50's & 60's and Dr. Paul Harrington

In 1953, a revolutionary orthopedic surgeon by the name of Dr. Paul Harrington from Houston, Texas, introduced a new spinal hardware system that would refine scoliosis treatment like never before. This hardware system involved stainless steel rods, named "Harrington Rods". His original idea was wrapped around this surgical system, but at the beginning his idea was to use it without fusion. In due time, Dr. Harrington realized that correction was dramatically improved when used in conjunction with spinal fusion and he began to incorporate both in his surgeries. Harrington Rods were intended to provide a means to reduce the curvature and to provide more stability to a spinal fusion. Before the Harrington Rod was invented, scoliosis patients had their spines fused without any instrumentation to support it; such fusions required many months in plaster casts, and large curvatures could progress despite fusion.

Word grew of Dr. Paul Harrington and the Harrington Rod system and suddenly, orthopedic surgeons around the world were acheiving greater than 50% corrections compared to what they had become accustomed to!

As I stated in an earlier post, scoliosis is sometimes oversimplified by referring to it as "curvature of the spine". When in fact, scoliosis is really a 3-D deformity, with rotation in addition to a curvature . Most patients are referred for a consultation based solely on a perceived deformity by a family member. The deformity is almost always an asymmetry of the shoulders, waist, hips or rib cage. Up until 30-35 years ago, it was most likely a family physician that noted the deformity for referral to an orthopedic surgeon, but today it is generally a school nurse teacher, due to the fact that scoliosis screenings (typically the Adam bending test that I referred to in earlier posts) are routinely done in school. The main treatment options for idiopathic scoliosis have been for quite some time and are still summarized as "the 3 O's": (1) observation, (2) orthotic (Bracing), and (3) operative intervention. When to choose each of these treatments is a complicated matter. The risk of curve progression varies from patient to patient and depending on which form of scoliosis they have. For my type, idiopathic adolescent scoliosis, treatment depended on curve degree, or the Cob-angle.

So you may ask, "Exactly what is a Harrington Rod?” Well, a Harrington Rod is part of a device that "was a stainless steel distraction rod fitted with hooks at both ends and a ratchet and was implanted through an extensive posterior spinal approach, the hooks being secured onto the vertebral laminae. It was used at the beginning without performing a spinal fusion but early results proved fusion as part of the procedure was mandatory, as movement of the unfused spine would cause the metal to fatigue and eventually break. The procedure required the use of a postoperative plaster cast or bracing until vertebral fusion had occurred."

This was "THE" greatest technology at the time of my diagnosis and it was deemed to be "the" cure! I do recall Dr. Hardy raving about its wonders and it was at my very first consultation that he said that afterwards, "I would be as good as new". Perfect. Set for life. Cured! So here we were and the cure was in front of us. And we were about to try it out, for there were no other options. Especially for a 12 year old girl with three curves.

So, in conclusion, the plan for me was that Dr. Hardy would perform a spinal fusion from T4 to L5 with the implementation of TWO Harrington Rods implanted in TWO different surgeries, using bone from my iliac crests (*see picture in sideline) for grafting (called AUTOGRAFT, as it is using my own bone and tissue), and the surgeries would occur TWO weeks apart. After the second surgery, I would be re-casted, so as to limit motion of the spine, therefore enhancing the healing process and minimizing any potential discomfort. Then I would return every 3 months for a new cast, for the time period of one full year and BOOM - I would be CURED!! Good as new, remember? So, here we go.............................

Some Scoliosis Treatments

As I was bracing for surgery, I wasn't nervous at all. I had absolutely no idea that I should be! I was just comfortable being back in the surrounding that didn't make me feel "different" from other kids and getting to know some of the "new" kids and reacquainting with myself with my old friends. I saw Dr. Hardy and Dr. Bradbury every day and they were truly a lot of fun! They would tease and joke around with the kids, even if they weren't their patients. I remember one time Dr. Bradbury leading a bunch of kids on a hide-and-seek game until the nurse's became really mad and put a stop to it!!

Looking back, if I had known then, what I know now - I would have been nervous. Let me explain what my parents knew at the time, and that I didn't. This will be something like a little history lesson in scoliosis and some of you may be very bored with this part. Understandably so. However, when I begin to write posts on the present day, THIS is the information that will actually help you understand the position I am in today!

Scoliosis is actually an ancient disease with evidence of it's findings as far back as 4000 years ago! As far back as the 16th century, spinal curves were first treated with braces. Then surgery was introduced. By the 50's and 60's, the non-surgical treatment of choice was the infamous, Milwaukee brace. This was a full-torso device designed by two doctors from..........Milwaukee!! It was semi-custom and origionally designed for post-operative care. Braces are still the "gold standard" when surgery is not required and without doubt, the Milwaukee Brace played a very important role by laying the groundwork for the development of the more sophisticated braces used today. The brace was and still is, intended to minimize the progression to an acceptable level, not to correct the curvature. Corrective measures are only gained through surgery.

The first surgery written about was performed in 1911. By 1940 though, surgery was considered too high a risk and primarily used on the patients whose scoliosis was deemed life threatening only. This is when the need for bracing soared. These early surgeries caused such significant pressure on the chest and rib cage (compromising young patients respiratory systems) that surgeons were suggesting that the surgery came at too high a price. Those patients who did have surgery would then need to stay on bed rest for up to a year after as well! Naturally, seeing that patients being treated for idiopathic scoliosis were in the teenage years, this also impacted their emotional well-being. Surgeons started to feel that bracing was actually the better way to go instead of surgery. The next step was to brace after surgery instead of casting, like was originally done as far back as the mid-1800's. This idea was felt to maximize the correction and the patient was only on bed rest for 6 months! It was during this period (late 1940's) that the Milwaukee Brace was starting to be used for non-surgical treatment as well as after surgery, with great results.

The early known problem with the Milwaukee brace was the chin pad. It completely messed up teen's teeth and jaw development. Corrections were made in the early 70's and the issue was resolved. Interestingly, much care was truly put into the molding of the Milwaukee brace by the doctors who developed it. It is said that they "did not only develop a brace, they also developed a system of management, or in modern terms, a "patient care program." A brace by itself is useless unless it is applied for the right indications, is worn the proper number of hours each day, is removed at the proper time, and is accompanied by the necessary physiologic and psychologic support systems." Sometimes the brace was worn 24/7, other times the brace could be worn outside of school - or part-time bracing - to spare the children residual emotional harm from being viewed as "different" than their peers. A different form of the brace included a "halo". I have included a picture of a Milwaukee Brace, with and without halo, in the sideline for you to see. Please note that I never wore a Milwaukee Brace due to the fact that I was, without doubt, a surgical candidate.

Back at the hospital....

 The next two and a half months passed by uneventfully. I was growing accustomed to my cast and yet I grew to hate it at the same time. I had to buy clothes one or two sizes larger to fit around it and everything was different. Everything. From the way I walked to the way I had to sleep. It took longer to do everything and I just wanted to take a shower.

February 6, 1974 - I arrived at Newington Children's Hospital in Newington, CT. We arrived a little early, so my mother and I decided to peruse the gift shop while we waited for my father to register us.

