Patient Stories

It all started in 1962

It’s hard to be an 11-year-old—especially an 11-year-old girl with scoliosis. Extra hard when your parents are movie-star-handsome, and you just know you’ll be a cheerleader, a model or maybe even Miss America. Hard, too, when you live in a beach community, and all you dream about is how you’ll look this summer in a two-piece.

So began my summer, 61 years ago, when a routine nightly ritual changed my life forever. Each night, I’d say my prayers with my mother, who often rested her head on my chest. Somewhere in there, maybe at “Yea, though I walk through the valley of the shadow of death…” or maybe at “I will fear no evil,” my mother noticed my heart was raging—too fast, too hard. She didn’t say a word, but days later I was at my family doctor. All I remember is a sterile room with a silver-blue haze, like a movie theater. I remember a machine that projected a life-size image of me—my spine, BAM! —there it was, a magic show—me live, pumping, pulsing—all lit up. If he said “scoliosis,” I don’t remember it, but I do remember the word “fluoroscope” and that eerie, magic machine! Sometime later, I saw a “downtown” doctor, which meant a serious doctor. For some reason, I remember his name but nothing else. At some point, I learned he was an orthopedist, which meant absolutely nothing to me.

Later that summer, my mother casually announced:
“We’re going on a trip to Houston—Texas.”
Houston was 1000 miles from my coastal Florida town, but at the time, all I knew was that it was far away, and my family did not take long vacations.
“Why?”
“We’re going to see a famous doctor in Houston. There’s something wrong with your back.”
I had nothing wrong with my back—it looked perfect to me! My internal response to her news was a 1960’s version of WTF! I was annoyed and in disbelief.

“Your spine is twisted inside, and if it doesn’t get fixed, your ribs will be down on your hip by the time you’re grown.” I emphasize that phrase because it’s something an 11-year-old beauty-queen-wannabe never forgets. I was on my way to big things and had no time for this! What remains of my scoliosis journey is a patchwork—jigsawed together from pieces told by my parents until finally, a story emerged. It’s all true, punctuated by snapshots of my own intense memories.

So off we went to Houston, me contorting into a pretzel as I wedged myself into the back “seat” of my father’s Bermuda Blue Karmann Ghia, a two-door convertible. (Example Photo Below) The back seat, leather-covered plywood, had no padding and was meant to hold only luggage. Luckily, I was thin and an only child—there wasn’t an extra inch to spare! The 1000-mile trip sped by one Holiday Inn after another, with me crooning teenage love songs, most of which ended in tragedy (which never occurred to me; I just loved their melodies!)

Photograph Of A Bermuda Blue Karmann Ghia

“Stop singing those songs!” my mother barked one day as I belted out my best Teen Angel. For one brief moment in Gulfport, six hours from Houston, my beautiful mother was gripped by fear she could no longer contain. I had seen no detours or danger ahead, but BAM!—the air was changed, and so was I — scoliosis affects everyone in a family.

I’m sure somewhere along I-10 heading west I must have heard the “famous doctor’s” name. But it wasn’t until I walked into the office of Dr. Paul Randall Harrington in early September 1962, that I realized the magnitude of what was happening to me. I was about to meet the man who invented the world’s most widely used protocol for treating spinal deformities and who was arguably the father of the modern treatment of scoliosis.

I remember a great deal about that visit. His waiting room was teeming with squirming kids—all ages and colors—children and their families who had clearly traveled from all over the world to see this man. As I grew older, I marveled at how my parents could have possibly known about Dr. Harrington, who practiced so far from our home—a man who never stopped perfecting his procedures and who initially constructed his instruments in his garage. His technique, which became the gold standard for scoliosis treatment for almost three decades, was only made widely available in 1960, and for the first 18 months of its use, was restricted to surgeons whom he had personally trained. How did I wind up here?

Years later, I learned that by a stroke of luck, the orthopedist I had seen at home had just read an article by Dr. Harrington entitled, “The Treatment of Scoliosis” in the June 1962 Journal of Bone and Joint Surgery. The downtown doctor, Sam Raybin, told my mom, “I just read about the best man in the U.S. Take her to Houston, go!” Three months later, Dr. Harrington performed my surgery. I never knew if Dr. Raybin had also read a copy of the November 16, 1960, Time magazine article that featured Dr. Harrington in a piece entitled, “Spines of Steel”, an article I learned about years later.

