Says Who??

Verstehen, through shared perspectives


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THE SOUL’S MUSIC RESTORED

 

scenic pianoHuman beings have a wonderful gift that I firmly believe connects our spiritual nature to the source of its being. The ability to create beautiful sounds from our own throats, to use our brains to compose melodies and harmonies that become operas, concertos, requiems, ballets, and marches; to combine our voices in the multiple harmonies and rhythms of the choir, accompanied by instruments we have invented for that purpose, is beyond comprehension. The results are so pleasing to us that whether for a free concert or when having to pay a large price for tickets, we will gather together to enjoy this gift that speaks to our souls as a community, or we will listen to recordings by ourselves as we bask in the restoration and pleasure of the experience.

Many of us are drawn to a particular genre of music that has a greater capacity for energizing, calming, or healing that is special to our unique self. Maybe it has the ability to do all of this; perhaps it also becomes a comforting presence to the person who is alone with their joy, sorrow, or just with their thoughts. In any case, those for whom music is a vital part of their life enjoy a profound relationship with it, even if they only have the ability to listen with all their hearts and cannot produce the music itself.

For me, music has always been important. I am almost transported to a higher plane of being when listening to classical music, my favorite—especially to classical piano. Having played several instruments when I was younger, including piano, organ, violin and alto clarinet, I often found myself fingering the notes of a particularly moving or thunderous passage—sometimes even waving my arms in the fashion of a conductor as my entire body listened to, and was moved by, the music. Until it was not.

It has been more than twenty years since I could bear to listen to the classics. Listening to the music was not something I did passively; it could not be background for other activity. I had to stop and concentrate, to listen with my entire body and soul. The music demanded it. So as I grew older, and the disease processes that create my chronic pain grew worse and required all my energy to cope, I no longer had the ability to listen to the classics—especially the piano. It actually hurt, because those pathways of pleasure were now overcome by pathways of pain and illness. Instead of soothing, the music irritated inflamed nerves.

pain photo

 In my previous articles, however, one could follow the wonderful restoration of my ability to function physically under the dedicated care of a pain management physician. I have even regained the ability to work part time, and to function quite normally in taking care of myself. I have often remarked that my brain is not what it used to be, but I was beginning to feel more like myself. This has been an amazing journey; one that continually filled me with awe and gratitude for being given a second chance to live a productive life unbound by severe chronic pain.piano keys

In fact, in the past few weeks I have become aware of an additional blessing. I find myself, more and more often, listening to classical music and especially to classical piano. It has now even taken the place of the less demanding substitutes that occasionally accompanied my drive to work. I am able to listen at home now, giving the music my entire attention.   In other words, I am once again able to listen to “my” music with my body and soul, and to experience the healing and restoration, the uplifting resonances and the calming adagios that exemplify the genre.

I am so very grateful to the physician who continues to serve those with chronic pain despite the cultural unpopularity of that service, and who kept working with me until I regained my ability and determination to live. As a special and additional blessing, I now feel as though a missing piece of my soul has been restored by “my” music, and I am finally, wholly myself once more. And more than ever, I believe that music is one gift given to us that connects us spiritually with the source of our being,  and I again experience the connection, in gratitude.


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IT IS TIME FOR PAIN CARE PROVIDERS DAY

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.

hands, heart


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WOUNDED SPIRITS

My life journey has taken me to the new world. I have accepted this new world, my new reality.  I am going to do my very best to be a productive and healthy person in this new reality.  BUT – WHO IS THIS NEW PERSON?   And how do I understand the new “normal” for this person?

We have good reason to ask “What is normal?”   We go through our days in the midst of family, community, nation and world having some idea of what to expect from those around us.   That is, until some monumental event shakes up our world and our expectations and we are forced to accommodate a new reality. Even when we are merely the observers, adjustments must be made that vary in the degree of their intensity according to our degree of attachment to the former situation.

