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

24 October 2010

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

14 October 2010

A Simple Inventory: Responsibility Without Shame

No, I am not responsible for the fact that I have chronic pain - for me, that means chronic migraines.

Yes, I am responsible for sometimes acting in ways that trigger migraines.

These two statements are not mutually exclusive.  In my previous post (12 October), I wrote about taking responsibility without shame in the context of acknowledging that I sometimes take a piece of birthday cake at 4pm even though I know that sugary foods on an empty stomach usually trigger a migraine.  The question is how to deal with this without shaming myself, which is destructive, but by taking realistic responsibility, which is constructive?

For me, it's a quiet, reflective time that opens a clear-sighted look at recent choices and behaviors without falling into guilt and shame.  The method?  One I learned when I made a 30-day spiritual retreat based on St. Ignatius'  Spiritual Exercises.  I am not Catholic, and I really am not sure most people would call me Christian any more, but I love the simplicity of what is now called the consciousness examen, or examination of consciousness.  Although centuries old, this practice reminds me strongly of the 12-Step practice of "taking inventory" that is the Fourth Step, and that continues throughout life in recovery.

Here is a link to some descriptions and articles about it: The consciousness examen

Below is a simple list to use as a guide:
1. Become aware of God’s presence.
2. Review the day with gratitude.
3. Pay attention to your emotions.
4. Choose one feature of the day and pray from it.
5. Look toward tomorrow.

I believe that it does not matter how you read the first step: whether you imagine the traditional Christian God, or Shiva, or Allah, or Jehovah, or the Divine Creator, Mother God ---- you get the idea.  Just become aware of What or Who it is that brings you to your spiritual center.

St. Ignatius made gratitude the beginning of all his spirituality: the Spiritual Exercises begin with a day or so of gratitude, as does the consciousness examen (second step, above).  I have found it to be a wonderful practice that relates so well to the 12-Step idea of the "attitude of gratitude."

Paying attention to emotions includes being honest about naming them while trying not to label them negative or positive.  This third step is most helpful to me when I make it less about searching for all the ways I have messed up during the day (or all the ways I have been wonderful), and more about simply getting quiet and allowing emotions to arise in me.

Out of these arising emotions, one usually seems more insistent or calls to me for attention, so that is the one I bring to the fourth step

The fifth step, the look toward tomorrow, is about learning from the meditation and prayer of the process so far.  If what has arisen involves the memory of losing my temper, ignoring a need, succumbing to addiction, etc., then it is positive and constructive to imagine behaving differently tomorrow.

The whole process need only take up to 15 minutes, and is obviously not only for folks dealing with chronic pain: this is a deeply spiritual and ages-old practice that is immensely beneficial for all people. 

 I would love to hear from you.  Click on Comment below, or contact me at carold.marsh@gmail.com.

10 October 2010

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.

09 October 2010

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.

03 October 2010

Miraculous Anti-Aging Practice!

I really do not intend this blog to track sensational news, but this is too cool to let pass.

If you listened to "Being" (used to be called "Speaking of Faith") on National Public Radio this morning, you heard Krista Tippett interview Doris Taylor about her work with stem cells.

Nota bene: the stem cells that Taylor uses in her research are obtained from in vitro fertilization companies.  They would have otherwise been discarded.  Of course, I know that stem cell research is controversial, and I love Taylor's answer to the controversy (to paraphrase): she speaks of the common misperception that stem cells all come from aborted fetuses - they do not; and she asks folks who are so adamantly opposed to spend a week in a neonatal ICU; she notes that people whose children or loved ones are affected by a disease that could or has benefitted from stem cell research will most often come to allow and be grateful for it.
Now, back to the subject of my post today: Taylor talks about the fact that we all have stem cells in our bodies, working for us all the time.  She uses the example of a wound in the skin, which leaves an inflamation that she sees as the body's call to the stem cells do come and work their healing magic.  In other words, we are all using and benefitting from our own stem cells.  Further, she says that aging is really the process of stem cells losing their effecitveness.

Here is the cool part: research has showed that meditation increases the number and health of stem cells in the person practicing it.

Now, I do not have any evidence so credible as scientific research.  But what this made me think of is that, in the past year or so - and despite the chronic pain of the migraines - numerous people have told me in very surprised tones of voice how good I look.  Meaning healthy, I assume, and I always leave such conversations shaking my metaphorical head and wondering how that is possible, when I am feeling so poorly.  Maybe it's the meditation!

