Friday, November 27, 2015

Reaching Out Online

Unfortunately I still haven't managed to put the Twitter icon on this blog. I promise to keep trying.

It's hard to know where and how to reach people who might be interested in my musings and ramblings. Maybe it's time to get a video camera and do a spot or two on YouTube? Or maybe podcasting is about to explode, and I should get with that aspect of online life.

The original  flatback forum that eight of us established 15 years ago (after Listserv-type scoliosis groups gave us perpetual grief about mentioning or discussing flatback syndrome in public--a moderator or two went so far as to censor any any post on the subject) seems to fall into periodic disuse, even though loyal old-timers still urge me not to drop it. I do believe the "Feisty Forum" was a helpful resource to its members over the years, but right now things aren't exactly hopping over there. We got lots of requests to move to Facebook, and we tried very hard to oblige, but our satellite Facebook group attracted some real attention-hoggers. One member in particular wanted only to rant about the evil acts and foul intentions of spinal surgeons -- ALL spinal surgeons -- and the Facebook format made it very difficult for anyone else to get a word in edgewise. Eventually we decided to return most of our energies to our Yahoo Groups site. Some of us aren't too happy with Yahoo's new "neo" format, but so far no viable alternative comes to mind.

I was moved to write a Thanksgiving post to the Yahoo Group yesterday, but then I thought better of publishing it, at least at that site.  Rather than letting it languish in my Drafts folder, I'll reproduce it here:

Hope you're having a restful, celebratory day.

The group has been pretty quiet again lately.

How about sending us a post to let us know what's happening with you?

(I know, bad idea, posting a post like this one. Who ever was inspired to get n touch by being nagged? In this group of well over 900 intrepid individuals, I bet there are one or two who are old enough to remember Fritz Perls and
Gestalt therapy. In the sixties they used to sell this giant poster of Fritz, with a quote he was known for: "Don't push the river, it flows by itself." And here I go pushing again anyway.)

I do realize that in a way this group serves two rather different purposes and constituencies, so to speak. What I mean is, there are two principal subgroups in this group, and conceivably each might benefit from a group of its own. That's something we might want to discuss at some point.

(1) Some members are beginning to consider having flatback revision surgery. This is a major life decision and possibly the hardest you will ever make. We want to help you in any way possible as you research surgeons and consider your situation with respect to potential surgery. We want to provide a free space where you can vent and worry and wonder and doubt and whatever you need to do. Dismal experiences with certain surgeons, sudden frightening memories of everything you went through at age 13 or 15, questions about how it will be different this time or whether it will be just as bad . . . concerns about clothing to fit your skewed body contours . . . concerns about relationships that fit your former life but seem to be filled with stress and tension as you stand on the precipice of a whole new existence . . . practical questions about health insurance coverage, disability compensation, keeping up your house or apartment when you're in this much pain, walking down the street to the store when you're not sure you can keep holding your torso up, going to sleep when you can no longer lie in your bed . . . Where can you buy the best reacher or grabber? Is it time to consider a walker? Will your neck ever be the same again? How can you get more specialized and attentive pain management? What can you do about problems of loneliness and isolation? Who will walk the dog today? Can your marriage weather this load of horribleness and uncertainty?  Should it? 
You may be weepy and grief-stricken at the realization that you can no longer lift up your three-year-old in your arms. You wonder if she can forgive you (she can and will), if she will be scarred for life (she won't-- in fact, she has a good chance of growing into an unusually compassionate adult).

We may not have any definitive answers for you, but we sure do want to hear about your questions and worries and try to lend a helping hand. We know you'd do the same for us.

(2) The rest of us, the Feisty members in the second subgroup, have undergone at least one flatback revision procedure. For the most part, I expect, this subgroup is  concerned with questions of how to live the best lives we can despite certain limitations and changes that have radically changed our daily activities, our family constellation, our commitments to paid or volunteer work, our dream of traveling around the world, our expectation of what things will be like at breakfast tomorrow.. It's taking us so very l-o-o-o-n-g just to accept this rotten hand we've been dealt! It seems like some kind of surreal nightmare. Like, where did our REAL lives go, the ones we planned and studied and worked like hell to create?  Where did WE go, the people we used to be?  What will we be, what can we be, instead?

