Revisionary Woman

Reaching Out Online

noreply@blogger.com (Elizabeth Rasche Gonzalez) — Fri, 27 Nov 2015 22:01:00 +0000

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,
Elizabeth

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?

-->

Why Me -- AGAIN?

noreply@blogger.com (Elizabeth Rasche Gonzalez) — Fri, 20 Nov 2015 19:22:00 +0000

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.

IMPORTANT NOTICE

noreply@blogger.com (Elizabeth Rasche Gonzalez) — Fri, 20 Nov 2015 18:08:00 +0000

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?

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

noreply@blogger.com (Elizabeth Rasche Gonzalez) — Fri, 29 May 2015 14:46:00 +0000

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.

Poetry in Motion

noreply@blogger.com (Elizabeth Rasche Gonzalez) — Sun, 16 Dec 2012 00:18:00 +0000

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.

An Artist's Prayer

noreply@blogger.com (Elizabeth Rasche Gonzalez) — Tue, 06 Nov 2012 21:08:00 +0000

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 . . .

noreply@blogger.com (Elizabeth Rasche Gonzalez) — Tue, 06 Nov 2012 20:43:00 +0000

. . . 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.

Poetry for What Ails Us? Don't Be Too Quick to Dismiss This Far-Out Prescription!

noreply@blogger.com (Elizabeth Rasche Gonzalez) — Mon, 05 Nov 2012 23:44:00 +0000

Do you like poetry? Do you hate poetry? Either way, I urge you to check out this singular book by Kim Rosen, Saved by a Poem: The Transformative Power of Words.

I'm still reading and savoring this treasure on my Kindle. (The book-book comes with a CD, and the ebook also includes audio downloads which I have been unable to accesss. I eventually bought the paperback as well, mainly to get the CD -- which merits a review of its own; it is a truly special experience, a coming together of various poets' voices in a variety of ways, and it may echo in your head long after you have heard it once or twice.)

Not your preferred way to spend a Saturday night? I guess you must have missed that great show on HBO with Russell Simmons and Spike Lee which grew out of the Brooklyn poetry slams. (I absolutely must note here that the poetry slam concept actually originated here in my home town, Chicago -- which has also been home to the Poetry Foundation since 1912.)

Rosen says we place way too much emphasis on trying to understand poetry, analyzing it to death. She maintains that poetry really comes alive in the body and thus in the soul. The idea is to find a poem that speaks to you deeply and take it into yourself, make it part of your breathing and dancing, your journey, your quest for healing. She says that poetry can heal us. She won't get any argument from me. But don't worry that her suggestions have anything to do with the old stuff, the rote memorization we may have been assigned in elementary school. She counsels a whole other way of getting into a poem and letting it into you, and she predicts that it will change your life. I can personally attest to the truth of that assertion.

Other cultures know all this already -- way better than we do out here in the ad-glutted, mall-ridden, frenetically monetized U.S. of A. I don't really have any viable theory of why we are so conflicted about poetry, why some of us are positively repulsed by it, and plenty of us never think about it or deal with it at all if we don't have to.

In 2006, in the heart of Baghdad and in the midst of ongoing clashes and explosions, a thousand people -- both Sunni and Shiite -- came together in a gigantic tent to share poetry, to dance, and to weep together. Soldiers from both militias ended up joining in, and volunteering to guard the premises. The first such gathering was followed by many others. Poetry broke down the barriers between the factions and became a powerful force for peace. It satisfied some fierce craving people may not even have known they had -- some profound and urgent need that seems endemic to all of this earth, to all of humanity, even if some of us do not yet realize just what it is we are thirsting for down there in the depths of ourselves.

According to Rosen, "in many parts of Latin America, Ireland, and the Middle East . . . it is not unusual for spoken poetry to be heard as part of everyday conversations." According to her students from Ireland, people in that land routinely share poetry by W.B. Yeats or Dylan Thomas well into the night at the neighborhood pub. She also notes that in Iran, poets are national heroes -- and that fans line up in the bookstores of Tel Aviv for a new volume of poetry the way they do here for a best-selling vampire novel. Cubans spray-paint the poetry of Antonio Machado on walls. In the Middle East, there is one TV channel devoted exclusively to poetry -- inspired by the most popular prime-time program in the region, a kind of poetry recitation contest along the lines of "American Idol" which has more viewers than news or sports.

It is impossible to summarize this wonderful book in a brief review, or to distill its major points. The author has spent years studying and teaching poetry as a pathway to spiritual healing, and she has so very much to say on the subject. She shares her own experiences of darkness and despair, relating how bringing poetry alive within herself brought everything else into alignment -- how a true encounter with poetry, a long love affair with a special poem, can strip a human being down to her authentic self, and return her to a sense of oneness with everyone else, and mold her into a formidable force for teaching and healing others.

Rosen provides clear guidelines for doing this -- for adopting a poem and taking it to heart, living with it and nurturing it and letting it sing in your blood and bones. These are really very practical and comprehensible instructions, although I realize that in my enthusiasm, I may sound rather mystical or oody-doody about the whole thing. It is really not some esoteric byway of civilization. It is a crucial, essential part of our heritage, spanning the millennia since Neanderthal peoples, or so some scientists theorize, first spoke to one another in a language which was more like a kind of poem, or poem-song.

Of course the author scatters various poems throughout the book, including some of my own all-time favorites. If any specific quotation may conceivably deliver her message "in a nutshell," it is these lines from the physician-poet William Carlos Williams:

It is difficult
to get the news from poems
yet men die miserably
every day for lack
of what is found there.

Expectations

noreply@blogger.com (Elizabeth Rasche Gonzalez) — Sun, 04 Nov 2012 11:10:00 +0000

Back in the Pleistocene when you were young (oh, say 15 or 17 or 20), did you ever picture how your life might be at age 63?

I certainly didn't -- not consciously. I never even imagined reaching such an advanced age. Yet below the surface, I am sure I must have had firm expectations. I must have known that my life would be much like my parents' life was when I was 20. What other example did I have?

I would live in a wonderfully tasteful, not overly large house in some pleasant suburb. I would be living with my husband, who would look much like my dad -- pleasantly paunchy, bespectacled, balding; thoroughly benign and kindly. We would each have our armchair after dinner, or our spot on the Ethan Allen couch, as we tackled the hopeless task of getting through a towering mountain of magazines and journals that resided beside us on an antique table picked up in England some time before the birth of our second child. Our two modest cars would be safely in bed for the night, out in the garage. Our children would be long gone, off to their own families and careers, but perhaps a mutt would remain with us -- snoring in his own designated armchair. We would sip our coffee while exchanging occasional erudite remarks. . . .

I thought of this tonight around midnight, as I walked the blocks down Devon Avenue from Western Avenue to California. It was Saturday night. As on other Saturday nights, Devon was bustling, with people of all ages going about their business despite the late hour. The people who made the most vivid impression on me were a group of men and women I had also seen on other Saturday nights, going to or from some social or religious gathering. They seemed to hail from Western Africa, although I was not at all sure of the country. They wore the most gala garb, both men and women in elaborate headdresses. Not for the first time, I had a powerful impulse to stop one of the women and ask her who they were and where they were from and what they did every Saturday night, in their lovely outfits, wafting perfume . . .

I myself was in jeans and athletic shoes -- my uniform -- hauling my boxy little cart full of groceries and other necessities, the pile of stuff secured by my ever-present bungee cord. I remembered shopping trips as a child, with my mother -- unloading the Ford or the VW bug just outside the kitchen door. I marveled at the fact that I have never really driven a car; that I do all my shopping on foot, sometimes hiking for miles.

I was on my way home to a small urban apartment on a quiet street lined with old trees. My building is also old, dating to 1927. I have lived in this building for more than 12 years with my grown son. My husband lives somewhere else -- has since 1998.

My parents had steady jobs. There was always enough money. They were financialy prudent and went with the program.

In almost every way I can think of, I have broken away and set myself adrift. Not willfully, you understand; I did not will a sudden devastating spinal deformity, a series of major surgeries, an income reduced to my monthly stipend from Social Security. I did not expect or plan on a marriage from hell. I always expected to have two or three kids, instead of a bum back. I still dream of owning my own little abode. I don't know if I ever will. I am not entirely sure it matters terribly much in the vast scheme of things. My apartment is cozy and pleasant, and I can almost afford the rent.

I make art. I am writing a book. I go to aquatics classes at a medical fitness center. I am good friends with my son, who is 30 years old and still getting his bearings. I would love to have a husband I could adore as my parents adored each other -- someone to grow old with contentedly. That wish may be as amorphous and evanescent as the image of owning my own place.

I am a little bit lonely.

I am not entirely sure where I am. I guess I mean that in the existential sense.

I am actually not really sure of anything.

I hope that this will turn out all right.

[Artsy Interests?] A Rare Rave Review

noreply@blogger.com (Elizabeth Rasche Gonzalez) — Tue, 30 Oct 2012 16:16:00 +0000

I don't know when I've waxed so enthusiastic about a product I reviewed for anyone. (I don't write too many reviews, and the ones I do write are mostly for Amazon.) This is a quick review I just posted at Jerry's Arterama regarding an itty-bitty bottle of something called Schmincke gold powder.

(Note: I don't know how some of my praise got classified as "Cons." Everything I have to say is a "Pro,"with the exception of the brief health and safety hypothetical.)

