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.
My friend had joined me in the adjunct professor’s office when I finished my class, and because the day’s lesson had been on anthropology and religions, we were discussing religion. My friend is an atheist, so the discussion not only required a lot of honesty and thought from both of us, but it also became deeply rooted in my thoughts as a result. It was no surprise that when pain awakened me during the night, as it has so often done, that my friend’s final question not only returned to mind, but was interwoven with my ongoing concerns about the disruptive and heartbreaking laws and actions that have so negatively affected physicians and their patients.
It was a long night. The pain was intense and unforgiving. I thought that there is no more “alone” a person can be than when being alone and in pain. Especially if nothing can be done to alleviate the pain. In my case, it is because my body will not tolerate many medications, including pain medications. But for so many others it is because an unthinking and unfeeling state and/or federal body of lawmakers has taken their medication from them. Some lawmakers have gone so far as to falsely claim that chronic pain patients are the reason that addictions and illegal drug-induced deaths occur*. The majority of these lawmakers claim to have made their decisions in the name of Christianity, and/or morality. Thinking about all this, I again considered the final question my friend put to me:
CAN RELIGION BE EVIL?
It is a legitimate question. Jesus was put to death, in the name of religion. The decision was made by a government official under intense pressure from religious leadership – the separation of church and state is not always clean or clear! Again, the apartheid laws of South Africa were based on religious beliefs and carried out by members of the most conservative and pious of denominations, while being upheld by churches throughout the country. Islamic followers have also left bloodshed in their wake since the Prophet died, and ISIS makes religious claims for their terrorism. And I haven’t even scratched the surface of the harm done to humanity in the name of religion. On the other hand, Christians, Muslims, and members of other faiths have spoken and fought against these evils, and lived lives that more fully represented the tenets of their faiths.
There is also the emotional and psychological harm done in the name of religion. On the first Mother’s Day after my infant son died, which happened to be the first anniversary of his birth and death, my own father announced from his pulpit that God had taken my son because I had married a divorced man. I left the church—and the Church–that day, 52 years ago, swearing never to give my heart and work to another church. It was not God I was mad at, it was the Church. I had been both beneficiary and victim of its teachings my entire life, but uneducated as I was at the time, I still was able to see organized religion as a human construction, using the power of the name of the Creator to manipulate and control entire populations to submit to the will of its’ very human membership. It took 51 years to the very day for me to finally give up that resolve, when I was confirmed into a church that not only accepted me as I was, but has a membership that loves and cares for each other and our community, living as best it can the highest commandments: “Love the Lord your God with all your heart, ….and love your neighbor as yourself.”
So today I can say from the knowledge and experience of an entire, long life lived observing, loving and hating religion–while remembering the reason for the religion–gave me, among other really great truths, this understanding shared with my friend: Can religion be evil? No, my friend, nor can it by itself be good. Just as its human members have the ability to choose whether they will do good or evil, so do we choose whether to use our religion and our beliefs for good or for evil. I suppose the litmus test would then be the two commandments quoted above.
Which brings me back to my lonely and painful vigil of the night. Actually, I realized I was not alone. My thoughts—my very soul—amplified my own pain alongside the hundreds and thousands of pain patients sharing my misery, who might have been sleeping relatively comfortably had they been allowed their medications. It would do me no good to go to the streets for illegal medications, but my heart broke for those who that very moment were deciding to do so–the very law intended to end illegal drug use actually making criminals out of law-abiding citizens. I also hurt for those physicians who, at that same dark hour, might be considering suicide because of a life ruined by the harassment of a law enforcement chain of events that considers them “guilty until proven innocent.”
So, in the dark with my physical and emotional pain and in the awareness of a company of fellow sufferers, I prayed for us all. And especially for those who take it upon themselves to decide to use religion and their “moral” values to make everyone live by their very low standards, no matter who it kills.
“Low standards?” you say? Yes. Low standards. Slash and burn is the low road. Restore and rebuild in the name of the Creator is a much higher road.
*I can say that this is a false claim because drugs and alcohol have been used by almost every culture as far back in history as we can document. Drugs had both religious and recreational purposes., and still do in many cultures. Up until recent history, most people did not live long enough to acquire the long-term chronic pain suffered by the majority of such patients today. Today’s chronic pain patients are not the cause of the problem.