It was a great gift shop and anyone who knows me well, knows that I LOVE hospital gift shops!! They have the greatest gifts! If you've never frequented them before, do so - you'll be glad you did! Naturally, I ALWAYS looked at the HUGE stuffed dog in the lobby, but I knew it would never be mine! So we were looking around and I noticed some Christmas ornaments on the sale table. Laying there was an adorable little cloth doll ornament. She had orange-red hair with a yellow dress and red and white stockings. Her hair was made of yarn, was parted in the middle and in pony tails. I just thought she was cute and told my mother. She agreed it was cute; then we left to find my father.

We took the elevator upstairs; it all looked familiar this time. As soon as I saw the nurses’ station, there was Shirley. She jumped right up and came over to hug me. I immediately felt as if I was home.

Shirley showed me to my room and I had a roommate this time. She was in the bed closest to the door and I was in the inside, near the window. Next, I was hooked up to the familiar traction again. This time, Shirley brought soft, billowy cotton pads along with the Vaseline. She was an attentive, compassionate nurse and I have often thought of her over the years. She was one of the nurses who deserved 3x the money she made. I got settled in and had lunch. My mother took out her knitting and my father and I watched some TV. The plan this time was that my mother would be staying at the Serruta's house for the full time I was in the hospital and either Teresa or Jimmy or one of their children would take my mother to the hospital each day and pick her up in the evening. This is what I meant when I said they were kind and gracious people. Usually it was Teresa who would bring my mother to the hospital each morning and she would often show with some home-baked breakfast treat, or lunch food for me. Every time she would ask, "What can I bring you tomorrow, Valerie?", my mother would say, "You DON'T have to do this Teresa, they DO feed her!". Teresa would say, "Why eat hospital food when I can make it for her??” She was so sweet. Then some member of that family would come pick my mother up each evening around 7 and bring her back the next morning around 9 or 10. Every single day, except for the weekends. For 7 long weeks. No doubt, they went to heaven - God rest their souls.

I honestly don't remember if my father went back home that night or not. Seeing that it was in the middle of the week, I would guess so and then came back for the first surgery the following week? I mean, the man did have to work! Poor guy, talk about stress! I remember on one of the next days, I was brought downstairs to respiration or whatever it was called. It lasted for an eternity and I kept "failing" a component to the test. The lady kept asking me if I smoked and I said no. Not once, not twice, but this went on and on and I was losing my patience. Then she told me that I could trust her and she wouldn't tell my parents, but that they really needed to know the truth for the surgery. I repeated, "I do NOT smoke. I have NEVER even tried a cigarette!". She was exasperated with me, and obviously didn't believe me. Eventually she said, "Fine, but I think you're lying!". Back to my room I went. This time, I did tell my mother. Well, as I've explained earlier, Rosie could be a tad feisty and that's putting it mildly! She stormed out to the nurses’ desk and simply said, "Can you please notify Dr. Hardy that I would like to speak with him if he is in the hospital?” Oh God, here we go!! I suddenly wished I had kept my big mouth shut! Well, when he did come around, she went ballistic! I bet even he wanted to run away from her! Ha! Ha! Well, as it turns out, he was FURIOUS!! Furious, furious, furious and asked me what the tech's name was. I told him and he walked out. He came back some time later, apologizing. He explained that "of course, you aren't going to have a normal lung compacity...", blah, blah, blah. Oh dear, now the mother AND the doctor seemed to have joined forces now! I guess that was an okay thing; she stewed about it for a while longer. I was over it by now and just wanted to watch TV. Dr. Hardy left and my mother seemed pleased as punch! I said, "Did you really have to make that big a deal out of it? She probably got in trouble. What if I have to see her again?" and my mother responded, "Too bad. NO ONE talks to my child like that and accuses her of lying"!! I remember thinking, "Thank God I didn't tell her they took pictures of me nude"!!!! She probably would've sued!

The traction became old really fast, actually everything suddenly became old. I was ready to just move on with it. The days went by somewhat fast - they were filled with blood work and more respiratory exercises and meeting the other kids and constantly pulling myself up to the top of the bed. It didn't take long for all the kids to start realizing that mother was there all the time. And it didn't take me long to realize that many of their mothers were not. I would say that at least half of the kids there didn't seem to have any family. No visitors ever came for them. So naturally, they started hanging around my room all the time. They wanted a mother too. So........I very quickly realized that I was going to have to share mine. Whether I wanted to or not.

Going home

     Well, in my mind, the bad doctor had finally won! Bastard. He was right - I was a big baby and I couldn't stop crying. I was so mad that I was indeed what he had said,  A BIG BABY! I just kept crying and crying - but not out loud. I stifled it for the most part, mostly crying in the bathroom or when I was alone in my room. I didn't cry much on the drive home, instead I simply lay down and fell asleep!

     When we arrived home, both of my sisters were home from school and they were nicer to me than I thought they would be! After obligatory hellos and "How are you?", we basically just went about our business. It was a Friday and I had a weekend to pull myself together before school on Monday. I remember that my Uncle Joe and my cousin Tommy stopped by that night. I was so embarrassed! Tommy is three years younger than me (or is it 4?) and he was the youngest of my Aunt Sarah and Uncle Joe's children. As typical in most families, my mother was a little closer to her two sisters, than her brothers. So naturally, my sisters and I were closer to my Aunt Sarah's children. I feel I have a fine relationship with most of the cousins on my mother's side of the family (there are 11), but I've always felt closest to Aunt Sarah's children. Her oldest is my cousin Joey. He is also the oldest of all the cousins. I view him as the "patriarch" and I love him. He is so funny and doesn't even mean to be. He served in Vietnam and I can only imagine what he lived through. A couple of years ago, at a family function, he spoke a little of his experiences as a medic and I was enraptured. It was the first time I had ever heard him talk about it and in that moment I was humbled that he and so many other young men's lives had been dangled so dangerously on the brink for our country and how awful an experience that must have been. Although I am writing this blog because I too feel I have a story, it takes just a teeny moment to remember that my story pales in comparison to Joey's and many others. When I was even younger, Joey would take me for rides on his motorcycle and I just thought he was the "coolest". He was sort of like my "Fonzie"!! Their next child is Diane. Diane has been married to David for an eternity and he is a really nice guy. Ah...Diane. If Joey is the "patriarch", then Diane is the "matriarch"! Funny, because she has no children! Which in my humble opinion is a shame. I believe that she would have been a phenomonal mother. She is almost as funny as Joey and doesn't realize it either. Diane is just one of those people who I would trust to help me whenever possible. I don't get to spend as much time with her as I would like, but I do adore her. Whenever I do get to spend some time with her, I always walk away thinking, "I've got to call her and get together". Unfortunately, time seems to escape me and before I know it, another holiday is upon us and that is when I see her next. Then there was Marie. She married several years ago and presumably spends a great deal of time with her husband’s family because I haven't seen her in quite some time. She was alot of fun while I was growing up. Then lastly, there is Tommy. Tommy was born to my Aunt Sarah "later" in life and is like 17 years younger than Joey. He was closest in age to me, so we spent a lot of time together in our youth. He was the CUTEST little kid. Precious, in fact. You know when you see a really cute little boy and you think, "OMG - he is adorable!"?? Well, that was Tommy and because I didn't have a brother (the one thing I have always wanted most in life) he, in my mind, was my brother. My Aunt Sarah and Uncle Joe lived on the same street as my Nonnie and Poppie, so you couldn't visit one without visiting the other. So naturally, even if we went "up the hill" to visit the grandparents, the only saving grace was that I was able to play with my "brother". Tommy is married to Jill, whom I adore as well. She is by far the kindest, most gracious person you will ever meet and if you ever need anything, you just know that she is a phone call away. This is truly a woman who would give you the shirt off of her back if you needed it. She is a woman whom I truly look up to. I honestly don't know of a talent that she doesn't possess, but mostly I feel she is the finest mother and finest wife that exists. She is just a good, good person.

