What I'm Not Trying To Do, What I Must Remember

I had a helpful conversation with friend and author David Hilfiker yesterday. It impels me to continue the theme of my last post - Desiring Peace Means Practicing Peace, in which I try to clarify my January 1 post about relinquishing inner peace to nothing and no one.

David reminded me that I have a diverse readership and that what seems obvious to me -- making the choice for inner peace -- can seem an insurmountable obstacle to another. Of course, that's the premise of my last post (Desiring Peace Means Practicing Peace, link above). But what David said prompted me to add another layer of clarification and reflection.

Yes, I've made the journey from chronic anxiety to increasingly present inner peace. Yes, there was a time when the tools I now use seemed so far out of my realm of possibility that though I knew about and wanted them, I could not practice them. And so, to a certain extent, I write as a means to shine some hopeful light into someone else's dark journey: I have been there, I understand, and here's what I have done to help myself out of that place.

David was not saying this is not a legitimate purpose for this blog. He was asking me to remember I have certain advantages that some don't have. As a person who lived sunk in clinical depression for many years, he knows that -- even though I attempt not to sound patronizing or as though it's all a simple matter of developing some good habits -- I risk leaving out those for whom just making a decision to try a new meditation or call a doctor can seem an insurmountable task.

As I reflect on what he told me, I want to acknowledge two things: one is that while I've had the kind of depression that naturally goes along with anxiety, I've not ever been as depressed as he was, nor do I have any of the other mental illnesses that can cause one to lose hope. The other is that I also have advantages of the material kind that others do not.

Photo  by William Marsh

The first is self-evident. I won't explicate. But the other is one that bears some discussion. I have a comfortable, safe place to live and a loving and supportive primary relationship. I don't work and it's a good thing my husband does because my disability payments, as grateful as I am for them, don't begin to cover the expenses of living in D.C. I have the immeasurable but unseen benefits of a life-time of good health care, good nutrition, economic security, a fine education, and an assured place in society due to my race and class.

My ability to choose inner peace today is in part predicated on these benefits. With my background in working for and with those less privileged than I and the compulsion I have to find a way to extend that background through my writing, it's only right that I remember and acknowledge this.


 Thank you for reading my blog. You can comment below or email me at carold.marsh@gmail.com.

Opportunities Within the Pain

I have a lot in common with my my brother, William Marsh, whose photos you've seen here since last July. Lots of what we share is wonderful -- an understanding of the importance of mission into the world around us, searching for spiritual maturity and wisdom, and my appreciation of his ironic sense of humor.

Some things, like thinning hair, aren't so wonderful. And one, migraines, is downright awful. But yesterday, during a phone conversation, we got to talking about learning to recognize the good that can come out of having a migraine -- about things that happen, thoughts that occur, and wisdom that arises. He mentioned this photo specifically:

Photo by William Marsh

He had taken this strikingly dramatic picture one night when migraine pain awoke him and he walked out into the cool night in an effort to relieve some of his discomfort. He said that if the pain hadn't awakened him, he would have missed this gorgeous sight.

He calls it "finding the opportunities within the pain." He said, about the photo, "Out of the disorientation and pain came this opportunity to get one of the best pictures I've taken. And I sometimes have provocative thoughts, flashes of wisdom, and a unique and oft-times humorous perspective when the migraines are bad."

Although neither of us chooses or wants to have migraines, it's helpful to remind each other that there are these serendipitous moments that comprise the silver lining to the migraine cloud. Both of us would give up the migraines in a flash if we had the chance, but it's nice to be able to find the positive in them, to be aware that opportunity is there even in the pain. Plus, we get to complain with each other. Migraine misery wanting migraine company, as it were.

It's about taking the reality of your life and making the best of it. All of us, regardless of what kind of adversity we face -- physical illness or disability, emotional ill-health, devastating sorrow, loss of job or relationship -- need this skill, the ability to pick out the good amidst the bad. It's hard to talk about it without devolving into truisms and hackneyed phrases. So I'll stop, and we'll just look at Will's photo.


Thank you for reading my blog. You can comment below or email me at carold.marsh@gmail.com.

Migraine Moon

I'm in the midst of a series of migraines that don't respond to medication, not even the injection that I save for the worst. So I'm hoping this post makes sense, but if it doesn't you'll know why.

In my last post was a link to an article I found on the website, Spirituality and Health Magazine. The article, an interview with Brene Brown, interests me because it's about vulnerability.

Though the focus of the interview is not on people with chronic illness, I think anyone with a mental health issue that is difficult to resolve, or pain that won't go away, or a disease that turns life upside down, needs to learn to live with vulnerability. And one aspect of vulnerability is shame.

We feel ashamed when we can't perform up to a standard we used to hold ourselves to, or that we imagine others hold us to. We feel ashamed because people our age are out there accomplishing things and it's all we can do to manage our condition. There's shame in being the one that has to renege on a promise to participate in a meeting or outing or group activity. There's shame in trying to participate because maybe this once we'll feel well enough to stay, but having to leave early anyway.