Not my usual blog post, but what can I say? If you are an artist, and if you ever use metallics, you will love this stuff. It's magic.

By Poetryperson from Chicago, IL on 10/30/2012
Your Rating: 5 stars
Headline: Definitely "Unparalleled"

Pros : Unique Gilding Medium, Dazzling, Great On Painted Tyvek, Fun, Creative, Unique
Cons : Small Amount Really Lasts, Reasonably priced
Best Uses : Greeting cards, Decoupage, Mixed-media Work, Paintings In Any Medium, Holiday Ornaments, Collage, Art
Describe Yourself : Artist
Primary use : Personal
Was this a gift? : No

This is an extraordinary product. I decided to try it after coming across a casual reference to it in an artists' publication. I ordered the "rich gold" and now plan to try the other hues as well. In my experience, this fine-particled powder is unsurpassed in adding indescribably brilliant metallic highlights or accents to any item painted with watercolors or acrylics. (I expect most artists will find it optimally effective when used judiciously; a petite bottle goes a long way.) So far I have used it in jewelry-making and mixed-media work, particularly when incorporating Tyvek. Just one caution: All of the labeling is in German, which I do not read -- so I am just guessing that one should exercise the usual caution accompanying any potentially "inhalable" powdered pigment. (It might not be the safest bet for use in artwork with young chldren.) Otherwise, I can not say enough good things about this surprising and novel product. I very seldom write a rave review of anything, but when I first dropped a few grains of Schmincke's into a small spritz of clean distilled water on the surface of an acryolic painting, then watched it "blossom" into figurative fireworks, the effect -- which was one of clarity and refinement; no tacky, glitzy, bling-y stuff here -- totally blew me away!

We're Way More Than Messed-Up Spines

noreply@blogger.com (Elizabeth Rasche Gonzalez) — Tue, 30 Oct 2012 15:16:00 +0000

As my book gets closer and closer to publication, I find myself thinking more about the Revisionary Woman as a whole person with a rich and varied life. Until now the blog, as well as our Yahoo Groups forum FeistyScolioFlatbackers, has focused fairly heavily on our medical problems, surgical crises, etc. Yet there is so much more to each of us than a bad back and a series of spinal reconstructions!

To focus on work and expertise, for instance, we include professional fashion designers, nurses, lawyers, novelists, nonfiction authors, motorcycle mavens, avid avocational cooks and bakers, devoted full-time parents . . . you name it. Many of us have been classified as permanently "disabled" and have had to give up long-term careers in which we invested enormous amounts of education, training, and real-world experience. Traumatic as this may have been, virtually all of us soon rallied, using our unexpected imposed "sabbaticals" to develop ourselves in ways we could never have foreseen when our jobs ate up most of our daily lives.

Take me, for example. Twenty years ago, I could not have been dragged into a hardware store. I have to smile at this now that an expedition to Ace or Home Depot has become a total pleasure -- at least on "good days" (pain level 6.5-7 or lower), I can window-shop for hours amidst the roof flashing or the PVC and copper piping or -- Lord, help us! -- ALL THOSE POWER TOOLS! Someday I will have my very own jigsaw, a Kreig jig for pocket holes, maybe even a workbench. For now I find plenty to do around my small abode with a decent corded drill and a panoply of bits plus the usual home-repairs basics (wood glue, spackle, anchors, etc.) and the painter's essentials. That's right: I moved into the usual stark white apartment but now have a lilac foyer and a cheerful blue and yellow kitchen with a snappy red set of built-in shelves. My bedroom and bath are soon to become equally colorful. OK, so maybe it takes me days to paint four small walls; that's simply because PT has taught me the importance of pacing myself and taking appropriate breaks. A project is no less well executed or aesthetically pleasing because it took forever to emerge from the blue painter's tape and dropcloths. I also find gratification in any number of smaller projects, from rewiring a lamp to building an (albeit rudimentary and interim) office work table screwed to two old bookcases of the right height for such chores as sorting and collating documents.

Not only am I the resident handywoman these days; I have accidentally found myself the resident artist. I gave up art, for the most part, in the second grade, when a delightful girl called Amy appeared at our school and turned out to be better at drawing than I was. Sad but true. Almost a half century later, newly handicapped and derailed by my spinal problems, walking disconsolately down a small street full of shops, I impetuously wandered into an art supplies store. The rest is history. For well over a decade now, I have found indescribable joy and healing -- of a kind I previously experienced only through reading and writing poetry -- in mixed-media art projects of every conceivable description. For more than a year now, I have dared to call myself a self-taught mixed-media artist without hesitation or apology. My place is bedecked with some carefully curated relics of my learning process, ranging from a fanciful wall hanging to a range of experimental collages and a wabi-sabi assemblage or two.. I craft my own jewlery and dye my own fabrics. I repurpose old clothing so as to feel rather chic even when my checking acccount balance is, say, $3.16.

And, oh yes -- my cooking has improved geometrically over the years! I'll plan to write a whole other blog post on that.

Accordingly, I have decided to expand this (let's face it, awfully quiescent of late) blog from assorted surgical-spinal aspects of my life to: My Whole Life, Uncensored. So watch for favorite quotes, mini-book reviews, descriptions of my latest project or newest discovery in the arena of cool art supplies, recipes, philosophies, hopefully even photographs and more pictorial content in general . . . To snitch from the title of my upcoming book dealing with flatback syndrome and botched back surgery, I am rebuilding my spine and my mind and my spirit and my life. With that kind of wide-ranging agenda, why constrict the subject matter of this blog? Why leave out anything potentially interesting or relevant to readers, even if it doesn't happen to relate to doctors or hospitals or Harrington rods?

-------------------
I can be changed by what happens to me. I refuse to be reduced by it.

Maya Angelou

Poem for the Day

noreply@blogger.com (Elizabeth Rasche Gonzalez) — Mon, 04 Jun 2012 01:10:00 +0000

Lately I have been very remiss about blogging. I've been been distracted by the definitive "Scoliosis Scandal" ebook I'm hoping to finish one of these years, as well as by personal situations and crises -- in particular, one shocking interpersonal offensive so transgressive, so horrifying, that I have not begun to be able to process it; it has brought many decades of profound love and caring, companionable dialogue and mutual respect, into question. All I can do is let it be for now. No matter how hard we may have worked on gratitude and forgiveness, we live in a world where others are never wholly knowable, where they can strike out in inexplicable ways -- can even, without warning, spew foul rage and hatred almost casually, like an old-time guy momentarily interrupting a sidewalk conversation to aim a gigantic black wad of disgustingly chewed, half-masticated, saliva-slick tobacco into the nearest spittoon. If you happen to be the individual mistaken for that spittoon, you may be left dumbstruck, reeling -- wounded, finally, into a kind of icy, shell-shocked paralysis . . . .

But enough of that subject.The Revisionary Woman strives always toward inner hope and healing, regardless of inevitable encounters with pain, uncertainty, horror, grief.; despite -- because of? -- those nights we find ourselves wrestling an unknown adversary to the point of exhaustion. (By the way, who said, "Hell is other people"?) (And what is that oft-quoted line from Hemingway, exactly? -- "Life breaks everyone; but some of us become strong at the broken places" -- I think that's close, anyway.)

For today, I just want to quote and preserve a poem I've saved for so long that it's becoming almost unreadably dog-eared in places. I snipped it from a magazine several years ago and am sorry to have no further information, except that the poet is David Whyte, and the poem is apparently from a longer work called "Sweet Darkness" -- a fitting title indeed for times such as these. I still do not understand it completely. The third stanza in particular remains somewhat obscure to me. But the poem as a whole feels wise and true. It speaks to me deep-down, stirs up a kind of tender, tentative consolation. Perhaps it will touch you too.

When your eyes are tired
the world is tired also.

When your vision has gone
no part of the world can find you.

Time to go into the dark
where the night has eyes
to recognize its own.

There you can be sure
you are not beyond love.

Sometimes it takes darkness and the sweet
confinement of your aloneness
to learn

anything or anyone
that does not bring you alive
is too small for you.

David Whyte, from "Sweet Darkness"

Poetry for Sickness and Surgery?

noreply@blogger.com (Elizabeth Rasche Gonzalez) — Wed, 02 May 2012 18:06:00 +0000

In my writing on spinal deformity, spinal reconstruction, and life reconstruction, I'm not sure I've said much at all about poetry. I've met so many people who dislike it intensely (including some doctors). Sometimes I think it's a matter of fearing the unknown, or of having suffered miserably at the hands of inept or boring instructors.

As a longtime "closet poet" and reader of poetry myself, I'm encouraged to see so many more of us opening up to it these days. The poetry raps that began in Chicago, thrived in Brooklyn, and became a popular feature on HBO may have helped to show more of us -- visually, powerfully, through poets' spirited use of their whole bodies to deliver a reading -- just how affecting, how exciting it can feel to experience or create a poem. I also seem to meet more and more people these days who have somehow stumbled on a particular poet and have found themselves unexpectedly transported, even transformed. The names that seem to pop up most often are those of Rumi, Rilke, and the contemporary U.S. poet Mary Oliver.

