Friday, October 30, 2009

Moving forward...

     So, two surgeries’ down - phew! You know what I suddenly remembered that I forgot to tell you? I have mentioned many visitors and people whose presence meant the world to me, but I forgot to talk about "Suzie Q". Suzie Q, was the little doll given to me by my Aunt Sarah and Uncle Joe. Starting with the day they gave that to me and Uncle Joe named her and put her on my pillow, she was with me the whole time. Right on my pillow and.....Dr. Hardy let her come with me for my second surgery. She came right into the operating room and she was still with me right after. She stayed on my pillow until the day I was discharged. I would turn my head (as best as I could) and talk to her or just look at her. She was my friend. I know I sound a little "loony" but my point is, how funny that we become attached to "things". I was sort of displaced from life as I once knew it, and suddenly my best friend was this little inanimate object. Strange. I think that is why every Christmas, I literally have to take a moment with her. Besides Eddie, Suzie Q helped me get through many a yucky moment herself. Me and Suzie Q. One day, Charlie took her from me and I was so upset. He wouldn’t give her back and I started to cry. He must have thought I was crazy, because as soon as he realized that I really was upset, he gave her back and apologized. After that, he would have killed someone with his bare hands if anyone touched my Suzie Q. He was very protective of me. He was holding out for that kiss. Poor kid, all he wanted was a kiss!! Ha! Ha!


     One sunny morning about a week after the second surgery, I was told that I was going to be helped out of bed. How exciting. They were making a big deal about it; like I was a baby and I couldn't understand what all the hoopla was about. I figured I would just walk. Well, I was wrong. Again. I recall that my mother was there and a nervous wreck and there were two nurses and a male orderly. So, as typical, they had me sit at the edge of the bed first. Then stand and all of a sudden, I became light-headed and had to sit again. I had been laying down now for almost a month. A month that consisted of two major, major spine surgeries, two spinal fusions and a severe allergic reaction and eating real food for probably only half that time. Hmmm.....maybe they did know what they were talking about? Maybe I was weak. It was decided that we would try to get up again in the afternoon. Sure enough, with two new nurses, I was going to attempt again. Now, I have to check into this, because suddenly I am thinking that my cousin Joey was there. Maybe I'm crazy, but he keeps popping into my head as I am typing this as if he were there? I just don't know for sure. Anyway, this time I was able to stand up without dizziness but they still wouldn't let me walk. We just got up and down from the bed several times and was told tomorrow would be the day. They took it very slow. So next morning, SUCCESS! I was a little dizzy upon standing, but it subsided and I was able to take several steps, but I was very weak and it was as if my legs didn't work like they used to? So as I was put back in the bed, the nurse explained that it was like learning to walk all over again. Due to the fact that I had been laid up for so long, my muscles had atrophied a little bit and I was very weak, so between my legs not being able to move well and the weakness, my brain didn't quite know what to do, but that with a little more practice, I'd be as good as new. Sure enough, it took a couple of more days to get my footing but I was discouraged because as I felt stronger, they still made me only get up on their schedule and with help.

     Regardless, I was so tired of lying around in bed. It was all moving too slow. So I concocted a plan. Late at night, when the curtain was drawn between me and my roommate and the door was closed (yes, they actually closed the doors back then) I would stand up in bed!!! Yep, I would get myself up and stand in the bed. I think it felt like a little bit of control or some desperately needed freedom? Now why the heck I thought that was a smart move, I have no idea. All I knew was that I couldn't put the side down on the bed and attempt to get out of bed on my own without making noise, so I figured I would just stand in bed. I never got caught, but I sure paid for it.

     A few days later, after going for some x-rays, I was told that one of my rods had moved!! Oops. I remember Dr. Hardy and my mother talking about possibly putting me back in the OR and straightening it out. I did not want that and I stayed silent. Then Dr. Hardy finally asked, "Valerie, you haven't gotten out of bed anytime you weren't supposed to or anything, have you?" Um, um,um,um.....God, what do I say, um,...um,...um,...? I replied, "Nooooo"!!!!!!!!!!! All I knew was that my mother would kill me if she knew I had stood on the bed!!

