About Me

My photo

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.

23 April 2011

Equanimity About Pain is Not Giving Up

Yesterday was Good Friday, it was Earth Day.  I knew it was coming and yet I missed it completely: I spent the day on my bed - with, thank God, my little dog curled up against my knees - the blindfold on, listening to a Golden Girls DVD for diversion.  I had my quiet time and a nap on that bed and behind that blindfold, was there when my husband left for work and when he came home.

Those sentences are statements of fact.  However much they may sound like complaining, they are really just a description of my day.  I don't remember thinking much about the significance of the day, I remember staying in each moment and accepting it for what it was: a day spent managing the pain of a migraine.  As I recall it today, I am a bit bemused - where was the impatience? the anger? the feeling sorry for myself with the ice pick stabs above my left eye?

 When we are facing another day full of pain, natural regrets and even anger arise - how could they not?  It's no one's idea of a good day to lie on the bed in the dark trying not to move lest the throbbing worsen.  We have all complained bitterly about such a fate; I have tired myself out with my own whining.  Yet if the pain is happening anyway, and we know that our mental state can affect the pain, why not accept it? 

Perhaps I am learning acceptance - if yesterday is any indication, it seems to be sneaking up on me.  You'd think that wouldn't be a surprise, given the months I've been writing this blog and the number of books I've read and CDs I've listened to, all of which tend to be about relaxation, acceptance of reality, and the gift of the Now.  If I know myself, I'll be swinging back and forth between this new-found equanimity and the more habitual complaining for a while.  But hopefully, the equanimity will win out.

It is hard to give up the struggle against the pain: it seems to indicate an overall resignation to having an illness that causes chronic pain.  But yesterday's quiet and blessedly peaceful moment-to-moment calm has not made me any less determined to ask my neurologist - I have an appointment on Tuesday - whether I can try again the class of medications that often prevent migraines.  I am optimistic that the side effects may be easier to handle now that I am not working.  And I have an article about surgery, plus notes on the pain-filled 4-month regimen that was supposed to reduce the migraines and didn't.  Accepting yesterday's pain has not diluted one bit my energy for and interest in finding relief.

Think of it as the grace of God, or what Jesus said about anxiety and the sparrows; what the Buddhists call equanimity; what Byron Katie calls loving what is; what Eckhart Tolle calls the power of Now.  In how many ways have I been receiving this message for most of my life?  It finally seems to be sinking in, and there is no giving up about it. 

No, it doesn't feel like giving up.  It feels more like courage.

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

18 April 2011

Reading How to be Sick: Pain Management III

This is the tenth in a series of posts about Toni Bernhard's book, How To Be Sick - A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers.

When we live with chronic pain, we go through stages - as in most of life - of learning how to live with it, struggling against it, wishing or praying it would go away, and, hopefully, a kind of creative acceptance of what is.  For the past several weeks, the migraines have been particularly unrelenting except for a couple of blessedly low-pain days last week, and so I have had to come to a new level of understanding my pain and how to cope with it.  There is a chapter in Toni's book that is good for me to read and review at this time, entitled "What to Do When (It Seems) You Can't Do Anything."  (pp. 121-125)

I include this post as part of the pain management series because, while I practice and espouse many different methods for pain management (PM), another and just as important aspect of PM is about relieving the mental/emotional/spiritual suffering that goes along with physical pain.  Again, Toni's explanation of Buddhism and a certain practice have made a difference in my ability to learn to live with these migraines.

"... we need to look at another practice on the Eightfold Path - wise action - because it has a lot to teach the chronically ill [and I would add, those chronically in pain] about how to take care of themselves.  Simply stated, actions that lead to the cessation of suffering are to be cultivated and actions that enhance or amplify suffering are to be avoided.  Wise inaction can thus be thought of as simply not engaging in those actions that make our condition worse."  p 121

I am reminded of the 12-Step understanding of powerlessness - that accepting and naming we are powerless over some aspect of our lives or personalities is the first step to healing. 