I could go on. But whether we suffer with depression or chronic pain or a disfiguring illness or schizophrenia or addiction or a debilitating condition, we probably deal with shame. Brene Brown's interview, here, talks about shame and how it interferes with relationship. Since the isolation of chronic illness is already a problem, it seems important to understand more about things that keep us from getting close to people.

That can sound intimidating when we're suffering, the idea of connecting to someone else when we barely have the energy to be with ourselves. But here's an example of a way to connect within vulnerability:

My brother, whose photos you see in my posts, gets migraines semi-regularly. He was up and in pain one night recently and wandered out into the cool night seeking relief. He saw this moon, got his camera and took the photo. He calls it "Migraine Moon."

Photo by William Marsh

He told me about the photo in a recent phone conversation. What a neat connection, and it came out of his vulnerability, his pain, which he then thought would fit a post on my blog. It does. And I'm still in pain, thought I couldn't write much today, but am so inspired by the article I read and my brother's example of reaching out, that I've written a much longer post than I thought I could manage today.






Thank you for reading my blog. You can comment below or email me at carold.marsh@gmail.com.

25% Improvement

Earlier this summer I posted twice (here and here) about a new treatment that might improve the migraine pain.

The first post, on July 27, shared some startling feelings I had when contemplating the possibility that a new treatment (occipital nerve block) might give me a more normal life. The other, a few weeks later, shared a strong desire to be cured forever because the pain was sometimes just too much. It wasn't easy admitting, in the first post, that I had these strange feelings. I felt more than a bit ashamed of myself. And then, a few weeks later, I'm writing about feelings just as strong, though opposite.

What a roller coaster.

The update is that the nerve block has improved my quality of life by, I figure, about 25%. It might not seem like much, but it actually feels like a lot. I can hold my head up for longer and with a lot less fatigue and pain. Although the migraines themselves have not improved, eliminating the pain at the back of my head has made me more comfortable in general and resulted in better stamina as well as better ability to manage the migraine pain. What a relief. I am grateful.

I have no worries or fears like those I shared in the July 27 post linked above. I'm excited that maybe I can be more social. I'm ambitious to do more writing than I've been able to do. I have plans to begin talking to others about some sort of freelance work. Now, I know some of this may be premature, so I'm trying not to get too excited and I'm going to take it slowly. But it feels good to have some hope of a freer life.

Photo by  William Marsh

 We often have thoughts and feelings that we'd rather not bring into the light for others to see. We feel ashamed of ourselves and hide who we are. Yet the human experience is such that all of us have darker sides we're not proud of and that we think set us apart from other, nicer, better people.

One of the reasons I write this blog is to be honest about life and who I am in the midst of it. I dare to hope that others will relate to some things I say and may even feel comforted to know they're not alone.




Thank you for reading my blog. You can leave a comment below or email me at carold.marsh@gmail.com.

Pain Has No Ambivalence

Thankful that I'd made it through graduation weekend (Goucher College; Master of Fine Arts in Creative Nonfiction) with manageable migraine pain, I started out feeling philosophical yesterday about the migraine that kept me in a dark room with a blindfold on all day. But by late eveing, I'd had it with pain.

Last week I posted about some ambivalence I was feeling toward the possibility that a new treatment might reduce the migraines enough to let me lead a more normal life. Who would hire me, a 59-year-old woman who hasn't worked since December 2009? Who was I if not a woman living with  constant pain? I realized that part of me had accepted and embraced the identity of a disabled person and had, in some ways, actually come to appreciate the different choices it afforded me -- I can rest whenever I like, I have an excuse for missing things that, honestly, I wouldn't have wanted to do even if well, etc.

Last night, however, I'd come through three days of successfully managing migraine pain (which leaves one deeply fatigued) and then 24 hours of full-blown migraine and I'd had it. I just wanted the pain to stop. I wished the treatment I had posted about (occipital nerve block) had worked. Aside from relief and gratitude for being in familiar surroundings and conducting habitual routines, I just wanted to be free of migraines.The ambivalence I'd felt about getting well, last week when I was relatively comfortable, was nowhere to be found when I was in real pain.

This morning I must admit to myself that the treatment didn't work. My migraines are not reduced in number or severity. I do notice two benefits: the constant throbbing is quieter and less painful, and the back of my head doesn't ache as much.

Photo by William Marsh

It's like looking at a reflection in imperfect glass and seeing a distortion of what should be straight-forward reality. I have swung between two seeming opposites within the space of a week, first fearing the treatment would work and then wishing it had. But now is not the time to worry about or even reflect on that. I'm too tired today and yesterday's migraine is threatening to return. It's time to simply accept that this back and forth is part of life with chronic pain.

More accurately, it's part of life.







Thank you for reading my blog. I'd love to hear your comments and feedback, below. Or you can email me at carold.marsh@gmail.com.

A Link to an Article About Pain

A friend of who reads this blog pointed out a recent article about pain in the New York Times:

How To Talk About Pain

Let me know what you think!