Entering Dr. Harrington’s private office was a stark contrast to his electric, buzzing waiting room. It was a calming space—large, light-filled with warm wood paneling. One wall was lined with expansive windows that looked out to a beaming Houston skyline. He sat behind a wide desk, but in my mind, nothing separated us. My parents were with me, but I only remember me and this tall, kind-faced man. He wore a suit and bow tie—and his smile and just being in his presence felt like a big hug.

I had rehearsed what I wanted to say, so I began with a determination far beyond my years:
“I just want one thing. Promise me you won’t give me a shot.”
He smiled in a way that made me feel silly and not taken seriously. I wasn’t having that!
“Promise me.”
He may have touched my arm or moved closer in an act of kindness.
“Promise!”
He paused just a beat, looked at me and in a kind, soft voice said:
“Believe me honey, when I’m finished you’ll be begging for a shot.”
“You don’t know me. I HATE SHOTS—PROMISE!”
He paused again, as if mulling something over.
“Okay—I promise.”
And so, my first visit with Dr. Paul R. Harrington ended.

Over the years, I’ve often thought about that visit and his verb choice: begging. I’m sure he didn’t mean to scare me, maybe just to give me a tiny taste of the days to come. After we left the office, I recall asking my father to explain why Dr. Harrington had said what he did. Papa’s answer smoothed it over—yet I still remember it today.

I remember nothing about the surgery or even getting to the hospital. I have one foggy-mist of a memory—being on a gurney, being pushed into an elevator and a male voice asking me to count backwards from 100. I don’t remember 98, but I do remember the voice—kind, confident—and that I was not afraid.

Forty-five years later, after connecting with the Paul R. Harrington Archives at the University of Kansas Medical Center, I was lucky enough to locate Dr. Harrington’s surgical notes from September 12, 1962, when for seven minutes, starting at 8:43 a.m., he cut open my back, exposed my spine, used his bare hands to force my spine straight, inserted one of his straw-sized rods from T-5 to L-1, and anchored the other side with a stainless ratchet of his own design. He inserted bone, not my own, into my vertebra so that the bones would fuse, and the correction would hold. He did all this with raw power and a master’s finesse.

Dickie’s Pre and Post-Operative X-Ray Photos.

Seventy-five minutes, 36 sponges and 500 cubic centimeters of blood later, at 9:50 a.m., “closure” was noted on the form. I must have gotten that shot and many others because my next memory was twelve days later when Dr. Harrington wrapped my torso in a plaster-of-Paris cast, cutting out a large heart shape for my tummy and chest to move when I breathed. I remember none of that except the ceremonious heart-cutting moment—he may have said he was giving me a heart, I’m not sure, but I fondly remember he made me laugh. And I remember looking down and knowing for sure my breasts would never grow inside that hard shell!

Back home, while my friends started seventh grade, I lay in The Methodist Hospital in Houston, unable to leave my bed or sit up. I remember no pain, no fear and days mostly filled with letters from home and loving nurses who signed my autograph book, the front page of which was signed: To my Frisky Blonde Floridian, Paul R. Harrington, M.D. There were gifts and cards, and reassurance from my boyfriend, Leo, that he awaited my return.

There were other days—the day I was flipped onto my stomach in a “log roll” maneuver so they could remove my sutures. They had moved my bed by the window—what a gift. I could feel the sun on my body and sense the wide, expansive outdoors. When they turned me over, exposing my back, my mother rushed out of the room unable to look. I was stunned at the idea that my back was something bad to see. I remember the pulling pain as they removed layers of bandages and the pinch (not bad) as they pulled out the one long wire that was holding me together. I remember the doctor’s genuine pleasure at how “beautifully” my scar was healing—he used the word “beautiful” more than once.