I don’t understand it. In fact, I find it deeply painful and disturbing. For months now, I have experienced the reluctance of most officials to hear the requests of chronic pain patients—and even of their care providers—to officially proclaim a Pain Care Providers Day on March 20th. They seem unable to open their hearts and minds to the reality of the huge difference between people who actually constantly suffer in pain, and people who use drugs recreationally whether or not they become addicted to them. They do not see the hundreds of dedicated men and women of great integrity who practice medicine with honesty and skill, because they are focused on the tiny percentage of people who obtained MD degrees for the sole purpose of opening up yet another pathway of delivering drugs illegally.
Historically and cross-culturally, recreational drug use has existed since earliest human history. Drugs and wine have been consumed ritually in religious and cultural traditional performance. Drugs and their use exist, and as we learned repeatedly throughout history, prohibiting them only results in increasing their illegal presence and use.
In contemporary experience, other countries have decided to legalize and regulate drugs, just as they have done with prostitution and other vices that disrupt societal stability. And it has worked great improvements, where carefully planned and executed!
Even in America, we are at least learning that addiction is an illness of the brain, and that it is less likely to occur in elderly people, or with people who suffer severe chronic pain. This is a huge step in our understanding, and if nothing else the campaign to acknowledge and show our gratitude for our pain care providers has helped to advance research in this area, and publicize the results. That is REAL progress!
Before I write another word, however, I must also state my profound gratitude to those officials who HAVE supported and proclaimed Pain Care Providers Day. The day will be observed by those of us (and we number in the millions!) who have benefitted from the patience, skill and dedication of physicians, pharmacists, physical therapists, physician’s assistants, nurse clinicians, nurses, EMTs, medical techs in all areas of medicine, nurse’s aides, and especially those who sacrifice many of their own needs to care for chronic pain patients in their own families or neighborhoods. What they do is life-giving, needed, and produces results that range from easing intolerable pain and/or doing for us what we are no longer able to do for ourselves, all the way to helping us regain the ability to be a productive member of society. Though it is insufficient to truly acknowledge the huge debt we owe you, we do say THANK YOU, AND MAY GOD BLESS YOU ACCORDINGLY!
IT IS NOT TOO LATE. FRIDAY, MARCH 20TH IS PAIN CARE PROVIDERS DAY. If you are an official with the power to proclaim the day, please…please have the compassion to do so. If you have not asked your mayor, governor or representative to proclaim the day, please take the time to think about your friend or relative who cares for someone in pain. Remember the medical professionals who care for these patients under great pressure from drastic regulations that threaten their very lives. And remember to thank those officials who have already had the courage and conviction to proclaim this day.
And don’t forget – on Friday, March 20th, the first day of Spring, do something special for your pain care provider. Send them flowers, or a thank you note, or just give them a hug! Let them know how very special and necessary they are to you and to all of us.
The US Pain Foundation has provided a sample proclamation for Pain Care Providers Day. It can be found at http://goo.gl/qPsfCL.
Lawmakers now claim that drug abuse and overdoses are caused by those who suffer pain and seek medical assistance to alleviate their pain enough for them to cope; to be able to participate in life! How patently absurd. [i]
Before I go on, know that NOTHING in my writing is geared toward promoting the free use of drugs. I firmly believe that second only to the persecution of innocent pain patients and physicians, the great shame of our nation is recreational drug abuse in all its forms, by whoever indulges in it. I have watched too many beautiful and bright college students and other young people destroy their lives in this way. Not just with pills, but also with alcohol, glue sniffing, paint inhaling, and smoking marijuana.
But I have to ask: Why have the law makers and enforcers turned against people who need medication for pain? The problem is not people who rightfully believe medication is intended to cure or alleviate medical conditions. The problem is people who either co-opt others to drug use, or who choose to use drugs themselves.
People choose to be responsible, or not. The medication is not to blame.
But now we are persecuting innocents, with a somewhat hysterical belief that they are somehow the cause. [ii] I submit a brief and incomplete list of resources below showing how the lives of good people are being destroyed by this 21st century witch hunt: Dr. Baldi, Dr. Salerian, Dr. Ibsen, and others[iii]. Also, articles referring to a host of pain patients who, failing to receive the pain care that is their right, submit to the fear of a life of unbearable pain and commit suicide. Or, they go to the streets for drugs. Who can blame the latter?
Their pain has already been criminalized by their own government.
This misdirected war has had unexpected consequences that are well documented. The efforts to restrict physicians and pharmacists[iv] from providing pain medications to patients has immediately resulted in an increase in heroin use, with a rise in overdoses and deaths. The response from law enforcement? “These are UNINTENDED CONSEQUENCES[v]. “ It seems that in law enforcement it is OK to produce unintended consequences that stem directly from uninformed and under-researched legal action, killing innocent people and increasing the presence of street drugs.
