Says Who??

Verstehen, through shared perspectives


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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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WHY I WOULD SUPPORT NEEDLE EXCHANGE PROGRAMS

syringes“I don’t understand. Why would you, with all your experience and training, vote for a needle exchange program that supports the habits of drug users?” Her question was not rhetorical. Her face flushed with emotion, angry tears in her eyes, she radiated the frustration behind her outburst. Though the need for answers was obviously deep, she was too overwhelmed to wait through any discussion and stormed out of the room.

I fully understood her point of view, as well as her expectation that I should know better than to entertain what she saw as a completely irresponsible position, counter to all that I should know. But it was precisely my experience, as well as all my education and training, that over the years had brought me slowly but convincingly toward my present convictions on the subject. Like many of us, she may have had close and painful experiences with the devastating results of drug abuse, and with addiction. She may even have taken courses where professors taught the evils of drug use with passion, hoping to spare their young charges the life changing downward spiral of drug use. Or, she could easily be a social worker, or health care provider, daily living with the emotional draining and burnout of working with abusers and addicts. Who would blame her for her perspective on the subject? As I often tell my students, where we stand on a given issue depends on where we stand in life. Experience is valid; it is real. With social problems, however, it just can’t be generalized to explain the whole issue.

Without comprehending the whole issue, we fail to take other valid points into our understanding. And without those other valid points, we make decisions that are almost guaranteed to produce negative unintended consequences.

What are some of those other valid points?

  1. Drug abusers use and share dirty needles. This leads quickly and devastatingly to increased numbers of diseases, primarily HIV and Hepatitis C. Even if only drug users were to be affected, the incidence of disease could reach epidemic proportions.
  2. When users respond to and comply with the regulations of a needle exchange program, they can be tested for HIV and HepC, and immediate treatment begun. The cost of a needle exchange program is high, and the additional cost of treating one HIV patient could be as high as $100,000. There will be more than one patient. This is a commitment of both financial and emotional proportions that is, and should be, taken seriously by any community.
  3. The cost of not doing it is exponentially higher. First, an untreated HIV victim is likely to progress into full-blown AIDS. THE COST OF TREATING ONE AIDS PATIENT FROM THE TIME OF DIAGNOSIS TO DEATH IS, ON AVERAGE, ONE MILLION DOLLARS. Second, that untreated carrier of HIV and/or HepC is eventually going to infect any number of others in a variety of ways: Family, sex partners, healthcare workers, First Responders, law enforcement officers, good Samaritans…all are at risk. They are not the limit, however. And each one infected is going to generate costs of $100,000 to $1,000,000. The financial costs do not even begin to quantify the emotional and productivity costs to everyone from family to the entire community.

In other words, no matter the cost of the program, the cost of NOT having the program in the presence of a proven epidemic is incredibly higher!

Given #s 1-3, we have only looked at the actual costs of having, or not having, a needle exchange program. But what about the perspective of those who resent what they see as a moral, or an ethical, objection to “helping” drug abusers and addicts?

To this, I would answer first of all that the issue is NOT only about drug addicts. IT IS A PUBLIC HEALTH ISSUE. It is simply not rational to fail to protect our families, neighbors, public servants and health care workers because of our antipathy toward ANY one group of people, no matter how deeply that antipathy is grounded in our being.

Second, I would remind those of us who claim to be Christians, that–all appearances to the contrary–these abusers and addicts are still human beings. Once, many were teenagers or young adults who in the blissful ignorance of their mortality succumbed to the desire for the drug-induced high, the shared forbidden experience with like-minded peers.

Others were veterans, returning with dependencies or addictions already in place as one of the costs of defending our rights to live in freedom. Still others began as patients, some who were denied proper medication and sufficient care by our laws; others who for any number of reasons (rational or irrational) took to the streets when their increased tolerance for drugs failed to meet their need for them.

And finally, the fact is that addiction is not something anyone deliberately chooses for their life. No one looks forward to that relaxing drink after a hard day at work, or even a drug-induced escape from the stresses of life, believing that one day in the future they will be a slave to a substance that no longer provides these things, but instead has become a painful, frightening and life-threatening craving, constantly demanding to be satisfied. Instead, we either say “I can’t handle [the substance]” and leave it alone; or we believe that “I can handle it,” and take our chances.

Many, in fact, may be able to handle it better than others. However, no one is fully immune from potentially developing the disease of addiction. We are learning more about risk factors on almost a daily basis, but we still cannot predict with certainty who will develop addiction.

The disease is one in which the reward center of the brain runs amok, refusing to turn off when the need for the reward is satisfied.  Aside from he repeated use of the “addicting” drug, there are risk factors:

1.  Genetic factors actually account for about half of the likelihood that an individual will develop addiction.

2. Environmental factors (i.e. where and with whom do you live and work) are influential.  Unstable social supports and problems in interpersonal relationships affect the risk.

