A Burden Shared

I wrote in yesterday's post about how the prospect of a new (to me) treatment for migraines had stirred up some ambivalence and emotions that surprised me. Today, I will have that treatment at 12 noon.

(For other migraineurs: I have been diagnosed with occitiptal neuralgia, which may or may not be contributing to the migraines but certainly is causing me pain in the back of my head. The treatment is occipital nerve block: an injection of local anesthetic and steroids into the base of the scalp where the occipital nerves come up through the neck.)

The 12-Step program has a saying, "A burden shared is half a burden." In my long acquaintance with the 12 Steps, I have come to appreciate the intuitive wisdom in sayings that may seem, on the surface, to be trite and simplistic. And yet here is yet another instance in which one is proved true.

After writing yesterday's post, I felt relieved. After an email from my sister-in-law, a comment from a dear friend, and a conversation with my husband, I felt heard. And this morning, I feel better than I did yesterday. There's no magic. I am still aware of ambivalence, and am a bit more nervous now that the treatment is just hours away. The change is mostly in how I handle the ambivalence and nerves. Today, I'm able to simply accept them without worry or upset. It's what the Buddhists call equanimity, about which I have posted before. Equanimity offers a spaciousness in life, a perspective that is calm and understanding and, in a weird way, joyful.

Photo by William Marsh

Jesus talked about the peace that passes all understanding, which is surely the Christian version of equanimity. It really is the wisdom of the ages, and how grateful I am that I have been exposed to it.


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

 

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.

Motivation for Change: Envision Another Way to Be

The 12-Step program calls it "sick and tired of being sick and tired."  Many recovering drug and alcohol addicts have told me that they could not make the choice for sobriety until things got so bad in their lives that they were motivated to change by their disgust with themselves or with how awful they felt.  This happens at a different point for everyone - your rock bottom may be my half-way down - but when you get there, you know it.

To me, part of the genius of the 12-Step program is how applicable it is to other situations in life aside from the alcohol (and then drugs) for which it was created.  There exist such programs now for codependence, anger, shopping, etc.  I used the 12-Step program to aid in my recovery from flaming codependence, and am now using its principles - along with other methods - to help me with my chronic pain.

Wait.  How does having chronic pain equate with being a drug addict or alcoholic?  How does living with three or four migraines per week remind me of codependence and the need for recovery? 

It's not so much about a one-to-one comparison between getting migraines and being codependent, it's about how the spirit of the 12-Steps helps me cope with a situation over which I feel powerless.  There are two main ways that this happens, one of which I have blogged about before (see Befriending Pain: Part 3, 21 September), and the second of which is the topic of this post.

ONE - It helps to bring me out of victim status.  TWO - It helps me envision another way to be.

ENVISIONING ANOTHER WAY TO BE

There are many ways to respond to chronic pain, and I have probably hit on all of them at one time or another: feeling victimized; depression; denial; pushing through until I am really sick; giving up and going to bed for a few days; pretending everything is all right; pretending everything is awful.  Bouncing around emotionally is not conducive to the inner peace that attracts me and that I desire for myself, so there came a time when I realized I was tired of the chaos I was either creating or allowing to happen inside me. 

I have called upon a variety of support systems such as faith, spirituality, yoga, accupuncture, medication, meditation, prayer and relaxation, many of which I have blogged about and each of which has helped me in its own way.  What makes the 12-Steps particularly relevant to this post is that from the peace that my spirituality, its practices, the accupuncture and yoga afforded me, the 12-Steps then allowed for the vision of another kind of change.

For chronic pain, that change has to do with leaving behind the emotional roller coaster (although I do think it necessary to take a few rides on it before being willing to change), claiming an inner peace that is wonderfully present whether one is in pain or having a good day, and learning to stop allowing one's own pain to cause pain to others (in the form of impatience and anger, emotions that are all too prevalent with chronic pain).