      The next day, Dr. Hardy came back before my mother arrived for the day. He came beside the bed, held my hand, looked at me and said, "Sweetie, I know you are bored, I know you want to get out of here......but please don't do anything that will chance you not being able to leave on time or messing up my good work, ok? Your back is perfect and doing really well, just do what the nurse's say" and he simply walked out. He never insisted on an answer, he never accused me, he was not angry or mean, and he just said what he had to say, smiled and walked away. I never stood on the bed again. Not so much because I was afraid of hurting myself but because I didn't want to disappoint him. He was like a father figure to me and I didn't want to let him down. I never, ever owned up to it, but then again, I didn't have to. I really don't think he ever did say anything to my mother. He handled it. He was the very first person in my life that I recognized what it meant to respect someone. I respected Dr. Hardy.

Sunday, October 25, 2009

Eddie Dusick

     Well, now the time has come to talk about Eddie Dusick. I won't be too descript; so as to protect his privacy. I can't imagine he would want to be chatted about with people he doesn't even know - I know that I wouldn't. However, he is a HUGE part of my young life and to leave him out would be unnatural. I briefly mentioned Eddie back in my second post. I met Eddie Dusick when I was 11 years old. He was dating my cousin Laura who, once again, is the daughter of my godmother, Nancy Ligouri. He was so charming and so sweet and for whatever reason, he loved to tease me. I think I was just this little kid to him and yet I think because I was so envious of Laura, and I wanted to be just like her, that I automatically would have liked her boyfriend too. He was just a good guy. He was a combination of a big brother who liked to annoy you and the big brother that you looked up to? (In case you haven't figured it out, I've always felt like I've lost out in life because I never had a brother and I very often view a few really good male friends of mine, as my brothers. I guess it is a void I feel in my life.) Then something awful happened. Eddie was in an accident that caused him to lose control of his legs. I can still remember my mother telling me what had happened and I was so upset that I vomited. Honest. We were in our kitchen and I totally lost it. All I knew was that he could not die. I went into our hallway where my mother always had a statue of the Blessed Mother and I got on my knees and started praying. I remember my sister Michele saying sarcastically, "What are you doing?" and I ignored her. I had praying to do. I honestly don't remember what year his accident was, but I would guess 1973? (Please forgive me if I am wrong with any facts whatsoever Eddie; there are some parts of my story that are confusing with regard to timetables.)


     Eddie required an enormous amount of hospitalization and rehabilitation and all of this occurred while I was also in the hospital. I was fully aware of how massive and grueling his recovery was and yet.........he still didn't forget about me. I thought about him often and would ask my mother, "How is Eddie?" and she would tell me that he was working hard at recovery. Imagine.........you are a healthy man in your 20's, dating this absolutely beautiful (believe me when I tell you she was beautiful, inside and out) young woman, you get engaged to marry and life as you knew it, suddenly comes to a screeching halt. BOOM! Just like that. I can only imagine the physical pain he endured, along with the emotional part of acceptance, but somehow he managed to remember me and what I was going through.

     You won't believe this, but.........Eddie wrote so often to me while I was in the hospital. Yes, you are reading that correctly, HE wrote to ME! Here he was in this awful, awful situation and yet he made me a priority through his own turmoil. Unbelievable, huh? I would get so excited when I would receive a letter from him. One time I remember that I had a hard time understanding what he had written and saying so to my mother. I remember saying, "It's messy" and my mother telling me that he was also rotated on his stomach quite often and perhaps he may have written in that position and I was astounded (Don't know if that is even true Eddie, but I did have that conversation with my mother regardless). Oh my goodness, the correspondence was incredible and I felt a bond with him like I can't explain. Our situations couldn't be more different, yet were they really? Obviously in a defined sense, they were VERY, VERY different, but yet I do believe that in a broad sense, they were in fact very much alike? He didn't just do this for a couple of weeks or randomly, I received letters from him regularly and this went on for a very long time. I say all of this with the utmost respect, as I do fully understand that his turmoil was far greater than mine. Yet, in my mind, he was my big brother and I knew that he loved me and how I adored him.