We watch a documentary recording the life of a wounded warrior, struggling to make sense of his changed body and mind and find new meaning in his life. We are touched, reminded of our own frailty, and perhaps even determined to engage in some effort to assist the many such members of our society. But what if that warrior is my spouse, parent, or sibling? The change in my own life must accommodate the changes in the life of the warrior in many ways. There is a grieving process that must take second place to the need to care for the wounded loved one, and to learn how to maximize the benefits of our new life together. The changes are emotional, physical, and social. They are economic. They are time consuming, demanding, and often frustrating. The family, individually and as a unit, must “reinvent” itself to achieve a new wholeness. For too many, this is like putting Humpty Dumpty together again. The fractured selves are unable to withstand the challenges, and wholeness becomes elusive.

In all of the outwardly evident necessity for communal adjustment, the psyche of the wounded themselves may require more support than the medical and family community is able to provide. Patients are subject to unwritten rules and expectations that include: 1) A willingness to get well; 2) Compliance with medical treatment and with family expectations of same; 3) A positive attitude about life and their new place in it; and 4) They should not suffer too loudly, or too often. There is more, but of course each wounded person and each family will be both unique and yet have much in common with others in similar situations. Each person within the family unit also brings their own personality to the situation, for better or worse. But what about the wounded warrior him- or herself?

At this point, let us enlarge our wounded warrior status to include, as we have, members of the family and community. These are wounded warriors whose injuries did not occur on the battlefield, and whose wounds may not be visible. Yet individually, they share much in common. There are also others: The stroke survivor. The cancer patient. Those who have lost limbs, or have lost mobility due to accidents or disease processes. Those who have given all that they have in their vocations, or to their families or community, and have simply burned out. Those who struggle with addiction. The point I am getting to is that while we may understand and sympathize with the outwardly evident wounds of these pain warriors, we understand too little of the inward journey they are making. The physical needs, including the social environment, are so great that the patient is often left to figure out on their own how to be a whole person within, having lost so much of the external evidence of wholeness. If we address this at all, we tend to say (as I already have) they are “reinventing” themselves, which may be a problematic term.

Some commonalities exist: With physical loss, there may have been an event where the patient was in one place when it occurred, and returned to consciousness in a completely different and possibly strange place, already both physically and mentally changed. Or, disease processes may over time become too overwhelming for both body and mind, and there is a loss of ability, loss of productivity, loss of independence, loss of financial status, loss of mental acuity—too many losses to support the former persona. Too many losses to grieve, to accept, to overcome easily in the effort to restore a sense of self, of worthiness, of place in a different world.

Some wounded never return to us as independent, self-sufficient persons. Depending on the degree of injury to both body and mind, they may daily suffer a constant state of mental and/or physical pain that precludes outward focus. But many do return to some degree of personhood and productivity, and it is these who may be most painfully subjected to society’s rules for patients as outlined above. As the ability to cope increases, so do the expectations of society, family, and medical caretakers. The huge problem of “Who am I going to be, now that I have lost who I always used to be?” remains unrecognized, and if actually voiced, bulldozed over by the well-meaning advice that boils down to GOIAMO.   Get over it, and move on.

It is not that easy. Yes, I have completed the grieving process. Yes, I have accepted that this is my new world, my new reality. Yes, I am going to do my very best to be a productive and healthy person in this new reality. BUT – WHO IS THIS NEW PERSON?

The emphasis on “new” comes from the phrase “reinventing one’s self.” That can appear as a completely overwhelming task for the recently wounded soul. And it is a task that for the most part begins alone. Later, as the self becomes more certain, relationships with others of varying significance will be vital to the restoration process. First, however, there is that incredibly lonely, often painful, often frighteningly introspective search. And at first, it is likely to be a search backwards “for the self that I used to be.”