It may not be widely known as yet, but poetry can actually be profoundly healing for those of us with painful and challenging medical conditions. In fact, there's actually a school of therapy focused on reading and writing poems. John Fox may be its best known practitioner. I can personally recommend one of his books, Poetic Medicine: The Healing Art of Poem-Making, which I have had in my own library for years. It's full of wonderful quotations, beautiful and moving poems by "patients" (as opposed to known poets), and exercises for eliciting the poetry in yourself. It begins, "Poetry is a natural medicine."

I also love the book's preface, written by Rachel Naomi Remen, MD -- a specialist in internal medicine who now works as a kind of counselor/professional listener/mentor/modern-day shaman with seriously ill cancer patients, as well as with medical colleagues and students who seek her help during times of great pain or crisis. She has authored two poetic books of prose -- of stories, essentially -- Kitchen Table Wisdom and My Grandfather's Blessings, which have often inspired and comforted me on my long journey through flatback syndrome and unexpected disability. (See http://being.publicradio.org/programs/listeninggenerously/)

Dr. Remen's preface to the Fox book on poetry therapy begins: "As a girl, I hated poetry. So much more the irony that I have spent hours, even whole days, writing and reading poetry with people with cancer, with their doctors and their nurses, and with their family members. But this poetry is different from the poetry of my youth. Much of the old poetry was pretentious and erudite, full of references to mythology or the ancient Greeks, poetry whose words I could not easily understand. The poetry of my youth made me feel diminished.

"But this poetry," she continues, "this poetry makes me proud to be a human being." She explains that "[p]oetry is simply speaking truth. Each of us has a truth as unique as our own fingerprints. Without knowing that truth, without speaking it aloud, we cannot know who we are and that we are already whole." (By the way, this doctor has also been a patient herself, with a chronic debilitating illness first diagnosed when she was 15 years old. She has undergone as many major surgeries for her Crohn's disease as I have for my spinal deformities.)

Why do I bring all this up now? To cut to the chase, I have only recently come across the first poetry I've seen which deals specifically with scoliosis surgery. Its young author is featured at the beginning and then briefly again at the end of this article about a poetry therapy conference. If you decide to check it out, I hope will you find it as enjoyable as I did: http://www.poetryfoundation.org/article/178585

Being Where I Am

noreply@blogger.com (Elizabeth Rasche Gonzalez) — Tue, 21 Feb 2012 01:15:00 +0000

I've been thinking about a recent post at our website for people grappling with botched spinal surgery. (You can access this group at health.groups.yahoo.com/group/FeistyScolioFlatbackers)

The general topic of discussion was how we feel we're doing, individually, following massive revision surgery to remake our deformed, crippled spinal columns. Some of us are riding around on Harleys and planning skydiving expeditions. Others are doing well when we can get out of bed in the morning. It's important not to compare one's own progress with anyone else's, though inevitably some of us do.

Now, please bear with me for a prefatory comment before I quote directly from the post that stimulated my thinking. This blog -- the one you're currently reading or checking out -- is available to anyone on the Web who wants to view it. In contrast, the content of the "Feisty Forum" is private, available only to those who have registered as members. This policy serves: (1) to facilitate the free expression of all kinds of tumultuous emotions we experience in the process of undergoing major spinal reconstruction, and (2) to protect the sensitivity of personal medical information. Because of our serious commitment to protecting privacy, I have chosen not to disclose the name of the member who posted these comments. I trust she will not mind being quoted briefly, albeit anonymously. She wrote:

Everyone's story is different and everyone's condition is personal so maybe their triumph is walking their dog or going shopping or not having to use their cane that day.

This is so true, and so insightful, and it really hit home with me.

Throughout the past difficult decade or so, I have made a concerted effort to focus on my blessings -- keeping my gratitude journal, for instance, has helped me enormously-- and the idea expressed here, the emphasis on "small triumphs," will help my little Positivity Campaign even more. It's a matter of adopting a particular point of view: "Now I'm going to think about me for a minute -- myself, as distinct from everyone else, including anyone I might be tempted to compare myself with. OK, so I haven't gotten on a Colorado ski lift or a flight to Dublin; not yet, anyway -- in fact, I may never do those things -- but what have I done lately? What small, simple experience has brought me joy? What have I accomplished that I couldn't do before revision surgery straightened me out?"

I take the elevated train once in a while, making sure when possible that I can board or get off at a station designated "accessible." To qualify, the station must have an an elevator, so I don't have to get up and down a long stairway with my go-everywhere shopping cart (one of those handy box-shaped totes on wheels which folds up when you aren't using it -- although mine usually has just a few too many items in it for me to carry them comfortably in my arms or a backpack, should I have to fold up the cart). I live in Chicago, and I often debark at the Loyola University el station. This means transferring self and cart to a high, narrow platform between two tracks and walking some distance to the elevator (hoping that it's not out of service!).

Talk about small strides and simple accomplishments! I remember when I was much more newly revised, barely out of my surgery but eager to avoid a completely homebound life -- and farther back, to when I had not yet had my surgery at all, when I was coping with daily physical agony, a grossly visible and intrusive deformity, and chronic, diffuse apprehension. I would get off the el at this station and struggle with my balance, my memory of too many falls, my concern about any ice that had not yet been cleared completely, my whole baggage of fears and worries. Often I would teeter on the edge of a full-scale panic attack. I generally had a frightening recurrent fantasy of being bumped by someone else in a hurry and toppling over onto one of those much-too-close tracks to my left or right, possibly risking pulverization by an oncoming train.

Mercifully those days are over, at least for now. I get off the train feeling confident and in control, purposefully heading toward the elevator, with my mind on any number of things: a story I may want to write, or the next step of a collage in progress, or a possible reply to someone at the Feisty forum. I may be hoping that my connecting bus isn't too delayed or considering making a stop at the little newsstand tucked away on the ground floor. I am just another commuter on a schedule or with a simple itinerary, free of foreboding, enjoying a warm splash of sun on my face or wrapping my muffler a little more snugly against a chill wind off Lake Michigan. I am fully alive and so very glad to be right where I am, doing just what I am doing.

Recently I've been traveling a little further afield -- heading downtown to explore a bit more of Millennium Park or to see what new and interesting architecture may be under way -- or to window-shop at Water Tower Place, or visit one of the vast bookstores that so exceed what we have in my own neighborhood, or splurge on a small bunch of fragrant cut flowers from a favorite florist for my living room or bedroom.

Recently I walked around a sector of the city that used to be one of my old stomping grounds years ago, when I was young and robust but had a bunch of seemingly earthshaking worries and insecurities I could belabor for hours to some exorbitant, long-suffering therapist on Michigan Avenue. Back then I traversed these sidewalks dressed in my self-consciously chic and tasteful business duds complete with spindly-heeled Charles Jourdan pumps acquired -- during a quick break amidst a frenetically goal-directed business trip -- in the headier neighborhoods of Manhattan in my late twenties or early thirties.

This particular area -- the gentrified, upscale environs of North &
Clybourn (a decidedly inaccessible station, although I somehow managed the stairs), not far from the formerly rustic apartment I once called home -- has undergone so much development and renewal that I can barely recognize it. And I have undergone some equally cataclysmic changes myself.

Today, vs. "back in the day," I'm comfortably and simply dressed, happily stripped down to my essentials in a society already too glutted with look-at-me outfits and consumerist excesses. I'm especially thankful to feel so supported and grounded in my omnipresent gym shoes -- so well-versed in mindful (Vipassana) breathing, in case of the slightest vestigial anxiety attack -- so pleasurably unconcerned with what some oblivious stranger might "think of me." I'm so glad and grateful to be a grown-up in some comforting sense -- possibly, at least in more reflective moments, an emerging "elder." I'm so very relieved to have shed so much that ultimately matters so little.
-->

"Here I Am!"

noreply@blogger.com (Elizabeth Rasche Gonzalez) — Sat, 14 Jan 2012 20:24:00 +0000

--> Okay, here's just a brief "snapshot" from my own story. An early version was originally posted on a now-defunct private blog last summer.

Here I Am!

From the Boonies
April 27, 1966

Elizabeth Rasche Gonzalez has invited me, her teenage alter-ego, to join this weird blog. Hey, I am only 17, but if it's existential, I'm in, Ladies -- I really dig Camus. Sartre? Not quite so much. Simone and Jean-Paul actually lived together out of wedlock! I wonder if I would would ever have the nerve. The Colonel (my dad) would have a stroke, and I might have a stork. No, seriously, I know all about sex thanks to Margaret Meade and Lady C.'s Lover. I also read Dr. Marie Bonaparte, but I didn't get the bit about the 2 kinds of female orgasms of which one is the "immature" kind. Was she for real? Was she just trying to get in the boys' psychoanalystic frat? That was some weird book.

So, is that the kind of thing you are going to talk about here, sex and existential malaise? My girlfriend Sharman and I started a literary magazine at school, and Sharman wrote a poem for it called "nada." It was very deep. We love our existentialism, Sharman and I. Sharman has abstract art she painted on the ceiling of her bedroom. We always wear high heels to school. When we walk down the hall, everyone thinks the teacher is coming. We are both on the same diet. We went to the pancake house for dinner last week and ordered the boysenberry pancakes without the pancakes, and would you believe they threw us out? Sharman does not get along with her mother either, mainly because she is dating a very nice boy on the basketball team who is not her race, and Sharman's mother is prejudiced. (Sharman's family is from Australia, for what that's worth. But we have plenty of bigots right here in Alaska, U.S.A.)

