Little Things Make A Difference

When things are bad -- like last week, when I was in the midst of a series of bad migraines and people dear to me were struggling -- it's usually the little things that make the most difference.

Like having tiny bottles with a few flowers in each, scattered around the condo.

Photo by William Marsh

Like my sweet little dog.

Like a text message from a loved one, a hug we're not sure we deserve, a surprise gift of favorite cookies.

Pain can narrow our perceptions. Depression tells us we have nothing good around us. Chronic conditions of mental and physical health, a recurrence of a life-threatening illness, relapse into addiction, seem to encourage us to give up.

Mostly, we don't. Mostly, we keep going. How do we find the strength? From where does the courage come from to set one foot ahead of the other when things look really bleak?

Sometimes, it's the little things that help keep us going.


Thanks 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.

Ferreting Out Those Hidden Blessings

Four or five times a year I have a period of many days with a particularly bad migraine that just won't go away. Wednesday through Saturday of this week made one such period.

People with chronic illness of any sort -- fibromyalgia, depression, diabetes, rheumatoid arthritis, schizophrenia -- experiences these particularly difficult times as part of having the disease. And we know how difficult it is to get through them. Having been through one, I'd like to write today about finding the (admittedly really hard to see) blessings or positive things present in the awful.

Part of the inspiration for this post came from here, a blog I read often: Migrainista. She is blogging about chronic migraine and fibromyalgia, both "invisible" illnesses, but I think all of us can relate to her list about what it's like to handle the realities of a chronic illness.

If we want to not just survive but learn from and grow within our chronic illness, it helps to remember that there are good things about our lives. I'm not saying we sit up and smile and hop out of bed, ignoring the pain we're in. This is not one of those stiff-upper-lip things, nor is it about what we hear all too often, that we're letting the illness get us down, or if we just [fill in the blank] we will feel better.

This is about having the courage or sheer doggedness to remember the good. Here's my list of blessings from the past four days:

1. My husband kept me well supplies with watermelon chunks and sympathy and humor.

2. I got a letter from a friend, who stays on the look-out for new info on migraines, with an article that told about a possible new treatment.


3. My little dog was especially cuddly and quiet.

4. I developed a new passion: a British television show called, "Sherlock." I don't watch TV or video when I'm in pain, I listen to shows like Seinfeld and The Office because they're verbal and funny. Sherlock, not funny but suspenseful, has great story lines, inventive plots, intelligent writing and, best of all, really good music and sound editing. 



 Today I'm blogging, doing wash, baking biscotti, and making myself rest between activities. I'm glad the pain is over, and I'm grateful for small blessings.


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

Reading Mariechild Together: Made Precious in Pain

What in your life is made precious in pain?

Finally the oyster knows itself
to be not different from the pearl:
soft flesh made precious in pain,
all a jewell in God's fiery sea.

How do you understand that you are not different from the pearls of pain in your life? Anne Morrow Lindbergh, who wrote the above verse, lived in a terribly unhappy marriage and suffered the kidnapping and death of her 20 month old first-born. She was no stranger to pain, and so she could write such wise and ultimately hopeful words.

I have a bad migraine today, the third day that it has plagued me despite rest, medication, and more rest. This is such a good day for me to think about what in my life is made precious in pain:

 I feel greater love and gratitude for my husband
 I have an increased ability for stillness and deep peace
 There is very little I take for granted
 My little dog gets so much more of my time, and I of hers
 I have enrolled in a low-residency program and will have an MFA in 2014

I would really rather not have these migraines. Yet the soft flesh has been made precious in pain and I have pearls. I have pearls!

Reading Mariechild Together: Breathing Gratitude

Today's reading is one of the most honest and straight-forward treatments of racism and intolerance of diversity that I have ever seen. I would like to hear from readers of this blog:

Does what Diane Mariechild says about how we have been taught to fear, hate and compete resonate with you?

What are other ways that power can be expressed, aside from the dominant/subordinate model so prevalent in our world?

Gloria Dean Randle Scott uses a metaphor: a great chain of inferiority. What does this mean to you?

Finally, Mariechild gives us another practice. (By the way: how are you doing with these practices? So far, she has offered suggestions on January 5 - a prayer; January 7 - self-affirmation; January 11 - imagination.)