Maybe you are still very close to a recent revision surgery. You can be incredibly proud of yourself for going through with it, for having done it -- we all know this surgery is absolutely terrifying and doesn't seem like something any reasonable human would consent to. But now that you're a little beyond it, you're facing one, two, even three years of ongoing changes. You may think, say at some point next October, that you've hit a plateau -- hit a wall -- only to experience a sudden awesome improvement in functioning  The recuperation from this kind of major messing with your spine is never easy or predictable.  If you had the whole deal, the posterior-anterior-posterior extravaganza, with tricky osteotomies and massive blood loss and internal instrumentation that makes your latest X-rays look like something out of Stephen King's imagination -- if you were fused, this last time, all the way to S-1, the sacrum, the end of the road -- you may have mostly pragmatic, straightforward sorts of questions, e.g.,"Will I ever be able to tie my own shoes again?"

We want to help subgroup #2, the revision-surgery graduates, as much as we want to be there for subgroup #1, the folks just starting out on this odyssey. We aim to supply you with  all the support and encouragement we can, as you continue to adapt to this massive, tumultuous event of having had your spine surgically remade.

Whatever your concerns may be, we urge you to share them with the rest of us. We want to know about your discouraged times; we also want to celebrate your times of progress and achievement, your insights and breakthroughs, the growth-spurts in your adult development. We're here to help and support each other with everything from pain management to choice of surgeon to the hassle of encountering so many ignorant folks who are sure you'd be fine if you'd just consult their chiropractor or try an obscure new nutritional supplement promoted by their particular fringe-organization.

Please . . . don't be shy or reticent or mysterious. Don't (as my dad used to say) keep us  in suspenders!  Take a few minutes to catch us up.
Dash off a couple lines on your laptop or smartphone; give us a hint of  what's happening -- in your body, in your mind, in your life. We really, really want to know. C'mon, send us a post already!

As ever,

The same goes for anyone reading this blog. Revisionary Woman is open for comments 24-7.  And not just comments from fellow "spine" people -- I've defined this space as a resource for any woman in the midst of a major life-upheaval, medical or otherwise.

What are you dealing with? How are you dealing? What have you learned from the experience?


Friday, November 20, 2015

Why Me -- AGAIN?

Another medical condition  Another source of pain and misery and worry. It doesn't seem fair -- even long after we have learned that that life is unfair, that nature has no system of jurisprudence, that so much of what we experience is random or senseless (unless, of course, we are able to discern a higher meaning in our "random" misfortune and suffering).

For those of us with my particular spinal ailment, iatrogenic flatback syndrome (a surgically induced sort of hunchback deformity, corrected by even more drastic and difficult surgery), lightning has already struck twice. As youngsters we developed a lateral spinal curvature called scoliosis, which was progressing ominously enough that it threatened to crowd the heart and lungs, compromising vital functions and possibly shortening our lives. We were told that we might expect, at best, to end up in a wheel chair if we did not undergo spinal fusion surgery and months in plaster body casts. The earnest, well-meaning doctors convinced us, and they convinced our parents.

So, at age 13 or 15 or 17, we were removed from normal social life, from school and friends, to have our crooked spines surgically fractured and re-formed with the help of graft tissue, usually removed from the hip (posterior iliac) area. We spent up to 18 months "plastered" at least from neck to hips (including 6-9 months flat on our backs in bed, either in the hospital or at home -- with our mothers giving up much of their own lives to attend to our physical needs; perhaps with the school district sending out home tutors to help us keep up with English and algebra, if not phys. ed.!)