We accepted that we were powerless over our addictions [in this case, our pain] - that our lives had become unmanageable.  (Step One)

Similarly, Toni's chapter on wise action/inaction is built upon the concepts of acceptance and equanimity, by way of powerlessness:

"I'd been getting despondent when a treatment didn't work and becoming angry when a doctor didn't live up to my expectations.  I was trying to control the uncontrollable."   p 81

I just love the synchronicity of the world's religions and philosophies: here is a very 20th-century phenomenon, The 12-Step Program with its foundational concept of powerlessness, echoing and redefining in our time the ancient wisdom of the Buddha.  (Not to mention the wonderfully surprising discovery of my 30-day retreat on the Spiritual Exercises of St. Ignatius, which reminded me at every turn of the wisdom, challenge and comfort of the 12-Steps.)

Acceptance.  Powerlessness.  Equanimity.  To a 21st-century Western adult living in a culture of just-do-it accomplishment, these concepts can seem like giving up.  But as Toni, Buddha, St. Ignatius and Bill W. (one of the founders of the 12-step Program) knew, there is great courage and wisdom in the acceptance of life as it is, in understanding our powerlessness to change most of it, and in thus coming to a place of creative action/inaction that ends the futile fight to change the unchangeable.

So it is with pain.  Our understanding of our powerlessness and our subsequent equanimity clear the way for a kind of creative inaction.  With pain as the backdrop - not denying or arguing with it but simply accepting that we cannot change it - we move gracefully into a renewed ability to choose wisely what is to be done or not done in every moment.  For me, this state - when I allow it - gives me freedom to choose among the many tools I have for pain management, none of which come freely to mind when I am un-accepting pain's presence.

The paradox that freedom can come from admitting powerlessness, from accepting what is, is a marvelous help when we are living with pain.  It leads me to remember all of the many ways I have developed over the years for managing my pain and suffering, allowing me to choose which is best in the moment.  I can:

- conduct a body scan and deep muscle relaxation
- stretch my beleaguered body a bit
- make a cup of tea
- take pain medication
- meditate and/or pray
- practice deep breathing and breath-focus
- take a warm, comforting bath
- lie down with my blindfold and a cool compress
- play one of my favorite DVDs - Seinfeld or Golden Girls 
- listen to NPR, especially Car Talk (I know nothing about cars, but just love Click and Clack)
-  listen to audio books, usually non-fiction or inspirational (Eckhart Tolle, Pema Chodron, Jack Kornfield)
- if the pain is not too bad, knit
- if the pain is not too bad, walk my dog and throw the Kong for her in the back yard.

The point is that the peaceful state of my mind and being when I have accepted my powerlessness over the pain and come to equanimity allows me to access this list of comforts which would likely otherwise be hidden beneath the layering of denial, anger, fear, or physical pain.  In a previous post, I talked about all of this in another context - "there is pain here, but I am not in pain": reviewing that post makes me realize again how much of pain management is in our spirits. 

In my next post I want to write about acupuncture and pain management.  In the meanwhile, may all persons who read this post allow peace to flood their hearts and spirits.

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

07 April 2011

Reading "How to be Sick" - Pain Management II

This is the ninth in a series of posts about Toni Bernhard's How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers.

The second section of Toni's book, entitled Accepting Pain, delves into what I believe is the first step of in-the-moment pain management.  Yet - as with most of my own pain management (PM from here on) practices - it is not just important during times of pain: it is important as a regular, recurring state of Being.  This will be the foundational point of my posts about PM and one I will repeat.  I found my PM practices to be more and more effective as I linked them to my spirituality and made them part of my every day.

NOTE: I am not a medical professional: this post is not intended to take the place of consultation with your doctor or pain management specialist.  

Admittedly, it's hard to feel pain and think, "Oh, well, I'll just accept it."  Our bodies and minds quite naturally and for good reasons - survival, for one - become alarmed at the onset of pain.  Yet when pain becomes chronic, that state of alarm soon becomes the evil twin to pain, worsening the pain as the stress of our inherent reaction fights it.  Thus, for those of us in chronic pain our best option is to learn to accept - or, at the very least, not to fight - the pain.

