aspect of my day. Today being Mother’s Day in 2015, I would like to share some things remembered and learned from her, and if no one reads it but me, I believe she will know they have been shared, and why.

As mother and daughter, we could not have been less alike. She was a petite 5’2”, beautiful, blonde, blue-eyed and graceful. (Well, I do have blue eyes). She was a pastor’s wife, and later an ordained minister in her own right. She exemplified the term “Southern Lady,” in all the most positive connotations of that title.   She was dignified, never given to excesses of emotional expression; yet, her family and friends knew beyond doubt how much she loved them. When she was afraid or anxious, only her closest family recognized the fact by a certain set of her jaw and stiffness in her already ever-straight posture.

She was a good woman who always had room for more in her home and at her table. She quietly and privately helped neighbors and church members during hard times, whether with money, food, childcare or comfort in times of sorrow. She sometimes took me with her when she went to clean and prepare a home for the return of a hospitalized mother. She accepted people as they were, and showed no difference between people of color and those lacking it; no difference between church members and non-believers; no differences between rich and poor.

She was a survivor of the highest order. The ordeals of her childhood and early life are known only to few, but chronic illness with severe episodes of various disorders plagued her later life as well. To these, as well as the normal trials and hurdles we all face in life, she had the same attitude: a simple but unchallengeable optimism and faith that she would get through them.

I never once heard her lie about her age. While not denying the problems of aging, she welcomed each birthday as evidence of her success in moving forward with her life. She remained beautiful throughout her life, inside and out.

Bill & me with Mom at the hospice late 1991

Bill & me with Mom at the hospice late 1991

I have often made the statement “I inherited nothing from my mother” with deep regret. I don’t look like her or act like her, and have even been asked if I was adopted. That is why today I write these things, because over the course of these past few weeks since I published my last blog recounting the Mother’s Day traumas that so profoundly affected me a half-century ago, (https://maryleejames.com/2015/04/11/can-relion-become-evil/ ) in experiencing the sense of her presence I have come to realize that while we often struggled over what she tried to teach me in words, she taught me each and every day by being the person that she was.

I wondered where I learned tolerance, care for those in need, hospitality, survivorship. I wondered where my deep faith originated, given my antipathy toward the church. I have been so blinded by not looking like or acting the “Lady” like my mother, I completely failed to realize the wealth of understanding and caring she bequeathed me by living out her beliefs in front of me, consistently, every day.

The arrival of “Mother’s Day” has been a painful reminder to me of loss for half a century: the death of my son, the betrayal of my father, the later loss of my mother.   But today is a new day, and a new celebration.

Today is the first anniversary of my confirmation and acceptance in my church, where I love and am loved in return. I did not avoid attending church, but rather arrived in pleasant anticipation of a new joy to give a triumphant balance to my sorrow. I was not disappointed.

 Today is Mother’s Day. Thank you, Mom, for all you taught me about what is really important in life. Thanks for always loving me. Thanks for giving me the courage to face life in all its phases, and to appreciate all its goodness. Thanks for your presence these past weeks, when I needed to remember that I really am your daughter, and always will be.

Rev. Veralee Bryson Massey 1912-1992 Beloved Wife, Mother and Grndmother

Rev. Veralee Bryson Massey
1912-1992
Beloved Wife, Mother and Grndmother