The oldest of us had only those humongous, traction-incorporating plaster casts to hold our fused spines in place -- except for those us whose scoliosis was causes by polio. (The vast majority of us had "adolescent idiopathic scoliosis," the "idiopathic" translating to "cause unknown.") Post-polio patients' spines did not have the strength to withstand spinal fusion surgery at all, until an innovation called the Harrington rod came on the scene. The rod was implanted internally during the surgery, straightening the spine by jacking it up from the inside, and holding the whole works in place while the artificially welded bone fused together naturally over time, much as an accidental fracture heals. By 1962 or so, every  young person with scoliosis, regardless of cause, had the new stainless steel device implanted for so-called 'internal fixation."

The Harrington rod -- let's save some syllables and refer to it from now on as the H. rod -- soon became the gold standard of scoliosis treatment. Over a period of some 30 years, roughly one million young patients acquired these rods. At the end of treatment, we were told we were all fixed -- free to resume our normal lives, with a few cautions and restrictions. The H. rods stayed in our bodies. Our surgeons bid us a final farewell, expecting we would have no further problems but would go on to live reasonably normal lives.

And we did live normal lives -- for a while. Some of us had 10 good years, or 20. But eventually almost all of us began to have severe, even excruciating back pain, at the same time we found ourselves bending forward in a way we could not control. I'll leave the technical explanation for another post, but in short, the H. rod proved to have crippling long-term effects. Newer kinds of hardware, vast improvements over that first brave attempt to help some kids with polio, have so far proved far safer. But the original rod flattened out the normal contours of the spine over time, until the patient ended up deformed in a whole different plane.

To simplify greatly:  Scoliosis is a lateral curvature, bending the patient out of alignment in the side-to-side plane. The H. rod misaligns the patient in the sagittal or front-to-back plane. She -- the vast majority of these patients are female -- eventually ends up hunched over to the point where she can no longer lie supine or prone, so she can not sleep in a normal bed. She can not walk without the support of a shopping cart or walker. She may end up carrying her torso at a 90-degree angle to the ground, unable to stand any straighter without the most tremendous effort and pain. For most of us, our chronic daily pain was unspeakable and our simplest daily tasks increasingly unmanageable.  Eventually we were forced to give up careers and other valuable activities outside our homes. Many of us had no choice but to apply for permanent disability to keep ourselves and our children going.

Most of us ultimately opted for highly specialized revision surgery to correct the new hunchback deformity, which had been dubbed "flatback syndrome." (Many doctors are still not familiar with the details of this scoliosis sequel, and it is not yet reflected adequately in the International Classification of Diseases or the schedules of insurance carriers. From time to time we are likely to receive such imprecise and incomplete diagnoses as "failed back surgery syndrome" or "post-laminectomy syndrome.") Flatback revision surgery, performed by small but  growing numbers of orthopedic surgeons and neurosurgeons -- those who have completed advanced post-residency fellowship training in complex spinal deformity correction -- may take as long as 20 hours. This surgery is incredibly exacting and intricate. The doctors who do it will often spend days or weeks preplanning the surgery, sometimes working from multiple CT or MRI scans and using complex trigonometric formulas to map out their approach. They also take the utmost care during surgery to do nothing that might worsen the deformity or subvert the correction, such as positioning the patient in a classical way on a traditional operating table.

Surgery is often done from both the back and the front: a typical sequence is posterior-anterior-posterior. There are many risks, and it is common to learn that a patient is dealing with complications ranging from intractable infection to post-anesthetic delirium. Although serious neurological damage is rare-to-unheard-of given today's sophisticated methods for monitoring spinal cord function throughout the operation, one revision surgery patient was left paralyzed from the waist down.

Revision surgery often succeeds in correcting the patient's flatback syndrome, so that she appears normal from the outside. But most of us are left with varying degrees of pain and dysfunction or disability. This is most often the outcome for those of us in our forties, fifties, or sixties. A few of us, usually somewhat younger women, are able to return to work eventually.

