13 February 2011

Reading "The Pain Chronicles" - Three

NOTE: I am not writing this series of posts about Melanie Thernstrom's The Pain Chronicles: Cures, Myths, Mysteries, Prayers, Diaries, Brain Scans, Healing and the Science of Suffering (Farrar, Straus and Giroux, 2010) as a book review. I do highly recommend this book for anyone who is suffering chronic pain or is close to someone who is, but I am not trying to make the case for that. It's really a matter of inspiration: a book written by a chronic pain sufferer would naturally hold interest for me, giving me much to ponder in relation to this blog.


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A strange thought occurred to me as I read one of the chapters in Thernstrom's book.

"I don't think I've ever really expected a doctor to make much of a difference in, much less cure, my pain."

I didn't think about it much until this morning, as I reviewed the chapter in preparation for writing this post.  Entitled "The Paradox of Patients' Satisfaction with Inadequate Pain Management" (pages 151-155), the chapter covers various aspects of the topic, including doctors' general inability to treat pain successfully and patients' responses to unsuccessful treatment. 

"Many studies document that most patients do not get good pain treatment.  A 2005 Stanford University survey found that of the chronic pain sufferers who actually went to a doctor, fewer than half received adequate pain treatment, while the American Pain Society found that the same is true of cancer patients." (page 152)

I've read about doctors' tendency to ignore, become frustrated by, or gloss over a patient's pain.  I've experienced a doctor minimizing my pain, standing at the door with his hand on the knob, all but jumping out into the hallway to flee my puzzled questions.  The medical arena in general seems mystified about pain, and if there is one thing many doctors do not want to be, it's mystified.  A physician has learned to be in control, to be the one who has the answers that make for a cure or better health, has been told in so many ways that the patient is counting on her/him.  Even aside from pain management, it is my experience that far too many doctors (and I include nurse practitioners in this) brush aside questions almost as though they suspect insurrection or impertinence in every query.

Doctor (describing the medication she wants me to take): "I'm prescribing Midrin.  It's for tension headaches."
Me: "But if I'm having migraines, why would I take a medication for tension headaches?"
Doctor (thoroughly intimidating me as she sits up tall in her chair, lifts her chin and stares me down): "A HEADACHE IS A HEADACHE."
Me (cowed): "Oh."

I had no faith in the Midrin because I'd learned a lot about headaches, and understood that many neurologists believe the mechanisms of different kinds of headaches are, indeed, different, and so are treated differently.  Yet I allowed this woman to bully me into taking the Midrin: I meekly filled the prescription and tried the medication, which, predictably, did not work at all.  I switched to a medication developed especially for migraines (prescribed, I might add, by a different doctor) that managed my migraines well for several years.

Thank God the neurologist that I see now welcomes, even expects, my questions, listening until I am finished and then answering thoughtfully.  I like that.  The fact remains that he has not been able to help the pain of the migraines.  Yet I like him, and if I responded to a satisfaction survey, I am sure I would indicate a fairly high level of satisfaction in his care.

Why would I do that?  I am unemployed and unemployable because of the migraines that my neurologist has been treating for three years now.  There is no difference in the pain.  Well, that is not entirely true.  The difference is that I have learned how to manage the pain.  But that I have done on  my own as I learned the benefits of accupuncture, deep muscle relaxation, prayer, meditation, and a Buddhist kind of acceptance.  My doctor, with whom I would proclaim satisfaction, has had nothing to do with these things.

Whatever the reason - I appreciate that he is genuinely caring and trying to help, or I like him enough that poor results don't matter - I have let my neurologist off the hook.  There are all kinds of ways to view this: Thernstrom discusses several in the chapter.  But here is the one on my mind: I have undertaken a more holistic approach to this health matter rather than relying solely on traditional medications that invariably have side effects and leave me wondering about their affect on organs like the liver. 

Not that I have completely rejected traditional medicine.  I take the prescribed medication at the onset of the migraine, and try the various prophylactic (meaning preventative) medications although I do so without much hope.  I continue to see him and email him with problems or questions, and he continues to respond thoughtfully. 

I like balance, something I learned from my mother, who says (about diet, health, and many other subjects): "All things in moderation."  The moderation in this instance has to do with eschewing a singular reliance in favor of multiple strategies. 

