Come with me back to my childhood. I need to muse on this, as there is something I learned over two years ago that has changed the entire landscape of my memories and I am still grappling with this. It's been mentioned obliquely here and there, but has long deserved a post of its own. Tonight I feel like writing it.
When I was small child, maybe of about five and a half, I was taken to an orthopedist by my parents. I evidently was not walking normally and falling some and they had concerns. We were devastated to learn I had a condition known as Legg-Calve Perthes...this was in the 1960's and at that time, the treatments for Perthes were leg braces that kept the body weight off the hip socket, traction, and/or bed rest, until the disease had run it's course. If treated in time, it would pass and normalize, if not, permanent damage, crippling affects and severe arthritis could occur. Supposedly it takes about 6 months to a year to heal, if treated properly.
I spent the next 6 months confined to a wheel chair, staying off the hip. 6 months is an eternity to a child, I might add. I also have to point out that I have a lot of gaps and blanks in my childhood memories that are probably due to medical trauma and depression because of these events. You might ask, can a child that age be depressed? Oh, yes. There are somethings that I will never forget associated with the years I spent trapped in the scenario. The first clear memory I have of these next few years, is from the very beginning - sitting in the back of the car, on the way home from the Doctor's office after we learned of the diagnosis. I sat and cried very quietly in distress. I don't know that as a five year old I truly understood what was happening, but I did understand that something bad was occurring, something that was big and scary and that was going to take over my life. I had been told I was not going to be allowed to walk for awhile, and that was more than clear enough for even a child as young as I was.
6 months later, we were back to check progress. No change, or evidently not enough to matter. The next step was an iron leg brace. The whole idea was for me to be able to "walk" after a fashion without putting any weight on the hip joint. The brace had a circular leather covered ring at the top around my leg at the hip...two iron bars down either side to the knee. At the knee there was a leather strap that went around my knee joint. The iron bars continued down to below and past my feet by a good 4 inches. My foot, in a special shoe (white leather) was tethered by a strap from the bottom of the shoe that buckled to a rectangular iron and rubber tipped bar about 3 x 4 inches in size. This bar was what I stood on, and my body weight rode the leather ring at the top instead of my hip joint itself. Since this stuck out that 4 inches past my foot, on the other foot I wore a built up 4 inch high shoe to match the height. The brace did not bend, period, which kept my leg straight at all times, walking, sitting or standing. At this point I was 6 years old.
So...I labored along on this contraption which was clumsy and strikingly vivid. I could go no where without the most uncomfortable kind of attention. Adults misunderstood00d what they saw; it was at the very end of the polio scare of that era, and most people thought I was a polio victim. My peers were unspeakable. I was lonely, cut off, viciously teased and ostracized. I was very much a tomboy, active and inquisitive, and now I could no longer do even a third of the kinds of activities I had once gloried in - running and climbing trees etc. Actually, I did climb trees, even after I was locked into the brace. But it took some doing! I was also turning into a speed reader...I devoured books as fast as I could get my hands on them, for they were my only connection to the world. I read my way up my grandmother's book collection and library, starting with what I could reach and expanding as I grew taller. (well...a little climbing helped too...) Jack London, Rudyard Kipling, Mark Twain, Shakespeare, Robert Frost and Thomas Wolf, and on and on....One of the good "side effects" of my illness was the reading speed and comprehension I developed early on - by the third grade I tested as reading on a college level! On a sad note - my grandmother died shortly after I was put in the leg brace. I found out later that she was so shaken by my diagnosis, that she believed the situation to be permanant and did not believe I would walk again. Not suprising - her generation saw polio destroy so many lives and cripple many - I assume that association is what contributed to her veiwpoint. But it makes me sad, all the same.
Then a routine x-ray check up appeared to show that I had it in BOTH legs! After an abortive attempt to put me in two leg braces at the same time - which did not work so well, to put it mildly - I then walked with a brace and crutches, holding the free leg up at all times, or sat in a wheelchair, when out of my metal contraption. They also prescribed traction at night in my room which meant every night, my parents put my legs into wrapped weighted pulleys that kept tension on my legs all night long. I spent the first part of the school year with one of my teachers coming to the house to tutor me, during a period when I was told to lie as flat as possible for a few months. Finally, in an effort to see some improvement, they put me in the hospital in traction for maybe 2 - 4 months. I turned seven years old in the hospital, that year. My parents finally put their foot down and said that I had to come home before Christmas. The Dr.s compromise with this was to put me in a body cast that stretched from my arm pits to my toes, with a bar across my ankles to hold my legs at the right angle. So home I went from the hospital, encased in plaster of Paris, and really excited that I got to ride in the ambulance, when they took me home, which was so cool! He even flipped on the lights and the sirens for me just a minute to give me a thrill!
