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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.

28 February 2011

How Do I "Do" Lent in This Life of Chronic Pain?

What does Lent (the Christian's annual 40-day period before Easter) mean this year, after I have had to leave my job, greatly curtail my social life, stop all my pain medications, and fast from most of the foods I love?

OK, that will hopefully be the last sentence in this post that sounds so miserably pathetic.  I just don't know how else to say it, and certainly don't care to pretty it up with more acceptable, falsely pious wording.  I really do wonder how to "do" Lent this year.  And I figure I would be wondering how to "do" Ramdaan were I Muslim (although persons who are ill or pregnant, etc., are actually barred from practicing the fasts of Ramadan, the question would still be there, I think).  Many spiritualities hold respect for and mandates about  the practice of abstinence, sacrifice, and repentence, all for the benefit of our spirits.

(Note: here's an interesting thought.  As I researched other spiritualities for information on Lent-type practices, I Googled "spirituality, sacrifice" and got information on human sacrifices as a way of appeasing the gods.  Make of that what you will.)

Christians view Lent in many different ways, although a primary purpose is as a time of repentance and abstinence that echoes and reveres Christ's life and His own time in the wilderness.  Coming as it does in the 40 days before Easter, Lent has a deeply reverential regard for Christ's sacrfice on the world's behalf, asking His followers to undergo a spiritual sanctification not unlike His.

The Hindu religion, about which I know little, seems to have differing thoughts on repentance.  I found one source that said repentance is useless because there is no system "...that can affect the inevitability of [Karma's] punishments and rewards."  In another place, I found a clearly written treatise on the benefits of repentance in a classical work by fifteenth-century Hindu saint Arunagirinadhar.  This document extols the virtues of repentance and its powers to focus the mind so that we concentrate on higher aspects of life: spiritual purification, in other words.

For Muslims, Ramdaan is significantly a time of repentance, a time to "[T]urn to your Lord whom you have disobeyed, beseeching Him and fearing Him, regretting and weeping ..."  A month-long fast from sunrise to sundown and including gatherings with friends for the evening meal and a three-day celebration when the month is over, Ramdaan seems to me to be a wonderfully intentional and practical way to express repentance and the desire to turn to God.  And I love the way it includes making gifts and donations as part of the fast.

The Baha'i Faith, second in the world only to Christianity in the number of its adherents, contains a central messaage of unity: there is only one God, there is only one human race, and all the world’s religions represent stages in the revelation of God’s will and purpose for humanity.  Interestingly, I could find little on repentance or Lenten-style fasts for purification, but that does not mean there are none.

So: a quick overview of four religions, three of which feature fasting and purification and abstinence as a way to come closer to Allah/God/Krishna.

And I can relate to none of it right now.  Normally I  have a deep respect for the world's religions and spiritualities.  I revel in how they seem so often to be saying the same things.  I learn new practices to add to my own repertoire, and soak up wisdom from other times and other cultures.  Yet as Lent draws near, I cannot relate to any of the ancient wisdom that upholds the virtues of fasting, repentance and abstinence as a means to spiritual growth.

Perhaps that's because I am now in the fourth month of a migraine reduction regimen that includes giving up all pain medications and being on a strict diet.  And I mean strict: no caffiene; no chocolate; no citrus fruit or bananas; no nuts or nut butters; no aged meats or cheeses; no wine or alcohol; no onions; no tomatoes; no mushrooms; no processed foods that include MSG, or "natural flavors" (a euphimism for MSG endorsed by the FDA), or citric acid - and believe me, this includes just about every bottle or jar you pull off the shelf; nothing that has fermentation in its process, like soy sauce or vinegars.  "So what," I ask myself with maryred gloom, "am I supposed to choose for a fast for Lent this year?  There's nothing left."

And when I am really in pain, which is three or four days per week, the idea of sacrificing anything for spiritual growth seems laughable.  Is not my whole life a sacrifice to pain?

When I find myself in this place of spiritual paralysis or confusion, I often use a practice that has served me well for many years now.  It is an important step on the path to spiritual growth: what I call "casting the inward glance."

I developed the practice of casting the inward glance during my fourteen years at Miriam's House.  When I found myself deriding a resident's choice, or frustrated at the way she was behaving, or judgmental about her actions, I realized that all I was doing was separating myself from her in a way that - among other things - belied and made a mockery of my words about compassion and meeting each woman "where she is."  Also knowing that this was the ego's way of asserting itself in order to prove superiority, it became imperative, in the interests of self-honesty and integrity, to look inward to my motivations and hidden agendas before judging.  99.9% of the time, this process made me realize how similar I was to the person or circumstance I was deriding, as well as how divisive and unloving I was being.

