About Me

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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.

31 July 2014


Photo by William Marsh

This is the first of a weekly series, Pain Management Tips. It will feature short, practical (as opposed to theoretical)  posts with a single pain management tip or exercise.

Breathing. We all do it, and that makes it, as I have said before, quite a handy tool in the pain management kit. But the flip side is this: we all do it, and that makes it easy to forget or discount. So when applied to pain management, the key to breathing is focused consciousness.

Breathing exercises done correctly are calming and relaxing. They're the mainstay of my pain management repertoire. For example:

Breathe in gently through your nose, then out as though blowing through a straw. The out breath should take longer than the in breath.
  • As you breathe in, Imagine the breath filling you -- tips of toes, feet and ankles, legs, pelvis, abdomen and back, shoulders, neck and head to top of scalp.
  • As you breathe out, imagine the breath taking with it from your body all tenseness of muscle and sinew, and ache of bone in a slow and relaxing whoosh.
  • Do this ten times.

I welcome your comments below, or you can email me at carold.marsh@gmail.com. Thank you.

29 July 2014

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.


28 July 2014

Am I Afraid of Getting Well?

I am scheduled for a treatment tomorrow that has a chance of dramatically reducing my migraines. You'd think I would be happy and excited and hopeful. Nine years of chronic pain may be over! A normal life may be possible!

Today I am not happy, not excited, not hopeful. I'm worried. Maybe even afraid. And as I sat in meditation this morning unable to stop the tumbling thoughts about tomorrow's treatment and its possible effects, I wondered if I really wanted to be better, after all. Some of the fears made a lot of sense. Until they didn't:
  •  The treatment might not work -- my neurologist isn't very optimistic, given my history;
  •  Those needles poking into the back of my head and being maneuvered around will hurt;
  •  There's a chance of a bad reaction to the injections;
  •  If it doesn't work, I'll be really disappointed;
  •  If it does work, I'll be ... scared.
What? Scared about maybe being well? 

The thought shocked me right out of my meditative reflection. What kind of web was I caught up in?

Photo by William Marsh

It wasn't easy to sit with then and it's not easy to admit now. But I believe that self-awareness and honesty are essential to healing of any sort. And it's incumbent upon me to explore the strange phenomenon of fearing getting well, first for myself and second for any of my readers that may be helped by knowing they're not alone.

(Warning -- this is going to be a longer post than usual.)

I remember learning in college about fear of failure and fear of success. The first seems normal, the second, weird. But it's real and there are lots of articles about it, mostly how to understand and get over it. 

When I Googled "fear of health" and "fear of getting better," I found forums and support sites for people with various mental illnesses who needed to talk about their fear. I found one  blog post about the fear of getting well after years of long-term physical disability and pain. But I found nothing (at least on Google) to indicate the existence of professional study or understanding of this phenomenon. Yet people are worried about it, and many express shame and embarrassment about their feelings. Which seems another reason to write this post.

As I sit here struggling with my feelings, a few reasons for them -- the ones that are easy to admit and talk about -- pop up quickly:
  • I can't get past thinking about how tired I always am, how I need a nap almost every day and a good eight hours of sleep as well. As nonsensical as it sounds, I worry about getting enough rest if the migraines go away. I won't have them as an excuse any more.
  • I'll graduate this weekend with a Master of Fine Arts in Creative Nonfiction (Goucher College, a wonderful program). I'm glad and excited. But common wisdom says you don't make a living as a writer. You have to have a day job. I haven't been in the work force since the end of 2009 and I'll be sixty next spring. Even if I do get well enough to work, who will hire me?
There are other realizations clamoring for attention from the dark place in my consciousness where I cast them in order to not have to think about them:
  •  I've learned how to live as a disabled person, my whole life is structured around coping and managing and doing-in-spite-of. I afraid I don't know any longer how to live as an able person.  Maybe it's easier to stay ill.
  • I'm the one people admire for getting a degree despite the constant pain. What's there to admire if the pain goes away?
  • Who am I if the pain goes away?
In 1990, I gave up on years of study and the hope of a career as an opera singer because a cyst on my vocal cords prevented me from developing the stamina, finesse and pitch security needed for a professional career. I asked these same questions then: Who am I if not a singer? What will I do with my life now that I'm not traveling to New York bi-weekly for lessons and coaching? People admire my voice: what's there to admire if I don't sing any more?