I could really get carried away with this.  Perhaps I could create one of those infomercials, appearing in chic clothing (which I would have to buy, as no one has ever accused me of dressing a la mode), dye my hair a younger color (not blonde, maybe auburn), adopt a dramatically energetic manner while extolling the benefits of meditation and telling people they simply MUST buy my DVD ...


So I just want to thank the NPR radio show, Being, for giving me the opportunity to write a light-hearted post today.  I needed that.

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

02 October 2010

Choosing Patience: Active, Not Passive

Just to set this post in context: this morning I awoke at 5:30am with a migraine.  My wonderful husband brought me a cup of tea and my medication so I could stay in the bed and move in and out of sleep in comfort.  I know from experience that the best thing for me to do is to sleep as long as my body tells me I need to.  This morning, I didn't get up until 9:00am.  After my usual bowl of oatmeal, which sometimes revives me, I still don't feel well and that makes for the disappointment of having to cancel something I was anticipating.

My dear friend, Donna, and I had plans to go to Crafty Bastards, an outdoor market of all things hand-made that is taking place in Adams Morgan today.  Our friend and Miriam's House knitting teacher, Susan, and her partner have recently opened a yarn shop just above DuPont Circle: Looped. They have a booth at Crafty Bastards that Donna and I were going to visit, bringing our knitting so that we could join their Sit and Knit for a while.

A few minutes ago, I called Donna to cancel.  I do not feel well enough for all the walking, and even sitting is problematic when I feel this way because I cannot hold my head erect unsupported.

The subject of this post, following my post of 26 September, is about patient suffering and how, despite its seeming passivity, it is an active and positive choice with benefit to the spiritual life.  So I tell this little story of today's disappointment as a way to illustrate how I choose to manage these things.

For me, choosing the quiet peace of patience is a positive move.  It does not mean giving up or sinking passively into inaction.  It is an act.  Emotionally, as I said in my last post, this lifts me out of feeling sorry for myself, a place in which I find myself regularly enough, and in which I refuse to remain for long.  Naturally, I feel the disapointment - who wouldn't?  These sorts of cancelations and postponements are a regular feature of my life.  All my friends know that plans with me are tentative.  I do become weary of being unable to simply go out for a morning with a friend, or plan to attend a concert knowing I'll probably actually be able to go.  These are facts of my life, have been for the past 5 years, and denying them or their impact on me is just as unhealthy as falling passively onto the pity pot.

The spiritual side of this involves simple honesty about the reality of the moment: I am disappointed/frustrated/angry/sorrowful about the effect this migraine is having on my life today.  Naming those feelings has a powerful way of bringing them to the Light, to God, so that they are illuminated by Truth.  Denying them and pretending they are not in me has a powerful way of hiding them in the shadow, hidden by Lies. 

So, step One: honestly name the emotions I am feeling.

Step Two: Make a choice to either swim into them and sink, or rise through and above them.  Rising above does not necessarily make me feel happier, more optimistic.  More often, it gets me to the place from which I can choose patience and the lovely serenity that accompanies it.  Sometimes, I hurt so much that there is not even lovely serenity, and choosing patience is made difficult because I feel no difference.  There is no magic to choosing patience and often one is choosing simple endurance without a sense of when or where it all will end.

One thought about all this: I am very aware that I write this from a place of good mental health.  I could not have said any of this during the years that I struggled with intense anxiety and the depression that goes along with it.   My heart goes out to those who are not only living with chronic pain but who have the added burden of depression, or anxiety, or any of the other mental ills.  There is no simple answer for such things, and I do not intend this post - or anything in this blog - to imply that just reading and following what I say will change mental health, or is even possible when struggling with things of such magnitude.

Finally, the act of choosing patience lets me pray and meditate, things I cannot do when I have chosen victimhood, which is stultifying, paralyzing.  And to restate - all this does not really make me jump up and down for joy, changing my life and making me a hilariously happy person to be around.  I am not pretending that two simple steps make it all OK.  I am saying that, in the choice between being a victim and patiently suffering, I choose the latter because I perceive some spiritual and emotional benefits in that choice.

Now I'll go rest.  Maybe I'll feel better after a while, call Donna, and visit Crafty Bastards.

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