Looking Back

-->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

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

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

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 . . .

-->. . . 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

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 . . .

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