Christmas morning my Dad and my cousin Tarzan (real nick name from his youth - 6'4" and muscular) helped wedge me, the cast and all into the back seat to go to my Aunts farm for Christmas morning breakfast. (it was also the day my cousin and his wife brought home their adopted daughter, which made for a very happy Christmas indeed.)
Now is a good time to speak of my parents in all this. These two incredible people saw me through this situation with resilience, kindness and gentleness. Their love and patience for me never faltered, ever. My mother cared for me with love through difficult situations, helping me maintain my dignity as a small person in difficult straits. She and my aunt designed clothes for me that worked around the difficulty of the brace, so that I could actually wear shorts and pants. Mom never once told me I could not attempt something because I was "crippled" or unable - and cheered me on when I climbed trees with the iron brace dragging behind me. I am quite sure that inside she was quaking with fear to see me up above her head, brace scraping and banging, other leg carefully held free, managing it all on upper body strength and sheer stubborn will power.
During the time I was in the body cast, my parents could have put me in a different room on the downstairs floor for convenience...however, every night my dad carefully balanced me and the inflexible stiff body cast and maneuvered me up a narrow flight of 15 steps to the second floor to put me in my own room. On the ceiling above my bed, he put some beautiful astronomy stencils of the constellations and the planets that glowed in the dark that he had found. I couldn't roll over in the body cast so I was stuck on my back for the duration. I looked up at night in my own room at the stars over head that my father had put there for me.
Finally, after 8 mortal, itchy weeks encased in sweaty plaster, I was hauled back to my Dr.s office to be cut out of the cast. They assured me that the process would not be painful - which turned out to be a flat out lie of monumental proportions. The implement they used to cut off the cast looked like a little hand held buzz saw. It was loud and noisy and left little nicks, cuts and burns up one side and down the other as they sawed through the plaster. I didn't cry, but I remember feeling stressed, anxious and frightened. Then they lifted off the top half of the cast and exposed my plaster dusted emaciated legs. Of course, I now know that the muscles in my legs had atrophied and stiffened up from months of immobilization in the traction and body cast, but they did not explain this to either me or my parents. They simply told Dad and Mom to take me on home. So, Dad stepped forward and put one arm under my knees and one arm under my shoulders and lifted me up. Everything bent for the first time in months and it was absolute agony. I was screaming - the only time in the years I spent like this that I did so. Horrified, my parents laid me as flat as they could in the backseat of the car to go home, and drove at a snails pace...every small bump and variation in the road felt like torture to me. When they got me home, they called my cousin Tarzan again..he came over and between him, my mom and my dad, they managed to lower me flat into a shallow tub of of warm water, without letting anything bend, so they could sluice the dried plaster off and soothe the pain.
Nobody tried to carry me upstairs that night...I spent the night on the bed in the downstairs room, with both parents with me bedded down in various chairs. I never went to sleep, for every time I moved involuntarily, the pain would jolt me awake. Dad and I watched the morning sun come up, and then watched the early Saturday morning cartoons together. By the end of the day, I had figured out how, very stiffly, carefully and slowly, to roll over on my own, and felt very triumphant over this accomplishment.
So, now at about age 7 and a half, nothing had changed after the traction, and the cast. I went back to the leg brace, crutches and the wheel chair, told that it still affected both hips and I must not walk on them, eventually things would get better, we'll see how things are on the next visit...in truth, my orthopedic Dr. was not being cavalier about this at all...he was tearing his hair out trying to figure out what was going on and why I had such an atypical case. He used to take my records with him to conferences and talk to other orthopedists in the field, looking for answers. We had been told six months to a year to recover, and it was now over two years, and I quite possibly was worse. My life became a steady merry go round of Dr's offices and x-rays, and I remained brace and wheel chair bound.