When will we be smart enough to open an honest discussion between lawmakers, enforcers, and professionals who actually care about their patients?
When will pharmaceutical companies get concerned enough to research and market pain relievers that are potent enough to control pain, without dangerous side effects?
When will we all shake off our apathetic yet determined slide into the shame of our national mediocrity and the injustice and corruption in our system that accompanies it?
A South African woman once remarked to me that human beings are the most intelligent animals created by God; we are smart enough to create the means by which we can destroy the world – and stupid enough to use them.
[i] Lynn Webster, MD: Lawmakers blame people who want pain controlled as the cause of RX abuse. http://www.tricities.com/workittricities/learn/article_3f71bb90-bad0-11e4-b4c7-9bf785dd481e.html?mode=story …
[ii] Lynn Webster http://www.orlandosentinel.com/opinion/os-ed-pain-drugs-021915-20150218-story.html Terminal cancer patients are treated as drug addicts “At each appointment I get scared my doctor will no longer prescribe” http://t.co/yYvcGWI4Uc War on Drugs victimizes pain pts http://updates.pain-topics.org/2012/06/how-war-on-rx-drugs-victimizes-pain.html : New restrictions hit veterans hard http://t.co/r23KAbUIIm
[iii] These are but a few references: Dr. Mark Ibsen http://t.co/BrZUXfUV3d or http://t.co/6midSDOLOQ ; Dr Salerian: Dennis Lee, the voice, PhiliP KEENE, New York Times Washington Post war on doctors http://fb.me/3zYOQM18d Trial Verdict: Dr. Baldi Not Guilty on All Charges http://whotv.com/2014/05/01/baldi-trial-not-guilty-on-all-charges/ Dr. Gary Shearer: Suspended Northern Kentucky pain doctor dies of ‘suspected suicide’ http://www.wcpo.com/news/local-news/boone-county/florence/dr-gary-shearer-suspended-northern-kentucky-pain-doctor-dies-of-suspected-suicide The damage done by the war on opioids: the pendulum has swung too far http://www.dovepress.com/articles.php?article_id=16781 … Local dr indicted http://t.co/kYxwB0aGmH
|Experts: Officials missed signs of prescription drug crackdown’s effect on heroin use (Posted 2014-03-07 02:40:30)|
|Success in shuttering “pill mills” led to rising heroin use, and officials say the government missed warning signs.|
|The Washington Post – Washington, D.C.|
|Subjects:||Heroin; Prescription drugs|
|Author:||Markon, Jerry; Crites, Alice|
|Date:||Mar 7, 2014|
|The center, which closed in 2012, was separate from the unit employing prosecutors and agents who fight drug use. […]these officials defended their fight against prescription drug abuse, saying those efforts prevented numerous overdose deaths.|
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.
By taking care of the ones who care for us we all win.
That’s why it’s time for Pain Care Providers Day.
—Did you know? For every 21,276 pain sufferers in America, there is only one board-certified pain management specialist. One in EVERY THREE adults in America suffers from pain. Doesn’t seem that they all are going to be adequately treated for their pain, does it?
Consider this: Chronic pain lowers productivity, even for patients who continue to work full time. Pain may often interrupt someone’s ability to carry out their job at peak performance. At these numbers, chronic pain becomes a serious economic problem for the nation. That is even before one considers the added costs of treatment for those who are able to obtain help.
The difficulties in obtaining help for chronic pain have been described often and well in recent months. I have read stories of attitudes patients must deal with, from untrained physicians to family members, friends, employers and co-workers. All too often, they hear:
-You look just fine! You don’t seem to be in pain.
-You don’t need to take anything but Tylenol for pain.
-Come on, suck it up! Everyone hurts somewhere now and then.
-It is probably all in your head. Have you tried seeing a psychiatrist?
-What do you expect, at your age? You are not a spring chicken, you know!
I could go on, because like other chronic pain patients, over the years I have heard it all.
A few weeks ago, I posted a Christmas message in which I stated I was looking forward to 2015; that this year would be a year of hope and purpose. I described my gratitude for my changed circumstances, due entirely to the concerted efforts of caregivers. I am particularly grateful today for my primary care physician, who insisted that I see a pain management physician. The latter would become both the expert who would successfully treat my severe chronic pain, and a very active supporter through the months of emotional chaos that accompanied major life changes as I made the journey to being once again at home in my own body, and in my own mind. “Gratitude” just doesn’t even begin to describe what I owe for the rare respectful listening, caring, believing, and helping that I have received.