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You can leave a comment below, through Google+, or email me at carold.marsh@gmail.com.

What Does 'Finding Joy' Mean?

When I think about the phrase, "finding joy," it occurs to me that it's a complicated idea. 'Finding' implies 'searching', and I often think of 'searching' as something I do in the world around me. Then I have to remind myself: searching for joy happens internally.

Martha Beck, sociologist and life coach, writes in her article, "How to Find the Kind of Joy That Lasts", that what we think of as joy is often excitement with an added component that's almost crazed, or at least super intense. Many of us have come to expect that excitement as a definer of joy.

This is where I, as a person who lives with chronic pain, have learned to better understand the search for joy. Like Beck, I have let go of the need for excitement, though for a different reason: when I get excited, I tend to spike a migraine. I've had to learn to allow and express joy without excitement.

Says Beck:
True joy lacks the wild ups and downs of an excitement-based life. It's a peaceful landscape, filled with peaceful thoughts and peaceful emotions. Indeed, it's so peaceful that, to our adrenaline-soaked culture, it looks rather plain. In fact, I like to think of it as the plains of peace.

As I have learned to experience joy without excitement or adrenaline-punched energy, I've found what Beck describes, that true joy is peaceful, internal, and calming rather than exciting. That's not to say there's no place for excitement in the lives of people whose health allows it. Its release of energy and emotion can be positive and even cathartic.

The point is not to conflate excitement with joy. Searching for joy always shot through with excitement is a recipe for addiction.

In recent posts, I've been writing about Buddhism's Eightfold Path. The Path encourages the internal work -- reforming how we think, speak and act -- that sets the stage for joy. This is a search humans have been on since we became conscious beings. All forms of spirituality, religion and therapy and  have their own ways of setting the stage for joy. That will be the topic of my next post.

I welcome comments below through GooglePlus, or at carold.marsh@gmail.com.

Reading Mariechild Together: Peculiar Magic

The migraines have been really bad lately, and although I determined years ago to refuse to indulge in victim-status, I admit to having felt very isolated both during the days of intense pain and afterwards. "I am in this all alone," I thought. I viewed it as a fact to accept rather than a problem to chew over. I let the regret and loneliness be, without judgement.

Today's reflection in Diane Mariechild's Open Mind -- Womens' Daily Inspirations for Becoming Mindful gives me a new way to be with the aloneness. What she is saying is that we are all in this life alone. We are all on an alone journey.

Furthermore, "I could hold the experience in my heart and let it work its magic there."

Now, I am not so sure that pain works magic in my heart, at least not in the way Mariechild means: she is talking about intense, wonderful experiences leading workshops and retreats for women. But I do know that pain works in my heart. So does sorrow, so do all the emotions I experience. If I allow them to be -- without judgment and without denying or grasping -- I give them space and time to work their peculiar magic in me.

I once attended a workshop in which the speaker was a young man living with AIDS. He said this astounding thing: "AIDS is the best thing that ever happened to me." He told us that the shock of being diagnosed had forced him to look at his lifestyle, assess his emotional and spiritual health, and begin to make great changes in his life. He would rather not have AIDS, he said, but he also knew that it had made him a better person.

I would rather not have migraines. We all would rather not have to deal with things like our own difficulties; the mental illness or addiction of a loved one; physical challenges; death and dying. Yet these are life, they are the realities with which we live. We can choose to let them work their magic in our hearts. That, to me, is the most hopeful thing about being alive.


I would love to hear from you. Please click on Comment below, or email me at carold.marsh@gmail.com. Thank you.

Redeeming Pain

Recently, someone said to me that the attention I pay to the migraines -- specifically, writing this blog -- is insulting to anyone who has "real," life-threatening diseases like cancer.  The comment seemed so beside the point to what this blog is about, to what I am about, that I tossed it aside without much consideration.  But this morning, it has come back to me as relevant for many of us living with chronic pain, and so I want to address this issue: our pain is often minimized, misunderstood or even derided by others.

(Just to put the subject to rest so I can get on with this post, I have never equated my migraine pain with the horrors of cancer and like diseases. But that migraine pain is not life-threatening is no reason to leave it unexplored or to refuse to learn its lessons.)

If seeing is believing, then the pain of diseases like migraine or, say, fibromyalgia, is not to be believed.  Ours is a society rooted in the visible, the concrete, the material.  What is invisible, untouchable, ineffable, tends to stay on the periphery.  I write about pain and spirituality, subjects that are peripheral at best; often more comfortably ignored than attended to. 

Additionally, it is so much more gratifying to deal with the fixable: the broken leg gets a cast; the degenerating discs in the spine benefit from physical therapy; the surgeon removes the problem pancreas.  There is a lot of trauma and suffering here -- God forbid I should be mis-read as minimizing the pain and difficulty of broken bones and surgeries -- but the difference between the well-documented mechanics of setting a bone and poorly understood migraine pain means that the former is healed while the latter worsens.

