CHRONIC PAIN

I live in chronic pain and I have, for the most part, for more than a decade.  I suffer from an acute degenerative condition throughout my entire spine that has resulted in half of my spine being fused and the other half severely degenerated.  I have also had three major joint replacements, each of which has had its own measure of acute pain. There is never a moment when I am pain-free.  But I am not alone!  Studies have revealed that as many as 1/3 of Americans suffer from chronic pain due to a plethora of medical conditions costing as much as $635 billion dollars every year.

It has been my experience that about all the medical profession has to offer to deal with pain that is covered by insurance are narcotic drugs. Things like massage therapy, acupuncture, biofeedback and other pain management therapies that may be helpful in the management of pain are not covered by most insurance providers and not covered by Medicare.  The costs for these alternative therapies can mount up very quickly.

In discussing this issue with others who suffer from chronic pain I have heard several recurring themes:

  • Physicians were often impotent in the face of the person’s pain, not knowing what to do or how to deal with it.  Generally speaking, the medical community seems to be ill-equipped to deal with the manifestations of chronic pain.
  • The person’s pain was sometimes minimized being told they were exaggerating, or their pain was “all in their head” and were often sent away with no real options.
  • Some experienced a lack of understanding of chronic pain by even their immediate community.  For example, I have had several conversations with others about my chronic pain issues, and have suggested that I would be willing to try medicinal marijuana if my pain became severe enough.  Most failed to understand why I would do such a thing, not even to mention it being cost prohibitive anyway.  Others with whom I have expressed my situation have sometimes offered cheap advice or dismissive clichés and have not really listened to the depth of my pathos.
  • The relentless nature of chronic pain affects one’s entire being: physical, mental, emotional and spiritual.
  • The person often ends up confused, frustrated, feeling alone and helpless in finding an effective approach to dealing with their chronic pain.

The Institute of Medicine of the National Academies in a 2011 report said the nation’s health care system has largely failed Americans in pain and calls for a “cultural transformation” of the way in which the United States approaches and manages patients with pain.    I agree with that statement, but at the same time acknowledge that the issue is complex and answers are not easy or obvious.  But that should not stop us from embracing this issue as one of the most serious health issues facing us as a nation.

A few years ago I wrote this poem when I was at a very dark place in dealing with my chronic pain, a place I sometimes return to.  I offer it in this blog in order to share with others a glimpse of what it is like to live with chronic pain.

CHRONIC PAIN

Like it predator, it stalks me 24/7
relentless in its pursuit to devour me a little piece at a time.

Its goal is to defeat my spirit and distort my being
so that who I once was will be unrecognizable – devoid of the grace that once punctuated my soul.

Most days we battle to a stalemate my foe and me;
but I dare not let down my guard for a moment for fear of being overwhelmed.

Is this the best I can do – fight courageously to neither loss nor victory?
Is my fate to merely cope, half alive, in this pain-riddled purgatory until I die?

Or have I lost already, for chronic pain seemingly exerts little effort in its torture of my soul while I expend every ounce of strength just to hold my foe at bay.

Is surrendering to my antagonist inevitable and the best way out?
If so, why not just give up and not prolong the agony?

What merit is there in my struggle?
Does my noble resistance affirm my dignity – or make me an even greater fool?

I confess I do not know, but I still fight on with every ounce of strength
not knowing why.  Is hope of victory a misguided delusion?

Perhaps it is all I have left – just the fight;
for when I fight I know that I am still alive
and acknowledge that I am still worth the fight
and in my foe’s face, affirm my dignity – or then again, maybe not!

Maybe all is vanity.

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3 thoughts on “

  1. Rod Schofield

    Thank you, Joe for posting this. My immediate thoughts are, first, you are definitely worth the fight! Not only for yourself and your family but for all of us who love and care for you and have so benefited from your gifts that you provide us, even in the midst of great pain. My other thought is that this was helpful to me in being reminded that I am probably too quick to overlook the pain you experience because of how well you have dealt with it, at least in public while serving LOTM and in our get togethers. I so appreciate what you have written and know that you have given hope and support to many who will read your comments.

    Blessings to you and Marcia and all your K.C. family this day.

    Rod

    Reply
  2. Holly Buskirk

    Although I have not experienced years of continuous pain, I see firsthand the impact and struggle it imposes on the life of an individual. My daughter lives with ME, a chronic illness with no cure, and I often hear her ask the same questions you ponder in your poem. I wonder what your advice would be to her? I know your heart would go out to her if she shared with you the dreams she tries to believe in and keep alive in the depth of her illness and pain. This 25 year old needs a model, like yourself, to stay positive through life. She needs to know that life is worth fighting for each and every day. This is yet one more burden in your life, but one of enormous help to others. I see my daughter rally when she’s in contact with others so that she can be a part of a “normal” relationship, even though it means she might “crash” for hours, days, or weeks from the effort required to do so. She wonders what to say to those who know she is ill and yet reply, “Oh you’re doing so well,” when she puts on a happy face in the throws of this illness? I see her pain. I hear her pain. I hear your pain as much as you hear my pain for my daughter. What are we all to do? How does our faith help us? How do we help each other? Your blog is one way we can feel a connection and inspire each other to live this life day by day. Thank you for sharing.

    Holly

    Reply
  3. Beth

    There was a bill in CO that just got vetoed by the governor… It said people could only be charged a copay the same as a dr visit for the types of services you are trying to get, although physical therapy was more of a focus. People do not realize that these other services are not even covered, so thus the copay is not an issue. Even when covered, going through insurance for things like physical therapy can be somewhat of a nightmare, so many will either not go or pay themselves. It is sad that these things are not covered. The reason commercial insurance tends not to cover things is that commercial insurance follows Medicare rules, so until Medicare covers something, commercial insurance won’t cover it. Chronic pain is awful and so many do not understand it. It’s the invisible stuff that is very difficult. Prayers for you.

    Reply

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