     So now that I went off-track on the family -- let's get back to my story! I'll probably do this often, sorry.

     Where was I? Oh yes, Uncle Joe and Tommy stopped by that night and I was embarrassed. But you know what?? It wasn't bad at all. Uncle Joe looked at me as he always did, he spoke to me as he always did, and he kissed and hugged me like he always did. Tommy asked, "Does that hurt?" and I said, "No. It's just heavy". He said, "Oh". That was it!! Phew!! I wondered if school would go so smoothly?

Fat chance.

     It now Sunday and I was going to school the next day. Over the weekend, I learned how to sponge bath (no showers, full body cast remember?) and what I was going to do about my hair! My sister Ursula, sweet as she is, decided she would help me. So, picture this......she would help me hop on a kitchen chair, I would lay down on the kitchen counter with my head (or should I say the back of the cast?) slightly hanging into the sink. She would cover up the headrest on the back of the cast with a plastic baggie and she would wash my hair for me! She did this almost every day for me. Looking back, she probably just didn't want to be embarrassed with her sister walking around with greasy hair! But regardless, she did do it and I was grateful. Sometimes, I would get her to help me when I was sponge bathing to try to put her hands into the opening of the cast at the shoulders with a washcloth and I would feel so much cleaner! And to think, I had to wear this cast for 2 1/2 months. It's no wonder I didn't smell horrible.

     In case you are not aware, kids are mean. If you are one of the people reading this who is a parent, trust me when I tell you, NEVER say, "Not MY child!". Yes, probably even your child has been mean and cruel to another child. There will be a story later on about that statement. The first week of school was rough. Very rough. I was in middle school (junior high, back then) and it was so embarrassing. Either people ignored me and didn't say anything at all and didn't even look at me or they stared and would make nasty, mean comments. I don't want to dwell on this long because it is a really bad memory, but I do remember that during the 2nd, 3rd, or 4th week after, when things had started to "normalize", out of the blue I walked into English, and a boy shouted out, "Here comes the linebacker!" and everyone started laughing. It was so humiliating and horrible. I tear up thinking about it all these years later. It was truly awful. I almost couldn't wait for the surgery because then I wouldn't have to go to school and I could be back at the hospital where I felt I fit in. I was counting the days and they were not passing fast enough.

Traction and Casting

Thanksgiving Day - November 22, 1973.
     I have very little recollection of that day, other than when I went to bed that night, I was very nervous. Yet, I fell sound asleep. Ah.....to be young again.

Friday, November 23, 1973 -
     My parents and I headed to Newington Children's Hospital. I distinctly remember my sister Ursula wishing me luck. I think my sisters were so damn thankful that this wasn't happening to them. I couldn't blame them! God knows that I didn't want this to happen to me. We arrived at the hospital and everyone was very kind and very empathetic. I don't have any recollection of being treated with anything but the upmost respect - for the most part anyway. I have spoken with many, many other scoliosis sufferers and they have such horrible stories of being treated poorly during their experiences. I cannot fathom how they were able to move forth after hearing many of their tales, and I now know that I was very lucky in this regard. So, if you're listening or reading this, thank you God!

     Upon exiting the elevator, you would walk out and turn left, literally around to the back of the elevator and right in front of you there was a small, open waiting room with turquoise chairs and sofas for guests, etc. At this point, you could then either turn left or right to go to patients rooms. Left was for the "teens"; right was for the babies and straight ahead opened to a very large waiting area/hallway which culminated in an incline that led to other areas that were unknown at the time. We turned left and I was first brought to my room, which was the second room on the right. I did not have a roommate during this stay. We put my bags down on my bed, which was the one closest to the door and then Nurse Shirley took us on a "tour". This "ward" was a large "U" shape, with the nurses’ station at the opening of the "U" which was right outside my room. She took us all around and introduced me to many of the other kids. The only rooms we didn't enter were the ICU rooms which were at the bottom of the "U". When we reached the end of the "U", you would walk in front of the nurses’ station and my room would be straight ahead. Just like a big circle.

We did the usual requirements and then Shirley said I could stay dressed, but that I needed to be brought downstairs for more x-rays and "pictures"? Hmmm, I thought, "pictures"?? Yeah, well.....here is a not so wonderful memory. I did have some basic x-rays done and then I was brought to another room where I was asked to strip everything off. Completely. They handed me some "paper" panties and and a black blindfold and told me to put them on. They barely covered anything. They were like today’s thongs! So there I stood there completely naked with the exception of a paper pantie and a black blind-fold! They then explained that they would be taking pictures of me for "before" and "after". Strange, but true. I have no idea why I didn't question this, but I was an "obedient" child and I suppose I just thought I better do what I was asked. I do recall that I was very, very uncomfortable and very nervous. I had heard of "bad" people who took pictures of young girls and I remember thinking, "God, I hope these don't end up anywhere!". I may have only been 12 years old, but I knew this was weird. Yet, when it was over, I jumped back on the gurney and returned to my hospital room and never uttered a word to my parents. I was too afraid that I may have done something that I shouldn't have allowed. I felt shame. To this day, I've only told two people this story and up until a couple of years ago, was still uncertain as to whether this was common place or not. I have since found out that it actually was. Rather disturbing, don't you think?
    
I was so surprised when Shirley said I could still stay in my clothes! Within a short time, Shirley came back with another nurse, Kim. Slowly, they explained the traction bed. I think that it was called Cotrel traction, and it was on a Stryker frame. It was totally barbaric and scary, I must admit. There was a pulley system overhead and weights at the head and foot of the bed. So I hopped on the bed, completely ignorant of what I was about to experience. I do remember that the first thing they did was slab Vaseline all over my chin. That should have been an indication, right?? However, being 12, I don't think I thought too much about it and I just did what I was told. Looking back, my parents must have been heart-broken and scared for me, but thankfully I sensed none of it. They never left my side and Shirley and Kim went about adjusting me in the traction bed. First, I was to lie on my back and a leather harness (I told you it was barbaric!) went under my chin and around my head. This was attached to weights, which gently (it really did feel gentle at first!) pulled my cervical spine upwards. Then, another leather harness was wrapped around my hips, which in turn was attached to more weights that gently pulled my lower thoracic and lumbar spine downwards by the hips. Shirley explained that each day, the weights would be increased. The motive was to "stretch" the spine straighter each day. I don't remember exactly how often I was rotated to avoid bed sores, but I was. I do recall that it was terribly uncomfortable to lie on my stomach with traction and it was very boring. I was not allowed up for any reason. I had to use a bedpan and I was sponge bathed daily and my clothes were changed, while still in traction. Very tricky. I thought it was so odd that I didn't have to put a johnny on like all the other kids and I was able to wear "street" clothes. I was too afraid to ask at first, but soon learned that my jeans would provide more cushioning from the leather hip belt than if I just had on a johnny or if it were on bare skin. It was not really painful or uncomfortable at first and if anything, I was actually excited during the first few days - I mean, NO school, NO sisters to fight with, my very own TV and I was able to choose what I wanted to eat. I thought it was better than going out to dinner; I was able to choose all three meals! You see, I've always been a "foodie". It didn't seem too horrible to me! Often people have asked me, "How could you not have been totally beside yourself crying and scared hooked up to that thing?". In all honesty, I do believe it was all because of my parents. They gave me NO indication that I had anything to be scared of. I looked to them; I truly believed that if I had anything to be scared of that my mother would have told me and since she didn't, I believed that everything would be okay. I trusted my parents 100% and they just acted as if this was no big deal. Of course, it probably helped that my mother was generally a very "matter-of-fact" person all the time - a trait that I myself have been labeled with on occasion! As a mother, I can only imagine how terrible it must have been for them to leave me night after night. I was 12 years old, all by myself in this huge hospital. I don't really know why I wasn't petrified, but I wasn't. My parents spent all day with me and would only leave at night and be back again in the morning. They were the epitome of "calm" for a child. I will be forever indebted to them for this; they truly were my rocks. All I ever had to do at that hospital was to look around me. It would always make me realize that I was a very, very lucky girl.