     Very often, when I was having a bad day, I would re-read his letters and think of him. Often through the years, I have thought about those letters and I so wish that I had kept them. I don't really remember everything he wrote, but I do recall that I always felt better after reading them. I don't think I have ever thanked him properly, as I really only fully understand the significance of his attention now in my later years. Eddie Dusick gave of himself when a lesser man would have only been thinking of himself, and for that I will always be indebted to him. I was just his fiancĂ©' 3rd little cousin or something. He owed me absolutely nothing, but he gave and he gave and he gave. What did he give me? Inspiration, when no else, and I do mean NO ONE else could. He saved me from many horrible moments and I love him dearly. As I said in my second post, few people have had a more profound impact in my life that Eddie Dusick and I have loved few more. He was an amazingly important person in my life and he always will be. He was another "brother" who I was never truly able to claim as my own, but he is in my heart ,where he will remain until my last breath.

     Now, so this doesn't end so philosophical (as all of you that know me, I can be very deep), I am going to tell you a quick story that explains the kind of guy Eddie is. Just so you can get a picture in your head. Sadly, I lost my cousin Cheryl Smith several years ago to breast cancer. Cheryl was the sweetest and funniest kid. I knew her more when I was younger, but while I was working at Westerly Jewelry in the 1980's, Cheryl came and worked for a short time. I don't remember if she was on summer break from college or it was over a Christmas vacation, but her and I became re-acquainted, so to speak, and we had so much fun together. I'll never forget her being mortified that I didn't like nor understand the game of football. I told her that so many people had previously tried to teach me, but I told her, "I am "unteachable". She claimed that was impossible and she was determined to teach me once and for all. She drew diagrams and kept repeating and repeating. This went on for weeks. Finally, one day, she looked at me with exasperation and said, "I give up! You really are unteachable!!" and we laughed and laughed and laughed. I still have no clue about the game of football!! Whenever I see a game on TV, I always think about Cheryl. It is still hard to believe that she is gone. Anyway, my sister Ursula, along with Aunt Mary, joined me to someplace in CT, to attend the wake. Now I hadn't seen Eddie is quite some time, years in fact, and literally the second I walked into the room I heard someone call my name. Loudly! Here he came zooming over in his wheelchair like he was entertaining in his home and people were staring. I'm sure they were wondering who the heck was this loud guy, at a wake no less, and I was a little taken aback because I could just feel people staring. I was worried that people would view me as disrespectful and I remember saying, "Shhh..." to him. I mean I was in a line for a very sad wake and here he was so happy to see us! Now, let me just say now - Eddie LOVED Cheryl. She was his favorite, I believe. He had a soft spot for her and they were very close. I know he was devastated at her death, but he just manages to grab each and every moment in life and live's it and seems to plunge through the more difficult parts of life, he just steams ahead full-force. He is very much a daredevil type. I remember he and I went outside for a few minutes later on and we spoke of Cheryl and how much he was going to miss her and what she meant to him and he cried. He is one of the most sensitive men you could ever meet. However, the point I want to make is that he is also so BOISTEROUS! So HAPPY! And loud! He is also absolutely lovable and when I was driving home that night I remember thinking that I am so blessed and so honored to know him and to be cared for by him. All I can say is, it's right back at ya MY Eddie!! So that is my Eddie Dusick story - I'm not sure if he wants’ to crawl under a table right now, embarrassed that I've raved on and on about him or he might just say, "I am pretty darn great, aren't I?" Ha! Ha! Whichever, I do adore this man and he is a very, very important part of my journey.

Sunday, October 18, 2009

After Surgery #2....