By about the summer of my 8th year I was in a silent internal emotional crisis. It had been over three years since I had set foot on the ground to walk. (and I never cheated, an unusual scenario for a child, but I had been told that if I wanted to walk again ever, I was not to try to walk or put weight on my legs. I took it seriously. I never once set foot on the floor.)
At the beach that summer, I wheeled my self out onto the porch of our rental beach house and sat in the warm darkness of the August night. I was only 3 months from turning 9 years old. It had been so long since I had actually stood on my own two feet or walked normally, that I had no memory of having ever done so, not really. I sat and listened to the roar of the ocean beyond the sand dunes, and wondered for the first time if I ever would walk again. I had an innocent child's faith in my world - one that my parents had never betrayed in their love for me. I believed in God. I believed in what people told me. They had told me I would get well in six months, originally. Oh, well...another six months, lets try this brace...hmnn - a little longer, lets try this, oh...well, now the other leg is affected, but we'll check it again in a few months...hospital, body cast, leg brace wheel chair - a never ending ride on a nightmare on a dark merry-go-round and the brass ring had faded away...
More than three years later, on that night, I finally concluded - and I was a child, with a child's logic, remember - that I was not ever going to walk again. That something had gone wrong that couldn't be fixed and this was to be my life from now on. I didn't cry very much, I just felt hollow and numb inside. I made a desicion to accept this, and to just do the best I could around it. And then I wheeled my chair inside and went off to bed - a little low cot that my parents set up at the beach house that I could get on and off of by myself from the chair. And I curled up on the cot in the dark, listening to my parents and my aunts out in the main room, and beyond that the blending tones of the waves and the great land breeze that blew at night off the coasts. And I went to sleep, somehow with a measure of peace. This is what it was. I would work around it.
Another year passed of x-rays and consultations and no change. Next summer came and went - a memorable one, as I stood on the high dunes in my brace and watched the eerie algae-choked waters of an extremely high "red tide" stain the beach at the base of the dune with blood red color and dying fish. September came, starting 3rd grade, October, November and I turned ten years old. The leg brace I now wore was twice the height of the first one they made for me, though the battered crutches remained the same - worn ring marks in the wood as they were adjusted higher and higher. (I still have those little crutches...) December and Christmas, then January and February....
...and then in March came the big snow storm - a gloriously excessive blizzard of three feet of snow in our southern climate. The afternoon that the grey mackerel clouds rolled in and the temperatures dropped, my mother and I were at my Orthopedist's office for yet another check up. I sat on the high examining table, with my brace and shoe off, swinging my bare feet after x-rays. The door opened and my Dr. came in and looked at mother and me with a smile on his face. He spoke in jargon about targeted goals, and optimum out-comes, and finally said, I think we have gone as far as this will take us in improvements...we're done. A few moments of asking for explanations of the explanation, he said simply - "You can walk. We're turning you loose. No more leg braces or anything."
I sat there on the table, shocked. Walk? What was that? I was confused and actually a little frightened and simply could not bring myself to climb down. I didn't know what "walk" meant any more in anyway that was meaningful. After encouragement from my mother and dr for some minutes and I was still imobilized on the table, he very gently lifted me down and simply put me on my feet. I froze like a frightened creature caught out in the open, exposed and frantic. Slowly, they got me to take one step...then another...then another. I walked to my dr and threw my arms around him and he and I cried together. After all this time I remember still the traitor lines of moisture on his face, and the joy in his eyes as he was finally able to let me go free! The happiness and thanksgiving in my mothers face was like the summer sun breaking though in midwinter!
Of course, now my mother and I were seriously snowed in, with the car trapped in a snow bank that had not been there several hours ago. Phone calls brought rescue later that evening, as my dad plowed his way to us in a heavier vehicle with chains on the tires. We had not told him the good news, and when he stepped through the door, I was standing with my crutches under my arms, for just one moment, and then mom pulled them away and I RAN to my father's waiting arms. Stunned and laughing like a maniac, he scooped me up and carried me out into the snow into the most glorious snowball fight of all time!
It was done and over at last...from age 5 to age 10, over five years of my childhood gone; in fact, I never had a childhood. But it was done and I was walking. It did not become easy over night. I walked clumsily, and still was the butt of cruel teasing by classmates. I had trouble with social interaction - I did much better with adults, than with kids my own age - my peers seemed like an alien species to me. I had few friends (though the one's I did have were wonderful!) and I was lonely alot.