     At this point, let me explain where my parents stayed during this time. As it turned out, my parents had family friends, Teresa and Jim Serruta who lived in New Britian, CT. They were lovely and charitable people, who so graciously opened their home to my parents during my stay. It was a relatively short distance to the hospital and just like my Godmother Nancy, the Serruta's also managed a Bess Eaton donut shop as well. So, guess what I ate a lot of? I think I hate donuts nowadays because I ate so many of them in my youth!! Teresa was a quiet woman, but never without a smile and so sweet to me and obviously so kind to my parents. Jim was clearly as kind as his wife - I didn't see as much of him, but he also was very sweet to me. My Dad missed work during much of this time and stayed by my mother's side - which meant he was able to stay by mine as well. I was oblivious at the time, but in hindsight, how fortunate my parents were to have such wonderful and caring friends to rely on. So for the first couple of days, I was fine. However, after a few days, the whole thing was getting rather old! By Monday, my chin was hurting. I didn't want to complain, so I remained quiet for the majority of the day. Late in the afternoon, I very reluctantly told my mother that my chin was really hurting. She said she would put more Vaseline on for me but when she moved the chin harness aside, she noted that the skin had started to rub and blister. It was bleeding. My mother asked me why I hadn't said anything and I said, "I didn't want to complain". She immediately went and got a nurse and Kim came quickly. She said, "Valerie, why didn't you tell me?". So I got "scolded"(ever so gently) by all of them that I MUST let them know if anything hurt. You see, I didn't want to be a baby like that orthopedic doctor from Westerly called me! I was determined that NO ONE was going to call me a baby ever again!! I would show him! I was determined not to complain and not to cry. They had to put gauze and Vaseline constantly on it and lots of Bacitracin, as well. If I remember correctly, I think I had to start taking an antibiotic as well. Boy, did that hurt and at that point, there wasn't a lot they could do but try to make me as comfortable as possible. The worst part is that after a couple of days, the weight had increased so much at the hips that the hip harness would drag me down to the bottom of the bed, so I was constantly grabbing the bars over my head and pulling myself up. In turn, this would rub the chin harness as well. Ouch. By the 4th and 5th days, this was just a constant, repetitive act that I was plainly getting sick of. Suddenly, I no longer cared that I had my own TV, or that I could choose what I wanted to eat, or that I had no sisters to fight with. I was miserable and I just was done with the whole thing. I just wanted to go home and fight with my sisters and eat whatever my mother cooked.

     On the 13th day, I was taken for x-rays and informed that enough straightening had occurred and that I was ready for my cast. Yeah! I could go home after that. I was so excited - I was going home. The next morning, December 7, 1973, I was bathed and instead of putting on street clothes, I was put in a johnny. Next, I was taken to the cast room. This was reached by going up that incline, right past the large open waiting room that I mentioned earlier. (First there was a waiting area and then the incline). At the top of the incline there were two large bed scales, on either side of the wide hallway, in which you were weighed before and after casting. There were also offices to the left and a set of elevators to the right, for medical personnel to use only. Looking back, I was never afraid to be with all these strangers and away from my parents. These days, I would NEVER let my children go through this without me by their side because you can't trust anybody. Things were so different back then, but on the flip side - no harm came from it and actually I think it matured me in ways that I wouldn't have been able to otherwise. So, first I was weighed and then an orderly (a male no less! Like that would happen today!) took me on the elevator down to the cast room. Now, most everyone I have talked to that has shared this same experience has horrible memories around casting. Mine weren't fabulous, but they weren't horrendous either. For that I am grateful. First, you were shimmied from the bed to this tiny, skinny bar. That is the only way I can explain it. It always reminded me of a balance beam, you know - like gymnasts use. I was never allowed enough time to really look at it, but I always felt like I had to concentrate on balancing on it, for fear of falling. Then, I suppose this was when I learned to lose any modesty that I had ever possessed. You lay stark naked - completely. A stocking was put on my feet and drawn up right over my head. Someone would make a hole for my nose and my mouth so that I could breath. I couldn't see a thing - and then it would start. It was strips of Plaster of Paris soaked cheesecloth-type material that they would start wrapping, moving from bottom to top. It felt warm and wet. Rather gross, actually. It also smelled terrible. It would take what seemed like an eternity. I would guess it took an hour or two? All I could do was lay there, balancing and I would just listen to the people talk. They would laugh and talk about what they did the night before. They weren't mean at all, but they didn't speak directly to me either. They would talk amongst themselves and I would just listen. When they completed the cast, I had to lay there for a little while longer while they cut the gauze at the top and freed my face; then it always felt like whatever I was laying on was slowly pulled out between the gauze and the cast because I could feel it pull along the length of my spine and in the front. I was always afraid it was going to hurt me. Obviously, I now realize that it was used for spacing, so that there was some "room" in the cast for stomach expansion and growing breasts! Then I had to stand and sit and see if it needed trimming, which I did need in order to sit. Interestingly, they DID actually use a saw! Talk about scary!! It was a small, maybe 5 or 6", round and circular electic type saw. That was indeed the most stressful part about casting. Let me tell you, it is not a pleasant experience when someone has a saw that close to your skin - ESPECIALLY when you consider it is either near your face, your head, your armpit or your private areas!! Yeah - definitely stressful, even at 12! I had no idea what I looked like, there were no mirrors. After a while, I was put back on the bed and transferred back to my room. I can only imagine what my parents thought when they saw me; but once again, they didn't let on. The orderly left and Shirley came in and so cheerfully said, "OK, Valerie - let's go for a walk". I remember that my father said, "How much does that weigh?" and Shirley said, "About 25 pounds". It didn't mean anything to me, but I do recall that my father's eyes grew big and he said, "25 lbs? WOW!". I took it that it must be heavy?!? So off for the walk I went; just me and Shirley. Evidently, I passed because when we returned to my room she said that she was going to get all the papers for discharge. I told my mother that I had to go to the bathroom before we left, so I walked towards it. I don't think anyone was thinking about the fact that the bathroom had a full-length mirror as soon as you walked in. I felt heavy and clumsy and awkward but when I reached the bathroom and closed the door behind me, I was forced into seeing what everyone else was seeing. I shrieked and my parents came running. Gosh, that was a horrible moment. I knew that everyone had stated that I would be in a full-body cast, but I guess because I didn't know what that was, I never gave it much thought either. It literally went half-way up the back of my head in the back and came right up under my chin. It stopped where by shoulders end, and I looked like a football player. It went right down to my pubic bone in the front and just about to my tailbone in the back. Now I knew what a "full body" cast was and I was disgusted by what I saw. I hated myself, I couldn't look anymore and I was crying uncontrollably. I remember literally sitting on the toilet and my parents both standing over me trying to console me. But honestly, how do you console a 12-year old girl that is stuck in this thing?? It was useless. I wanted to die. In that moment, I would rather have been dead. I had started the entry to self-loathing and no one could help me. To think that just a couple of hours earlier, I was so excited to be going home and now I didn't want to go home at all. I wanted to stay where all the other kids looked like me. Different. I couldn't stop crying. And I didn't want to leave. How was I supposed to go to school like this? How could I even let my sister's see me? How could I go anywhere like this? I had entered the hospital exactly two weeks earlier, and I was one Valerie. Here I was, 14 days later, a completely different Valerie. Suddenly, I wished I had never been born.