     So besides Marco, there was Charlie. Charlie was an African-American boy who was around my age. Charlie was a little more, well - let's say "mature" than the rest of us. Charlie was from Harlem, I think, and he was a tough cookie - yet very sweet too. Funny thing, he LOVED my mother. Looking back, I realize it was because his mother never came. I'm not sure he even had a mother. He was a burn victim and he had endured many, many skin grafts and needed to endure many, many more. He had been at Newington Children's Hospital for many months. He was a "regular". Perhaps he was a foster child, I really don't know, but he loved to spend time in my room. Well, the comical thing was.....my mother was a tad prejudice. Not that she thought she was better than African-Americans, if anything, she felt she had something to fear of them. She was such a good woman though and such a good mother because she always explained it as if she just couldn't help how she felt, but that my sisters and I shouldn't be like her! Isn't that so ahead of her time? She actually, on some level, realized she was wrong and didn't want her kids to be. Funny, huh? Anyway, you know how they say if a cat sense's you don't like it, it comes around you more often - well, the more my mother tried to ignore Charlie, the more he kept showing up. I thought it was so funny. I truly thought he was just trying to get to her, and then I slowly realized through the nurse's, that in fact, Charlie was "sweet" on me. Oh Charlie - I have so many memories.....

     It was Charlie that first made me aware of the song, "Seasons in the Sun" by Terry Jacks. This was a huge hit at the time of my surgeries. If you don't recall this song, I have added this one to the sideline as well. Please go and listen to it. Just click on the words underneath where it says, "Seasons In The Sun" in the sideline. If you listen to the words, it actually is quite meaningful and anytime I have heard this song since, it literally causes me to pause and think of Charlie. He told me that the song was about a young man who is dying but there are parts that just echo Charlie's emotions at the same time. I told him that my sister's name was "Michele", and so when he would sing it to me, he would replace "Michele" with "Valerie". Charlie LOVED music and he could also play the piano and he would play Paul Simon's, "Loves Me like a Rock" and I soon loved that to! He would play it all the time for me and sing it to me and shout to anyone who would listen, "I love Valerie!” Too funny. One day, he said to me, "Have you ever been kissed?" and I said, "No". He laughed and replied, "Well, I AM going to kiss you! I am going to be your first!” He would tell people this! That he was going to kiss me! OMG - I was bewildered and all I could think was "MY MOTHER WILL KILL ME!". So I immediately decided that Charlie would NOT be my first kiss and I came out and told him so. He just laughed and said, "Bet ya I will?” Oh, Charlie just didn't know me. Even at 12, I wasn't going to do anything I didn't want to, no matter how cute Charlie really was! He never did give up trying, and he never got what he wanted either!!! I often wonder what ever happened to Charlie.

     There was also Audrey Smith. Audrey was from Westerly and was the younger sister of a boy I went to Babcock Junior High with, Ray Smith. Audrey also had Legg-Perthe's, if I can remember correctly. Ray would pop into my room sometimes when he would at the hospital visiting his sister. I hardly spoke to him, I guess because I was more embarrassed than any other reason. He was a nice guy, and unfortunately he passed away at a young age, if I remember correctly, he was in his early twenties. I never did find out what happened, but I was very saddened when I saw his name unexpectedly in the obituaries way back when.

     School was a very strange place. We would all be wheeled down and It was a large room with all these kids laying in their hospital beds! I don't think I learned a thing, nor do I think anyone else did. I vaguely remember the teacher and it didn't take long to realize that it was all a waste of time as she obviously didn't have any control over the classroom, or Charlie. Charlie was ambulatory and not bedridden, and it was here at school that he would play the piano and sing to me. This may just be the very reason why I've always had a soft spot for a man who can sing or plays in a band!

     Time was passing, my regular visitors kept coming, and my mother was getting on my nerves. Too much togetherness, I'd say.