I am not dating anyone right now because Roy and I got serious and Roy went to talk to the priest about it and the priest told him to forget about Protestant girls. Last May Roy and I were just 30 minutes late getting home from the junior prom, and who should be pulling in right behind us, in the Ford Country Sedan, but the Colonel! He was actually out looking for me! (OK, so it was pretty late at night, but it was broad daylight because this was May in Alaska. I ask you, what can any two kids do discreetly in Roys' parents' Rambler station wagon in broad daylight?) The Colonel said he was worried that something had happened to us, like an accident. He had me when he was extremely old, 42, so he is more like my grandpa -- a total Victorian-Edwardian mentality. I am a senior now, and I am still mortified.

I can't wait to get away from this place. I will meet mature men and will smoke Viceroys to my heart's content without anyone giving me the business, and I may read some Kierkegaarde. Meanwhile, I have to get through a semester of endless ennui up here in nada. I am not a happy girl, I tell you. I mean, I am happy because I am down to two peaches for lunch every day and my size 7 skirts are baggy on me. But I have a few little problems, like crying for hours and hours at "that time of month" and wondering if anyone will ask me to the Senior Ball. I am starting to hate all these bourgeois rules and conventions, like wearing a damn girdle to hold up your stockings all day and sleeping on brush rollers and being thought weird if you want to do anything other than be a nurse or a teacher or a stenographer or a mommy. I love to write stories and poems, and I love to go to play rehearsals because they take me out of my trivial meaningless life for a few hours. I play Anne Frank's mother and Mike Grube plays Mr. Frank. We rehearse in the auditorium on the actual set, so every evening I get to lie on a real bed right beside Mike Grube. He is so cute in a dark academic way -- a very serious boy, just my type, but I doubt if I am his type. I am no one's type. But you know that poem by Edna St. Vincent Millay, "and if the man were not her spirit's mate/Why was her body limpid with desire?" I'm telling you, I get limpid ever night at those play rehearsals, lying so close to Mike. I don't know how much longer I can take it. No one in this school knows me. They think I am so nicey-nice and a total prude, and if they ever got inside my head they would be shocked out of their gourds.

I am doing a zillion things to keep myself occupied, including teaching Sunday School. Last Sunday one little boy came in so somber, the son of our Sunday School superintendent on the Army post. (My parents go to the log cabin Episocopal Church downtown on Second Avenue, but I like the nonsectarian services on post.) Anyway, our unit that Sunday was on missionaries, and I was asking the kids if they knew of any countries where there were missionaries, and the sad little boy piped up and said "Vietnam?" I said, "Wow, what made you think of Vietnam?" and he said, "Because my dad just went there." It all happened overnight. It was a "secret" troop movement, no advance notice -- the Major, our Sunday School Superintendant, must have just driven 20 miles down the road with the others to Eilsen AFB and been flown out to Vietnam, just like that. I can't tell you why exactly, but I was so messed up -- I had such a bad, sad, deep dark feeling about this. I could not stop thinking about it. I am even having creepy dreams about it. There is something hidden going on in this world, and especially in our country, and I do not understand what it is, but something tells me I am going to be finding out real soon.

It won't be long now. I'll be going off to school in the lower 48 and having a real life and finding out what is actually going on in the world. I wonder if I will have great adventures. I wonder if I might someday live with someone, maybe even out of wedlock? Maybe I will finally be free to dress like a truly chic woman and a sophisticate. They sure don't make that easy up here -- you can get your clothes from a couple little out-of-date shops or the minuscule Northern Commercial department store or, if you're totally desperate, the Wards catalogue. Well, at least I can wear "normal" clothes now. Thank God I got that blasted surgery out of the way and got cured of my scoliosis.

I have to go write a composition for Mrs. Kozlowski on my beloved old Olivetti tyewriter, and then I think I will listen to Eve of Destruction for a while.

Take care,
Fairbanks Liz

Flatback Handbook Still in the Offing

noreply@blogger.com (Elizabeth Rasche Gonzalez) — Sat, 14 Jan 2012 19:35:00 +0000

There's been a bit of a delay in the definitive Feisty Handbook. I'm afraid my timeline was overly optimistic in view of budgetary constraints, glitches in contacting certain key contributors, etc.

I am also considering a major structural/thematic/"genre" change: Concise facts interspersed with stories. As Rachel Naomi Remen, MD, argued so persuasively in her 2005 NPR interview with Krista Tippett, We are our stories. Our lives, our world, are made up of stories, not facts.

I have made a provisional decision to use this blog as a kind of laboratory for scoliosis/flatback stories. Please feel free to share yours!

Coming Soon: The Definitive Feisty Handbook!

noreply@blogger.com (Elizabeth Rasche Gonzalez) — Tue, 15 Nov 2011 01:38:00 +0000

Just in time for the holidays, you'll be able to order the book that's been in the works for a decade! -- Life After Scoliosis: Coping with Botched Spinal Fusion, Flatback Syndrome, and Revision Surgery.

Stay tuned for further details . . . .

Looking Back

noreply@blogger.com (Elizabeth Rasche Gonzalez) — Wed, 23 Apr 2008 21:02:00 +0000

-->Written at age 18 (third-person, in a short story):

I know what she wants, but it's absurd. She wants to write. She wants to live in a dank, arty flat, [with] Peter or another Peter, and write, and have people say, "You can write, Jocasta,"
Written "just a few years" later:

I want to thank You (Whoever or Whatever You may be).

(I want to bless You. I even want to bless me.)

Why this change of heart, You ask? I'm not sure I can articulate all the reasons for my thankfulness,. But let me try and summarize a few . . .

I am thankful, for one thing, that my name is not "Jocasta." And that I know for sure -- no outside affirmation required -- that I can write. That I am a writer, for better or for worse; inarguably, incurably.

I am thankful that the flat in which I live is not "dank." ("Dankness" does not sound too good for my lil ole arthritic joints.)

I am thankful I had no clue, at age 18, how things would turn out for me beyond all that youthful longing and malaise. I am not sure that I could have coped with such knowledge -- that I could have summoned, at 18, even a fraction of the strength I would eventually need to go through what I have come through.

I am thankful for the strength I have found.

I am thankful for the friendships I have known -- more thankful, after all, than for the romances, the "violins and fireworks," the Peters who broke my vulnerable adolescent heart I never did live with "Peter," or any Peter. I did live with a Robert (I'm no longer entirely sure why) for a quarter-century or so..And I worked with a child psychiatrist, after law school, whose name was Peter. He was a decent, interesting guy to see for three years at the office and at various work-related outings and functions.

I am thankful for the work I have had and have done..

I am deeply thankful for my family. And my surgeons.

I am hugely thankful for the small, daily, sustaining things. For a ripe, sweet mango. For papers and paints and half a jar or so of Golden's Acrylic Matte Medium. For my intrepidly hopeful temperament. For a Presidential candidate who just might change things. For change. For a spell of summer weather at the end of April For Nancy Griffith, Debbie Friedman, Rascal Flatts, and J.S. Bach.

I am thankful for words. And for Word.

I am wildly, hugely, profoundly thankful that I am no longer 18 -- that life has turned out to be better, broader, more beautiful, more precious (albeit a whole lot harder) than I could ever have imagined back then..

Response to Cara's Comment

noreply@blogger.com (Elizabeth Rasche Gonzalez) — Sun, 23 Mar 2008 21:54:00 +0000

Thanks for your comment, Cara.. The information on vertebral stapling is certainly interesting. You might want to consider posting this information at a site that deals more with initial scoliosis correction -- for instance, one of the National Scoliosis Foundation forums or the Scoliosis-Medical Yahoo group.

This particular blog is intended as a kind of road map, guide book under construction, and online source of mutual support and encouragement for women who have long since undergone the "old-fashioned" kinds of scoliosis treatment, followed by later revision surgeries for adult deformities resulting from the hardware implanted in their backs when they were younger. I hope the blog may also be of interest to any woman faced with a profoundly life-disrupting condition -- MS, cancer surgery and chemo, diabetic complications -- perhaps even a hurricane or tsunami; anything, in short, which forces a person to retool, reassess, rebuild, and renew.

While those of us with histories of AIS (adolescent idiopathic scoliosis) often do have kids -- especially daughters -- who likewise develop scoliosis requiring treatment, this particular site is intended specifically for us -- the grown-up moms who have already had our invasive fusions-- who, let's face it, may have few if any distinguishable vertebral segments remaining after all those osteotomies. Fortunately our children or teens with the misfortune to develop scoliosis as we did are likely to have easier and less invasive options available to them, as you suggest here. At least in Los Angeles, some children have undergone microsurgical spinal fusions. I am also very encouraged by the continuing development of technology for artificial disk replacement. But again, that is a subject for a rather different site from this one, and I certainly encourage you to check out some of those other sites if you have not already done so. The NSF, in particular, has forums devoted entirely to child and adolescent scoliosis.

That said, Cara, as far as I know you are the first person to post to my new blog, and I am delighted to have a comment from you!

I encourage other readers to post their thoughts in response to my own commentaries -- especially readers who have undergone major life-disruptions in their thirties, forties, or fifties. I envision this blog as a meeting ground, idea bank, and mutual-support-resource for those of us who are committed to rebuilding, recreating, whole new lives for ourselves after a period of trauma and derailment.

