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With a Master of Fine Arts in Creative Nonfiction degree (Goucher College, August 2014), I am looking at a new phase in my life. From 1992 to 2009, I served as Founding Executive Director of Miriam's House, a residence for homeless women living with AIDS. I left this position when Chronic Migraine Disease overtook my ability to do my job. Now I hope that a writing career will both accommodate the migraines and give me a creative, productive outlet. And soon, September 4, I will launch my Inkshares author page in a bid to hit the 1,000 pre-order goal in 90  days. The book I want to publish is "Nowhere Else I Want to Be," a memoir of ten of my years at Miriam's House.

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.

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