Finally, there's the matter of objective versus subjective: objective as in verifiable or confirmable by numerous persons; subjective as in verifiable or confirmable by just one person.  We see a surgical scar or an arm in a cast and we can agree: she had surgery on that knee, or, he broke his arm skiing.  But how to verify or confirm chronic pain that has no outward, physical manifestation?  All we have is the individual's report about pain that we cannot experience for ourselves.

Chronic pain is not visible.  It's is, by definition, not fixable (if it were, it wouldn't be chronic).  And it is absolutely subjective. 

Kind of like the life of the spirit.

We are human, we sufferers of chronic pain.  We whine every once in a while.  We get depressed when a promising new medication has no beneficial effect.  We become angry at our restricted lives, friendships neglected, jobs lost, parties unattended.  We suppress a sigh at yet one more doctor who stands, long before we have our concerns and questions addressed, with his hand on the doorknob while mumbling about not being late for the next patient.  We get tired of people telling us how good we look, as though this proves we must not be in very much pain; or implying we should just suck it up and get on with life; or insisting that our pain is not worthy of consideration because we are not dying.

So what redeems the pain?  Perhaps we are in an unfixable and subjective situation, but can we not refuse to remain invisible?  And how to do that without indulging in self-pity or assuming the victim role? 

We let the pain reach us, teach us.  We do precisely what the world wants us not to do.  We do not just go away because we make others uncomfortable: we pay attention to our pain and we share what we have learned.  We let it incise its way into our spirits and into our spiritual lives, carving out that place that is then ready to receive the wisdom, presence and peace that have arisen from our refusal to deny our reality.

We allow our our pain to be our greatest teacher.


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

"The Power of Now" and Pain: Identifying with Pain

Twelfth in a series.

It is insidious, really, how easy it is to become identified with a life circumstance like chronic pain. There is nothing shameful about it -- we all do it by finding our identity in such things as our work, family, wealth, intelligence, experiences -- and Tolle says that our egos bear the responsibility.  The ego will grasp at anything to give it identity and meaning.

"Another aspect of the [suffering] that is an intrinsic part of the egoic mind is a deep-seated sense of lack or incompleteness, of not being whole.  In some people, this is conscious, in others unconscious.  If it is conscious, it manifests as the unsettling and constant feeling of not being worthy or good enough.  If it is unconscious, it will only be felt indirectly as an intense craving, wanting and needing...people will often enter into a compulsive pursuit of ego-gratification and things to identify with in order to fill this hole they feel within." (page 45)

If we are in chronic pain, there's not a whole lot to grasp on to.  In many cases, we have lost huge chunks of our lives: careers, relationships, income, and freedom of movement.  But what Tolle tells us is that, as counter-intuitive as it seems, we are still compelled by our egos to clutch at something to identify with.  For the insecure ego (and the ego is, by nature, insecure) being in pain is as good as anything else.

Here are some of the ways I catch my own ego grasping at the identity straw (I list these things because (1) it's good for my self-honesty to get them out there; (2) it strengthens my awareness, which helps to bring me into the Now; and (3) maybe you will recognize yourself and be relieved that you are not the only one):

1. Talking about my symptoms.  It is amazing how often I repeat the litany of what is wrong: why pain, where pain, when pain, how much pain.  Sometimes, I am sure, it makes sense -- for example, when my doctor asks me, or when another migraine-suffering soul wants to compare notes and connect.  However, there are many other times when I begin reciting my woes with very little provocation.  And sometimes, once I get started, it is really hard to stop.

2. Garnering sympathy.  I never knew it until my husband pointed it out to me (bless his heart), but I have certain dramatic tendencies in the way I talk about and relate to the world around me.  This served me well when I was on stage, back in another life, and still has its uses for story-telling and otherwise participating in a fun evening with friends.  But it loses its allure when I indulge in drama as a way of getting sympathy.  I am canny enough to be subtle about it, but it is still happening, and I do feel chagrin when I catch myself.

3. Fear.  Tolle says that the insecurity of the ego has its greatest outcome in fear.  "Because of its phantom nature, and despite elaborate defense mechanisms, the ego is very vulnerable and insecure, and it sees itself as constantly being under threat." (page 44)  This means that because my ego grasps at the person-in-chronic-pain identity, it fears having the pain taken away.  If my migraines are cured, my ego reasons, who am I?  No one.  I am dead.  How unsettling is that?  When it comes right down to it, there is a part of me that DOES NOT WANT TO GET WELL.

Phew.  It feels good to get that out there.

But now my head is hurting from all this honesty.  (See how I use my identity as person in pain to bring this post to a close?)  In my next post, I'll write about becoming aware of the ego and its machinations.


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

The Power of Honesty

I wanted to write a post this morning.  I thought I'd follow my usual routine of reviewing my notes in Eckhart Tolle's The Power of Now, then spend an hour or two writing a post, the eleventh in this series.

Except that, come right down to it (come write down to it?), I am unable to muster the energy because this morning I have a migraine, which is not unusual; and I am low in spirits, which is unusual. 