All the best to you,
Elizabeth

Plastered, or I Was A Teen-Age Mummy

noreply@blogger.com (Elizabeth Rasche Gonzalez) — Mon, 03 Mar 2008 21:12:00 +0000

Today I started an email to a friend with scoliosis whose young daughter has developed scoliosis as well. But it turned into a memoir more suited to a weblog, so I've decided to post it here:

I can't recall offhand how soon B _____ (and you) go in for her x-rays and evaluation, but I am certainly thinking about you both and hoping for the best. This brings back the anxiety of my own early adolescence, ages 12 and 13, when they were watching me for a year, giving me exercises (chin-ups) I couldn't do which theoretically might help, and ultimately wrapping me up in a humongous plaster Risser jacket - thank God they no longer subject kids to those casts. (Are you old enough to have worn a Risser yourself? I can't recall at the moment.) My first-ever orthopod, a specialist near the Virginia Army post where my father was stationed at that time, told us that this this torture device with its incorporated traction was invented by a person of unique genius, a Dr. Joseph Risser in California. Knowing Dad was soon to retire from the military, this doctor opined, with a nod in my direction, "You know, Colonel, for her sake you might want to consider settling in California. California is the Mecca of Scoliotics."

I got my first-ever Risser jacket on a rack-resembling Risser table in a bleak Richmond hospital for "crippled children." I refused to have surgery there, and the grownups in my life continued to pressure me but did not insist, When I had been plastered for six months, my father got me an appointment at Walter Reed Army Medical Center in Washington, DC. The Army specialists handed me an ultimatum: "Gotta operate, no doubt about it, save your heart and lungs, keep you out of a wheel chair -- check back in two weeks for your spinal fusion."

The night before the surgery, newly installed in a hospital bed, I wanted only to split. I told my mother I could not go through with it. I could not let those men in scrub suits open my back and saw up my vertebrae and solder everything back together with a paste made of ground-up bone excised from my pelvis. My mother said, "Well, you are thirteen years old. We can't make you. It has to be your choice.(Such permissiveness was not characteristic of my parents except with respect to my scoliosis. After all, who wants to face the repercussions of a possible surgical complication after consenting to protracted carpentry in the area of a child's spinal cord?) My mother added, somewhat surprisingly (since she was a fundamentalist preacher's daughter with a doctorate in Classics from Cornell and a private but longstanding allergy to religion), "Why don't we pray about it?" I said o.k., although I'll bet that was the only time after age 5 I would have been caught dead saying prayers with my mother.

After visiting hours ended and my mother departed, I prayed again in my own head for a while, expecting nothing. All of a sudden, a sense of vast, ineffable peace settled over me, enveloping me in warmth and a profound sense of absolute safety. I marveled, "So this is the presence of God they have been talking about all these years! So the stuff they said about that in Sunday school is true after all . . . so God is true after all." I understood that I was being asked to go through with the surgery. A few hours later, when they came with the gurney, I did not protest.

That first fusion -- not the one that messed me up; that was the second fusion, with instrumentation, at age 38 -- was a pretty rugged experience. Afterwards, I was in horrible pain for days. I know things are much better and easier for kids these days. And if, God help us, B______ does need surgery, she will probably have one of those short, removable braces I sometimes had as an adult (otherwise, I wore no brace of any kind following adult fusion). That short job, the so-called TLSO, is so much more comfortable and endurable than those antiquated casts -- removable for a shower, doesn't require the poor kid to wear huge, odd clothes. I remember that my mother, bless her heart -- we had a terrible, stormy, conflicted relationship, but she did a few things right -- sewed me a whole wardrobe of muu-muus in the fabrics of my choice, including one very pretty, dressy one I wore when I actually went to the eighth grade dance with my good friend Charlie. But the need to wear a muu muu at all -- aughhhh! Some time I will have to ask people online what they wore over that humongous cast. Besides a muu-muu, I'm not sure what you could have worn except a tent.

At a later stage of my career in plaster, when I was 14, I made my dad take a picture of me in my last cast. By that time, I'd been switched to a "Minerva jacket," which incorporated a kind of helmet that went all around my face. The picture was taken shortly after church on Sunday, outside our house, and I was wearing a size 20 Sunday suit. I think I wanted the picture as evidence that I had been there and done that -- I had withstood something hard that not all kids are asked to deal with, and I had done so with a modicum of panache or bravura (along some early-1960s teenage bad taste, e.g., in Sunday purses). I am fairly sure I would have been wearing a jaunty Jackie Kennedy pillbox hat that Sunday, except it would never have fit over the plaster helmet encircling my brow. I'd been in bed for six months in a longer Risser jacket and had spent hours lying on my front -- a couple feet out over the side of the bed, supported by the plaster around my chest, with my younger brother's child-size card-table under my face at just the right height for reading and writing. This put enough pressure on the chin-piece that my upper front teeth began to stick out. The spine doctors sent me to get a retainer, then accepted the prosthodontist's decree: Switch her to a cast without chin traction so as not to worsen her malocclusion. Hence, the lovely Minerva.

The day they created my first Minerva -- a day everyone was admittedly somewhat distracted, waiting to learn how Soviet Premier Khruschev would respond to President Kennedy's imposition of a naval quarantine on Cuba -- the erstwhile plaster-room crew at Walter Reed was pleased with their final product. Relieved to have the cast change over with, I reached for the pair of thick spectacles I wore at all almost all times. But my glasses would not go back on my face -- the plaster Minerva helmet left no room for the ear-pieces. Following some short bursts of moderate cussing, the techs and the supervising resident decided to cut ear-sized openings on each side of my head and insert flat but narrow metal strips vertically, bridging the opening and holding the helmet together while allowing access to my ears. I was able to push the earpieces into place by routing them under the respective new metal girders. In that pious picture of me in my Sunday duds at age 14, verily I resemble the kind of scary being who might have tested our fairest Lord Jesus by flying him up to the temple parapet, etc. -- or, rather, I resemble a non-agile, mildly rotund version of that evil beast. And I had to go to my first day at a whole new school, in a whole new town, in the ninth grade, looking like that. I can almost understand -- almost -- why a small band of teen sadists and junior sociopaths had a field day with me for the rest of the semester.

Thankfully I had to look that way for just that one semester of ninth grade, from January to June. My parents had moved to Pennsylvania from Virginia the previous August, toting me along in the back of the family's Ford Country Sedan. The two of them squeezed into the front seat with my brother after turning down the back seats and sliding me into the cargo hold. And off we went . . . . (Insert a few strains of Simon & Garfunkel at this point in the teleplay; actors playing my parents, my brother, and me warble in harmony, "We've all come/To look for A-me-ri-ca . . .") When we got hungry, Dad pulled the Country Sedan into a Big Boy drive-through, and I plunked my OT-supplied "prism glasses" over my regular glasses so as to read the menu from my head-back position. (Not that I really needed to read the menu). Then the front-seat sitters handed back my burger, fires, drink, sundae, etc. and the four of us dined in style before before heading back on our excellent adventure. Soon after our arrival at the new house in Pennsylvania, we were hosting regular visitations of "homebound teachers" to my bedroom: a teacher a day, one for each of five subjects.

Then, in time for Christimas, I got my walking cast; and in January, I attended my new school for the first time. As if to compensate for any physical or social incapacity, I threw myself into
Thespians and Young Scientists of America. I co-led a Girl Scout troop, I even went to a weekend Scout camp-out in my walking cast -- bailing, along with everyone else, only after a torrential rainstorm came by in the wee hours and washed all our tents downhill.

In June I got sprung. The surgeons at Walter Reed told me I was all fixed and would have no further problems in connection with my spine.
____________________________________________

That's not how doctors treat adolescent spinal curvatures anymore. Girls (and the very occasional boy) with severe progressive scoliosis are not made to go through puberty in 20-pound plaster mufflers and overcoats which hide their own bodies from them for a year or two and make normal teenage life all but impossible.

Kids still have fusions for scoliosis -- this will continue until sufficient funding materializes for research into the causes and prevention of adolescent idiopathic scoliosis. But fusion is simpler and safer than it was back in the day; in some cases, it can even be performed microsurgically, allowing the patient to go home from the hospital a day or two after surgery and sparing her that unspeakable degree of post-op pain. (I have no doubt why the pain was as horrible as it was when I was 13. The prevailing theories at that time seemed to hold that, except for general anesthesia to keep us quiet during surgery, children -- unlike adults -- had no need for pain medication. We got no morphine, were lucky to get an aspirin, after having our backs incised,our veretebrae sliced up, whole segments of our spinal columns reconstructed with the aid of ground-up bone-morsels carved out of the pelvis or some ribs.)

I've met some formidably feisty women who shared my own Boomer-with-Scoliosis Experience. These women all have a certain quirky, unpredictable sense of fun that belies their generally exceptional conscientiousness and stoicism.They surprise you when you least expect it with a hilarious, sometimes risque anecdote from their latest hospitalization -- or, if the conversation turns "nostalgic," with memories of adolescent rebellion and resourcefulness while confined to the dreaded Risser Jacket.

One woman demanded that her surgeon mold a shapely, anatomicaly correct cast-- allowing her developing breasts to "breathe" instead of squishing them flat in usual Risser fashion. I''ve seen a picture of this woman in her early teens, and it is astonishing. She is the only girl I have ever seen looking sexy and voluptious in a Risser jacket. No wonder she also, reportedly, climbed out the window while she was supposed to be immobilized in bed, to go roaring off with a boy on a motorcycle.