3.  Individual resiliencies (through parenting or later life experiences) are important.

4.  Culture also plays a role, as does exposure to trauma or stressors.

Also at risk are those who suffer from chronic disease, depression, or who feel themselves alone in the world–that no one cares if they live or die.

We may never eradicate drug abuse. That is no excuse for refusing to accept the personal and financial responsibilities for changing our perspectives about those who become victims of it.

What have we got to lose by changing the ways we think about this issue and working to alleviate it? By helping users and addicts to stay alive long enough to be helped and encouraged onto a pathway out of active addiction? In our thousands of years of civilization, we certainly haven’t accomplished much with our old ways of attempted control of drug abuse. I believe it is worth trying, worth the effort to erase the stigma of addiction and restoring the will to change that must happen before an addict can fight their addiction.

After all, when a person repeats the same ineffective activity over and over, expecting a different and positive result, has this not become one definition of insanity? Haven’t we criminalized the disease of drug addiction long enough? Don’t we need to stop the insanity?  Dealing in a positive manner with addicts early enough has the potential to lower the rate of addiction that eventually leads to serious criminal activity in order to feed the addiction. Must we simply stand by and watch this happen? Programs like needle exchange and early testing in clinics don’t increase the problem. They are the only thing proven useful so far in decreasing the infectious diseases, the illegal drug use, and the consequent costs to the community.

I choose, however, to see this not as a dilemma of abandoning a moral issue for a practical one, but rather the blessing of making the right choices, for all the right reasons.

Reference for the risk factors and definition of addiction:

http;//www.asam.org/for-the-public/definition-of-addiction

Other Resources: 

http://www.cdc.gov/IDU/facts/AED_IDU_SYR.pdf

http://hcvadvocate.org/hepatitis/hepC/needle_exchange.html


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EXPECTATIONS: Helpful and Otherwise

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Overheard in a college hallway: “I am who I am! I cannot be responsible for his expectations of me.”

The tone of voice was stressed, angry. The speaker was obviously struggling in some relationship where she felt the pain of believing she was expected to measure up to some standard with which she did not agree, or believed she could not meet. Her anger at not being accepted for that of which she felt capable seemed fed by her guilt that she had not measured up to the standards of someone important to her.

Or, was I projecting? Was I reading too much into a simple declaration, simply because it resonated so deeply? Who among us has not at some time felt the pangs of inadequacy, having somehow failed to be the person that a parent, teacher, friend or spouse thought us to be? More important, who of us is not guilty of verbally projecting our expectations on another in a judgmental fashion, capable of stripping the other of self-confidence and a sense of belonging.

Strange Family

Strange Family

As the Academic Dean of a small college in an rural area where students received a suboptimal education, as both student and faculty advocate I was often called upon to mediate the issues arising when faculty from more cosmopolitan backgrounds failed to recognize the intelligence and potential of their students, judging them only on their failure to have been adequately prepared for college level work. Faculty would often disparage the students publically, claiming they would not work, could not learn, and should not be in college. Their expectations of the students were as low as their claims, and the relationships between those faculty and their students were broken and painful. Neither group expected anything good to come from the other.unhappy 1

Yet my own experience with these students was that on the whole (of course there were exceptions – there always are) the more I expected from my students and the more I recognized their exceptional qualities, the harder they worked and the more they succeeded. Further, they returned my love and respect for them, and for each other. The same was true for my students in Africa, as well as for my students in a large city-based university.

The principle, I believe, crosses cultures and generations. I first heard it stated from a young OB-GYN physician who had been charged with overseeing residents, interns and patients in a central city hospital clinic. I had the privilege of working for him as he changed the appearance, the attitudes, and the quality of care at that clinic. Where it had been said patients were “herded like cattle” into the clinic area itself, and then into exam rooms where they were prodded, talked about over their heads between the teaching and learning physicians as though the patient was a dumb animal, where the environment itself was dirty and depressing—there was change. In an attractive, welcoming environment where every patient was treated as well as paying patients in a private doctor’s office, we were able to observe the change from surly, quarrelsome and often unwashed patients to patients who were no different from those in any doctor’s office, where they trusted their caregivers and returned the respect they were given.

What that young physician believed and lived by, and helped everyone around him to emulate, was the statement he always made: “People will respect themselves and act accordingly if they are treated with respect and dignity.” Most did just that.

What I told my faculty members was “These students will live up to—or DOWN to—your expectations. Either outcome will be elicited by your treatment of them.”