And I remember the worst day, when without warning, I began to vomit green slime that shot across my room, splatting on the far wall with explosive force. I remember screaming, “get out!” as my parents entered my room. I wanted to protect them—I didn’t want them to be afraid. Something had gone wrong with my gut, and for days they pumped my stomach as I watched olive sludge rise through a clear tube that hung over the rail of my bed. Unable to eat, I cried as they put ice chips on my parched lips as the TV blared commercials for “ice-cold, refreshing Sprite,” a drink I hate to this day. And I remember screaming with joy when the fluid in the tube ran clear—the green gook, gone. I was home free, just as my father said I would be! He had been a tank commander in World War II, and he knew real war. One day when I was really sick, he reported with absolute confidence, “Dr. Harrington says we’ve won the war; but we’re losing this battle.” Papa knew many things, and I believed him.

Almost three weeks after my surgery, my mother and I flew home. My father had driven home a few days before. It was the first time I had gotten up. I must have been sedated, but three things I remember clearly. In Atlanta when we changed planes, I had to pee. I couldn’t sit on the toilet and couldn’t walk. An angelic Eastern Air Lines “stewardess” beautifully maneuvered a series of Dixie cups, choreographing the event, never making me or my mom feel self-conscious or embarrassed. It was a lesson in grace and kindness from a total stranger that I’ve never forgotten. Her actions had a life-long impact on me and how I treated customers during my long career. If I close my eyes, I can still “see” that woman and the grateful look on my mother’s face as all this played out.

I remember our plane landing late and being the last to exit; my mother’s gasp when she saw my father’s handsome face, ashen-green with worry as he boarded the plane; I remember being strapped down and tilted almost upright as they juggled me and my gurney down those narrow, metal stairs. And finally, I remember being driven home in an ambulance that belonged to our next-door neighbors who owned a funeral home—me, riding in that van where I knew dead people had been.

Back home, I took my first steps on November 26, 56 days after my surgery and a week after my 12th birthday. I wasn’t prepared for the pain as my twiggy legs wobbled, trying to support my tiny frame. It never occurred to me that my first steps would hurt so much or that I’d have to learn to walk again. I could only stand with the support of my parents, and walking felt like shards of glass were piercing my feet.

Dr. Harrington’s Hand-written Note For Dickie

Before I left Houston, Dr. Harrington hand-wrote my rehab schedule. I still have it today. The first week, I was only allowed to walk five minutes, three times a day. My “up time” doubled every five days, and after a month, I was walking a half-mile a day. I could only sit for meals and to use the bathroom. The rest of the time, I laid flat in bed, watching TV or talking on the phone—my favorite thing to do. My world had narrowed and anything social delighted me. I elevated telephone talk to a new art, trying clever and funny ways to keep my friends entertained and engaged so I’d be connected and not alone. I loved the phone so much that years later I earned extra money for high school and college working part-time for Sears catalog sales. I spent my days talking total strangers into buying all sorts of things—tool sheds, washing machines and their “Armored-Crotch” underwear. I was consistently their top salesgirl. (There were no men on that job.) On the telephone, I honed my social skills and learned how to talk to strangers—an unexpected gift from my scoliosis journey.

Photograph Of Dickie, Her Radio, and Her High School Newspaper Team.

Sometime in November, I began “attending” seventh grade via a two-way radio system my parents secured from Southern Bell. The system was the first of its kind in our hometown, so “high-tech” that the local and high school newspapers featured my story. Each morning, one of my classmates would “plug me in” and through the toaster-oven-sized radio that sat by my bed, I was in class with all my friends. During the day, I progressed through math, English and geography, listening and responding in my 1960’s version of Zoom that kept me connected and learning. But this setup was also another way I was “other”—something I was dying to avoid. At my high school reunions, my classmates still say, “Remember when you went to school in that box?” I assure them—I will never forget.

On New Year’s Day 1963, 105 days after my surgery, my doctor took a buzz saw and cut away my cast, the blade whirling too close to my chest. It was somewhere between a horror movie and a magician’s trick. I was sure they were going to cut me in two but also anxious to see what was under that hard, dirty shell. When they cracked it open, I was flat, fish-belly-white and wrinkled. And sadly, I saw no signs of growing breasts.