Another spirited woman told me she somehow managed to elude detection by her parents, including a demanding psychiatrist-father, while acquiring and using her self-prescribed stash of personal medication. Sentenced to months in plaster prison, she made the experience bearable by staying stoned for the duration.

What Happened II -- The Longer Version

noreply@blogger.com (Elizabeth Rasche Gonzalez) — Sun, 02 Mar 2008 01:48:00 +0000

For the mini-version of this story -- a succinct synopsis for today's fast, efficient Web users -- please see the first entry on this blog. (I really should acknowledge the inspiration for that first version, which I neglected to do. I hereby record my grateful thanks to my instructor for Legal Writing I and II; The E. Wood Memorial Foundation for the Promulgation of Skimming, Skipping, and Speed-Misreading; and, of course, the folks at Speeder's Digest Condensed Thoughts, 1 Passing Lane, Swiftville, NY.)

"What HAPPENED to you?"

This is what I have heard from one Harrington-rod veteran after another over the past seven years -- and most recently and regrettably, from a new generation of Luque rod patients as well. So many of us who underwent spinal fusions for scoliosis -- who had "state of the art" hardware implanted in our backs, courtesy of the late Paul Harrington, MD, et al.-- were ultimately told that we were good to go. We were fixed, repaired; we were all better; we could expect to live long, normal, healthy lives, free of any further orthopedic or neurosurgical intervention.

And we were -- for a time. But then, maybe 2-3 decades later, and often (or so it seemed to us) totally out of the blue -- while our health and our lives were just fine, thank you -- we found ourselves metaphorically clobbered by reality.

Disaster

Boy, did we get a shock. And when the shock hit, we had no clue what was happening to us -- no preparation or frame of reference for the disaster that twisted our bodies and decimated our spirits.

For the longest time, moreover, our previous surgeons gave us little help when we reluctantly found our way back to them. The Harrington rod -- for thirty years, the "gold standard" of scoliosis treatment --was in fact a colossal bust and a widespread debacle; but for some years after surgeons began to grasp this reality, many discreetly declined to let us in on the secret. (One notable exception: Stephen Ondra, MD, and colleagues. Their 2003 article, "Management of Iatrogenic Flat-Back Syndrome," http://www.aans.org/education/journal/neurosurgical/sep03/15-3-8.pdf , is a must-read for anyone with hardware/fusion-related problems. Another excellent source of factual information is Dr. Michael Lagrone's patient-friendly website, http://www.scoliosismd.com/articles/flatback.htm,which includes an outstandingly clear clinical illustration of a person with flatback syndrome.

Other doctors apparently just did not realize or recognize that people who came to them with old fusions, in terrible pain and increasing deformity, had anything diagnosably wrong with them. We can hope that more MDs these days are up to speed on flatback syndrome and understand the crucial importance of examining/x-raying the patient's spinal anatomy and mechanics in the sagittal plane -- i.e., getting the "side view."

As recently as eight years ago, however, a deficit of savvy doctors compounded our pain and confusion incalculably.

There were stories . . . .Some Harrington rod casualties, for instance, tried to see their beloved original surgeons and were flatly refused appointments. Some were handed dubious or even outrageous explanations as to why their original records and x-rays were no longer available. Many of the afflicted sought out new spinal specialists who ordered new spinal films, only to send the subjects away with the decree that everything was fine -- their fusions were solid, their complaints groundless.

Thus it came to pass that about seven years ago, at the turn of the millennium, a small group of us H. rod survivors found ourselves stumbling around in the dark, coping with intractable daily pain and progressive deformity which had come at us out of nowhere. As kids we had been diagnosed with severe progressive scoliosis (usually some time around puberty, so our condition was classified as Adolescent Idiopathic Scoliosis) -- a lateral curvature of the spine, resulting from unknown factors, with the potential to damage our hearts and lungs if allowed to progress unchecked. We had been through grueling adolescent spinal fusions, unsightly body casts (most often the infamous "Risser jacket"), disruptions in our schooling, months of enforced bed rest and isolation from other teenagers. Finally, at the culmination of a medical ordeal spanning months or years, our surgeons had pronounced us cured.

But now -- 10 or 15 or 20 years after that youthful "happy ending" -- something ominous and obscure was disrupting our adult lives: a whole new deformity, in a whole new plane. Put simply, the hardware had corrected our deformities in the coronal or frontal plane while destroying our lumbar lordosis and creating a whole new sagittal-plane deformity of the "hunchback" variety.We found ourselves bending further and further forward, unable to hold our bodies upright. We had to rely on shopping carts or walkers for support. Our necks were becoming stiff and arthritic from chronic hyperextension, that is, all the "craning" we had to do, trying to raise our heads to see where we were going. Our lower back pain was turning unbearable. Many of us had to stop working at jobs we loved. We had trouble with simple household tasks, with fitness regimens we had always enjoyed. Droves of us needed to abandon our beds for an adjustable reclining chair or perhaps a leased hospital-type bed -- finding it literally impossible to lie down in a supine position (let alone in a prone position, face down). We found ourselves grappling with exhaustion, with profound discouragement or even with clinical depression. We searched and searched for those special pain management programs and professionals -- in some regions, few and far between -- who could prescribe the kind of individualized regimens and interventions that might make our lives halfway livable.

Our best hope for substantive help, in terms of interrupting our anatomical decline, was also the most massive and scariest intervention available: incredibly specialized spinal revision surgery lasting some 10 to 40 hours, often requiring both anterior (front) and posterior (back) incisions, osteotomies (surgical fracture of the bone at stategic points), and major reconstruction of our "hunchback" deformities so that we stood straight and tall once more. Revision surgery was followed by long and grueling recovery periods with much therapy and rehab, during which we learned new ways of standing, sitting, moving, even putting on our socks and clipping our toenails, now that our newly remade spinal columns were rigidly fused as far down as S-1, the sacrum. The old hardware that had deformed us was replaced or augmented by shiny new surgical steel or titanium technologies affording segmental control of individual vertebral segments (vs. one long distraction device such as the Harrington).

Revision dramatically normalized us in that we could now pass as "regular people" to the outside world. In very many cases it did not substantially improve out pain; we continued to try everything from spinal stimulators to facet-joint injections to nerve ablations, often with limited success.

At the beginning of our long "revisionary" journeys, though -- and every year, we encounter many more people like ourselves, newly diagnosed with flatback syndrome and only just beginning their own treatment-odysseys-- we were relatively clueless. What was wrong with us? What could we do about it? Where could we even find one of those few, rare surgeons who might help us to start living again? We felt desperate and lost, and often very much alone.

Banding Together

When we ventured beyond our doctors, tried to research our condition in the medical databases, we found next to nothing useful at first -- even in the archives of the major national organizations dealing with scoliosis.

The aging surgeons who had originally "corrected" our scoliosis and had sent us away with their blessing were not all retired from active practice. Out of respect for these "elder statesmen," perhaps, their younger trainees were hesitant to publicize the truth which was gradually dawning on the profession: The Harrington rod had been a mistake -- a well-intentioned but profoundly misguided approach to the surgical correction of scoliosis. It had crippled untold numbers of us and largely wrecked our lives. Our iatrogenic deformity went by the deceptively banal name "flatback [or flat back, or flat-back] syndrome." We know now, through the Scoliosis Research Society, that as many as one million of us have had or will need revision surgery for flatback syndrome and related issues stemming from the nonsegmental hardware originally implanted in our backs.

In our initial confusion, the saving grace was the Internet. Going online for answers, for some kind of hope or help, a small group of us did manage to find one another. We started sharing our stories via email or instant messaging -- sometimes, subsequently, via phone or personal meetings. We pieced together some hard facts, with considerable impetus from a set of informative online articles by a private individual, Elizabeth Mina. Elizabeth was a brave and gifted investigative journalist, and her pioneering papers explaining flatback syndrome were an inestimable gift to an entire generation of us H. rod casualties. She herself had undergone revision surgery very early on. She endured a number of operations, some of them primitive and damaging, which left her with considerable pain and disability but did not diminish her desire to help others in similar straits. I owe her a great personal debt, since she knew most of the very few surgeons who were dealing with flatback at the time of my own diagnosis (1999) and had unearthed considerable behind-the-scenes information. She steered me away from one surgeon who might have done me far more harm than good, and I am forever in her debt -- as are countless other flatbackers who recount how Elizabeth helped them to redeem their beleaguered spines and raise their plummeting spirits.

The Most Drastic Step -- and the Mutual Support That Made It Possible

Eventually our small band of flatbackers -- about eight women at the time, mid-2000 -- persuaded me to start an online forum devoted to flatback syndrome. The Feisty Forum ( http://health.groups.yahoo.com/group/FeistyScolioFlatbackers/) has now grown to nearly 600 members. As we developed an increasingly rich store of informational resources and a strong group support system, many of us found our way to capable revision surgeons -- spinal deformity specialists with the training, experience, and expertise to correct our secondary sagittal-plane deformities adeptly and safely.