Casting the inward glance has application in every area of my life, including the subject of this post.  What do I see or hear as I look inward, beyond the voice that moans about pain and sacrifice?

The first thing I hear is the voice of the victim.  Casting oneself consistently as the victim of circumstance, other people, the weather, you-name-it, is a subject about which I have posted before on this blog.  It is a trap that is understandably and so humanly easy to fall into, yet is spiritual death, to put it rather dramatically.

I also sense a deep fatigue.  It is tiring being in pain much of the time.  How do I "do" Lent in the context of a life already seriously constricted by pain?  It seems oxymoronic.

Finally, and blessedly, I hear a small, reminding voice telling me to have compassion for myself.  It is impossible to make a sincerely open-hearted gift of a sacrifice or repenance when I am feeling sorry for myself, and the sacrifices of Lent or lenten-type fasting are meant to be joyfully raised to one's God.  There's no joyful in this whining.  Compassion: the Buddhist word is "karuna," as I have recently been reminded while reading Toni Bernhard's "How to Be Sick."  She says, in this wonderful book about which I will write posts later this month, that "...[O]ur culture tends to treat chronic illness as some kind of personal failure on the part of the afflicted ... [I had to be reminded that] this illness was just this illness and was not a personal failing on my part."  Compassion for myself opens me up to other possibilities in this Lenten season, and it helps to pull me out of victim status.

Where these practices - casting the inward glance, listening to my fatigue, and compassion - take me will be the topic of my next post.

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

27 February 2011

Guest Post - It's Not Easy Being Green When You're in Pain

Ellen Painter Dollar is a professional blogger.  You can read her at Five Dollars and Some Common Sense. She also posts at the Christianity Today blog for women.


It's Not Easy Being Green When You're In Pain


I jumped on the “green” bandwagon long before it was trendy, thanks to a naturally guilty conscience and my living in left-leaning Washington, D.C. for most of my 20s, where my church and friends were ahead of the environmental consciousness curve. I started bringing my own reusable bags to the grocery store somewhere around 1992, for example, and endured about 15 years of cashiers’ and baggers’ perplexity and annoyance before reusable bags became something that grocery stores encourage and regular people (not just those wacky liberals) carry with them.

As climate-change concerns have grown along with my family, I have continued to make green choices. Compact fluorescent bulbs: Check. Participating in a community-supported agricultural farm program to get local produce: Check. Recycling everything possible: Check. Giving away old furniture, housewares, and clothes instead of trashing them: Check. Packing the kids’ lunches in reusable bags: Check. Composting and using organic gardening products: Check. Using the car less: Ch….wait…no check. Using a clothesline instead of the energy-sucking dryer: Yeah, um, no. Having a vegetable garden: Nope, not that either.  When I learned to drive at 16, the family car offered me greater independence than I’d ever had as a child who frequently used wheelchairs, crutches, and braces. A car continues to be a primary tool for me to do what needs doing despite my pain and limitations. Sure, an automobile is necessary for any suburban mother getting her kids to and from school, music lessons, and sports practices. But for me, the car’s necessity goes far beyond that.

No matter the weather or my physical state, I can get to and from wherever I need to go. If parking lots are dangerously icy, I’m carrying heavy loads, or my knee is acting up, I can use the closest handicapped parking space to my destination. This freedom of movement, especially in New England where ice and snow create significant falling risks, would be impossible if I embraced the admirably green, not to mention healthy, practice of walking whenever possible. I feel guilty for driving my kids the one-third mile trip to our school bus stop, but walking there and back can leave me with throbbing joints, and seriously eat into my allotment of physical energy for the day. For me, the automobile—that ultimate symbol of material indulgence and environmental degradation—is a mobility tool allowing me to participate fully in family and community life. In that way, it’s akin to a wheelchair or walker, except it uses way more gas.

For two years, we hung a clothesline in our backyard and I forced myself to use it in warmer weather. But the additional physical effort required—to lug the laundry basket up the steps from our basement to the yard, hang up the clothes, go back inside for the next load, repeat the steps, then go back out several hours later to bring the dry clothes inside—was simply too much. Energy conservation is perhaps the most important coping skill for living with chronic pain and disability—learning to pace yourself so you don’t blow an entire day’s worth of physical effort before it’s even lunchtime, and perhaps end up hurting more. I eventually decided that, while the energy used by my dryer is bad for the environment, the physical energy it allows me to conserve is good for me and my family. The clothesline came down.