Teresa (not her real name) is one such woman. Still in her thirties, with two young children to care for, she was already dealing with the ongoing complications of progressive multiple sclerosis -- catheters, the associated risk of urinary tract infections, wheel chairs, an investigational course of chemotherapy. Then it turned out that she also had flatback syndrome caused by her previous Harrington rod surgery for scoliosis. She underwent the recommended complex revision surgery, followed by a thoroughgoing course of rehab. Despite all this, she soon became restless at home. She continued to travel with her family, wheel chair and all. On a trip to Central America with her husband, they were exploring the environs when they came to an impossible hill. No matter; Teresa's determined spouse simply gave a tremendous push, and they got her up that hill. Not long after arriving home, they scoped out a used van that was specially outfitted to be driven by someone with limitations such as Teresa's -- and Teresa was soon driving everywhere on her own: chauffeuring the kids, doing the shopping, heading some 90 miles down the Interstate to have lunch with an online friend in another city.  She was also soon back to working as a chemistry instructor at a community college -- a job she enjoys and has continued to do for several years now despite exacerbations of her MS.

Last year Teresa  discovered a small tumor on her breast. Almost before any of us had heard about it, she had undergone mastectomy and breast reconstruction and was back to posting pictures of family fun at Facebook, including numerous romps and outings with her beautiful, energetic kids.

Like other "flatbackers" with can-do attitudes, Teresa is just not going to let anything keep her down. Not all of us can be quite so active and involved as this young woman is, but most of us have managed to pick up some of the pieces and construct new lives which give us a sense of hope and meaning despite whatever limitations may remain. Our online group, FeistyScolioFlatbackers, has included women who care for service dogs and bring them on visits to nursing homes or hospices; who have discovered a knack for mixed-media collage or various folk arts, or have completed a first novel; who are active in civic affairs or spend several hours each week tutoring immigrants in English.

And here's the zinger:  Not one of us is out of danger, or through with medical troubles, or "cured" in some final and ultimate sense, as we once thought we were when our first surgeons proclaimed their success in mending our bodies for good. Since undergoing  spinal revision surgery for flatback syndrome, we have collectively faced open heart surgery, stroke, cancer, severe clinical depression, further spinal revisions, malfunctioning pain pumps . . . . (Oh, yes -- not to mention sick spouses, ailing parents requiring our care,  kids with special needs . . . )

Most recently, our group has experienced a sudden upsurge in thyroid problems. One woman has learned that she has Hashimotos's thyroiditis; another needs thyroidectomy for a malignancy.  Others have been taking thyroid medicine routinely for years. We have started to ask whether these problems could have anything to do with the enormous load of radiation most of us received in our youth -- numerous spinal X-rays every few months during the scoliosis years -- at a time when X-irradiation was delivered in much higher doses.

In the larger scheme of things, though, I wonder how much causation really matters. Whether a new malady, a new load of grief and pain, is "iatrogenic" or "idiopathic," it is just the third or the fifth time lightning has struck -- or the tenth time the dice have not favored you, or simply the hand you've been dealt.  If we develop a condition we can trace to some medical treatment or diagnostic procedure, it is usually because our doctors knew no better at the time. They were in accord with the existing standard of care, which was pretty much universal. (The one possible exception I've mentioned in this post is the woman whose surgeon set out to fix her flatback and ended up making her paraplegic.)

It would have been helpful if someone had had the wherewithal (and the personal, physical resources) -- as we, for the most part did not --- to work toward some sort of nonprofit advocacy organization, or maybe a fund for the flatbacked predicated on strict (that, is no-fault) liability, since many of us who were yanked from the workforce had families to support and lived with constant financial strain. But we survived one way or another, and we go on surviving now. To blame outside agency or human error -- to live in continuing outrage --seems like a dreadful waste of our precious human resources.

That still leaves me wondering what we are to make of the sheer number of calamities that can enter and afflict a given human life -- the irrational sense of some lurking injustice or unfairness in the very scheme of things.  How does Veronica get to sail through, why does Hal get to live to a ripe, robust old age without incident, while you and I get hit by one blasted disaster after another?

I leave you with no firm answers, but I will have more to say on this in future posts -- and I welcome your thoughts as well.