I don't care to act the victim, or at least I try to catch myself when that temptation arises.  So I'm not vying for sympathy, here.  It's just that some days are harder than others, and there's no clear reason why, it just simply is that way.  I don't judge this mood, I don't wish it away, I take a deep breath and accept it as what is Now.  I am human, though, and I cannot resist just this one comment:

Chronic pain sucks.

"The Power of Now" and Pain Management: Resistance

Seventh in a series.

It took me a long time to learn what Eckhart Tolle meant when he said:

The [suffering] that you create now is always some form of nonacceptance, some form of unconscious resistance to what is.  On the level of thought, resistance is some form of judgment.  On the level of emotion, it is some form of negativity. (The Power of Now, page 33)

The purpose of this series of posts about Tolle's book, The Power of Now, is to relate what he has to say about suffering, our minds and egos, and the present moment to life in chronic pain.  And what Tolle says about suffering and how we bring it upon ourselves has possibly even greater relevance -- or, at the least, urgency -- when we are in physical pain.

NOTE: Tolle tends to use the words, "suffering" and "pain" interchangeably.  For myself, and for the purposes of clarity, I like to keep them separate: suffering is what we cause ourselves and is mental or emotional; pain happens with illness or injury and is physical. 

So, back to the quote above -- specifically, what it means if you are living with chronic pain.  If the suffering we cause ourselves is some form of nonacceptance, a kind of unconscious resistance, isn't your first reaction to say, "Damn right!  The [whatever form of chronic pain you have] is killing me and I hate it.  I do not have to accept this pain."  That's natural, in the way it's natural to snatch your hand back from a hot burner.  Our ingrained survival habit is to flee or get rid of the pain, and there are all sorts of bodily responses that go along with that habit, including adrenaline rushes and muscles that leap into action.

But.  In the case of chronic pain, just because it's natural doesn't mean it's good for us.  These natural and inherited responses to pain become problematic with chronic pain because although perfectly understandable, they cause more pain.  I have written about this vicious cycle in several other posts, but in this and the next post I am focusing on the two forms of resistance as Tolle talks about them: thought, which is judgment; and emotion, which is negativity.

JUDGING PAIN
Tolle does not say that thinking and judging are bad in and of themselves.  But when they are habitual and unconscious, they take over our perceptions and bring us suffering.  Thus, when we have chronic pain, we judge it and in judging it, make it worse.

When I worked with recovering addicts, they would share about the trouble they caused themselves when they "got all up in their heads."  I like this phrase as a way to relate to suffering.  When I am all up in my head about a migraine, my thoughts go something like this:

"Oh, no.  This is not good.  It's coming, a right-side migraine, the worst.  It's already pounding.  Another day curled up on my bed with the blindfold on...how will I walk the dog?...and there's nothing to cook for dinner...can't go to the store now...starting to feel sick and how can I take the medicine on an upset stomach?"  I could go on with this, but I'll spare you.

The more I think like this, the more tense my muscles become in response to the mental stress.  The more tense my muscles, the more pain in my shoulders and neck, which makes the migraine pain worse.  And there's more.  As I think in this way, I become anxious, my stomach becomes more upset, my heart beats faster and that makes my head pound more.

So, I am all up in my head and the pain that I am judging so harshly and thinking about so obsessively is worse than it was before I started all the thinking.

It's time to learn to stop obsessive thinking and to re-frame the judging of the pain.  Meditation, meditative breathing, and practices such as yoga and chanting are my tools for halting obsessive thinking.  The resulting calm and quiet mental state is perfect for re-framing the judgment, although usuallyit's not needed because the mind is still.  But re-framing, if needed, would go something like this:

"A migraine."  Deep, slow breath.  "First, walk the dog, then find the blindfold, remember the glass of water."  Deep, slow breath. 

Pain felt in a relaxed body and mind is much easier to take than pain felt in a tense, upset body and mind.  It's as simple as that. 

The next post will be about emotional resistance to pain.



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

Everyday Angels

To be independent, to gain self-sufficiency and to be in control of one's life: these are highly regarded and sought-after qualities for many of us.  They are laudable qualities.  They are also traps that potentially keep us from recognizing one of the amazing blessings of life - the presence everyday angels who are there, quietly and without fanfare, to help us when we are in need.

Recently I traveled to Connecticut for the wedding of a dear friend.  Not having traveled much without my husband - who understands and lovingly cares for my needs when I am in pain - I wondered how I would manage the trip.  But the wedding was too important for me to stay home so I went even though Tim could not go with me.  It was a beautiful and joyous weekend, one in which I re-connected with old friends, rejoiced with Stephanie and Jal and their families, and - not unexpectedly - dealt with migraine pain most of the time.  It was a weekend in which I met everyday angels at every turn.

This is, like most things in life, a mixed blessing.  I'd really rather just be able to be independent, make my own plans, do my own thing.  This part of me feels embarassed at having to ask for help and to admit that I cannot simply pick up and go like other folks.  This part of me resents my dependence on others. 