Meeting the surgeons

      The elevator opened and it was the busiest place I had ever seen! There were kids everywhere. Dad went to the desk as Mom and I took a seat in the waiting area. We waited for a while, then a nurse called my name and we followed. We were brought to an examining room and the nurse asked my father to wait outside while I got undressed and put on a johnny. He then came back in and I was quickly bought down to x-ray. I don't know how many pictures they took, but it seemed like a lot. They took pictures from the front, back, and side. I was then brought back up to the room to rejoin my parents. We waited for what seemed like an eternity. Finally, two doctors entered the room. One was older; his name was Dr. James H. Hardy. He was a large man and because this reminded of the "other" doctor I spoke about earlier, I became somewhat frightened. Dr. Hardy introduced the younger doctor; his name was Dr. Edward Bradbury. Now, let me tell you - Dr. Bradbury was HANDSOME!! Oh boy, like I'm talking gorgeous!! He reminded my mother and me of a younger and thinner James Brolin. It was like Marcus Welby, MD revisited! For any of you younger than 40 that are reading this, you have no idea what I am talking about, I know! It didn't take long for me to learn that every woman and every young girl at Newington Children's Hospital was madly in love with him. I then repeated the same standing tests that I had already done so many times before and they asked tons of questions. I remember being mortified that one of them asked if I had my menstrual period yet, and my mother saying, "Oh yes, just this month, she had her first one!" - Like it was a proud Mother moment! OMG! I WANTED TO CRAWL UNDER THE EXAMINING TABLE!! How dare her tell them this?? How embarrassing! What was she thinking??


     Finally, a nurse entered with the x-rays and Dr. Hardy proceeded to put them up on the lightboard and started using a pencil and writing on the x-rays. I had no idea what he was doing but later on learned that he was determining the measurement of the angle of the curves, which is called the Cobb-angle. Scoliosis curves are still measured this way today. I was so happy when Dr. Hardy didn't ignore me like the "other" doctor in Westerly had, instead he looked right at me and said, "Don't be scared honey, I'm going to take good care of you". He was so reassuring and in retrospect, he was really, really wonderful with children. There was something about him that I trusted and instantly I felt safe. Dr. Hardy may have been a large man, but there was absolutely nothing scary about him. He was a big teddy bear with the heartiest laugh I had ever heard. It was very loud and thunderous, but lovable. I felt completely at ease. It wasn't until I was much older that I realized that I wasn't really fearful because I was just too young to really comprehend what he was saying. I was 12, and not an overly tense or uptight child. Another way in which I was very different from my mother and my sister, Michele. Those two were the Type-A's of the family. Actually, that behavior type is quite prevalent on my mother's side of the family. In my youth, it escaped me thankfully. Perhaps that's why today, I find it comical when people think I am a nervous nelly or a worry-wart, because growing up in my family, I was considered very calm and very laid back. Good lord, maybe that Type-A behavior is showing up as I grow older? Sometimes, I actually think so. Not always, it just depends on what the issue is. I assure you though that back then, not too much riled me. Not even the scary words coming out of Dr. Hardy's mouth. It probably helped that I couldn't take my eyes off of Dr. Bradbury!

     The bottom line was that I didn't just have just one curve. I didn't have two curves. Nope, lucky me - I had three! Almost unheard of. Even now, I have only met one other person with three curves and her third, or bottom curve, didn't appear until she was older. Scoliosis curves get measured in degrees (must be greater than 10* for a diagnosis) and usually appear as "C" shaped or "S" shaped and showing up in the thoracic and lumbar regions of the spine. Besides the curves, the spine generally "rotates" as well, which adds a whole new dimension to the term "twisted spine"! Due to the fact that I was not born with scoliosis (which would be called "congenital" scoliosis) and it showed up instead as an adolescent (between 11-17 yrs. old) and with no known cause, it is called Idiopathic Scoliosis. This was, and still is, the most common form of scoliosis. The doctors explained as much about scoliosis as they could in one sitting. Back then it was explained that my bones were growing but the exterior of my body hadn't started yet, so the spine had nowhere to grow, so it curved. One of the x-rays they performed is called a bone-age test. This x-ray is taken at the wrist. I recall that although I was chronicologically 12 years and 4 months, my bone age was 14 and 10 months. In layman’s terms, my insides were growing fasting than the shell of me! Although that is not entirely correct, it did make sense to me in my youth and I was better able to gain some sort of perspective as to what was happening to me. Today in 2009, the current consensus is that it is a multifactorial process that may include altered melatonin production, a connective tissue disorder, various skeletal muscle abnormalities, a contractile protein dysfunction or even some nerve function problem. There is even some research that states that women over the age of 27 are at higher risk of having a child develop scoliosis! I still don't think they really know. That consensus could change in ten more years because the knowledge and data surrounding scoliosis is changing all of the time. However, I do know that so much more is known now, 36 years later than when I was diagnosed and the treatment has as well too! Kids being diagnosed today have it so much better than we did, that's for sure. The doctors then explained that scoliosis happens more predominately in females and the newest studies at the time felt that you could always find some member in your family tree if you looked back just a little way and that I was sure to have a cousin or two eventually be diagnosed as well. However, I was a little different. They proceeded to say that curves beyond 50* made surgical candidates. Dr. Hardy took a deep breath and then informed us that my top curve was 82* and they felt it was pressing on my left lung; therefore they were concerned with the possibility of it collapsing my lung, which naturally could be life threatening. So that explained why I would become out of breath so easy and running was so hard. The second curve was measured at 67*, which was still considered pretty severe for the thoracic/lumbar portion of the spine. My 3rd or bottom curve was measured at 19* and sat very low in the lumbar/sacrum portion of the spine. They explained what their approach was going to be - and because Dr. Hardy was so kind and Dr. Bradbury was so cute, I actually wasn't scared at all. Hard to believe, but true.