Starting today, you can expect to see a new post every Friday -- hopefully even more often, but once a week minimum.

Also starting today, you can link up with me at Twitter via the blog -- look for the Twitter widget I'll be adding shortly.

I also intend to make my entries "shorter and sweeter," which may encourage me to get the lead out and post more often.

I always welcome feedback, so feel free to comment on anything you see here.

Hope everyone is having a peaceful, hopeful Friday. How is your back doing today? Are you at work, or home, or out and about with your mobile device? Anything serious or sociable on your mind?

Friday, May 29, 2015

Barely Hanging On? Maybe It's Time for Some Music . . .

Note: Yes, it's time to renew my long-dormant blog. Watch for regular posts from now on. I welcome your comments. Love, Elizabeth

Has music played a role in your survival? It certainly has in mine.

Some people give their surgeon an MP3 player and headphones to attach them to during the operation. (The surgeon, of course, is likely to be piping in his own preferred music as he operates.)

Some years ago, while I was still wading through the long recovery period following spinal revision surgery, I wrote the following commentary on the power and importance of music in my healing process.

I am watching an indie documentary called Be Here to Love Me: Van Zandt. I never heard of this musician before, but he is/was so good. So good.

Someone talked about being at a folk concert with him when a young woman tore off her blouse. I understood this. I think everyone seeks some kind of spiritual ecstasy. It is not really sex, you know. It has to do with the spirit.

I was lucky enough to catch another documentary last night on one of the HBO channels, having to do with that famous early concert at Big Sur.  I remember when Joan Baez cut her hair like that. At the time she seemed so OLD to me. But in this movie she seemed so very young, so poignantly young. I am really old now. I am not dealing with it very well. But music keeps me alive sometimes.

[I am not terribly educated about music, but the many musicians and singers I love are deeply sustaining to me. Music is medicine, and music is nourishment, and music is prayer. Music is in us and of us and also from far beyond us.] Sometimes I think there is no other God. Sometimes I think music is the way God speaks to us.

I also saw “Walk the Line”last night and again this morning and again this afternoon. I felt so profoundly thankful that those two people lived on this earth. I remember how Lars [not his real name; the Swedish MBA candidate who lived across the hall in college] used to come over to watch Johnny Cash on my roommate's TV while he downed a fifth of Scotch. He was a lousy guy, a real womanizer with no conscience, but everything that was nonetheless fine and good in him came out as he got drunk and wept over Johnny Cash, and how Johnny Cash went to Folsom and San Quentin, and how Johnny Cash suffered in jail himself.

And I am so spiritually engaged with June as well. All her music came from the hymnal. I have one of her disks, and it is raw and in some ways hard to listen to, straight from the backwoods and the little church -- both dimly present yet somehow softening and receding behind the power and singularity of her voice. [To quote from the hymnal, "And the things of earth will grow strangely dim/In the light of (Her) glory and grace."] I can see her long, Southern-backwoods-girl hair, and her lined and wise face which had known so much pain. She wrote a book once -- if only I had saved it. I think it is long out of print. It was poetry that grew from her own deep suffering and transcendence. Maybe it was lyrics. It was Something, I would love to have that book now. Maybe I will try to find it online at some out-of-print-books place.

Do you know what else came from the hymnal? Some of the most powerful of the songs at the countercultural Big Sur concert -- the African American music. It was astounding, seeing these grand, deep black women full of conviction, belting out their songs about Jesus while "little Joan Cisneros" tried in her way to keep up, with some uncharacteristic hesitance and awkwardness. And seeing that whole assembly of out-of-their-heads acidheads moving to the music about Jesus. Watching the concert at Big Sur, I began to wonder if the whole hippie movement might really have been about deep, deep spirit and Jesus and God, even though all those unwashed beards repulsed me when I was a student on the periphery of that movement.. There was something awesome and profoundly good about that whole counterculture, even though it landed people in ERs and psych units and morgues, their brains fried forever. They were trying so hard, they were straining in their laid back way to get home to whoever or whatever was their Jesus. They -- we -- could have healed the world. But we were not young enough for long enough to do that. We changed the world a little. We set the healing process in motion before moving on, growing up.