This part of me also isolates me under the guise of self-sufficiency, a wonderful concept that loses its wonder in a life of pain.  I struggled with my ego and its need to be competent and in charge while all around me, my pride notwithstanding, angels appeared.

My first angel was the bride, Stephanie, who, in response to my email full of concern about how I would get from the airport to her home town, connected me with two guests who also live in D.C.: Premila, sister of the groom, and Laura, long-time family friend.  Stephanie also ensured that I had a place to stay at the inn for out-of-town guests that also was to be the site of the reception.  Having made up my mind rather late, I might not have secured a room at the Wake Robin Inn had Stephanie not made a quick reservation for me and immediately connected me to Inn staff.

Premila and Laura proved to be wonderful travel companions, not at all concerned that I couldn't share in the driving of the rental car (air travel being a never-fail migraine trigger), and understanding of my inability to attend the Friday picnic.  Premila called me from the picnic to offer a plate of food, and Laura delivered that plate to my door. 

Saturday's wedding on a hill at Stephanie's family farm was lovely.  The bridal party arrived in a wagon towed by an antique tractor; guests were transported from the parking area to the hilltop in another tractor-pulled wagon; the setting was beautiful and the music perfect.  At the reception in a tent on the Inn grounds, I had the most fun I'd had in years.  Yet it was no surprise to wake up Sunday morning with a migraine.  The late night, loud music, flashing light bulbs in the dark venue, and food made with ingredients not on my migraine diet made for a perfect migraine storm.  And I would not have missed it for anything.  You learn to make these comprimises when you have chronic pain, otherwise your life would be just awful.

So Sunday morning I struggled up the hill to the Inn where I thought breakfast would be served at 7am.  I really needed my morning tea and a bit of food, part of my pain management regimen.  But when I walked in and was told that breakfast did not begin until 8am, my face must have registered serious dismay because Shaffin, the staff person with whom I was speaking, urged me to sit down while he went to the kitchen to see what he could do.  Making me comfortable in a corner of the room and thoughtfully turning off the light above my head, he moved away with a promise to return soon.

It's hard to sit up with unsupported head and neck when a migraine is at full force.  It's hard to be without the soothing routines of home and readily available comfort measures.  It's hard not to feel sorry for oneself, so when Shaffin came quietly back carrying a tray with teapot, fruit and a muffin, I felt tears of gratitude arise.  "My angel," I thought. 

Later, during the luncheon at Stephanie's parents' house, I was carfeully ensconsed in a comfy recliner by John, father of the bride, and checked on by Eileen, mother of the bride, and Jal, the groom.  "More angels," I thought.

It was good to lie back in that reclining chair, comforted by the breeze from the window Eileen had opened for me and listening to the chatter from the back porch.  It was sweet to hear those companionable sounds and I felt blessed to be there.  I felt blessed by Stephanie, Premila, and Laura, without whom the trip would have been almost impossible.  I felt blessed by Shaffin, Jal, Eileen and John, who made the pain easier to bear. 

I am not independent or self-sufficient.  I do not have the ability to do for myself without relying on people to help me.

I have something better.  I have angels.


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

Balancing Rest and Activity

Having chronic pain is fatiguing.  Physically, we are worn down by the pain whether or not we have been active.  And even that word, activity, is relative: if we have the kind of pain that is exacerbated by activity (usually the case for my migraines) then our idea of activity becomes pretty restricted.  Yet, as my Mom said when she had a bad case of Lyme Disease a few years ago, "You can't just lie around all the time."

Pain with inactivity is as debilitating emotionally and spiritually as it is physically.  I have felt the depression and feelings of "poor me" rise up almost automatically during a period - anywhere from two to seven days - of a migraine that won't go away, especially if I have succumbed to the pain and fatigue. 

But how do we balance the requirements of our pain - to rest, stay quiet and use our pain management skills in peace - with the requirements of physical, emotional and spiritual health?  For me, this has been a journey of discovery, of trial and error.

PHYSICAL ACTIVITY
During 2010, after I left my job at Miriam's House , I thought that lots and lots of rest was what I needed to encourage the migraines to subside, if not go completely away.  I did need a lot of rest - that was 17 years of a very difficult, although much-loved, job - but not for the migraines.  They continued as before.  The change I noticed was not in the migraines themselves but in my ability to manage the pain.  Better-rested (another relative phrase, as sleep interruption often accompanies pain) and able to take the time to experiment, I learned tools and skills in pain management, most of which I have shared in previous posts on this blog. 

I learned that when I am rested, I have more options for physical activity and health, such as a bit of gardening and walking my dog in the park.  And even though these activities often do make the pain worse, I have also learned that, for my emotional and spiritual health, it is often well to make the choice for a time of activity that may exacerbate the physical pain but is worth it in terms of the emotional benefits.