Toni writes succinctly about how Buddhism treats suffering in this section (pp 21-44) and since I want to get to actual practice, I will not try to repeat it all.  Suffice it to say, for the purposes of this post, that the spirituality of accepting chronic physical pain is part of the spirituality of accepting that there is suffering in all of life: what redeems the suffering is not fighting it or fleeing from it, but accepting it as a truth of all life and allowing that breakthrough to lead us to enlightenment, to freedom from our self-imposed suffering.

In chronic pain, the physical pain is bad enough - why add to it with emotional suffering?  Why deny we are in pain, or get nervous, upset, angry at the fact we are in pain when it is proved that stress increases our pain?  In acknowledgment of this, the best PM practices (aside from medications and therapies, which I use concurrently with my PM practices) are those that seek to ease our emotional and mental suffering as well as our physical suffering.

To my mind, nothing does that better than meditation, or prayer, or centering, or whatever you might call it for yourself.  Again, the methods I write about do best when part of life, not only part of PM.

I sometimes find it difficult to accept it when I feel the onset of yet another migraine, and at those moments I am just not capable of slipping effortlessly in meditation or centering prayer.  But I found that the methods I learned to still mind and body for prayer and meditation work well for overcoming the initial dismayed, denying or angry response to physical pain.

We all breathe all the time - how handy a tool is that?
Step One: Sit upright or lie back straight.
Step Two: Conduct a body scan (more about that, below) and gently relax tense muscles.
Step Three: Turning your attention to your breath, and without changing or modifying it, simply notice the duration of the inhale ... then the duration of the exhale ... inhale ... exhale ... for three to ten breaths.

The purpose of a body scan is to get us in touch with our bodies and to learn to relax the (many, many) tense muscles that we don't even know we are tensing against the pain.  I first learned about the body scan years ago from a CD that is written and narrated by Jon Kabat Zinn, and I continue to go back to that CD for a refresher.  I recommend you find a CD that works for you - there are plenty out there - and learn how to conduct your own body scan.  Once the habit is settled in, you hardly need to go through the steps - a quiet and relatively quick survey of your body is enough to start the relaxation.  I cannot tell you how helpful and effective for PM the body scan is. 

The effect of the body scan and breathing is partly to focus our upset minds away from the pain - that's why they work best if we practice them when we are not in pain.  It gives our minds a fighting (so to speak) chance when we are in pain.  Relaxing the tensed muscles helps to reduce the physical pain and also allows the mind to relax.  Relaxation of body and mind allows us to slip into meditation, prayer, no-mind, acceptance or whatever we call it.

At the end of my previous post, I quoted from Toni's book to illustrate how simple meditation/centering practice can be.  She doesn't even call it meditation or prayer - she calls it sky-gazing (page 42).  She simply lies back in the bed or in her backyard, looks to the sky, and allows an openness, a spaciousness, to liberate her.  Even if it only lasts a few seconds, those precious moments induce serenity and sense of well-being that stays with her.

I include this little story again because, to me, it takes a lot of the mystification and formality out of meditation and prayer.  I think we tend to make such practices more formal, more site- and circumstance-specific than they need to be.  Then we either stay away because they seem too formidable and inaccessible, or we only practice under particular circumstances because we assume we need the formality.

And sky-gazing can be done without the sky.  When I have a migraine, I wear a blindfold because migraines make me extremely photo-sensitive.  I cannot deal with ambient light, let alone gaze at the sky.  So I put the blindfold on and imagine myself sky-gazing.  To be sure, and back to my foundational point about these practices being part of a regular spiritual life, this would not be effective had I not made a habit of practicing meditation / centering / no mind while feeling relatively well.

Another characteristic of migraine pain - and perhaps other kinds of chronic pain - is that it makes it very difficult to focus the mind, even for the purpose of relaxation or prayer.  So I have learned to let go of my inner do-it-perfectly-or-not-at-all critic and use audio (CD) assistance whenever I need it.  There are many wonderful people out there who have created CDs and DVDs about meditation, relaxation, etc.  The website Sounds True is my main source for these.  Music and nature sounds also enhance our pain-restricted ability to relax and center. 