Not to mention that my experience with so many impatient and insecure doctors makes me very grateful for my current neurologist, who is neither.  So the fact that I am still in pain takes on a weird irrelevance.  "At least he cares, and he listens," I say to myself as I leave his office. 

There exists in all this a paradox that will be the subject of my next post: has the effectiveness of my Buddhist study and meditation caused me to simply accept the pain, giving up on a more proactive and insistent approach?


I would love to hear from you.  Please use the Comment box below, or email me at carold.marsh@gmail.com.

07 February 2011

The Pain Chronicles - Two

NOTE: I am not writing this series of posts about Melanie Thernstrom's The Pain Chronicles: Cures, Myths, Mysteries, Prayers, Diaries, Brain Scans, Healing and the Science of Suffering  (Farrar, Straus and Giroux, 2010) as a book review. I do highly recommend this book for anyone who is suffering chronic pain or is close to someone who is, but I am not trying to make the case for that. It's really a matter of inspiration: a book written by a chronic pain sufferer would naturally hold interest for me, giving me much to ponder in relation to this blog.

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"...[C]hronic pain is, by definition, a pain that the brain fails to moldulate." (page 47)


This is the final sentence of the chapter named, "Acute and Chronic Pain", in which Thernstrom does a marvelous and succinct job of explaining the differences between the two kinds of pain.  She also writes about the beneficial effect of distraction, which helps me understand why meditation and prayer serve to lessen the pain for a while.

Acute pain elicits a very different neurological response than does chronic pain.  It's a survival mechanism, as Thernstrom explains it: "After an injury, the brain can sometimes stave off pain by temporarily switching on powerful pain-inhibiting mechanisms and releasing its own painkillers, such as endorphins, into the spinal cord, in a process known as descending analgesia."  (page 46)  Thus, cave dwellers were enabled to run away from the tiger that had just bit them, feeling no pain until safely returned to the cave.  Thernstrom cites the example of the young surfer, Bethany Hamilton, who said, "'I didn't feel any pain [after the shark bit off my arm] -- I'm really lucky because if I felt pain, things might not have gone as well.'" (page 47)

But chronic pain has an entirely different neurological mechanism.  I can't describe it any better than does Thernstrom : "Chronic pain is not protective [as is acute pain]; its intensity bears no relation to the amount of tissue damage and may, in fact, arise without any apparent damage at all.  It is like a broken alarm that rings continuously, signaling only its own brokenness."  (page 43)

I have said many times (trying to avoid sounding pathetic), "I don't think my brain knows how not to have a migraine."  Inadvertently and intuitively, I was stating in a layperson's terms the conundrum of chronic pain.  The system is broken and it is persistently, insistently telling me so, thereby creating more pain.

I am reminded of Edgar Allen Poe's poem, The Bells.

I cannot tell you the relief I felt as I pored over this chapter, reading and re-reading in order to ensure my understanding.  And this even though I had listened to my neurologist explain that the brain becomes accustomed to pain and develops habitual pathways for it.  Why had this lesson not sunk in before?  I think that, for most of us chronic pain sufferers, there is an unkind and persistent voice in our ear saying, "You wimp!"  Knowing that there is an actual neurological reason for the constant pain in my head takes it from the depths of wimphood (wimpostiy? wimpitude?) and into the realm of simple physical reality.  I guess I just had to hear that message several times for it to really make its way past all those neurons firing off in automatic and helpless alarm.

Thank you, Melanie.

Then there is the issue of distraction.  As discussed before in this blog, my meditation and prayer practices are most helpful during a migraine.  It's not so much that I perceive the pain as being lessened, it's more that meditation and deep relaxation bring the whole of my attention to a broader, deeper and more peaceful place.  This seems to relegate the pain to a less significant chunk of my awareness.  One of the ways I perceive this is in the difference between saying, "I am in pain," and "There is pain here."

Since I cannot mediate for the entire six to thirty-six hours of a migraine, there is always Seinfeld on DVD, music, National Public Radio (who'd have thought that Car Talk can be a distraction for pain?), books on CD and public television.