      So listen to this, the same nurse that gave me the two Ring-Dings was working this particular night and it was close to "lights out" time. My roommate had been discharged and I had the room to myself. I was wide awake and not sleepy at all and I was flipping through the channels when she came in. All of a sudden, she said, "Ooh, that's a good movie. You should watch it". I said, "Can I? I know it's almost 10, but I'm not even tired?” She replied, "Well, how about we make a deal - if you fall asleep, I will come in and shut the TV off and you can't put it back on again! You can watch the end another time, OK?" - I agreed. However, I had to also promise that if I was tired and miserable the next day that I wouldn't tell anyone she let me stay up! I agreed to it all! It was a musical movie I had never heard of called, "Change of Habit" with Elvis Presley and my girl, Mary Tyler Moore. I remember that Barbara McNair was in it as well. The premise was these three nuns, who I think were social workers as well (probably all-in-one, years ago) sent to some agency in the ghetto and Elvis Presley played Dr. Carpenter. The nuns wear "street" clothes so that the community doesn't realize they are nun's and more apt to go to them for help. The movie ends with Sr. Michelle (MTM) going into church, assumingly to pray for guidance as she clearly has feelings for Dr. Carpenter (Elvis) and he never knows that she is a nun to begin with. Anyway, the movie continued wayyyy past the "lights out" curfew and the nurse let me watch to the very end. If I remember correctly, it ended close to midnight. I was exhausted. The next day was a Sunday (I think) and I was miserable. Clearly, I didn't get enough rest and I was in a nasty mood and so, so tired. I kept falling asleep and evidently, my mother was concerned. I recall that my Uncle Sal came to visit that day, with my fruit basket and I was mean to him. I loved him dearly, but I was just sick of PEOPLE. I wanted everyone to go away and leave me alone for a while. My mother kept scolding me for being rude to him, but really all I wanted to do was sleep. I wanted out of that place and looking back, I realize that I was just being "me". I wanted OUT and since I couldn't have that, all I wanted to do was sleep and forget about it all. I was so miserable. I recall one of the nurses coming in and asking what was wrong and I told her I was just tired.

     She kept asking and asking and asking. My mother kept asking and asking and asking. Finally, I told the truth and they let me sleep. I wonder if that nurse got in trouble? All my sleeping just wasn't enough to make up for the night before though, because when I woke up my mother was eating a piece of fruit from my fruit basket and I had a fit!! I started yelling at her, "Stop eating my fruit! It's mine. Uncle Sal brought it for me, not you! Why do I have to share everything??" and she looked stunned. Poor thing, what a brat I was being that day! I just was tired of it all and I was having my version of a temper tantrum. I was done!! Didn't anyone understand? I just wanted to go home. I had had ENOUGH.

Wednesday, October 14, 2009

Surgery Number Two

Before I move to the next surgery, I did forget to mention that I had lost a lot of blood during the first spinal fusion and I had to have a blood transfusion. That was an interesting experience. I remember when they hooked me up that the nurse told me it was cold and I thought, "So?". I couldn't figure out why she was telling me that. For all of you out there that have had a blood transfusion, you know what I am going to say, but for all of you that haven't - it's COLD! It's damn cold. You literally can feel the cold blood running through your veins and I remember saying to my father, "I'm cold!!". He went and got a nurse and I recall her coming in with heated blankets, which felt wonderful. However, it can take many, many hours to all get in and I was cold for several hours later. I remember that my arm ached because it hurt so bad. Honest, it was so cold, it ached. Horribly. I was very uncomfortable and I remember hoping and praying that I wouldn't need to do it again after the second surgery.

So, here I headed for surgery again. This time I knew the drill and everything went smoothly. I remember being cold in the OR again and I remember the smell of the mask. However, this time I woke up in awful, awful pain. It was pretty bad. I remember that I was surprised that when I did "come to", my face was wet and I realized that tears were running down my eyes. A nurse came and asked if I was in pain and I said "yes" and they must have given me more meds, because I fell asleep again. They kept me very still and they must have been given me more pain med's this time, because if I can recall correctly, I believe that I basically slept the whole next day away.