EMOTIONAL ACTIVITY
Chronic pain is isolating.  So often it just seems far too taxing to make that phone call, or check - let alone answer! - the emails, or write that post.  In order to hold the pain at bay, we choose not to reach out.  Yet friends, family and those warming, loving connections with others are major components of emotional health.  Although the temptation is to avoid these activities because they leave us even more fatigued and/or in greater pain, the fact is that developing a balanced way to include them in our lives will actually help the pain by improving our emotional health.

FINDING THE BALANCE
I think the trick is, for physical and emotional activity, to experiment and find our own balance.  For me, walking the dog and doing a load of wash may be all I can do before going back to the couch or bed for a 2-hour rest.  For you, getting up and going to the kitchen to sit at the table for breakfast may be the sum of your activities for the morning.  One phone call will leave me light-headed and needing to lie down; you might be able to talk for hours as long as you are resting as you do it.  And, goodness knows, these parameters can change day to day: yesterday's migraine that left me wrung out and weak may today feel like the same migraine, yet I am able to bake scones, put dinner in the crockpot and walk the dog without collapsing.

The key to balance is, for me, being gently understanding of the inexplicable ups and downs of life in chronic pain.  The less judging I do of myself and my abilities, the more I am able to try different tactics, not to mention to forgive myself with a wry grin when something I was sure I could handle turns out to be too much.

I think there are several benefits to this gentle understanding:

* When gentle understanding ("I thought I could handle this ... it's sad that I can't, but I'd better go rest.") replaces harsh judgment ("What an idiot I am ... why did I think I could do this?"), we are bringing into our hearts and spirits a spacious allowing that expands our creativity and our ability to love.

* With greater creativity that comes from allowing and understanding our limitations, we become able to develop pain management and life skills that enhance the quality of our lives.

* This spacious allowing pervades other aspects of our emotional and spiritual lives because the truth is that what makes us impatient and unforgiving of ourselves also makes us impatient and unforgiving of others.  This sort of healing begins in our own hearts toward ourselves.

For me, all of these things point toward greater spiritual health.  And that 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.

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.

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.

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.

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.

Living in the Present, We Create Our Future

The title of this post is a quote from a book I am reading by Thubten Chodron, Open Heart, Clear Mind.  I love the idea and spirit of it so much that I decided to make it the subject of a post or two, and to explore what it means when the present includes - at least in one of its aspects - being in pain.

The sentence occurs on page 95, in the chapter on Karma.  Here is the sentence that follows it:

"We have the ability to determine who we will be and what happens to us and to ensure happiness for ourselves and others."

I am not writing this post as a debate about karma vs. predestination vs. original sin vs. the resurrection of the body, or any other doctrine that seem close in spirit.  I'll simply say that I find it fascinating how many similarities I can find just between Buddhist and Christian beliefs and how, as I read this book, Biblical scriptures often come to mind as apt illustrations of what Thubten Chodron is saying about Buddhism. 

But for today: what does it mean that living in the present creates my future when my present seems mainly to be about pain?

First - it means that the choices I make in reaction and relation to a migraine affect my next moment in a way that I experience immediately, and also affect my spirit in ways that may not be apparent now or in the future.  Obviously, if I choose to moan and complain, tensing my mind and my body around the pain, the next moments and hours will be a lot less bearable than if I choose to breathe slowly, practice deep muscle relaxation and accept the pain without judgment or analysis.  Not so obvious is the potential for this practice to open my spirit and my heart to wisdom and compassion, attributes that are a long time in their development, yet which rely on small moments of wise choices for their blossoming.

Second - it means that, having practised wise choices in a present that includes pain, I am more able to make wise choices in a present that includes other sorts of discomforts.  In this way, practicing wisdom and compassion during a migraine helps me to almost automatically practice wisdom and compassion during a difficult conversation with a friend, if I choose to connect to that wisdom in the moment.  And what is really noticeable and beneficial is that making these choices in hard times can mean that such quiet and centeredness gradually becomes a part of me without much effort.  It's almost as though the practice in pain makes the practice in non-pain a piece of cake.  Who wouldn't be able to breathe in and quiet the body and mind during a long walk on a lovely fall day, if the usual practice is to do so during debilitating pain?

Lest I sound like I am approaching Buddha-hood, let me honestly state that these changes are manifest mostly in the realm of inclination.  I am not constantly centered and calm and at peace with the moment - just ask my husband.  But the change toward greater peace and inner stillness is marked enough that I notice two things about it:

(1) that it becomes gradually easier to choose this inner state at any particular moment, and;

(2) that when I am in a less settled state, I am not only more readily aware of it, but less and less comfortable with remaining there.

That degree of un-comfortability with what used to be my normal, unaware state (a certain level of anxiety accompanied by random, running and constant thinking) has become a strong motivation for change.  And that will be the subject of the next post.

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

Feeling Guilty for Our Pain

This week a thought arose in me without warning, bubbling up and surprising me because I thought I'd finished with such feelings:

"What is wrong with me?  What am I doing wrong?"

It was on Friday morning, after I'd lost most of Wednesday evening and then all throughout Thursday to Friday morning to a really, really bad migraine.