     They went on to explain that I would require two surgeries, 2 weeks apart, and I would be in the hospital approximately 6 weeks. I either didn't listen or didn't comprehend anything else they said. In that moment, I do recall thinking, "Yeah, no school for six weeks!". That sounded pretty sweet to me! Due to my age, I realize now how ignorant I was and I have such compassion for myself. I just didn't have a clue. I have no real recollection of the remainder of what was discussed between my parents and the doctors; I just sat there assuming that my mother would explain more to me later. We left mid-afternoon and headed home. The whole ride home, I couldn't quite shake the feeling that I was changing before my eyes and that the "Valerie" that was,  would never be the same "Valerie" ever again. I may not have completely understood what I was facing, but I also knew that nothing would ever be the same again.

     My mother did in fact, over the next couple of weeks, explain everything to me - in simpler terms and in bits and pieces that I could understand. Looking back, she was wonderful. She downplayed it all and I had no fear whatsoever. She was forthright and honest and she was not the type to "sugarcoat" anything (not her style!), actually she gave me no indication that this was any big deal. In fact, she just said that some kids have to endure so much worse and that I was more than strong enough to get through it. Period. She told me that it was planned that I would enter the hospital on the Friday after Thanksgiving for about two weeks. The plan was to put me in weighted traction for approximately two weeks, and then I would have a full body cast put on and discharged. The assumption was that the body cast would hold any straightening that the traction would have created. I would return on February 6, 1974. They would remove the cast, repeat traction for 5 days, do testing and labs and then I would have my first surgery on February 12, 1974. I've always remembered that because that is Lincoln's birthday. Then, I would have the second surgery exactly two weeks later on February 26. I would stay in the hospital for a month or so after that recovering and would you believe that I would even go to school there? Then I’d be discharged and everything would be perfect! Good to go! Cured, they said! I would go on and live a normal life and forget that I had ever went through it! No big deal. All fixed and set for life. Yep, their exact words were, "You're CURED. Go live your life." Hmmm.....cured.

Or........maybe not??

The consultation

      When my father came home from work, I was still sobbing. I had no choice but to accept the fact that not even my parents could make this all go away. As I went to sleep that night, I prayed to make it all go away. Many thoughts kept running through my head, such as - "How was I going to handle school", "What do I tell my friends", "Will I lose my friends", "What is a Milwaukee brace", "Will I be deformed for life or can they fix it and then I'll be normal again", "Will an operation hurt", and then the one we ALL gravitate to in life when we are faced with the incomprehensible -- that maybe, just maybe, they had made a mistake and they were all wrong!!! As I've learned throughout my life, that is just desperation talking.

     As it turned out, they weren't wrong. They weren't wrong at all.

     I had my consultation appointment at Newington Children's Hospital on Friday, November 9, 1973. I took a pillow and blanket in the car and as soon as my father drove into Connecticut, I lay down in the back seat. I stared at the blue, sunny sky listening to parent’s hushed voices. I couldn't make out what they were saying but then again, maybe I didn't want to hear them. I chose to do what I still do to this day when I can't face life and its challenges one more minute. I shut down by closing my eyes and I simply fell asleep. The only difference between then and now is that the falling sleep part has actually become rather elusive. My way of "escaping" and managing life's stresses is to literally stop in my tracks and do nothing whatsoever - I barely breath. Some people clean the house, wash the floors, go shopping or run to the gym for an extra hard workout. Not me. Those kinds of activities stress me more. For me, that is running from the problem and doing your best to avoid it. I prefer to just sit and think about whatever it is that is bothering me, and I literally will stew over it. Sometimes for hours, but then it breaks and I can walk away -most times- with a sense of peace. It is as if I have to run into the fire, not avoid it, to ultimately deal with it. When I was younger, it would be at this point that I would find myself completely exhausted and I would simply fall asleep from mental fatigue. Unfortunately these days, the more I want to escape stress -whatever it may be- the more evasive sleep actually becomes. I'm still apt to sit or lay down and try to mentally "run away", but I just can't simply fall asleep like I was able to do that sunny day in November long, long, ago.

     I awakened to my mother calling my name. I sat up, assuming we were there and she said, "We've arrived a little early, do you want to get something to eat?". Something to eat? Honestly, what is it with Italians and eating?? It is as if food is the fix-all of everything. Wonder why when I am stressed, I eat? It's all my mother's fault!! However, if we were early, I thought "Why not eat?" - I mean, it never hurts to eat, right? We went into someplace like a Newport Creamery, I believe. I actually don't remember what I ate. My parents just had black coffee. We made small talk and I never let on that I was scared to death. I was too embarrassed. I wanted to be like my mother - strong. I always cried more than my sisters. I was always more emotional than anyone in my family and I was teased for it. I was the one that always wanted a kiss and hug, I was always more affectionate. However, neither of my parents was overly demonstrative or affectionate, physically nor verbally. Neither were my two older sisters - so from way back, I always wondered....am I really a part of this family? I started questioning whether I really had been adopted, as my sister Michele always tried to convince me! (That's a whole other story for another post!!). I guess I was really starting to wonder who I really was, I didn't always feel like I had a lot in common with my sisters or my parents and now I had this "deformity" - maybe she wasn't just teasing me, maybe I really was adopted? That was exactly my thought as I walked into the hospital that day. As I was pondering the real possibility of having been adopted and thinking that maybe my family was holding out on a big secret, my father went to register me and came back to the table where my mother and I had sat, with a zillion forms to be filled out. I remember it being very loud with children and parents and medical personnel, all flitting all around. It was a rather modern looking hospital for its day and the lobby was painted in bright colors. In the center were these very large circular openings and in one of them was a HUGE, and I do mean HUGE, stuffed dog. It was so cute and I noticed it actually had a price tag on it. I don't recall how much it was, but I do remember it was a lot of money and I asked my mother, "Would someone actually buy that?" and she replied, "I suppose so". I sat and pondered how lucky some other kid would be to receive such a gift, as her and my father were preoccupied with filling out the many forms. When they were done, the woman at the desk instructed us to follow the "red line" to the elevator and which floor to get off. We were then still to follow the red line. Hmm, the red line? I looked down and I hadn't noticed earlier that there were several very brightly colored lines leading to the elevators - red, yellow, blue, green and orange. The process was simple enough and today, we are all well aware of this system in hospitals. But back then and being from little 'ol Westerly, RI - I had never seen such a thing before! In that moment, I knew I was headed where no one I knew had ever been before. The elevator door opened, I took a deep breath and I entered. I purposely stood between my parents. I've always felt safer "sandwiched" and I still do today. I like being in the middle, I feel safe there. On some level, I knew that I was headed to a whole new world. A different chapter in my life so to speak and yet little did I know just how different it would be.

The orthopedic appointment!

     It was now the end of September and my mother and I were off to a local orthopedic in town. It was an afterschool appointment and if I can remember correctly, it was on a Friday afternoon. As soon as we arrived, I became nervous. I found this unsettling as I hadn't been too nervous beforehand. There was something about that office, perhaps it was the waiting room itself or the smell - perhaps even a premonition, but something was making my stomach flip. I told my mother, "I'm scared" and she said, "Oh, now there's nothing to be worried about! Everything will be okay.”. Yeah, right - no worries?!? Sure, her spine wasn't all crooked!  Easy for her to say everything was going to be alright. Why do mothers, including myself, always say this? I suppose it is a means to diminish concern or worry to a child, but I wasn't buying it at that moment. I was nervous. In fact, I had a pit in my stomach.