I was told that I needed a blood transfusion again. Yuck! I was still in a lot of pain and the cold blood transfusion was more than I could bear. I was Miserable - with a capital M!! It was soon over and within a couple of days, I was starting to feel better. By the third night or so after surgery, I was finally allowed solid food and I recall that it was later in the night and my mother had already gone for the evening. The nurse came in and said, "What do you want to eat?" and I asked, "Well, what are my choices?" and she said, "Well, it will have to be a sandwich from the refrigerator up here, let me go and see what we have". Well, once again, for all of you that know me well, I do NOT eat mayonaisse - never have, never will. Well - I shouldn't say NEVER did but now I can tolerate it but it's not my favorite thing in the world. So what does she come back with? A ham sandwich with mayonaisse! YUCK! But.....she had a Ring Ding too!! You have NO idea how exciting that was. You see, my mother - you know, the granola cruncher - very rarely had these kind of "treats" in our house. I was the kind of kid who dreamed of Ring Dings and now, without even asking, I am being offered a Ring Ding like it was no big deal. So, I said, "thank you" and scoffed it down as fast as I could. Then she went to check and see if there were any other sandwiches and came back with a tuna fish!! Now, didn't I just tell her that I don't eat mayonaisse??? Now I was getting perturbed - here I had been without food for days and I was now told that I could eat and there was no food for me!!!! Jeez, why didn't they just wait until morning for me to eat? Then she pulled her hand out from behind her back and said, "But I got you another one of these!!" and produced another Rind Ding. Well, I am not kidding you, I thought that I had hit the jackpot!! NEVER in my life had I ever had the opportunity to eat TWO Ring Dings in a day, never mind a few minutes!! It was so exciting. So I scoffed that one down too. I asked for apple juice and she promptly brought me some back. I had a roommate at the time, although I do not recall her name at all and she and I were watching TV very quietly (TV watching was a big no-no after 10PM) and suddenly..........I felt sick to my stomach. At first, I didn't say anything. Yet, within minutes, I also realized that I was going to have to ring for the nurse. But I hesitated, hoping and praying that the feeling would subside. It didn't. I rang the nurses bell and soon a nurse came. She no sooner entered and the room and the Ring Dings were no longer being digested! Oh dear, so I remember her saying, "Oh God, I'm going to get into big trouble for giving you a Ring Ding!" and my roommate said, "It's probably because you gave her two!!" and she put her finger to her lips and said, "Shhh!!!!!". So she got another nurse to help and they had to change my sheets and my johnny and get me all cleaned up. My stomach wasn't feeling good at all. As soon as they got me settled, oh lordy - I hit the nurses button again!! This time they arrived fast enough that at least half of my vomit ended up in the basin they had propped under my chin. Now, I know this is really gross, but don't get yourself too excited - everyone vomits and it is what it is. So they cleaned everything up again. Or at least started too. Now before I tell you what happened next, how many of you have had to vomit lying down? It's not easy. You feel like you are going to choke to death. So here I am, after two vomiting sessions and my back was killing me. I swore that I could feel every single stitch that ran up and down the length of my spine. Everytime I would lunge forward, or should I say upward, I felt as if I were slamming back down on the hard cast. It was painful and my stomach was feeling sick again and I started to cry. Then the vomitting began again. I remember them scurrying about and one of the nurses calling out to another one at the nurses station right outside my door. She came and one of my nurses instructed her to call Dr. Bradbury. Within minutes, I was given compazine. Compazine, for anyone who doesn't know, is a drug that helps control nausea and vomiting. The nausea soon subsided and I fell asleep. Very early the next morning, I remember being awakened by this sweet, sweet young lady explaining that she was my "private nurse" for the next few days. She was a overseas student nurse. I don't remember her name, but I remember that she was short and tiny - tinier than my mother and I loved her accent. I told her that I had relatives that lived in England too and she was just lovable. It was still dark when she had wakened me for the blood pressure and temp. check and as soon as I woke up, I was feeling nausous again. But I also felt really weird. Hard to put my finger on it and I didn't say anything about it. I just told her that I felt feeling nauseous again and she ran out to the nurses. By the time they came back, I was having the dry heaves horribly and all I can say, is that is was a truly scary and painful experience - laying flat on my back and I was in so much pain. I don't remember if they had to call a doctor again, but I was given more compazine. Now mind you, if I had only told them that I was feeling strange to begin with, they may have realized that I was already showing signs of an allergic reaction. Within a short time of the second shot of compazine, I fell asleep again. However, this time when I woke up, something was wrong and there was no denying it. I started talking with the nurse and I felt agitated for some reason. Then I remember feeling restless and having this urge to get up and run. I remember thinking, "I wish I could run the track in gym class right now, I feel like I could run for ever". We kept talking and I said to her, "I feel funny" and she asked me to explain and I remember quite vividly that I was restless and jittery and not knowing how to articulate it. Within a few more minutes, I started having twitching and uncontrollable movements of my eyes, lips, tongue, face, arms, and legs. It was as if I was having a major anxiety attack or panic attack and felt trapped within my own body. The nurse ran and got another nurse again. This time I remember someone saying, "Page Dr. Bradbury or Dr. Hardy and see if either are in the building!! STAT!". OMG! Stat? I had only heard that word on Marcus Welby, jeez.....what the heck was going on?? I didn't feel like I was going to die or anything, I just felt weird - but all these nurses were running around and freaking out and now I was scared again. But instead of tears, I was mad and started kicking and I couldn't control myself. I honestly don't know how much time passed or anything but I do remember Dr. Bradbury running in and I saw a needle and syringe and I remember him telling me that I was having an allergic reaction to compazine and that he was giving me a medicine called Benedryl to counteract the compazine. I remember three nurses holding me down and I wasn't trying to fight them, my body was not my own and I was very scared and it was moving around and I had no control over it. I don't remember anything after that and when I woke up, that same English nurse was there again. She came over and said my name. I looked at her and she said, "Good afternoon, sleepy head" and I said, "Hi" and she proceeded to tell me that my Mom had just stepped out and would be back in a minute and I said, "My mom? When did she get here?" and she said, "Honey, you've been asleep for almost 24 hours". 24 hours??? I soon found out that a whole day had passed. Dr. Bradbury had given me such a large dose of Benedryl that it knocked me out cold. Over the years, I have since found out  that Compazine reactions typically require a HUGE dose of Benedryl to counterbalace the effects. My mother soon came back and she was so happy to see me and I remember telling her, "They said STAT?" and she told me that I had had a very severe allergic reaction and that I needed to remember the name of the drug because it would be my responsibilty in the future to remember that I can never have it again. Trust me, I never forgot and whenever I am asked if I am allergic to anything, I always shout out COMPAZINE because I never, ever, ever want to experience that again!!