That focus in the past is healing, but eventually may be stunting to the growth process. It is healing, in that common, continuous threads of the personality and the life of the patient become evident. I am not completely new, after all. There is much of my personality that is still usable and strong. But retrospection becomes stunting when the focus remains lost in the past, and the wounded one begins once again to grieve for what has been lost.

In the end, if we persevere, we begin to focus on the future, and what we will bring to it. That is all that is really unpredictably new, and in reality, it always has been. It may not be the future we have intended, and for some of us that is truly an entirely new concept and challenge. More of us, though, have had to live and adjust to Plans B, C and even D already in our lives, and have the experience to make this latest adjustment. We just may have bigger hurdles to jump in order to do that.

Whether the life changing wounds are our own, or those of a loved one, the change is both an outward and inward journey. It might help if we adjusted our expectations of how people should react to their woundedness, and how we should react to our own woundedness. In either case we need to make room for potential wholeness in a changed future.


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TO LIVE, AGAIN

In earlier blogs I have shared my 45 year journey with chronic pain, increasing disability, and finally reaching the point where pain and disability were not always compatible with the will to survive. I have also written of the recent procedures that have relieved that pain enough for me to cope, and to begin to pick up the unraveled threads of living; to once again look beyond the immediate desperation of losing control of my life and to see, and feel, the enticement of a world that had somehow managed to retain its fascinations even when I was not paying attention. I joked with friends that I now knew how Lazarus might have felt, when Jesus brought him back to life. What a thrill it has been!

You would think that by my seventh decade of life I would have learned that one cannot stay on the mountain-top experiences of life. The journey continues; there are valleys to plunge into, rivers to struggle across, and then more mountains to climb.

Even so, I was completely unprepared for the news I was given two days ago. I have acquired yet another chronic disease process that is not only difficult to deal with, but also extremely expensive. Because of my intolerance for so many medications, there is only one that will provide any relief at all. It won’t cure, only relieve for brief periods. It costs $173 for about a month’s supply. Medicare doesn’t cover it, and neither will my Schedule D coverage. I live on social security, and this is not the only medication that I have to pay for myself. As my doctor pointed out, sometimes those valley experiences are less like rolling downhill and more like falling off a cliff.

I was immediately faced with the commitment I had made with a former colleague to take the following day, yesterday, and travel about an hour out of the city to spend an afternoon with two other of our former colleagues. We had all worked together at my former college, but over the past six or seven years had made separate decisions that eventually brought us all within reach of each other again. Only I was now unprepared for the challenge. First, it would be my first major trip in over a year. Up until my “restoration,” driving within a four-mile radius had been my limit. Second, my new self-confidence seemed to have disappeared, along with my new joy of living. Why should I impose my doom and gloom on my old friends!

I considered my options. I could call and beg off – that was nothing new. I have had to do that so often in the past couple of years. Then, instead of enjoying the comfort of conversation and shared memories with old friends, I could stay at home with the dubious comfort of self-pity, letting the fears of the past roll into the fears for the future. I could choose, in other words, to be miserable.

So what if I chose instead to be, if not happy, at least to be content? And what was there to be content about? Well, for starters, I still had the freedom once again to move about. I actually could drive away from the safety of my four-mile limit, and see what the world outside the city looked like. And I could enjoy a much-needed day with old friends, just as we had planned.

So I did. And it was magnificent. I don’t recall the scenery ever having been so peaceful, and lovely. I had forgotten the exhilarating sense of adventure that is fueled by the idea of “road trip.” Best of all, I was once again enfolded in the rich satisfaction of being with old friends, sharing good food and better memories. I was so glad that I had chosen to be happy.

Coming back to life has its challenges, as well as its joys. Old ways of coping with day to day living may have to be relearned after years of coping with pain and desperation, and serving the egocentric needs of being a patient. Worse, it is not a perfect world that you come back to. Much needs to be corrected, to be fought for. Much needs to be protected, and treasured.

Please, Lord, remind me to change what things I can change; to accept those things that I cannot change; and most important – to know the difference. And to be content.