As mentioned earlier, a typical revision procedure may involve both anterior and posterior approaches, including osteotomy (surgical fracture of bone or cutting-up of a previous fusion) and extensive re-fusion using bone graft from the patient as well as cadaver graft. Revision surgery also entails the implantation of extensive new hardware, with or without complete removal of the original instrumentation.

Given the hazards of protracted general anesthesia and excessive blood loss, a number of revisions are done in two installments about one week apart, with each installment lasting nine or ten hours. Still, the patient may be vulnerable to post-anesthetic delirium or other ill effects. The estimated rate of minor and major complications for all flatback revision surgeries is 30 percent.

I myself have undergone six revision procedures, in addition to my two original spinal fusions for scoliosis. Thankfully, the revisions have normalized my outward appearance. I am currently fused from T3 to S-1 -- the chest area to the sacrum -- with an impressive collection of state-of-the-art hardware. Unfortunately my pain did not abate after the surgery, and I could not bring it under control with oral pain medications (which, in reasonable or therapeutic doses, exacerbated my preexisting sleep disorder -- narcolepsy -- so that I was chronically at risk of embarrassing and dangerous sleep attacks). Ultimately my doctors agreed that I was the "textbook candidate" for an ingenious medical device -- the Synchromed II pump -- which is implanted in the abdomen for round-the-clock intraspinal infusion of very small doses of narcotic. These doses are far more effective than larger oral or IV doses, since they go directly to the relevant area without first having to enter the systemic circulation. They also largely bypass the brain, thus minimizing adverse effects (in my case, excessive drowsiness and sleep attacks) on the central nervous system. I have had one of these pumps, with an attached catheter extending into my spinal canal, since 2005. Although I have needed additional surgeries to fix mechanical and other problems with the pump, it has been, overall, a major blessing in my life, reducing my daily pain from an average of 9-plus to an average of 4-5 on the old 10-point scale.

Coming Back to Life

My current existence is not what I once considered "normal" -- not by a long shot. Before the flatback totaled me, in the fall of 1997, I was an active, middle-aged, middle-class woman, newly embarked on a second career as a health law attorney (following some 20 years as a medical writer and editor for JAMA, the Hospital Research & Educational Trust, and the American Society of Clinical Pathologists, among others). Flatback syndrome stripped me of the ability to work in an office, travel on business, or generate a dependable income. Much of the time I have been confined to my La-Z-Boy. To complete most everyday at-home tasks, I must be standing up at a high table or counter; to take a break, I must lie down. I can not dependably sit on a normal chair for longer than an hour. I rarely socialize with "brick and mortar" friends outside my own living room, attend religious services, or go out to restaurants. I have seen only 3-4 "big-screen" movies in the past decade. Thanks to a small disability stipend and the financial contributions of my brother, my estranged husband, and my 25-year-old son, I manage to scrape by, albeit with little if any discretionary income.

In the earliest years of this disability, things were far worse. Along with my son, then in high school, I chronically teetered on the edge of abject poverty. I sold the family furniture at auction, hocked anything I owned with any resale value, saw my car nabbed by the repo man and my landlord waving an eviction notice. It is difficult even to reminisce about that period, when each day was an exercise in desperation -- when I was chronically terrified about providing for my child, while carrying my torso at a 90-degree angle to the ground, hanging on tight to my walker, and attracting pitying or horrified stares wherever I went.

Things are better now. But things are not yet where they should be. My life is not right. I need to change things. I need to change myself. This is the year I will.

I am sure of it. I have decided.

This us the year I rise up singing, publish my writing once more, make good money, make even more good friends.

This is the year I will wholly live once more -- the momentous year, the turning-point year.

This is the year I begin anew to become the person I am meant to be.

I anticipate a rough and exhilarating ride over some rugged highways -- over glare ice and potholes and roadblocks.

This year, with unshakable determination and unwavering commitment, I make the imperative journey back to me..

The Street-Corner "Prophecy"

I have known for some time that I must do this. About four years ago, an older gentleman in an elegantly wrapped turban, standing outside the Osco Drugstore on the colorful Chicago street known as Devon (with the accent on the second syllable -- don't ask!) -- gave me quite a compelling sales pitch for allowing him to read my palm. I finally decided, well, why not, and extended my hand. for his scrutiny. Soon he was telling me, rather excitedly, "In five years, you will no longer recognize the life you are living now!" He said that I would become a teacher or coach in some capacity, that I might travel and make speeches -- that I would experience new involvements and endeavors I could not even imagine as I stood there outside the Osco in 2003.

As I slipped him my modest donation and thanked him for his services, wishing him well on his upcoming return-trip to India, he interjected one last comment, with a note of stern caution: "But take care of your feet!" And to be sure I understood, he repeated it even more emphatically: "You must be sure to take care of your feet!!!!"

Several months ago, I finally took care of my feet. I let the podiatrist tackle my giant bunion and gross old hammertoe at last, performing mini-osteotomies and setting me straight. The process wasn't quite like any of my massive spinal surgeries, but it did hurt like the dickens; for a week, I wondered if I had make a dreadful mistake, if I would ever walk again. But the body heals, and so does the mind. The human organism is wonderfully resilient, with fantastic capacities for regeneration and healing. I am now very pleased with my feet, and even with much of the rest of me. I have what I need now. I am ready to travel.

I am ready to create and live that whole new life predicted so confidently by my turbaned friend.

Come with me, why don't you? This is going to be a great, grand year. I would love to share my saga with you as it proceeds, especially if you are, likewise, determined to build your own second incarnation from the dust and ashes of the old . . . if you are prepared to rise like the mythical phoenix out of your dying and into your being born.

Let's be bold and take risks. Let's be mindful and take breaths. Let's become prosperous and expansive and giving -- just think what we can do with the wherewithal to start whole foundations and coalitions. Consider what suffering we can alleviate, what injustice we can redress, how much we can do to mend this battered world.

Tell me your wild, vast dreams and farthest-out plans as I confide my own. Let's share our amazing, unfolding stories. Let's get heady. Let's go whole-hog.

We can fly. We can move mountains, even from a walker or a wheel chair. As the classical Indian dancer put it, inexplicably resuming her career after a horriblen accident and a leg amputation, "You don't need feet to dance."

We have everything we need, as Bob Dylan assured us long ago. ("She's got everything she needs, she's an artist, she don't look back/She can take the dark out of the nighttime . . . ")

It's beginning.

We're beginning.

It's our time.

We can soar.

We can shine.

Am I wrong?

Take a chance --

Come along . . . .

What To Do Next . . .

noreply@blogger.com (Elizabeth Rasche Gonzalez) — Thu, 28 Feb 2008 00:14:00 +0000

-->. . . after you get your socks on (see last blog-entry).
Get a pedicure.

I'm serious.

When you are wholly ready to remake your life, then each week -- each day -- you need to take a baby-step or two in the direction of your transformation . You need to move toward and into the life you are creating, laying claim to all that you desire and deserve: inner change . . . whole-body healing . . . a sustaining sense of purpose . . . a level of modest prosperity beyond just barely managing the rent or mortgage payment . . . perhaps the experience of childlike joy and adult-level success in connection with your sculpture or screenwriting . . . a new and enduring personal partnership or marriage . . . the ground-up construction of your little green dream house and studio near the mountains or ocean or both . . ..your own fair-trade import shop stocked with extraordinary textiles, basketry, and other indigenous objets d'art from artisans you work with in northern India and the Mayan cities of Guatemala . . . the 501(c)(3) nonprofit you will create to research and reveal the mystery of preventing scoliosis , , , ,

You can get there from here. But you have to start with you. The transformational process has to begin with that sense of genuine self-regard which comes from being centered within yourself: ready at any given moment to move your most important and pressing needs up pretty high on the old to-do list.

So, you did those final, trying contortions. Strenuously, out-of-breathedly, you got those socks on over that rough and ragged terrain. You willed yourself to ignore that one crazymaking little toenail that still felt half-snagged on the right-hand sock. You lay back, depleted and exhausted, assessing the respective aches in the relevant muscle groups. Faintly but clearly, you heard a distant, just-audible buzz or " b-r-r-r-r-ing!" from somewhere down the farther corridors of your cerebral cortex . . . .

A small-scale life-experience for sure; something you may want to write off as trivial -- but in reality, you have had another of those gentle wake-up calls you've been getting lately. The figurative phone most typically sounds softly, just once or twice.

Plenty of us have reason to ignore or postpone that subtle call to self-care. After all, many of us are caregivers for everyone else imaginable, from energetic toddlers to ailing grandparents. Most of us have trouble finding enough hours in the day, as they say. And a fair percentage of us are constrained by highly frugal budgets, supporting ourselves primarily via fixed and limited disability stipends. No matter. Your feet are important. Your comfort is important. Do the right thing. Make the arrangements. Get those tired, ailing toesies to a professional.

I confess I used to be somewhat profligate in this general area, back when I was a working professional with no clue what disabilities and disasters lay ahead, living in chronic unconsciousness of my increasing back pain not to mention my incipient deformity. Back in that land of Da Nile -- seeking something inchoate, I knew not what -- I blew a respectable fraction of my earnings on regular visits to my local suburban day-spa-type-joint for various types of body care I now do capably myself, such as regular hair coloring. That's not where I'm trying to steer you now. You don't need the endless aromatherapy foot soak or the New Age foot massage performed in time to mystical -pop-mantra-music. For a wonderful, more than satisfactory pedicure, try the local lower-than-high-end mall or the neighborhood storefront salon (making sure the premises are clean, of course, and the equipment thoroughly disinfected between customers).