Life may sometimes suck now, but that is not wholly our fault.  And I think we need not despair. Is this the Pollyanna in me? I simply refuse to despair. I totally, absolutely, forever refuse. That is not what life is about. That is not why someone put us on this tiny planet in this miniature galaxy, that is not why we were borne out of the black hole. There has to be some reason we seek God and make music. There has to be something better and finer than we usually manage to be.

This Towne was nurturing, generous, tortured, all at the same time, in the same person. It is said that people wrote to him to thank him for saving their lives, for bringing them back from the brink.

Visual art can be tremendously moving. And the written word  can be fine and powerful and healing. But this drunken man, so eaten with his own destruction, hanging on to his dear (male) friend physically, in his arms (his buddy was not gay, apparently, just emotionally devastated) night after night -- he saved lives. I believe it.

Judaism, or at least mystical Judaism, teaches that a person may be put on this earth for only one minuscule purpose:  -- a single word he is meant to say to a specific other person maybe sixty years down the road.

I don't pretend to know why some are put on this earth to write music that saves many lives.

But I think just maybe they are God's true angels. Her lost, drunken, drugged, tormented, soulful, salvific angels, leading us all toward Light after all.

Saturday, December 15, 2012

Poetry in Motion

 What kind of activity is best for someone with a very, very bad back?

The activity that helped me the most came into my life as a kind of lovely fluke --a series of Feldenkrais sessions, the gift of a friend. This bodywork program was thoroughly amazing in its effects -- incredibly powerful -- but I have no scientific grounds for praising it or recommending it. I hope to be able to resume some Feldenkrais now that I have been through several revision procedures and look forward to earning a better living than Social Security currently affords me.

Bicycling? I could not balance on any kind of bike with the flatback. My head and torso were heading swiftly toward the ground whenever I strove for a quasi-vertical posture. I miss biking enormously, as I had loved riding all my life from third grade on. It was just too dangerous for me once the sagittal deformity became disabling, and possibly even more dangerous once my spine was surgically rigidified, making it nearly impossible for me to “break a fall” in the normal way. (Even on foot, especially where pavement needed repair or was coated with winter ice, I have fallen flat on my face several times, on one occasion giving myself a black eye on the sidewalk. And just last week, while attempting to descend a stairway at an el station -- the elevator was out of commission -- I inexplicably lost my balance and landed flat on my back.)

In my last few pre-revision years, as my flatback deformity gradually closed in on my life, hopes, and powers of concentration -- as I learned firsthand the sheer depth and demoralizing chronicity of brute physical pain that we humans must endure at times --- as the boundaries of my life shrank to lilliputian proportions, sometimes confining me to my small apartment till I had to break out or start feeling slightly berserk -- the activity I kept up intrepidly, stubbornly, obsessively, devotedly, and with great and sustaining gratitude for what remained to me even at the farther reaches of this infernal deformity, was regular walking.

Those last few pre-revision-surgery years, I always had something to lean on, of course. As I traversed the streets and sidewalks of my city and a 'burb or two, I most often relied on one of those small walker-shoppers, outfitted for my idiosyncrasies, with its incorporated compartment for my briefcase/spare shoes/Diet Mountain Dew supply/latest writers' journal -- whatever tended to soothe my maelstrom of worries and anxieties.

Once I reached the end of a particular hike, at least one way, and decided to stop off for printer paper, shampoo, or flaxseed cereal, I switched to the assistive device most widely favored by flatbackers wherever we may roam (at least if we reside in industrialized societies replete with
such emporia as Target and Home Depot): the blessed and salvific
Shopping Cart. This ingenious invention provides every kind of support and comfort a flatbacker could require, with the possible exception of built-in speakers and a sexy crooner reminding her to "lean on me when you're not strong . . . ."