These are just two examples of how technology, which I recognize as both a blessing and a bane for our world, has helped me care for a family, a household, and myself within the limits imposed by chronic pain and disability.  Here’s the hard part, though. For me, being green has always been linked with being faithful. Caring for the earth is not just about ensuring that there are enough resources for the planet’s inhabitants, human and otherwise, or averting climate-change catastrophe. It is about caring for God’s gifts to us—this miraculous, beautiful earth and the creatures that dwell in it.

So when I embrace fossil-fuel guzzling, climate-changing technologies like my minivan, clothes dryer, and tomatoes trucked in from Florida instead of grown in my backyard, I feel that I’m disappointing God. Looking at the big picture, I feel that I’m, well, sinning, that I’m missing the mark that God wants us to aim toward. Looking at the small picture, though, which is my daily life in this place, with this husband and these children, with this broken, scarred, pained body, I know I’m simply doing the best I can with what I have.

This is what living with chronic pain has taught me: I am broken, physically and in lots of other ways. I miss the mark. I cannot, simply cannot, be and do all that I should. I absolutely need God’s grace, forgiveness, and neverending love (which, as a Christian, I see as most real and accessible in the life, death, and resurrection of Jesus Christ). I need to accept that there are things—good, worthy, important things—that I simply cannot do. And in spite of that, I am still loved, accepted as I am, and called to use my imperfect
resources as best I can.

That’s true for all of us, really. We’re all unable to be and do all that we should. We all leave our mark on this world, and not always a pretty one. This truth is just more obvious when our failures are failures of body rather than failures of will. Bodies are so physical, so tangible, so impossible to ignore. I’ve overcome a lot in my life, and done many things in spite of my disability—excelled in school, climbed mountains, borne three children.

But it’s the limitations I can’t overcome that have taught me the most about grace.

24 February 2011

Guest Post - Ellen Painter Dollar, Part One

Ellen Painter Dollar is a professional blogger, you can read her at Five Dollars and Some Common Sense.  She also posts at the Christianity Today blog for women.

When Chronic Pain is Part of the Family

Chronic pain knocked on my door for the first time on a December morning five years ago, though I didn’t realize at the time that it would eventually move right in, becoming a permanent member of my household. I was very familiar with chronic pain’s cousin, acute pain, and at first thought that’s who was visiting that winter morning.

I have a genetic bone disorder, osteogenesis imperfecta (OI); the hallmark symptom is fragile bones that easily fracture. I had about three dozen broken bones as a child, as well as many surgeries. They were all terribly painful, but the pain was blessedly temporary. As an adult, I have not broken any bones, but years of walking with an uneven gait due to bone deformities have taken a toll on my joints.

That morning, I was walking across my kitchen floor, heavily pregnant with my third baby. I felt a crunching sensation in my left knee and was blindsided by pain. I had my husband dig my crutches out of the closet and spent a few days hobbling around. I eventually ditched the crutches, but my knee was still painful. I went to an orthopedist who, freaked out by my pregnancy and maddeningly ignorant of my bone disorder, sent me away without even doing a physical exam. I limped around for several more weeks, gave birth to a gorgeous baby boy, found another orthopedist, and when my son was three months old, had surgery to repair my badly torn meniscus (a cartilage disk in the knee).

But that knee has never been the same. I had surgery again three years later to repair another tear, but the knee is still unstable and painful. My other knee began hurting more, as did my ankles, hips, and back—likely due to my overcompensating to protect the “bad” knee, combined with aging and the physically taxing work of caring for young children. For several months after my first surgery, I took a single strong pain pill (leftovers from my c-section and surgery) around dinnertime, to quiet the screeching pain enough to allow me to feed, bathe, and put my kids to bed. Finally, I went to see a physiatrist (a rehabilitation doctor who addresses physical injuries with the goal of maximizing function) and have been on prescription pain medicine ever since.

This was quite a change for me, who rarely even took Advil for daily aches and pains. The medication allows me to function well in spite of pain. But I still don’t function as well as I used to, and certainly not as well as my able-bodied peers (or as theologian Hans Reinders would say, my “temporarily able-bodied” peers). The hardest part of becoming a “pain patient” (besides actual pain and the continual need to prove to doctors, medical assistants, and pharmacists that I am not a “drug seeker”) is confronting assumptions, rampant in the wider culture, my community, and my own brain, about what relatively well-off, educated, loving mothers can and should do.