Somehow, those questions are socially acceptable: we would all freak out if primary ways we identify ourselves -- talent and career -- were snatched from us. It makes sense. Not so freaking out about getting healthy, of giving up the identity we've developed during the long and difficult months and years of ill health.

Yet it's surely true that we've invested a lot of time, heart, spirit and body into learning how to be ill as well as we can. And looked in this way, doesn't it make sense that losing that identity would cause concern?

I have no magic answers. I just know fear of getting well is real for me and for other people out there, although shame makes us want to hide it.

Life has taught me to bring what's hidden into the light. So consider this post an attempt to shed a bit of light on a reality we hide: that we can  become so identified with our mental or physical illness and all we've done -- all the hard work, the difficult changes we've negotiated and the stamina we've developed, as well as resulting spiritual and emotional growth -- that we can actually fear losing it.

I welcome your comments, either below with Google+ or at carold.marsh@gmail.com

25 July 2014

Resource: American Chronic Pain Association

(This article is the first in a semi-regular series about resources from health, chronic pain, and spirituality spheres that have helped me and informed many of my posts.)

Photo by William Marsh

The American Chronic Pain Association (ACPA) is a wonderful resource for medical and practical information about chronic pain. On the website you find information about the many health conditions and diseases that cause chronic pain. You learn about medications and treatments, pain management, and pain awareness and understanding.

If you join, you can opt to receive the quarterly Chronicle, a journal with a wealth of articles, suggestions, book reviews and updates on ACPA goings-on.

In the June 2014 Chronicle:
  •  From the lead article, Pace Thyself: Listening to our Bodies -- "In this issue of the ACPA Chronicle, we will look at how to set priorities so you use your good days wisely. We'll also discuss how to use pacing to accomplish these priorities. Our goal is to gain a feeling of satisfaction for a job well done, with a minimum of pain, and a life well lived."
  • The article, Prioritization Prompts a New Mindset, Uncovers Blessings, covers these topics -- "Mind Over Matter," "Taking Ownership," "Appreciating Today," and "Structured But Flexible."
  • An article by the editor, Alison J. Conte, entitled, Pacing and Priorities: Finding a Way Back to What's Important.
  • And more...
I have always found the Chronicle to be especially helpful, mostly because its articles pertain to day-to-day life, giving concrete ideas and methods for living well with pain.

I hope you get as much out of this resource as I have.

As I work toward improving this blog, I am trying to add Disqus (a service that enables better conversations on websites and blogs). It's taking me a while to figure out how to do it. In the meanwhile, you can leave a comment through Google+ or email me at carold.marsh@gmail.com.

22 July 2014

Love Me Until I Can Love Myself

The pain that comes with life can eat away at our self-esteem. We make mistakes, we hurt others, we're in physical distress, our actions cause unintended effects. A loved one dies, a tragedy far away affects us personally for some reason, news programs follow one disaster or war or crime after another. We stop feeling -- if we ever did -- adequate to the task of living.

Not all of life is like this, of course. But there are times when what is negative can overwhelm our sense of self and our confidence in our ability to navigate our world.

When I worked at Miriam's House (a residence for homeless women living with AIDS, now connected to N Street Village), all of the residents came to us in this kind of pain. Most of the staff had a similar experience at least once during their time with us. In addition to this commonality of experience breaking down barriers between us and helping to make us more compassionate with one another, we learned one of the most important components of getting through times of great pain and low self-esteem.

It's something one of the residents said after a year of real struggle to remain clean and sober. Looking back over the pain of those long months, she said to me, "You loved me until I could love myself."

Take a moment to let the spaciousness of that fill and calm you.

Photo by William Marsh

There are at least three more posts in this theme. But for now, because I like to keep my posts short, I'll just say that letting someone love us when we cannot love ourselves is an act of courage and trust. As is the reverse. And on such acts are we brought to the place where healing is possible.

Thanks to my brother, Will, for inspiring this post.

NOTE: I am trying to get Disqus (a service that enables better conversations on websites and blogs) for my blog, though it's taking me a while to figure out how to do it. In the meanwhile, you can leave a comment through Google+ or email me at carold.marsh@gmail.com.