Her idea is to imagine a gift from another culture..

breathe in and receive the gift...

breathe out and realize how the gift has enhanced your life...

breathe in gratitude...

fill with gratitude...

breathe out thankfulness.

I work a lot with the breath both for pain management and in my spiritual life. If it is new to you and you would like to know more about how it works, here are a few links to blog posts of mine and to information on the web.

From my blog: Beyond Theory and Discussion; Inhabiting Our Bodies.

From the web: a video; a website.

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

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 Botox

Late in August, I posted about waiting for a Botox treatment to work, about the suffering brought by misplaced hope, and about how emotional balance and equanimity - not healing - must be my goal.

It turns out to be a good insight: the Botox has made no difference in the migraines.  Having practiced equanimity about the outcome of the treatment, I am not now crashing down through the wreckage of high hopes - hopes that the migraines will go away, that I will have more energy, that I will be able to live normally once I am not in almost constant pain.  It is a good thing not to crash.

Yet to be honest, I do find myself in a bit of depression today.  It's the day after Labor Day: my husband, after being off work for a week, has returned to his office; the weather is cool and rainy; people move purposefully up and down the sidewalk outside my windows.  I remember how I loved this time of year.  I usually felt renewed purpose and greater energy moving in with the cooler breezes.  It's the time of year to go back to school, pick up work after celebrating summertime's last holiday, or help the family through changes in routine.

I admit to a tinge of feeling sorry for myself.  Thank God, that does not last long.  I know too many people who are also struggling: a loved one with cancer; an empty-nester feeling lost and alone in an echoing house; women living with AIDS; my homeless friends caught in addiction; a dear friend in the midst of huge upheaval; people I care about facing limb amputation, or family tragedy, or unemployment.

Equanimity balances my vision.  Contemplating the wonders and richness of my life overwhelms me with thankfulness.  Self-pity melts away, depression recedes for the moment.

Today is a day for gratitude.



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

Knowing Pleasure

I watched Eat Pray Love twice this week.  Well, once I watched when my head wasn't bad, and once I listened, when it was.

The hot, humid summer months have become increasingly difficult these past two years, making me feel sick, extra tired, and less able to handle the almost constant pain in my head.  One of the things I do as part of pain management is listen to movies.

There are several memorable quotes from Eat Pray Love, one of which has stayed with me and caused me much reflection.

Liz is sitting in a barber shop in Rome with her new Italian friends.  During an animated conversation full of graceful, gesturing hands, lilting voices, musical vowels, and hair clippings, this quote emerges:

"You Americans know entertainment.  You do not know pleasure."

I usually find that when an idea sticks with me, there is good reason for it - reason that I find within myself.  So during the past several days, as I re-play the movie and think about entertainment vs. pleasure, I look at my life and, in particular, my pain management practices.

I try to steer clear of dichotomies because they tend to create opposition: to talk about the values of pleasure vs. entertainment as though one concept might vanquish the other is a fruitless conversation that misses the point.  It's more my task to understand why the words have settled into my mind than it is to decide which is better.  So here is a rough approximation of my internal dialogue this week:

"Do I know entertainment better than I know pleasure?"
"Yes."
"But entertainment is one of the things that gets me through the rough days.  Entertainment: listening to NPR or a movie or Seinfeld.  Yes, it's passive, but when I am in pain, passive is what I need."
"OK, then, gotta have entertainment.  It's not an either/or proposition."
"Fine.  So where does pleasure come into my life?"
"Walking my dog, cooking and eating, listening to music or meditation CDs.  Being with my husband.  Keeping up with friends and family.  Knitting."
"How much pleasure am I truly gleaning from these activities when I am also in pain?"
"Not so much.  As a matter of fact, it's more like I am getting through them in anticipation of being able to rest and turn to the entertainment."
"Then the question is not entertainment vs. pleasure, it's how to get more pleasure - be more present to - the pleasurable activities."
"Gratitude."

Gratitude.  That's the simple answer, the one that springs instantly to my mind.  It's part of being present to the moment, the Now.  Or maybe being in the Now - presence - is part of gratutude.  Or maybe it's really that they go magically hand in hand.