The cultural ideal of the “good mother,” and the pressure many modern mothers feel as they try (and fail) to live up to the ideal, has been a popular topic for female writers in recent years (see, for example, Ayelet Waldman’s Bad Mother or Judith Warner’s Perfect Madness). Many self- and culturally aware moms could easily name the ways they don’t fit the ideal—their cluttered house is not beautifully organized into color-coded bins, they don’t plan elaborate themed birthday parties, they yell, they hate playing board games and going to the playground, they let the kids watch TV and snack on cookies. In parenthood as well as work, home, and community, none of us can do everything well, or even mediocre-ly, all the time. So we pick and choose our battles, spending our time and energy on the things most important to us and learning (not always easily) to let the other stuff go.

Here is the difference, though, for someone with chronic pain. I cannot always pick and choose where to spend my energy. Sometimes, I simply cannot do things I would like to do, even things I think are important, because if I push myself too hard, I end up hurting more, exhausting myself, and courting further injury.
This inability to do, this inability to choose what to do, certainly affects my parenting. I could not, for example, pace with a fussy baby for hours because I couldn’t stand and walk for that long, particularly with an infant in my arms. I can’t carry a child over 20 pounds, and I have a five-year-old who would still very much like to be carried now and then. I can’t steady my kids on the monkey bars, play chase with them, or pull them up a hill on a sled. I sometimes beg off pushing them on the swings, doing their bedtime routine, or going swimming on summer camping trips because I’m just too physically worn out. And most of the time, I am okay with that, as are my kids. Most of the time.

But it’s not only my motherhood that is affected by chronic pain. It’s everything, every area of life. Learning to define and then accept limits on what I can do is a painful process, as I disappoint myself and others in myriad ways. In my next post, I’ll explore one, perhaps surprising, way that chronic pain has constrained my daily choices, and the hard spiritual truth that has come as a result.

Next Post: It’s Not Easy Being Green When You’re in Pain

16 February 2011

Reading "The Pain Chronicles" - Four

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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What if all this meditation and quiet mind and calm spirit that I am learning from Buddhist spirituality and Christian centering prayer is making me complacent, passively accepting of the painful fate the migraines leave me with?  This question has arisen for me before, but never more so than while I was reading Thernstrom's book.  I was struck by the active, energized and persistent approach she took with her doctors.

"I had previously undergone treatment with other doctors; each time the treatment failed, I had switched doctors again." (page 215)

"The only thing I had wanted from a doctor was a cure.  The first seven doctors I brought MRI films to were not inclined to offer this, and neither, I realized ten minutes into the consultation, was the eighth." (page 245)

My health insurance is a basic HMO which gives me only limited ability to switch doctors, but, truthfully, it had never really occurred to me to switch either from my first neurologist, whom I saw for three years before he left the HMO, or this current doctor, whom I've been seeing for another three years.  Six years with two neurologists and still in enough pain that I am not working and am living a relatively constricted life: were I like Thernstrom and other patients she describes, my doctor visit history would look a lot different.

There is a perception about meditation and acceptance and peaceful spirit that these practices encourage passivity in a person:  Oh, well, my head is splitting, I'll go meditate (or pray) and endure it.  It's my karma.  It's God's will for me.  Shiva wills it.  Etc.

If I have wondered this about my spiritual practices, it has not been too often, because most of the time I am reveling in the peaceful presence that has replaced my anxious self.  Not to mention that I do not believe in a God that would "will" either my pain or any of the various and excruciating kinds of pain in the world.  But I have wanted to explore recently the question of whether there is enough of the right kind of action in my peace.  And I think that phrase, "the right kind of action" is the key.

Action that arises out of my old anxious self is awkward, hurried, driven, off the mark.  Even if I were told that such action would lead to a migraine cure, I would likely not pursue that cure: to live life in that kind of fearful anxiety is a small hell on earth.  I'd rather be full of peace and manage the pain that isn't being cured.  Yet this is not a simplified, either-or proposition: there does exist action that arises out of the peaceful, accepting, surrendered place in which I prefer to remain.

So, "the right kind of action" means action that is founded in the deep stillness that is God's presence within, or right mind, or no mind, however one prefers to say it.  Action that arises out of the depths of stillness is graceful, deliberate, focused.  Surrendering to peace does not mean inaction in the face of circumstances that call for action, it means remaining peaceful, letting go of the inner dialogue of resistance and judgment, and simply proceeding with what is necessary in that moment.

Perhaps I would have changed doctors twenty times when acting out of that inner stillness.  Perhaps I would have turned instead - as I have these past five years - to alternatives like acupuncture, diet, and spiritual practices.  The outcome isn't the point in this discussion, because what might arise from my anxious self may look a lot like your action arising from a calm center. 

It's a matter for continued reflection and self-honesty.  Perhaps I can be more pro-active in suggesting things to my doctor, perhaps I can push a bit harder on referrals to other specialists.  It's good to keep an open mind - calmly.

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

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.