Expectations make us or break us. Expressed in love as realistic possibilities that honor and dignify the humanity of the other, they can inspire. Expressed as a judgment of the failures of the other, or as a goal absolutely not in accord with the dreams and goals of the other, they are destructive. And that includes the expectations we have of ourselves.

self-confidence


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PONDERINGS ON THE FIRST YEAR OF MY SECOND CHANCE AT LIFE

justinhighrockGlancing over the titles of the posts in this blog site since it began just over a year ago, I am once again amazed at where my journey has taken me. Before it began, when I no longer had the will to keep fighting the illness and pain, I thought my life was (finally) over. Pain/medical management, along with an ever-expanding group of loving friends and the patience of an understanding God, restored not only my will but also my ability to rejoin the human race. I am not the same person I was before, but then who of us can claim to be the same as our younger selves?

First of all, for example, I had to adjust to the “new normal.” It was important to regain my ability to take care of myself, while also accepting that I was still somewhat limited, physically and mentally. I read an article recently about chronic pain resulting in a loss of gray matter in the brain on an annual basis, exceeding by at least 3 times the average for a healthy aging person. Sometimes I am actually aware of my thought processes searching for a new route to the data stored in my brain–data on what I used to know, and on how to accomplish certain activities. Some data seems lost to me for good. Some activities remain beyond the scope of my physical and/or mental ability. I often think in terms of “before the end of my pain and illness” and “after I began my new life.”

Then there is the issue of anger. I don’t remember when it began, but by late adolescence/early adulthood I frequently found myself swallowing what grew from a lot of diffuse anger to a frightening amount of rage. I soon realized that my words that were intended to convey merely a little displeasure were interpreted by others as threateningly angry. I began to be afraid of letting my anger out, fearing the results for both myself and others. Not knowing what to do with the bottled up anger, which only increased at a rate positively correlated to my growing sense of powerlessness, I truly believed myself to be a terrible person.

I divorced, believing that getting out of the world to which my husband had introduced me would allow for room within which I could regain some control of my life. My only response to those with whom I had been raised and who, with me, believed divorce to be a sin, was “God and I have agreed that murder and suicide are not viable alternatives.” However, what I found was that gaining control of my life meant two important things: 1) I could no longer blame my now ex-husband for the problems in my life; and 2) the anger was still there, still threatening to me.

So I still felt like a terrible person. A very angry, terrible person. But, given the chance, the human psyche can be a wonderful thing….

One hot summer night in South Carolina, as I tried to fall asleep after coming home from an adrenaline-filled 2nd shift as the nurse in the county jail, I had a waking dream that remains as real and memorable today as it was that night 33 years ago. I was in a dark, dank underground passageway, listening to the bone-chilling maniacal laughter that seemed to be coming from everywhere. The ghostly faces of demons faded in and out of sight against the walls of the passage. I was already panicked when a strong voice announced “Follow me. I am going to show you who you really are.” My degree of panic accelerated, as I replied “Thanks, but no thanks! I already know who I am, I don’t like it, and I don’t need you to show it to me.” Despite my strong resistance, however, I found myself moving relentlessly toward the end of the passage, accompanied by the mind-bending laughter. The Voice said nothing. I dug in my heels, trying in vain to avoid the forward motion toward what appeared to be a castle-type wooden door (you know, the kind with a rounded peak on top instead of a straight edge). As I came nearer, the door began to swing open inwardly, and at first all I could see was a soft, embracing light. It was quiet and peaceful in that room—powerfully so. Still against my will, however, I crossed the threshold.

There, in the room, sat a lovely and graceful woman on a vanity bench, dressed in a floor-length layered white dress, brushing her long and lustrous hair while looking into the mirror. “Who…..” I began, and she turned to me just as the Voice returned to say “She is you.” “Impossible!” I replied. “That cannot be!”   “It can, and is.” The Voice said.

And I returned to full consciousness, in my own room, stunned. Now I know that Freudians will look one way at this story, and Christians (whether or not schooled in psychology) will have their own interpretation. Just for the record, I personally prefer the latter, with a compelling use of Jungian archetypes.

dreamer

That being said, although it did not all happen overnight, I began to take control of my life and incredibly wonderful things happened to me. Though without funds and resources, I was able to return to college and move on to earn my PhD fully funded by grants and scholarships. I did my research in South Africa, where I returned to teach for a total of seven years. What a privilege all that was, supplied for me almost through no effort of my own but because of my goals, rather than as an enticement to follow the wishes of my donors and mentors. It was incredible—unbelievable. How could I ever repay this huge debt?