     We were then called in and the nurse said, rather callously, "Strip down and put this johnny on. The doctor will be right in". I said to my mother, "Like take everything off?” and she said, "Everything but your panties". I did as I was told, but I have to tell you - NOW I WAS REALLY NERVOUS! The only doctor I had ever been to in my life was our primary physician and now I was expected to be practically naked in front of this male doctor I had never met before! Yikes! Within moments he entered. I recall thinking that he seemed HUGE. Not overweight huge, just a "large" man, big boned and tall. I was ominously leery. I remember him speaking to my mother for a few minutes before asking me to stand. I repeated the same standing tests that I had done for Dr. Ruisi. He was not "cuddly" or warm in any way, shape or form. My stomach was now doing flip after flip and I was starting to feel sick. More than a pit in my stomach. Much more. He then said he would be right back and left the room without saying a word. I looked at my mother and said, "I don't like him!" and she said, "I don't like him either!". I was near tears, not for a particular reason yet, but more so because something just didn't feel right. I was uneasy. Something told me that this appointment was not going to go so well. Let's call it instinct.

     The doctor walked back in the room and I remember that he never even really looked at me, but spoke directly to my mother. He said, "She has scoliosis and it's pretty bad. Why did you wait so long?” The nerve of him!! My mother said, "I didn't wait long. We just noticed at the end of the summer, a few weeks ago. I immediately called Dr. Ruisi. We went to that appointment and he arranged for us to see you?!?”. My stomach was no longer doing flips - I truly thought I would vomit. I could tell that my mother was getting defensive and rightly so! However, to know my beloved mother, Rose Ahern, was to love her and NO ONE ever wanted to put her in defensive mode!! She could be like a pitbull when pushed! He continued and said, "Well, she's got it bad and I'm not sure they will even be able to help her!” What? What did he mean they couldn't help me? I couldn't believe what I was hearing. I shut down at that point and watched them talking as if I were outside of the room looking in. This couldn't really be happening, could it? I was there, but I couldn't hear anything except certain words. I heard "lungs", "collapse", "dangerous", "Milwaukee brace", "operation", "body cast"......when I felt that I could finally hear everything again, I realized that he had stopped talking and that he was looking right at me. Looking back, I think I had probably started to hyperventilate because I was trying so hard not to cry and I was using immense energy to stifle myself. However, he was now looking at me with disgust. I started to panic, what had I done? Why was he looking at me like that? I was so confused and kept thinking, "What did I do?”, I hadn't even uttered a single word, and I had not spoken. What could be mad at? Then he said, in a loud, gruff, nasty and unforgiving tone of voice, "Knock it off little girl and wipe those tears off your face! Stop being a baby and act your age! You’re never going to make it if you act like that!". I looked at him in shock, because as he was saying this he was walking towards me as if he were going to hit me!! Evidently, I hadn't been suppressing the tears as well as I thought I had. My mother jumped up and said, "Do NOT speak to my child like that and do NOT touch her!” He was startled at her immediate reaction, no doubt. My mother may have been a tiny woman, but she was sure feisty. It was silent for a moment as everyone regained their composure. I don't remember my mother's exact words, but I do recall something to the effect that if she didn't NEED him to make the referral to Newington Children's Hospital for me, she would walk out right then. He replied that of course he would be putting in the referral and said that his receptionist would be calling with the date and time. He never looked at me again and left the room. Can you imagine? He never once looked at me and said, "I'm sorry". To this day, I do believe that he is the worst, most horrible man I have ever met. People in recent years have told me that he frequently flies to Africa or someplace now and donates his time and provides free medical attention to the underprivileged. Perhaps he treated many more patients with disrespect and has now attempted to right his wrongs? Who knows, all I know is that I have not and will not – ever - forgive that man for his cruel behavior. It's not that I am not a forgiving person and certainly everyone, including myself, has at one time or another acted in ways that were not appropriate, that we are not proud of or did something in selfish haste and we hurt someone. It is an awful, awful feeling and we then have great remorse afterwards and usually beat ourselves up for it. Generally, we apologize for our actions and hope and pray that the person we have wronged will forgive us. However, he never apologized to me and cruelty, especially towards a young child, is not excusable. Ever. He left the room and my mother grabbed me in her arms and I wanted to sob, but I was so scared I couldn't. Not a tear fell at that point. All I wanted was to go home, where I felt safe and have my Daddy come home from work and fix it all. That's what Daddy's do, right? They're supposed to make everything all better. I wanted to make believe that this was just a horrible dream.

     I dressed and we walked out to the receptionist. The doctor was nowhere to be seen. My mother was steaming mad and it was building up. I remember thinking "Oh God, I hope she doesn't make a scene!”. Here I had just had the absolute worst experience of my life and being a typical 12-year old; I was suddenly more concerned about my mother embarrassing me!! Gosh, that was 36 years ago and people had such a reverence for doctors back then. I can only imagine that happening today! If that happened at this period in time to me and one of my children, I would probably slug him one! Being a mother myself, I can only imagine how she felt. I'm sure she wanted to kick him or better. I do recall her saying something to the receptionist that the doctor would be making an appointment for me at Newington Children's Hospital and the woman stated that it might be months and my mother said emphatically, "Oh NO, it won't! He WILL make that appointment and it best be in weeks, NOT months. You can tell him that for me!" and we stormed out. We sat in the car, and as if it were slow motion, we headed home. In silence. Thinking back, I think we were both in shock. As soon as I felt safe again, far from the doctor’s office, I suddenly started remembered what had happened before "the scene". Suddenly words were popping in my head, the “scary” words that I heard earlier - "Milwaukee brace", "lungs collapsing", "operation", "dangerous" and my stomach started doing flips again and I felt sick to my stomach. I looked at my mother and I couldn't tell if she was mad or she was scared. I'm certain she was both but more so I think she was trying to concentrate on driving so she wouldn't get us in an accident or something!! We drove right home and I went straight to my room and shut the door. I lay on my bed and I started reliving the appointment. Naturally, now that I was home where I felt safest in the world, I was able to release all the fear and anxiety that had been building for weeks. I couldn't believe this was happening. It didn't take long for me to suddenly find myself sobbing. And sobbing. And sobbing. I started conjuring up every horrible thought, every horrible vision of what lay ahead. I recall thinking that a Milwaukee brace would be like a man in armor! Oh, the thoughts I had! All I could think was, "Why me? Why me?” I believe that my mother was most likely telling my sisters while I was in my room. That is until she heard me sobbing. I remember her coming in and sitting on the bed. She kept running her hands through my hair, as only a mother can do in terrible times, when they want to assure you that everything will be okay. I wanted to believe her, but I knew better. It was that darn instinct again. You see, my mother was a strong, stoic woman who very rarely cried. Even on this horrible day when I knew her heart was breaking, she did not cry. She sure looked like she could, but no tears fell. She was trying to show me how to be strong and until recently, I rarely cried myself. However, I wished that she had lived long enough for me to have been able to teach her that it's much better to cry and release it. I often wonder if she had only cried over the years, if she'd still be alive? The stress she must have held in could not have been good for her health. Well, now I cry whenever I want and I hope I live longer than she did. Not that I'm not looking forward to being with her again one day, it's just that I'm not in any particular rush!! I remember "Romeo and Juliet" being at the movie theatre that night and she, "Let's go to the movies!" trying to get my mind off of it all, but I refused. I thought, "How can I go to the movies?”. You see, at the moment that doctor (I hate even calling him that) was so cruel to me, I started considering myself a pariah, unworthy of much. I was now a defective person. I just lay and sobbed. A sobbing pariah.