I grew into an adult - one with a passion for things like mountain climbing and camping, pushing into the freedoms I never had when I was small. I was an energetic factory worker, and mural painter, and was physically quick and strong and capapble. And never a day has ever gone by with out me at some point in my day, looking down at my legs and giving silent thanks for the miracle of walking....
But slowly - oh so slowly, as my 20's passed into my 30's, I began experiencing pain in my hips. An assessment by a different dr more than 20 years after the fact showed that osteoarthritis had set in and would eventually become crippling. By the time I was in my forties, the right hip had become so debilitating and painful that I had trouble walking, even with a cane. My ability to paint murals had ground to a halt. However my beloved Dreamweaver actually had a job that offered partners benefits at this time and we made the decision to go ahead and get the right hip replaced.
And here we arrive at the point of this whole, long blog post. At the age of 45 I went to my GP to get an MRI of my hips, and a referal to an orthepedic surgeon. I had told her my entire back story, and when she came in to give me the referal, she had a strained wary look on her face. Yes, she would refer me to a surgeon, and yes my arthritis was as bad as I thought it was, I was definitely a candidate for a hip replacement.
...the MRI showed that I had never had Legg Calve Perthes Syndrome at all. Instead, I had been born with the infant shallow socket birth defect, that was completely correctable, without surgery if caught in time in infancy...
In other words, the five years in my childhood were based on a misdignosis and should have never occured at all. Further more I was standing there with severe arthritis pain and disability, that had I been correctly diagnosed as an infant, would not have developed as I grew older. I got the hip replacement and the pain is gone from my right hip, however, I will eventually have to do the left hip as well...
Some research on line and my own knowledge of my own x-rays confirmed what she said. When I looked up pictures of Legg Perthes, and Shallow Socket x-rays and compared them, it was evident even to my layman's eyes that I had indeed been born with the Shallow Scocket birth defect. Of course there was over 30 years of medical advancements between the early x-rays and todays MRI's, but still...
Some research shows the possibility that the diagnostic tests and treatments for the shallow hip socket syndrome were developed in the later 70's, long after the fact for me, born in '61 as I was. So they may not have had the right information in front of them to help me or even know what the problem was when I was born. And there is the fact that being born at 6 months, I was tiny, less then five pounds and and had other difficulties as well...I was born with a inner cleft pallette that required surgery when I was 18 months old (and I really have no memory of that!!!). And if they did not know what to look for or even that shallow hip sockett existed, then of course any consultation or search would not have turned up information that would have changed the direction of the diagnosis. It was also probably easy to over look potential problems elsewhere in the scramble to deal with the cleft pallette. If the diagnostic and medical knowledge of infant shallow socket did not exist prior to the 70's I can see how my Orthopedic Dr. diagnosed it as best he could with the knowledge he had to hand.
I admit that when I found out that because of timing and misdiagnosis, I basically lost my childhood, it was a shattering thing. Everybody always points out, would you be you, who and what you are today, if something like that had not happened, or never occured. That is very true - there is NO question that I would be a total different person today, and what I would have been if my life had gone a different direction, I don't know. There is no way to know.
What I do know is that the loss is real. The pain and grief are real. And the anger! What my parents went through was real!!! And that even if I could go back and change it - and chose not to, because I would not want to be other than what I am, it makes no difference to the horrifying realization that what happened to a lonely frightened child happened needlessly.
I have not told my dad. My mother passed away in the late 70's, and I did tell my step mother. She and I both agree, that telling my dad at this point would be pointless and cruel. He still becomes angry today over the painful episodes associated with taking me out of the body cast. I cannot imagine his fury and pain if he realized that it was truly all for nothing, and unnessesary, if he would even believe it. Even discussing it, if he rejected this in denial, the stress would be cruel in the extreme. So, I am not telling my dad.
I am here, and I survived. Those five years and a little more gave me life skills to survive and insights that have served me well. They have shaped my character, and given me a deeper understanding of many things.
So let us remember the child of yesteryear...
and honor her survival and her strength....
and her pain and sorrow.
I am the adult that grew from that child...
and I am that child still.