18 July 2014

New Photographer Partnership

I have been looking for a way to add photographs to my posts without resorting to stock photos that have little resonance for me and without endlessly recycling my photos of Mt. Edith Cavell. It turns out the solution was in my back yard, familial-ly speaking.

William Marsh is a wonderful photographer, and just because he's also my brother doesn't make me unduly biased. Look at the photos below and you will agree with me.

You'll see his photos regularly on this blog. Thanks, Will!

Photo by William Marsh

Photo by William Marsh

Photo by William Marsh

Just wanted you to have a preview before my next post. Have a great weekend!

17 July 2014

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:

Let me know what you think!


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

16 July 2014

The Selfsame Well

I ended my previous post with this quote from Kahlil Gibran:

Your joy is your sorrow unmasked.
And the selfsame well from which your laughter rises was
oftentimes filled with your tears.
And how else can it be?
The deeper that sorrow carves into your being, the more joy you can contain.

I first read this verse in Gibran's The Prophet when I was a teenager. It has stayed with me these forty-some years, sustaining me through life's difficult times. During the past nine years, while I've learned to live well with chronic pain, it has taken on new meaning.

I have stated before, in other posts, that for the purposes of writing about chronic pain, I define "pain" as something quite different from "suffering." I see pain as physical, mental or spiritual pain that we do not choose but that happens as a part of life. Suffering is a choice we make -- quite often unconsciously -- to layer other emotions over our pain For example, I'm in pain when I have a migraine. I suffer when I let myself get worried, upset, or angry about having the migraine.

I've learned that pain and peace offer the same opportunities for deepening and holding:

The deeper that pain carves into your being, the more peace you can contain.

Suffering (as I define it above) doesn't carve into my being at all. On the contrary, it keeps me skittering around on the surface like the waterbug I wrote about in my previous post.

But pain carves. I wrote once, "being in pain like that [a particularly bad migraine] changes you."  Then I meant something negative, something I'd rather not have experienced. Seen through Gibran's eyes, though, terrible pain -- whether emotional, spiritual or physical -- digs out a space into which peace can pour. 

None of us would ever choose that kind of pain. Yet if it has come to us, there is consolation and wisdom in accepting its whittling away at a space that one day will be flooded with peace.

Thank you for reading this post. Please leave a comment below, through Google+, or email me at carold.marsh@gmail.com.

11 July 2014

Joy that is Peace; Peace that is Joy

Since my previous post, I've been thinking a lot about joy and Martha Beck's description of true joy as lacking "the wild ups and downs of an excitement-based life."

My metaphor for my old habit of making excitement a necessary component of life is the water bugs I saw skittering on the surface of the creek I used to play in as a girl. (For my more nerdy readers, here is a link for the explanation of how they manage this.)

I used excitement to give me a sort of high, the adrenaline-rush through my veins and muscles and emotions making me think I was experiencing joy. I used the anticipation of excitement or some happy event (I can get through this day if I just think about going to that party on Saturday) to deny that day's emotional pain or discomfort. At the anticipated or 'joy'-producing event, I'd skitter around, adrenaline holding me aloft like water's surface tension does a waterbug's hairy little feet, acting like the adrenaline rush and forced happiness were joy.

I thought they were.

But true joy cannot happen on the surface. True joy is below, where calm reigns and the current is slow, where emotions are free to plumb the depths despite the wind and waves and turmoil above.

Isn't that why Jesus talks about "the peace of God that passes all understanding"? (Phil 4:7). And why Darlene Cohen at Shambhala Sun says "we can experience joy in life by opening up fully to our experience"? The Etz Chaim Center says that joyful living is about forging a deeper connection to the soul and creating an on-going opportunity to share our joy with others." (italics mine) On the blog Baha'i Thought, Phillipe Copeland writes that "happiness and joy are more than just ephemeral emotions ... they spring organically from the soul's response to the Word of God."

One final quote, and I'll pursue the topic further in future posts. This is my favorite from Khalil Gibran:
Your joy is your sorrow unmasked.
And the selfsame well from which your laughter rises was
oftentimes filled with your tears.
And how else can it be?
The deeper that sorrow carves into your being, the more joy you can contain.

You can leave comments through Google+, or email me at carold.marsh@gmail.com. Thank you.

06 July 2014

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.