I call them "crashers", these migraines.  But that is not the point of this post, because I'd like to explore the feelings of guilt that were in me when I faced Friday still in pain.  As I said above, it caught me by surprise, even though I know that it is typically such unguarded and vulnerable moments that have special power as teachers.

The guilt was about two things that I can see at this point, now that it is Saturday morning and I am blessedly free of that pain.  The first was about my body's inability to handle strong medications; the second was about the many tasks not getting done while I lay in pain.  I had begun a new, prophylactic medication called Lamictal on Sunday after having tried several others in recent years that proved too strong - even at the smallest doses - so that I could not tolerate the side effects.  I was afraid this headache was a result of the Lamictal.  And the laundry was sitting, still dirty, beside the clothes washer, I hadn't been grocery shopping, etc.

Aside from those details, what about guilt and pain?  Why do we have feelings of guilt about something that is absolutely out of our control?  You may recall from other posts (28 September, 2 October) that one of the ways to handle chronic pain is to choose one's reaction to it.  That, I believe, is in one's power: the pain itself, most often, is not.  Once we have chosen a constructive, proactive and management-type reaction to the pain, why the guilt about having it?

This is a huge subject - spiritually, socially, metaphysically, emotionally - and I do not at all think that I can explore and explain what smarter minds than mine have been considering for ages.  So I am not trying to write a treatise, but I am wanting to explore and work with the guilt that can go along with chronic pain in this and the next few posts.

There are some fairly simple answers to the emotional component.  Many a parent or responsible adult - myself included - have impatiently indicated to a child that their pain or upset is not real: "Oh, you're not really hurt that much."  "Just hush."  "I'll give you something to cry about."  It simply is not possible to respond to each moment in the emotional roller coaster of a child's life with complete sympathy, and so sometimes the message is that the amount of our pain is somehow our fault.  The adult version of this is, "Just talk yourself out of the pain."  "You seem fine to me." 

Additionally, there are many things in life over which we have assumed control - or, at least, the illusion of control.  We have overcome odds in order to complete our education, or to start a new business, to be in recovery over our addictions, to get out of a destructive relationship, living space, etc.  We begin to believe what our society believes, that if we only apply ourselves, or really want something, or stop being self-indulgent, or just say or think the right thing, we can control all situations.  Life has given us lemons from which we have made lemonade, and we are justifiably proud of that.  It's just that our ability to move mountains becomes puny and ineffective when it comes to stopping chronic pain.  And so we feel guilty.

I recently found a website (thanks to a suggestion from my sister, Joan Sparks) in which there is a page devoted to 12 Steps of Living With Chronic Pain.  Based on the 12 Steps of AA/NA, these steps are wonderfully full of wisdom that takes the guilt - our own and that imposed on us by others - and then clearly indicate where we do have power, where we can grow in emotional health.  I will not repeat all the steps here because the link above taking you straight to them, but I do want to comment on several of the steps in the context of this post.

The second step begins with the words, "I refuse to feel guilty ..." and I just love the strength in that.  Although it surely takes a while to get to the point of being able to internalize and actually believe them, these words go directly to the heart of where we do have some power.  After the first step focuses on our powerlessness over the pain, the second step heads straight to one of the most debilitating points of our emotional reaction to being in chronic pain.  Then it goes on to use the phrase, "... that limits but does not stop my life."

This is encouraging to me.  Yes, my life is limited: Tim and I had to cancel dinner with dear friends on Thursday evening, and that was only the most recent example of what is a regular occurence for me and for us.  Plans with me are tentative because the migraines limit my ability to be up and moving.  But that does not mean I never make plans, and I am grateful in a way that is also beneficial to my spiritual life when I can do the simple things that I should guess are taken for granted by folks who do not live with chronic pain.  Being able to walk a few blocks to the grocery store to pick up fresh fish for dinner is a joy to me.  Would I notice the way the sunlight plays on the tree leaves and the way the their bright green makes beautiful contrast with the blue sky if this were something I could do every day whenever I wanted?  I think not, knowing myself.

I like the realization that while my life is limited by pain it is not stopped by pain, and actually take some pride in knowing that there are often times that I am in pain but choose not to cancel plans.  Furthermore, I can choose, to the best of my physical ability at the time, to act as though I am not in pain.  My best friends can always tell anyway, but I do believe I fool most of the people most of the time.

So the laundry takes 4 days to get done - it IS getting done.  So we eat a lot of leftovers because I have learned to cook large amounts for dinner, not knowing if I will be able to cook the next day - I DO cook.  So I had to cancel dinner plans this week - I WILL get out today with Donna for a visit to LOOPED, our friend's new yarn store in DC.

If we can honestly say when the pain is too much and just as honestly rejoice when we can accomplish even small things, then we are enhancing our ability to live in a healthy way with our chroic pain.  It is not a matter of one or the other, and that is where I think it is easy to lose perspective.  It is both/and:  pain stops my life some days AND it only limits my life some days.  Knowing this helps me to take responsibility in my life, about which I will which in my next post.

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