In January, I got out of the radio box and went back to school. For the first year post-surgery, I was not allowed to take gym, so I worked in the dean’s office instead. It was a “job” I came to love. Our dean of girls was strong, and she liked me. I soon learned how to not only emulate (forge) her signature, but also watched to model her professional style. It was the 1960’s, a decade of change for women. I didn’t know it then, but I now see that the young child who went to Houston had come home changed—stronger and no longer a little girl. I started to want something different, and besides, the idea of gym and showing my body to others was simply out of the question. I supposed the Miss America runway might have felt the same way. I was self-conscious and had disassociated from my body. It would have helped me to talk about these feelings in those early years, but there was no Setting Scoliosis Straight, and no one saw that I needed to talk. After that first year working in the office, I begged my parents to let me continue working there, and they agreed—the die was cast toward my eventual business career.

For five years after my surgery, I was supposed to visit Dr. Harrington once a year. The first three years, we went in person—the last two, we sent x-rays. I remember absolutely nothing about those three trips. It was that initial trip that was the defining moment in my life. I had gone to Mecca as a child and come home a young woman with a loss of innocence, an altered sense of self and a spine of steel that has carried me well to this day. My healing has come in waves, layers peeling away with time, love and support. I can’t imagine any other life than the one I’ve had.

After my surgery, almost every doctor I ever visited, no matter the reason, would ooh and ahh at my back. Sometimes they’d call in a colleague, whirl me around and point:
“Harrington Rods! Yes, Dr. Harrington himself did this!”
They’d marvel at how straight I was and admire my “beautiful” scar. Out in the “real world,” in yoga or exercise class, I was often asked if I had taken ballet or if I was a dancer. Sometimes, total strangers would approach me and praise my “perfect posture.”

For years, my reaction never changed—what was wrong with these people!! I was stunned at their ignorance! Didn’t they see my hiked hip or my lack of symmetry? That “beautiful” scar and super straight spine were the reason I always tried to face you, to smile and lock eyes with everyone I met. They taught me to be charming and funny and to be an overachiever—anything to keep you focused up here, not looking at my back. My healing deepened when I finally realized that most people don’t see with my eyes. I came to understand that my otherness was just like everyone else’s—only different. I started to accept that there was no perfection, no matter how hard one tries. Scoliosis alters our body and our psyche, and it takes time for all that to heal.

When I was in my forties, a friend suggested I take Pilates. I was long and lean and had done yoga for years—she assured me I’d love it. But each time she mentioned it, my heart raced, and my breathing got shallow. It took me weeks to get up the courage to at least visit a Pilates studio. When I entered the room, I found myself inexplicably on the verge of tears, and my heart pounding. It wasn’t until much later that I found my answer. In a brochure about Dr. Harrington, I found a photograph of him in 1962, the year of my surgery. He was applying a cast to a young girl on a casting frame and sling. The device looked exactly like a Pilates Cadillac trapeze table, with its metal frame, bars and sling. My body remembered what my mind had repressed. The good news is, I finally got on that table and still practice Pilates today.

Photograph capturing Dr. Harrington during the installation of a cast on a patient in 1962. Photo credit: Paul R. Harrington Archives, University of Kansas Medical Center, Kansas City, Kansas

In writing my story, I’ve shared so much about those early days, about Dr. Harrington and how it was, “back in the day.” For me, it’s important to remember how far we’ve come. I’m struck as I write and take in my whole story, how brave, selfless and caring my parents were. I never said thank you—this is for them. And finally, in this piece, I have shared a lot of personal thoughts and feelings, because for me, that’s where my true healing has come.

The rest of my story is a good one: College, studying things I adored (boys and writing), a professional career which I loved and where I thrived for 45 years (in a man’s world), a marriage of 43 years to a man who still tells me I’m beautiful (and by the grace of God, believes it), and retirement, where I’m busier than ever, helping people make connections that enrich their lives and mine. At 73, I am as active and happy as I was as a child. I paint, write poetry and still get asked if I was a ballerina! And now, thanks to Setting Scoliosis Straight, I share my story with you.