In general I made a point of walking aerobically at least every two to three days. I aimed for six miles a week and often doubled or tripled that. This was literally the only exercise I remained able to do, and I found it reasonable and helpful for me. It combined well with everything from my own version of metta (loving-kindness) meditation-in-motion, as I began to cull some of the methodologies from Hindu and Jewish sources, to the related idea of mindful walking, a kind of Vipassana meditation performed in slow motion rather than seated on a cushion. The latter has been popularized most notably by Thich Nhat Hahn, a Buddhist monk, peace activist, and founder of the Order of Interbeing as well as of a minimalist community and retreat center in France known as Plum Village. I’ve never been very adept at his slowed-down, meditational version of walking, however; somehow I find my energetic race-walking meditative and generative in its own way. The more I speed up, perhaps because of increased oxygen flow to my brain, the more easily I write many stanzas of spontaneous poetry in my head, or visualize new collage themes or assemblages to initiate back home in the dining room-cum-art-studio.

Someday someone may make it possible to record such creative inspirations while in motion. At present it seems to require just too much multi-tasking to reap the physical and mental benefits of a brisk walk while extracting some Smart device from one’s pocket and noting one’s brainstorms on a tiny touchscreen. (This might be less of a feat for seasoned teen texters.)

Interestingly, surgeons I interviewed en route to revision rarely asked me about exercise. When one did, I reported that I walked six miles a week. He scoffed, “You don’t walk six miles a week!”

“Yes, I do,” I insisted.

I suppose my walking stretched doctors’ credulity in part because it may be hard to imagine a deformed person willing to exhibit herself in public that way. But that was one inhibition I got over early. I was already on every woman’s postmenopausal journey to deeper self-acceptance, and I was not going to let some oddity of personal appearance or a few shocked stares from strangers set me back.

Harvard researcher Lisa Iezzoni, MD, MPH, notes in her book When Walking Fails that the disabled are typically expected to hide themselves away at home for everyone else’s comfort. I figured if people were uncomfortable at the sight of me, however, then they could stay home.

Tuesday, November 6, 2012

An Artist's Prayer

God in the hot encaustic wax
God in the paint and the palette knife
And God in the whimsical blog post
And God on the wall at Facebook --

Tender with with every foible:
Our cyber-self-promotion
Our private doubting and fearing
Our just not hearing

Architect, poet and author, cantor
Dwelling among us
Warming the room
(God the warp and the weft
The yarn and the loom)

I praise Your presence in the strangest places --
You who dance with the pixels,
Defining that elusive spot
Where poet and pointillist meet

I feel Your hand move mine about the keyboard
And pour myself once more
Into your great safekeeping

Relinquishing map and blueprint
Renouncing all planning and trying
(Can this be dying?)

I come to rest
In that inchoate space
That nameless grace
Beyond description

Acknowledging who moves the brush, the pen

Across each pristine page
Who sings the notes just audibly enough
For our transcription

I cede You all of me:
Each dark insomniac question,
The ego’s tedious whine
The motley fears, the bad digestion
My reconstructed spine 

All that I thought was mine
Abba, Ima, Midwife, Maker,
Endless compassion streaming in
Calming sustenance above the din
Melech ha’ olam, Ruach ha'olam,  

Empathic Rabbi, sweet Kwan Yin

I cannot count the times
You found me supine, flailing
Besieged and set upon
Despairing, failing

And raised me gently to my feet
And choreographed my journey on.

                             Elizabeth Rasche Gonzalez


Funny Thing About Writing A Blog . . .

. . . You find yourself repeating yourself without even realizing it.

Embarrassing as this may be, it can have its upside. By seeing what you are saying more than once, you may begin to discover what topics or aspects of life are more important to you than you realized.

I seem to have quoted William Carlos Williams on poetry at least twice in this blog. In fact, I seem to have written repeatedly about the healing power of poetry, which is not something I normally think much about. 

"Consciously," I tend to associate spiritual healing more closely with artmaking, Vipassana meditation, maybe a few body therapies I've been fortunate enough to experience (e.g, Feldenkrais). 