There is another benefit: a kind of constructive energy that helps me to learn how to use the resources I have in new ways.  For example, I cannot hold down a job, given the upredictable and debilitating nature of the migraines, but I can take a couple hours at a time to write a post or work on other writing.  Working only a couple of hours at a time might seem lame, or even giving up, but when the alternatives are pushing through until I am thoroughly sick or lying around until I am thoroughly depressed, a couple hours at a time is a wonderful solution.

So, I am helped to see the possibilities for not only coping with the pain in better ways and for building better relationships with others, but for a life that does encompass constructive work and accomplishment.  This is not about quantity at all, which, in a city that idolizes long, long work days and amount of power, is kind of a radical statement.  Which is another benefit of all this: I have learned that two hours of peacefully focused work is no poor substitute for 12-hour days: it is just right for me.

Taking Responsibility Without Feeling Guilty

In yesterday's post, "Feeling Guilty For Our Pain,' I provided a link to the 12 Steps For Chronic Pain.  I provide it again, as I'll be using the steps in this post as well:

12 Steps for Chronic Pain

One of the questions I have worked with as I have learned to live with the migraines is this:  How do I see clearly and name where my responsibility is without feeling guilty?  In yesterday's post, I talked about the ways we can both make ourselves and be made by others to feel guilty about our chronic pain.  There are steps we can take to understand how destructive this is and to keep ourselves from getting sucked in to this kind of thinking.  It's bad enough to deal with the physical pain without adding the emotional and spiritual pain of guilt and its counterpart, shame.

Yet there are areas in which I do have some control over how I use what I have learned about pain and about migraines to alleviate the pain or to make its effects less overwhelming.  For example, my diet, how much sleep I get, and what I do when I feel the pain building in my head.

So what about when I eat a piece of birthday cake at about 4:00pm, long enough after lunch that my stomach is empty, when I know that having sugar on an empty stomach causes a migraine?

What about when I stay up late to watch a movie, knowing that watching TV can trigger a migraine, as can changing my sleep habits too much?

If I get a migraine within half an hour of eating cake in the afternoon, then I can be pretty sure that I am responsible for that migraine.  I know this from my own experience and from what I have read about migraine triggers.  I suppose I could feel guilty about it, or let a friend who knows me well enough shame me with the obvious - "You knew you'd get a migraine if you ate that cake."  But I'd rather not allow that, because shame is destructive and guilt feelings do not teach me or help me progress.

For one thing, it is completely understandable that every once in a while I am tired of avoiding cake while everyone is celebrating, or that I can't resist if it's a chocolate cake.  It helped me to understand the residents of Miriam's House when I worked there, especially the women told they should not eat fried or fatty foods.  When they walked into the kitchen where other residents were frying dinner, it must have been almost impossible to resist fixing their own fried dinner - as comfort food, if nothing else.  If I have trouble resisting the occasional piece of cake, how can they resist the daily smell of frying food?

So, we are human.  We want certain things and don't enjoy substitutes or changes when it comes to food, or coffee (tea, in my case), or our work habits, or our shopping habits.  And even migraine pain is forgotten in the moment that iced and decorated slice of birthday cake is offered to me by the birthday woman in the community. 

Thus we have the Third Step (see link above) that talks about a "fearless inventory" of the past, of relationships, and of work.  The object is to come to peace with the present by being honest about the past.  One of the features of chronic pain is that it limits our patience or it stimulates our anger, and quite often, those emotions spill out onto those around us.  Frankly, I finally became so tired of picking up the pieces of the hurt feelings I'd caused at my work that I became adept at realizing when I'd hurt a co-worker and ready to apologize for what I'd done.  Gradually, I learned to rise above the pain so that it would not show in my manner.  But that took a long time, and left me with a lot of inventory-taking to do.

To circle back to the topic of this post, we need to take responsibility for the ways in which we cause ourselves pain, too - like the birthday cake migraine.  The inventory of this Step Three need not only be about the big things like relationships.  It can be a simple, daily, clear-sighted and non-shaming review that shows us where we have faltered and allows us to imagine behaving differently the next time.

To summarize: I refuse to feel guilty about having chronic pain, and I will proactively take non-shaming responsibility when I understand that I have caused myself, or another, pain.  A regular and simple review process is helpful, and that 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@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.