I can walk Sierra (our rat terrier) realizing vaguely how good it feels to stretch my legs while otherwise lost in thought or just getting through the walk because my head feels so badly.  I think of it as a pleasurable activity, but how much pleasure do I actually get from it?

I can sit down for a meal and rush through it because it's hard to hold my head up.  But last night, when I put the homemade pizza on the table and focused on it - no radio, no magazine, no planning for what I'd do next, no rushing - I experienced the pleasure of the textures, flavors and nurture of that simple meal; I experienced gratitude for the abundant goodness before me. 

When I walk or eat with presence, gratitude wells up in me unbidden.

I have written before about inhabiting our bodies: being fully, quietly present to our selves and the moment.  Out of this arises gratitude, and out of gratitude arises pleasure.  Deep pleasure, the kind that does not seek entertainment, the kind that is sufficient in and of itself. 

Here's the magic: pleasure itself turns out to be a great pain management tool.

For this, I am so grateful.



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

5August: Gratitude

************

TODAY’S POST:

The Silver Lining to the Migraine Cloud
Painful Poetry: Haiku
************

During the week of 19 July, I blogged about “So Where IS God in all This?” My 2August post discussed how impossible it is for me to get to gratitude when I am in pain. Yet if I truly find the Divine in all things, then there surely is a way to connect with God through the migraines.

There is, it just doesn’t happen while I am in pain. It happens in other ways, and at other times, some cultivated, some simply by Grace.

For example, I am grateful for what the pain and the inconvenience of migraines has taught me:

* I have noted before (12July post) that a migraine stretches my nerves tight, making me impatient and abrupt. Given that patience is already not one of my stellar qualities, migraine or no, I’ve needed to learn a different way of being, or else I alienate those around me and isolate myself further. Learning to be patient while having a migraine has had an improving effect on my ability to be patient at other times.

* When I have no pain in my head, I am so grateful for that and for many small things of life that I would otherwise take for granted.

* I have also noted before (3August post) that practicing meditation, breathing and deep relaxation has changed my regular prayer practice immensely. It is much easier, now, to get to the deep quiet and peace that I crave, and for which I am grateful to the migraines.

* I am powerless over these migraines to the extent that my neurologist and I have found no medication that will help prevent them. I do have a PRN medication that alleviates the pain of most migraines, for which I am grateful. But it does not work 100% of the time, nor does it completely eliminate the pain in my head, nor have any effect on the strange fatigue and minor depression that accompany a migraine – except, ironically that fatigue and depression are side effects of this medication. So, what is there to be grateful for in this?
If you know the 12-Step Program, you know that the concept of powerlessness is at its heart. The lessons of powerlessness over the migraines seep out into other parts of my life, and I have noticed in myself a calmer, broader acceptance of circumstances and of my own and others’ behavior. That is truly a blessing.

So the upshot of this is that, although I cannot be grateful for the actual migraines, it is clear to me that there are aspects of my life that have changed for the better as a direct result of them.

This is how I find God and gratitude in the chronic pain of migraines.

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

************

PAINFUL POETRY
Original, if Awkward, Attempts to Find Humor in Pain
A Pain Haiku

Tearing shards of pain -
We'll just watch my head explode.
Pick up the pieces.

Week of 2August: Quality of Life - Gratitude

**********

TODAY'S POST:

Reminds Me of the Time - Watching Mary

Gratitude

**********
Reminds Me of the Time
Stories

Watching Mary

Life at Miriam's House afforded me many humbling moments. One such moment dramatically reversed a habit I had of complaining unthinkingly about minor irritations. It was Mary, who lived with us for 11 years and was the rock of our little community, who taught me a profound lesson about gratitude. That she did this without ever saying a word made the lesson immediate and indelibly printed in my memory.

It was a chance observation in a moment of petty upset about some silly frustration - I don't even remember what was bothering me. I was upstairs in my apartment, ranting and pacing, when I happened to look out the window. What I saw stopped me mid-rant. Mary - tall, dignified, wise Mary - was making her way down the street below our window. Something about watching her from above, removed yet observant, jarred me out of my self-involvement.

Mary had had a stroke not long after she arrived at Miriam's House, had been to physical therapy and equipped with a walker. One leg dragged a bit, and balance was a bit precarious, so forward motion was very slow. Step ... move the walker forward a foot ... step ... move the walker forward a foot ... Such a contrast to my anxious, revved-up pacing was the peaceful dignity of this slow progression that even I, in my high anxiety, got it.