I was truly a changed person in many ways. What remained with me was the anger. During the college years I could cover and ignore it because I was so blissfully happy. In South Africa, I recognized the sources of my adult anger: injustice, inequality, abuse of power, violence against the powerless–these all fueled my rage. Only now I had learned how to take the energy from that rage and use it, as an advocate and activist. I could do that whether the victim was me, or entire groups of disenfranchised people. I used the anger, but I could not use it up. It remained with me. Where could I find an antidote?

Nelson Mandela suggested an idea that stays with me. mandelaAfter being released from prison and being in the public eye for some weeks, he was asked how he could possibly not be bitter about his unjust 27 years in prison. His simple reply was “If I bring the bitterness and anger out of the prison with me, then I am still in the prison.” My problem, however, is that acting on that statement must be much more difficult than he made it seem. After living for seven years in the middle of a revolution, death all around me and immanently possible, my anger had fueled a lot of action but was still very much with me. (Along with something like a veteran’s PTSD, later). But Mandela became my first black President (I was a permanent resident of South Africa, because I did not expect to return to the States) and I realized that with the influx of well-educated exiles returning home, my role was no longer necessary. Fourteen months later I returned to my own home.

It was home, but not the home I expected. I have written elsewhere how very much like South Africa during apartheid the attitudes of my country had become. It has become even more so since that post. As I write, I am still grieving over the Charleston massacre, and what it means about my beloved country. I find that the anger I feel is appropriate to the situation, and not overwhelmed by the old, built-up rage.

It is here that I finally come to the point of this article.

I have learned that managing built-up rage as well as new anger is a skill that can be learned and must be practiced. I have my own meditation and calming exercises, others will choose what works for them. But the anger must be met first of all with my decision not to be ruled by it, followed by a plan of appropriate ways to either use it or let it go. I’m not a psychologist so I will not attempt a therapeutic explanation—it is only my need to order my thoughts by sharing them that drives me to write this article.

Letting go of the anger is not enough. The empty place that is left must be filled with something strong enough to help protect against the anger when it wants to return. Again, I had begun to see the answer in South Africa.

One day I was talking to an African lady, in one of the townships which was engaged in an uproar (euphemistically referred to as “unrest” by the S.A. media) and not really a safe place for a strange white woman to be. Our conversation, however, went something like this:

Woman: Why don’t you come in the house and stay with us? You will be safe here.

               Me: Why would you offer me safety, when my presence could endanger you and your family? Why do you even trust me in your home?

Woman: Because first you are a human being, and we only survive if we look out for each other. But mostly it is because I can see that you love us so much that you suffer because we suffer.

The woman’s ability to offer unconditional love, and to accept it unconditionally, was the antidote I sought and one that I had spent many years trying to keep from controlling my life by banishing it. I could love, on condition that it be understood as a feeling and not a commitment. I had long stopped believing I was loveable because I was unable to believe the words of those who said they loved me. Therefore I could not be in control of my life if I depended on love, right? People can hurt you. I thought I did not need love. Yet in the words and actions of the woman described above, I saw what was important both to me as a person, and to me as a social advocate. I had to learn a lot about my emotions.

I have been home from South Africa for 19 years now, 17 of those years having been spent working 60-80 hour weeks and not making much headway with the deliberation and meditation required to learn things about love and anger that would have made my life much easier. About love, I have learned that it, too can be a deliberate decision and commitment, and that it also must be practiced faithfully and responsibly. The really difficult part of love has been learning to accept it, and learning to accept caring help when I need it. A friend once described me as being “rabidly independent,” which is not really so funny, when I think about it.

It took the overwhelming pain of my arthritis and disc disease, along with several other physical problems, to make me retire two years ago. The following year was a nightmare of pain and near helplessness. It was only after the successful efforts of my physicians to restore me to functionality that I realized the gift I had been given in meeting–and surviving–my greatest fear. Thanks to the loving care of special friends, including physicians,  I know it is safe to accept help from people who care. I am slowly accepting that I am loved by people that I love. I still have a long way to go.

It is important to me, however, to acknowledge something else of great importance that I have learned. That is, in working to try to make a difference in my reachable world, I need to try to confine my anger to my own energy needs and use my love to guide my work with others. And to let the anger go afterwards, and to hold to the love unconditionally. Too much of my anger has spilled into my words and actions in advocacy, and not enough of the love that sparked my need to respond.  There is already too much anger in our nation.  I don’t need to add mine.

None of that means that I believe I should not be angry with the world that spawned a young man who would be proud to kill people at prayer. None of that means that I will just forget about it. But I am going to have to love my country an awful lot, unconditionally, to keep my anger from depriving me of seeing all of its citizens as equally deserving of my efforts to respect the spark of humanity I do not see because of my anger, even if I cannot love what they have done. My words must reflect both my anger at the injustice and my concern for all the players.

Charleston Post

It’s hard. I am not very good at it yet. But I have made the commitment to try.


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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