Yet before I ever heard of most of these things, something in me was driving me to read and write poetry almost as if my life depended on it. 

I remember sharing poetry with a kindred spirit at Walter Reed when I was 14, the summer I spent a week or two there getting sprung from my very last cast (hallelujah!). I wish I could remember her name. She was a beautiful young woman, one year older than I was and everything I was not, or so it seemed to me then. Most of us on the Women's Orthopedic Ward had fairly large problems: spinal deformity, bone cancer, paraplegia. Not to underestimate or downplay this one young person's condition, but in a way she was special. She had recovered from childhood polio with damage to only a single hand. She even had a special, classy sort of doctor:  not the usual assortment of motley orthopods who trooped through the ward, but some elite, rather aloof specialist known as a hand surgeon whom she saw at his specially appointed office in another part of the medical center.

I remember her kindness, her lack of judgment. Back home, few  girls that pretty and socially graceful would have chosen to be my friend. Maybe this girl was different in some way -- different in the way I was myself, intolerant of any sort of hierarchy or class system or categorization of the cool vs. the uncool -- or maybe we found each other simply because an Army hospital ward is its own kind of democracy and no patient is in much of a position to act snotty. In any case, we soon discovered that we both loved Edna St. Vincent Millay. Actually I had only read one or two of Millay's lyrical pieces -- "Listen children, your father is dead" -- but my new friend had a whole book of her sonnets, which she freely shared with me. 

It was a lovely book -- a special, grown-up book -- for marking and celebrating my emergence from plaster after eighteen months in casts.

. .  . and if the man were not her spirit's mate,
Why was her body limpid with desire?

I had just begun to understand such things, at least partially. Such things come to be understood, at least initially, through our physical organisms. Kim Rosen, writing of a somewhat comparable adolescent experience with a poem, writes, "At the time I did not understand how the rhythms, tones, and movement of a passage permeate the body so that the experience described becomes the experience directly lived."

Suddenly at 14, I was in a position to let things "permeate the body," as I moved back into my body after a considerable absence. 

I had gone into the first cast nearly flat-chested. I emerged from the last one with a woman's breasts. Getting used to this change was an amazing and somewhat lengthy experience, that June in Walter Reed.

There was only one place on that ward you could find any privacy to speak of -- behind a curtain in one of the ersatz "booths" in the ladies' room.  Fortunately there was never any waiting line for the booths, since it took me forever to (supposedly) finish peeing. Whenever I had the chance, I would spend the longest possible time behind that curtain. I would reach up under my shirt or nightgown and cup these two new parts of me in my hands -- incredulous, disbelieving -- just trying to get used to having them and to grasp (grasp literally, in fact, with my own two hands) that I included them now -- that they had come out of nowhere during the months of plaster and were apparently here to stay.  

I've wondered sometimes just how it was for other girls, like my hospital friend -- for the large majority who did not have to grow their breasts in secret. What was it like to see yourself develop over time, to graduate from one bra size to another?  My only frame of reference for the whole process was a period of pain on one side of my chest, a few months after I came home (in a cast, to another hospital bed) following my spinal fusion. I was rubbing against the cast there, and it hurt, and I couldn't sleep. My mother called the orthopedic specialist on our Army post -- the guy who had initially referred me on for all the plastering and bone-cutting that marked my early adolescence -- to ask what could be done so I would not hurt so much. He said to give me aspirin and wait for the next cast change several months hence. 

Puberty.  My puberty.  How could I have survived it without poetry?

I guess that's what I get repetitive about without meaning to -- the core-things, the things that have sustained me. Stuff that might just bear repeating now and then.  

Another fragment or two wafts back to me from my poetry-enabled youth -- this, I think, from Theodore Roethke:

Dark, dark the night, and darker my desire.
My soul, like some heat-maddened summer fly,
Keeps buzzing at the sill:
Which I is I?  

The mind enters itself, and God the mind,
And one is One, free in the tearing wind.