In my next post, I'll continue the theme of pain management.

P.S. My spell-check is not working today, and I have a migraine coming on, so I'll publish this post hoping there are no glaring errors.

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

02 April 2011

Reading "How to be Sick" - Pain Management I

This is the seventh in a series of posts about Toni Bernhard's book, How to be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers.

Although I have written posts on pain management before (July 27; September 12; September 14; and August 31),  I want to re-visit the subject in order to refresh my own practice and keep this blog updated.  Pain management is an on-going activity that becomes less effective as it sinks into any sort of habitual rut.  Plus, there's a lot to say about pain management (I'm already tired of typing that phrase, so from now on, it's PM), thus a series of posts instead of just one.  And Toni's book is a perfect place to begin.  (By the way, this is a perfect day for beginning the series on PM -- ahh, much easier! -- as I am on the seventh day of a migraine that Will Not Go Away.  Nothing like a week of serious pain as a backdrop for writing about PM.)

I say the book is perfect for beginning this series even though a check of the "P" section of the glossary yields nothing for pain or PM.  But don't let this convince you that Toni's book is not helpful, something you might think if you assume PM is about physical pain only.  It's not.  I've known for a long time - and this past week certainly reinforced that knowledge - that PM must include the emotional and spiritual aspects of living with pain, or it is only partially effective.  Concentrating solely on bodily pain is historically what Western medicine has done, which, to be sure, has provided us with a huge variety of pain reducers from which to choose.  However, we learn from other traditions such as Eastern healing methods as well as from more recent studies on the effects of prayer in healing and how placebos work, that bodily pain is only one aspect of what we are experiencing.

And that is where Tony's book serves us well.  But before turning to the book, I want to lay a bit more groundwork.

This is a blog about spirituality and chronic pain: how they interact with one another, influence one another, teach one another.  Long before the migraines became chronic, I had made my spiritual journey the most important aspect of my life.  So the idea that pain could be used to enhance that journey did not seem incongruous to me.  Additionally, a broad-based search has led this nominal Protestant through many odd by-ways, including a years-long and deep fascination with the Catholic saint, Therese de Lisieux.  Although her life and words can be ridiculously sentimentalized and, to my view, cheapened, I found her spirituality to be muscular, practical, and courageous.  She lived with terrible pain during her final years but found in it not misery, but nurture for her own spiritual growth.

Similarly, Toni has turned to her Buddhist philosophy and practice as her primary way of living with a devastating flu-like virus that has lasted more than ten years.  Redeeming her physical ills through the life of her spirit has resulted not only in her own growing wisdom, but in the book that is affecting and aiding thousands of us who otherwise can feel terribly isolated and stuck.  May these posts, in which I will share how Toni's book has affected my PM practices, serve as help and benefit to other readers.

A disclaimer: I am not an expert in pain management, so nothing I write about is meant to take the place of professional advice.  I simply seek to share my experience in the hope that it might help others.

And another disclaimer: many blogs are fonts of information about diseases and pain, pain medication, and how to deal with professionals in the health care field.  Because there is already so much information out there, I do not choose to treat those topics in this blog.  

I first want to discuss meditation as an important PM technique, but this post is already long enough, so I'll just set the stage for a next post by referring to a practice Toni writes about: sky-gazing.

"I lie down in my back yard [or in bed, looking out a window], look up at sky, and relax my gaze.  After a while, the experience takes on an openness and a spaciousness.  All notions of a separate self - in body or in mind - dissolve.   There may be a sound or a sensation of a breeze going by or a thought arising, but it is all just energy, flowing through.  Although this spaciousness may last only a few seconds, in those seconds, there's no Toni Bernhard."  page 42

Toni's sky-gazing illustrates perfectly why I find meditation to be a wonderful PM tool.  When I am in that spaciousness, the pain takes on less significance.  It is as though the spiritual connection with Being, with Creation, with the fullness of Life, grants me the feeling of a vast space that allows the point of pain to be relegated to minor importance.  And that, along with my own gleanings from meditation as a pain management tool, will be the subject of my next post.

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