So, stopped short, I simply watched. Step ... move the walker a foot ... step ... move the walker a foot ... She was headed toward the Rite-Aid, three blocks away, a trip from which I could return in 15 minutes, but which I knew would take her at least an hour. She would return with that peaceful smile on her face, chat amiably about what she bought, and head for the kitchen to make her meal. Because Mary never, ever complained. We would have thought her perfectly justified to return from the Rite-Aid moaning about how tiring it was that a simple errand took her so much longer than it would have taken any of us. But Mary never complained, and, more than that, her dignified acceptance of life's circumstances allowed her an inner peace and an outer calm that made her the center of stability and balance at Miriam's House.

This is the Mary that I watched from my second-floor window that day. Until she was out of sight at the end of the block - which, given her pace, was several minutes - I watched, perfectly still. There was no need for a sermon. Indeed, I was reminded forcefully of St. Fracis' words, which Mary embodied more than any other person I have ever known:

Preach the gospel daily. When necessary, use words.


**********

The 12-Steps program uses the phrase, "an attitude of gratitude". In the Catholic tradition, the Spiritual Exercises of St. Ignatius begin with reflecting on and experiencing gratitude to God. I have heard that cultivating gratitude in one's spirit is the best way to be close to the Divine. And doesn't Paul talk about finding God in all things?

But when I am in pain, it can be difficult to get to gratitude, notwithstanding my understanding of and agreement with these people who are far wiser than I. Sure, I get it that gratitude is an important element in my spirit - it certainly helps me to be in the moment without judgment or anxiety. Gratitude allows me to see beyond the narrow confines of my ego's assessment of circumstances in which I find myself; where my ego will judge based upon how it is being affected (and, most likely, add a complaint or two) gratitude moves me beyond such petty, self-centered concerns and opens me to the wondrous nature of the possibilities and opportunities of life.

So I try to cultivate gratitude throughout my life. Yet as much as I am certain that this practice transforms my daily life and relationships, gratitude mostly eludes me when I am in pain.

And, truthfully, I don't worry about that. Maybe some spiritual giant would be able to be grateful when suffering a migraine, but not me. Maybe I'll gain in maturity some day and selflessly praise God during those days when I am lying in a darkened room unable to move for the pain in my head and the accompanying nausea, but it's not happening right now.

The last thing I need to do when in that much pain is to layer around it some frustrated or guilty anxiety about not being a perfect saint when I hurt. (This is not meant to imply that I am a perfect saint when not in pain ... trust me on this.) One of the other qualities I have cultivated is self-honesty, so there is no deluding myself into believing I feel grateful when I patently do not. Neither does my practice of staying in the moment (or the Now, as Eckhart Tolle terms it), allow me the denial I would need to be able to act grateful when I am not.

Because along with self-honesty has come self-acceptance (well, it's all a work in progress, of course), I simply let it go that I can feel no gratitude nor can I take comfort in some "bigger plan" that God has for me.

Additionally, an important component in my spiritual life is to hold everything up to the Light, as I term it. Some would say, "give it all to God." I understand humans to be complicated organisms with chaotic intellectual and emotional processes, rarely experiencing a pure emotion. Thus, I expect to be conflicted much of the time: my joy, depending on the circumstances, might be tinged with sorrowful regret (this happened often at Miriam's House); I might feel anger and relief at the same time; my experience of hope can be tempered by a realistic assessment of the possibilities. I love the way Stephen Cope, in his CD, "Yoga for Emotional Flow" talks about this as he is describing how remarkably similar ancient yogic thinking on this is to Jungian thought. "The one thing often comes as two," he says, and that is just part of the human condition.

So, if there is some gratitude I feel during pain, it might be that Tim, my wonderful husband, has brought me a cup of tea, or that my meditation practice has relieved some of the difficulty. But this gratitude exists alongside real regret that I am spending yet another day incapacitated to some degree. And it certainly does not extend to being grateful for the migraine.

When I am not in pain, I am able to see how the migraines have changed me for the better, which is the Silver Lining to the Migraine Cloud, and the subject of my next post.