From the beginning......

     OK, as promised, I am going to start at the beginning. Here we go, are you ready?

     As I was growing up, my godmother Nancy Ligouri lived in Stamford, CT. One summer, my mother told me that Nancy had invited me to come visit her for several weeks. I couldn't say YES fast enough! I did this for several summers and how I loved those mini "vacations" within the customary summer school vacation! Oh, the fun I had. Nancy's children were all grown by then and I was treated like a Queen. Please, being the youngest of 3 girls, I felt I deserved every minute of all that attention!! Ha! Ha! Her husband, Peter was a big kid himself and I was always amazed at how I felt so welcome in their home. They had a dog, Ricky that I learned to love. He was the dog I never had. I was in heaven! Nancy and Peter managed a Bess Eaton Donut shop right down the street from their home. The days would fly by and we were always on the go. Often, Nancy and I would go to the donut shop and I would hang out and eat (a lot) donuts while she would attend to bookwork, sometimes I would join her on errands and best of all, Lord and Taylor was just down the street. Lord and Taylor! I felt like the luckiest young lady in the entire world. She would take me to the beach, she would take us into NYC, she took me to shows and plays, we would shop and do lunch and I loved every minute of it. Her daughter, my cousin Laura Lee, still lived at home. She worked in NYC and would take the train in everyday. How I wanted to be just like her when I grew up! I looked up to her and thought everything she did was the "coolest". She was in her early 20's and I thought she was so pretty and I was in complete awe of her. I so desperately wanted her to be my big sister. She also had the cutest, sweetest, most lovable fiancé, Eddie. I loved Eddie from the start. From the first time I met him, I was in love. He treated me like a little Princess and to this day, although I hardly ever get to see him anymore, I literally adore the ground he walks on. There are few others who have had a more significant impact in my life than Eddie Dusick! More of him to follow. Much more.

     It was the summer of '73 and Nancy took me school (clothes) shopping. I was in a dressing room trying on clothes (along with a new bikini) when I suddenly noticed that I looked....different? I hadn't noticed before? There I stood, in front of a full length mirror and my mouth dropped! It was as if I were looking at two different bodies, on my one body. Both sides looked "normal" per se, but yet they weren't "equal"!?!

     My left hip and my left shoulder looked like it should, but my right shoulder was higher and my right hip was higher. It was as if I had "tilted" overnight! I called for my godmother and I asked her to look at me. She acknowledged that she indeed saw what I was seeing and seemed concerned. She told me to make sure I told my mother as soon as I got home. Being 12 years old, I was easily able to shrug off any concern I had for the remainder of my trip.

     Upon returning home, I told my mother (as expected, she was keenly aware. Nancy had spoken to her while I was still in CT) as I was trying on my new clothes for school. I put a sundress on and both of us noticed immediately that the dress lay crooked on me! She came and stood behind me and said, "Since when did one of your shoulder blades move?". My shoulder blade did what? It moved? I barely knew where my shoulder blade was, and now it had moved? I could see the concern in my mother’s eyes as she swiftly left the room to call the doctors' office. My mother, although raised in a somewhat poor family, was always insistent on calling the doctor whenever necessary. She was a big believer in modern medicine and possessed complete respect for the human body and the need to care for it properly. Many of my friends know that I often refer to my mother as the original "granola cruncher". This woman actually worked out with Jack LaLanne every day! I'd be watching TV at night and she would be on the floor doing sit-ups and "bicycling", saying "C'mon kids, get some exercise!". I wanted nothing to do with it and I still hate exercise to this day. She was one of those Type-A, obsessive-compulsive "do-ers" who never rested! Usually I was exhausted just watching her! She was so into her health and the health of my dad and her children. Literally, my sisters and I would have barely a sniffle and she would be calling the doctor. Thank God she was so "modern" in this way. Once again, I pushed it out of my mind and went back to my David Cassidy posters and pushing the limits regarding "what's the most eye makeup I can get away with before Dad notices?" and fighting with my sisters. I recall my sister Michele being so jealous when I got back home from Nancy's that summer because I knew all the words to the most popular songs on the radio. Didn't she know I was cool now?? I mean, I DID just spend 3 weeks in Connecticut????

     The school year began within the week and my doctor appointment fell within that first week. Off we trekked to our family physician, Dr. Joseph Ruisi. He came into the room and my mother proceeded to update him on this recent realization and he asked me to stand up and he came and stood behind me. He lifted the back of my shirt and asked me to bend over. I did and little did I know how often I would be asked to repeat this bending test in the future, known as the "Adam's Bend Test". I did it again and again, all the while he would be randomly saying, "Hmm", "Hmm", "Hmm".... until he finally said, "Okay Valerie, you can take a seat". He sat down, looked at my mother and said, "Rose, she needs to see an orthopaed. I believe she has scoliosis". Scoliosis?? What the heck is that, I thought? He explained, in modest terms, that I had a curvature of the spine. He arranged an office visit with a local orthopedic physician.

     Due to the inappropriate manner in which I was treated by this orthopedic surgeon, I will refrain from posting his name. He deserves NO credit, not even name recognition. Dr. Ruisi had arranged this appointment for a week or two later. Upon entering the room, the nurse asked me to disrobe and put on a johnny. She left and I said to my mother, "Like, take off EVERYTHING?". I was 12 years old; I had never had to do that before! My mother said, "Everything but your panties". I obliged, but I didn’t like it. Little did I know the immediate future and thereafter held lots and lots of "Strip down, Valerie". It was just the beginning.

     I will continue this post soon. I need a break as this story, believe it or not, is almost the worst experience of my original hardship in my journey. Would you believe that when I was employed at Westerly Jewelry, "he" entered and I couldn't even look at him? I felt sick to my stomach and had to ask another sales associate to wait on him. I literally had to go to the ladies room and gain my composure. Thirty-six years later, I still detest this doctor for his brute medical approach.

How did this begin and what is my story?

To all:
     Many of you may not know this about me - but I've always enjoyed writing. I'm not sure that I am "journalist" material, or "author" material, however I have been told over and over again thru the years, that I have a gift with the written word. One day recently, I was revealing this desire to write to my children, Erica and Ben. Suddenly, Ben said, "So, tell your spine story and begin with a blog -as a start- and see if you like writing?". Hmmm.....and the notion started swirling in my head. ....

     As many of you DO know, I have been out of work on a medical leave for the past several weeks due to a bilateral knee arthroscopy. This surgery took a whole new turn when I ended up having multiple procedures on my knees instead of a simple one in each! It was only after the surgery when I was told the extent of the work done and realized that I was going to be out of work MUCH longer than I had ever expected!! Many of you also know that this surgery is very much like "Step #2" in a medical "sequence" that I have had to endure in preparation for a HUGE spinal surgery I am anticipating in the very near future.

     A lot of you are also very knowledgeable regarding my spinal saga and yet many of you hardly know much about it at all. So, I've decided to start at the beginning, for the benefit of those that would like to walk with me on my journey, so that you can follow along - really understanding how I have come to this point in my life. So here goes....I really would love it if you joined me!!!

Love, Valerie

PS - As my daughter Erica has pointed out, I'm terrible with punctuation and this blog doesn't have spell check either! So please forgive all my errors - I admit I am not a professional writer! My goal is really to just tell my story - for me and you!