Six times a year, I splurge on my own pedicures at Modern Nails, a mall-based salon managed and staffed by 8-10 hard-working Vietnamese immigrants who welcome walk-ins even half an hour before closing. At $22 per pedicure, this amounts to about about $3 a week. I waited a little longer than usual this time, which led to the whole wasteful, protracted, unnecessary hassle with my socks.

If you have a spine like mine, fused solid from T2 to S1 -- or if for any other reason you can not reach your toenails even with a clipper and have consequently let them go and are now struggling to put on your socks without hurting yourself -- it's definitely time to delegate.

This last time, I walked out of Modern Nails as if traversing a cloud of billowing silk. That was more than 24 hours ago, and my grateful feet are still thanking me. Buddhism and egolessness aside, my whole self is thanking me.

Take a tip from me.

Nurture your spirit. Nurture your whole organism. Nurture your exceptionally important feet.

Get that pedicure.

How It Is

noreply@blogger.com (Elizabeth Rasche Gonzalez) — Tue, 26 Feb 2008 05:25:00 +0000

It is not easy.

Here is a snapshot of my life:

My apartment is cold. I have been back and forth with the landlord, but it is still cold.

Yet I have been barefoot for the past 5-6 hours.

Why? Because I took a shower, got out some clean socks, and am still trying to put them on.

A midlife woman, relatively normal to all appearances, can not put on her socks? Why, pray tell?

Because I am fused nearly to my tailbone and have no flexibility in my spine. And I can not reach the little toenail on my right foot to trim a ragged nail. So I go through the contortions of trying to reach my right foot to put on my right sock, and every time I try (stretching parts of me that can not or should not be stretched -- EVER), the blasted sock gets snagged on the infernal toenail.

Our bodies hurt and our lives are hard. Still, we must bless our bodies and our lives.

We will get our socks on. And then our shoes. And carry our laundry to the basement. And wash and dry it all, including that one pair of funky longjohns, which will be clean and warm. And thank Someone or Something for the blessing of a clanking radiator (it just came on, at last) and a comfy, cherished quilt, and an email from a friend out west, and a phone call from a friend near Haifa -- for each small, perfect pleasure; for the humor, the inherent ridiculousness, of our plight with our socks -- for having socks . . . for this precious, difficult moment.

WHILE I WAS MAKING OTHER PLANS . . .

noreply@blogger.com (Elizabeth Rasche Gonzalez) — Mon, 11 Feb 2008 00:29:00 +0000

THE QUESTION: What HAPPENED to you, anyway???

THE SHORT ANSWER:

My original problem was idiopathic scoliosis -- a lateral curvature of the spine especially common among adolescent females, cause as yet unknown.

I had 13 or 14 thoracic vertebrae surgically fused -- one vertebra for each year of my age -- and lived in body casts for 18 months.

A fusion destroys the individual vertebrae; the fusion mass is like one long, rigid bone. The unfused vertebrae have to work harder to support the whole works. They tend to break down over time: The cushioning disks between the vertebrae wear out and arthritis sets in. By my late thirties I was in considerable pain from so-called "scoliotic deterioration." The experts said I needed more vertebrae fused, and they set to work destroying most of my lumbar region as well. This time they also implanted a popular piece of spinal hardware, the Harrington rod.

I told myself I was better and got on with my life. Then, In my late forties, I found myself turning hunchbacked overnight. Eventually I was carrying my torso at a 90-degree angle to the ground, rigidly fixed in that crippled, hunched-over posture. I had to use a walker to hold myself up when I moved around. I developed cervical arthritis and neck pain from craning my neck to see anything ahead of me as I walked. I could not lie flat in a bed and had to sleep in a recliner. My pain became unending and climbed to 8 or 9 on a 10-point scale. I was forced to give up on two careers -- my first as a medical writer, my second as a health law attorney. I struggled to support my son and myself on a disability stipend, a modicum of child support, and the kindness of family. My life verged on becoming unlivable.

I suppose I had considered myself a bit of a hot shot during the best 20 years or so. I had flown around the country on an expense account, covering medical symposia and science writers' seminars for publication. Then, at 33, I gave birth to my son Matthew, feeling wonder move through my organism and grace light my life. A few years later came the Harrington rod surgery, followed by some personal/existential reassessment and regrouping. Eventually I went to law school in my forties. After being admitted to the bar, I spent a few years as a consultant to a forensic psychiatry institute --writing grant proposals, publishing legal analyses and the occasional Op-Ed, designing and administering new research programs. It was not a bad life. I even remember some good times in my long but dysfunctional marriage. After I turned flatbacked and fiftyish, however, things began to feel pretty surreal. During the long waiting period for Social Security Disability benefits, I was forced to sell the family furniture at auction and accept provisions from food banks. Thanks to a helping hand from a charitable organization, Matt and I narrowly escaped eviction from our apartment. Throughout the struggle to keep us afloat, I was also contending with the daily demon of excruciating physical pain. As I became more and more bent, anatomically speaking, I attracted pitying or horrified stares wherever I went.

My spinal deterioration following Harrington rod surgery has turned out to be typical of individuals with so-called flatback syndrome (loss of lumbar lordosis, also termed fixed sagittal imbalance). The major cause of flatback syndrome is the Harrington rod . Lately spinal surgeons are also seeing some patients with flatback caused by Luque rods, which were introduced as an improvement over the Harrington instrumentation.

In 2000, I started the "Feisty Forum" -- http://health.groups.yahoo.com/group/FeistyScolioFlatbackers/ -- as a support group for those of us with flatback syndrome. We began with 8 members -- 8 frightened but determined women in search of practical information which we could use to help ourselves and others. At that time, digging up accurate facts meant adopting some of the skills and strategems of a private detective. Few researchers or physicians were able or willing to level with us. If the Scoliosis Research Society was discussing our condition at all, it was in closed sessions. My own Harrington rod surgeon, a younger partner in an internationally esteemed group, had finally broken the news to me that I had a condition called flatback syndrome, but he insisted erroneously that this was caused by "your disk disease." Thankfully the next few doctors I consulted told me the truth, that the actual culprit was the Harrington rod. (The disk disease was simply a byproduct of the previousl spinal fusion, which had left a few lumbar vertebrae with the task of supporting essentially my entire spine; over the years these vertebrae had inevitably worn down under the stress. In fact, one or two of them had distintegrated completely.)

Now, seven years later, our membership is heading up toward 600. At least one or two newly diagnosed flatbackers seem to find their way to us each week. Many of us have now had our flatback corrected or improved via surgical revision and reconstruction. We have archived personal "war stories," medical information, and diverse resource materials and have built up an invaluable if informal "short list" of qualified spinal revision surgeons in North America and several European Union countries.

We have learned that many surgeons specializing in scoliosis correction have tried a few flatback revision procedures or would like to do so -- but only a handful have substantive experience and expertise in this area. The earliest revision surgeons, working in relative obscurity at a few far-flung teaching hospitals, began removing Harrington rods and correcting the devastation around the same time my second scoliosis surgeon was installing my own Harrington rod.

Revision surgery is extremely intricate and complex. I was very blessed to find two successive revision specialists-- orthopedist Frank Rand, MD, in Boston and neurosurgeon Stephen Ondra, MD, in Chicago -- who knew what they were doing. Between 2001 and 2004, I underwent six discrete surgeries totaling about 40 hours. These operations did not markedly improve my pain -- if anything, patients who need multiple spinal surgeries tend to have more pain over time -- but I now look relatively normal and am (I hope) at less risk of further complications from my flatback deformity.

All revision surgery carries an estimated 30 percent risk of major and minor complications. Many of us have been through fixable or reversible complications -- in my own case, severe antibiotic allergies requiring prolonged steroid treatment, spontaneous spinal fractures necessitating emergency intervention to save my spinal cord, and two episodes of post-anesthetic delirium after being under general anesthesia for 18-20 hours within the space of a week or so. Our group is still dealing with a load of shock and dismay since one member went into revision surgery last fall and came out of it paraplegic. Following many weeks of rehab, this feisty woman is now back home with her husband and two school-age children, adapting to life in a wheel chair.

All told, flatback syndrome has disabled an estimated 1 million patients who underwent "instrumented" fusions for scoliosis between 1960 and 1990. Most of us are on disability and have had our lives radically disrupted in almost every way.

But most of us also continue to have dreams and aspirations -- new ones now, perhaps: plans and hopes that may bear little resemblance to those with which we began, or those we actualized or initiated before the Flatback Debacle blew everything sky-high . . . After that happened, we ended up just hanging on for a while, just hoping to get through one more day. We found ourselves raking through the ashes, of that other life, unearthing a fragment or two of all that we held dear, holding a silent memorial within our minds . . .then grieving; then arguing, pleading, shaking a fist at the universe or the Higher Power of our choice . . . then hanging our heads in defeat (we couldn't exactly hold them up normally, at least pre-revision) . . .

And finally, tentatively, bumbling our way onward; choosing to live after all.

Opening ourselves, if only a smidgen, to some whole new destiny we had yet to create or discover.

Beginning again . . . . Becoming.

I can be changed by what happens to me.
I refuse to be reduced by it.
Maya Angelou