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??
~~My first hand account of the journey that I have endured with my scoliatic spine since I was 12 years old. This is an adventure that I've only recently begun to acknowledge that I will be traveling until the day I die.~~
Wednesday, September 16, 2009
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.
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.
Sunday, September 13, 2009
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.
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.
Monday, September 7, 2009
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.
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.
Tuesday, September 1, 2009
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!
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!
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