When I was a kid and had stubbed my toe or bruised my shin, my Mom would tell me, "Say Jack Robinson!"  Where that came from and what it meant, I do not know, but in light of what Thernstrom reveals, it surely was meant as a distracting measure, both for my Mom, who didn't necessarily need a wailing child on her hands, and for me, as a way to distract me from the pain.  These days, I take three slow, deep breaths to distract myself and the pain seems to recede more quickly than if I dwell on it.

Finally, here is a case in point: I have spent an hour writing this post despite the fact that I was lying down with a blindfold over my eyes until 8:45am today.  As I concentrate on writing, the pain recedes into the background.  When I turn off the computer, the pain will - I know this from experience - force its way back into my awareness.  Time for some meditation.

I would love to hear from you.  Please use the comment box, below, or email me at carold.marsh@gmail.com.

03 February 2011

Reading "The Pain Chronicles" - One

NOTE:  I am not writing this series of posts about Melanie Thernstrom's The Pain Chronicles as a book review.  I do highly recommend this book for anyone who is suffering pain or close to a pain sufferer, but I am not trying to make the case for that.  It's really a matter of inspiration: a book written by a chronic pain sufferer would naturally hold interest for me, and the section on religions and pain gave me much to ponder in relation to this blog.

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"I felt diminished - degraded, even, by pain - not only physically but spiritually as well." (The Pain Chronicles, page 75)

I know what she means: even after six years of living with and learning from migraine pain on both the physical and spiritual levels, I found myself feeling like a failure recently when - after two months on a very restrictive diet - the migraines were still coming regularly and, often, fiercely.  "Other people say they felt better after two weeks on this diet!  What's wrong with me?"   It helped when my friend Juliana read to me some reviews of the book in which I found the regimen, and it was clear that many migraineurs are disillusioned to the point of verbal vitriol about the good doctor and his diet.

The diet hadn't (yet?) worked for me.  That did not make me a failure, and part of me understood this even as I felt myself sinking into depression and onto the pity pot.  But that is one of the tricky things about chronic pain: we lose perspective in its clutches, we find ourselves degraded by it.  Our lives are restricted by it, we become defined by it, we live through many losses because of it.  How, then, to work with the diminishment on the spiritual and physical planes?  How to find redemption in this purgatory that seems to consign us to the outer edges of life?

However far we may have come in accepting, allowing, and learning from pain, the daily reminders sting none the less.  The radio station is giving away tickets to Washington Opera's "Madama Butterfly" and I listen intently for details until I remember that I haven't attended concerts in years: I don't know in advance whether I will feel well enough to attend a performance on any given night.  Melanie Thernstrom describes wanting to participate in a canoe trip, adamantly insisting that she can do it, despite the facts that she has never paddled a canoe and the pain in her neck, which radiates down her arm, would sideline her before she even began.

Our minds don't want to remember we have pain.  When circumstances and our own desires force us to remember, it hurts.

I am not now and will never be like the saints, those of the beatific countenance as the martyring flames devour them.  The concept of choosing martyrdom, which Thernstrom also discusses, repulses me because I simply cannot believe that God can desire for us or lead us into such annihilating pain. I do not accept the migraines as a punishment that will teach me a lesson, or as a sanctifying alchemy for my soul's ultimate benefit.

However.  All that being said, I do know and I have experienced the spiritual and physical benefits of choosing to allow the pain: to resist fighting it, to accept it as a reality over which I have only limited control, to view it as a life circumstance that, albeit difficult, can serve to break me open to the Light.  Perhaps it seems a negligible distinction, but to me it is a very important one.  It's a matter of spiritual perspective: I have no need to find a reason for the pain.  Instead, I find a teacher in the pain.

Pain as instructor, not as theological discourse.

In the case of the opera tickets, the stinging disappointment as I realized the impracticability of obtaining a ticket made for a difficult moment or two.  At such moments, my next thought is never something like, "God must not want me to go," or "There's a good reason for this."   That kind of thinking is counterproductive at least in part because thinking - with its circular, repetitive character - simply doesn't help.  What helps is breathing (three long, slow, deep breaths) along with a quietly inward focus learned through deep meditation and centering prayer.