That only describes the role of my physicians, How blessed I have been with friends and family who have cared, listened, transported me for medical care, and done chores for me that I could not do for myself. Who called and/or emailed regularly, to check on me. For those who prayed for me, and who rejoiced with me when I was back on my feet again, and back in the classroom teaching – where I most wanted to be.
How many of you readers know someone who has pain a lot of the time? How many know of spouses, children, parents, or friends who give of their lives to care for people who live with constant pain and disability? If you are like me, once you stop to think about it, these folks are not rare. They are all around us!
We who have been blessed with caretakers who make all the difference in our world, and in our ability to survive, want to make MARCH 20th a NATIONAL PAIN CARE PROVIDER’S DAY. We want to celebrate these selfless individuals who care and give so much; those physicians who – despite draconian pain medication laws in many states with criminal prosecution for overlooking them, still keep on doing their best to help as many of the many pain care patients as they possibly can.
PLEASE HELP US THANK THESE CARETAKERS. TALK TO YOUR FRIENDS AND FAMILIES. WRITE TO YOUR CONGRESSMAN, AND ASK HIM/HER TO PROMOTE NATIONAL PAIN CARE PROVIDERS DAY ON MARCH 20TH. WRITE TO YOUR GOVERNOR; YOUR MAYOR. LET THEM KNOW HOW IMPORTANT IT IS TO SHOW OUR GRATITUDE FOR THOSE WHO CARE FOR PEOPLE IN PAIN — ESPECIALLY THOSE WHO CANNOT CARE FOR THEMSELVES.
Please. Give us the chance to show our gratitude in 2015.
The first Sunday of Advent, four Sundays before Christmas, signals the start of the New Year for the Church. Throughout Advent we consciously await the Nativity, which is then joyously proclaimed through triumphant music, beautiful decorations and pageantry, and renewal of the reverence and faith that accompanies the wonder of the manger scene. Sharing this time together as a church community gives strength to our love for each other and for our shared walk in faith. It is both a fitting and necessary beginning to each new year.
Not everyone is always able to be present at the festivities, however. Many are shut-ins, too ill or disabled to attend. Others may be away from home, serving country and faith in other lands while being homesick, and being equally missed at home. Still others have either abandoned the church, or felt abandoned by it, and will not be a part of this renewal. Christmas is not always a time of joy for many reasons.
Today, Christmas Day 2014, although I had planned to participate in all events at my church home, as well as get-togethers in the homes of friends, I am confined to home on this day. Despite having had two flu vaccinations in the past ten months, I was afflicted with the particular strain of flu that this year’s vaccinations won’t protect against. For once, I was grateful for email and the telephone! Friends and family kept up with me, kept me entertained, and projected the warmth of their personalities into my days, even when they were mad a me for refusing to let them anywhere near me. If nothing else, I was going to make sure that the particular bug that infected me would not infect anyone else!
That still meant a lot of time alone, and time to reflect on present days and past blessiings. As I relived this past year, I recalled so clearly the long days and nights of a year ago when in my pain and illness I begged God to deliver me from this life. He did, but not as I expected. For most of this year my pain has subsided to very manageable levels, and my activity has returned to near normal. My various physical conditions have been identified and treated, and in the New Year I will begin teaching again as an adjunct at a local University. The year 2015, unlike its predecessor, is a year filled with hope and purpose for me.
I am reminded of a similar year, half a lifetime ago, when at the end of my resources and without hope I made a decision that took me on a 33-year journey of challenge, adventure, and great satisfaction in life. https://maryleejames.com/2014/06/19/this-is-why-it-matters-to-me/ The satisfaction came from knowing that my purpose was to share with others the gift of education that had been given to me, and I have been allowed to do that on two continents.
Now it appears that I have been blessed with a third chance to rise from the shambles of my life, escape the worst effects of chronic pain and illness, and live again. This time, in order to give back, my time and efforts will be made on behalf of that huge segment of our society that lives in chronic pain and is way too often discriminated against by a range of people within their own families and friends, all the way to departments in our state and local governments. Equally distressing, the very physicians who actually do listen and try to help them are also targeted for discrimination, if not actual harassment.
Some progess has been made, but not nearly enough. At some point, we must stop blaming inanimate objects for our social ills and accept the facts that guns, pills, alcohol, cars, computers, cell phones , money and other material things are not at fault for our misuse of them.
Today, I realized anew that the pageantry, decorations, music and companionship are not the real Christmas. The real Christmas is within me, and has filled me with peace and joy on this blessed day.
I humbly pray for the same for all of you. A very blessed Christmas, and renewed peace and joy for the New Year!