In a few moments, I am calmer, more accepting of my reality in the moment.  The disappointment is still real, I do not deny that.  The wish to be able to attend the opera stays with me, I do not force it away.  But the centering practice connects me with a spiritual spaciousness that is its own reward, so wonderfully different is it than the narrowly claustrophobic confines of my thinking mind.

The practice of three slow breaths with an inner focus has come from years of meditation, Christian centering prayer, Buddhist meditation, and learning from Eastern religions.  My pain has become easier to bear - I do not say lessened - due to the age-old wisdom of the world's spiritual masters and mistresses.  When a migraine or a disappointment due to chronic pain enter my reality, I am grateful for access to a broader and deeper, calmer and lovelier place.  In this, I am blessed.

That is not to say that I wouldn't, given half a chance, give up the darned migraines in a heart's beat.

I would love to hear from you.  Use the Comment box, below, or email me at carold.marsh@gmail.com.

31 January 2011

Re-booting: Plans for 2011

Since my last post in December 2010, I have traveled a new world (for me) in pain management.  The energy this requires has made it difficult to keep up with regular posts, let alone summon the creativity to re-group on what this blog is and how I want it to evolve.  Now I feel ready to take on this writing again.

The new world of pain management that I entered in late November was introduced to me by Dr. David Buchholz, MD, in his book Heal Your Headache: The 1.2.3 Program for Taking Charge of Your Pain.  Briefly, he advocates strongly and, to me, convincingly, that the two main reasons for migraines are (1) food triggers; and (2) rebound headaches resulting from taking too much pain medication - especially the meds created specifically for migraine headaches.  The regimen is controversial and doesn't work for everyone, but to me was worth a try.  Always the impulsive one, I began the very day I first browsed through the book: I stopped taking my migraine medications and began the rather restrictive diet he prescribes.
 
Predictably, the migraines worsened and intensified immediately, and although they have not been quite as bad as they were during those first two weeks, they have not let up.  Dr. Buccholz recommends staying on the regimen for four months: I have two months to go.  Other than whining about not being allowed to drink my usual one or two cups of tea per day - caffiene is off the list of allowable foods - I have managed actually to enjoy the new diet and the culinary creativity it forces on me. And it certainly is a healthy one.

I find it really difficult to peer at a computer when I have a migraine and so I felt it best to discontinue the blog while I learned this new level of pain management.  I am still learning, yet eager to begin writing again, especially as I have a couple of - in my opinion - neat ideas for this year.

The first idea centers around the book recommended to me by friend and blogger, Ellen Painter Dollar.  (Who, by the way, has written a couple of guest posts that I will soon publish on this blog.)  The book, The Pain Chronicles: Cures, Myths, Mysteries, Prayers, Diaries, Brain Scans, Healing, and the Science of Suffering, is written by Melanie Thernstrom, herself a long-time sufferer of chronic pain due to a neck injury.  It is an amazing book, well-written and comprehensive in the extreme.  In it I found several topics for blog posts, the first of which I will begin this week.

The next idea also centers around a book: The Power of Now, by Eckhart Tolle.  I have quoted and ruminated about Tolle's work in previous posts, and in listening (I don't read much due to the headaches, but love books on CD) to this book recently, I realized that I was taking his thoughts and translating them for myself so that they more specifically fit the physical pain in my life.  I plan a long series of posts about this take on Tolle's philosophy this spring and summer.

Finally, I am still interested in hearing from, talking to and posting the writings of other persons living with chronic pain.  Ellen Painter Dollar is the first of what I hope will be several guest bloggers or interviews this year.

God willing, what I write and post here in 2011 will bless others as much as being in this process is blessing me.

I would love to hear from you.  Use the Comment box, below, or email me at carold.marsh@gmail.com.

11 December 2010

Re-grouping

I shall take a break from writing posts until after the new year.  For one thing, I'm beginning to repeat myself, and for another, I want to have time to imagine and implement new ways to approach this subject.

For example:
  1. Interviews and/or guest posts from others suffering from chronic pain (and I would appreciate being connected with anyone you know that would be appropriate);
  2. Research into the various ways that different spiritualities and religions deal with pain;
  3. Other ideas sent to me by readers at carold.marsh@gmail.com.  Hint.
I hope and pray your holiday season is a blessed one.