The breathing exercises were going full-force again, I was continually turned over to avoid the inevitable bed sores and I was becoming very bored. I was also becoming sick and tired of being there. One day soon after, my mother was looking at my legs and she asked me if my leg hurt. I said, "No. Why?". She said, "Because it is all swollen" and she went and got a nurse who checked it out too. The next thing I knew, Dr. Hardy was there examining me as well. As you have probably surmised, they were fearful that I had a blood clot. I honestly don't recall x-rays or anything, but I do remember my mother and the nurses having to "massage" my legs. They rubbed very hard and for the most part it hurt and I hated it. Suddenly, I had on those ugly stockings and I had a physical therapist who came up to my room and started me on a leg exercise program. He came daily for a few days and then I had to do the exercises on my own, several times a day. I only did them when a nurse or my mother made me. Frankly, in my 12-year old mind, blood clots were the least of my worries. I had to figure out how the heck I was going to pass the time to get the heck out of there.

There were so many kids there that I was now calling my friends. There was Marco. Marco was a boy who was a few years younger than me and he had Legg-Perthes Disease. But during the following week, I was told that I was going to school!!! School, can you imagine? I had been so damn happy not to be going to school, and here I was now going to school in a bed. What an experience. I am truly being flooded with memories and I have so much to share with all of you.

Sunday, October 11, 2009

The time between surgeries....

I actually do remember waking up during surgery. I remember telling Dr. Hardy a few days later. He said, "You do?" and I said, "Yes, I do". I proceeded to explain that I have a vivid memory of feeling like I was waking up to the most horrible pain imaginable. I remembered that I was lying on my stomach and I felt like someone was using a butcher knife and cutting my back and I that I could hear my heartbeat. I also remembered that I tried to move my head and then..........I didn't remember anything else. He tried to assure me that I hadn't woken up. However, I found out many years later, that I did indeed wake up, but not on my own. Story to follow.

I remember being in moderate pain, but nothing I couldn't handle. It was okay. The respiratory therapists came in several times a day and I had to do the "blow" the plastic balls exercise. I did this every day for the next two weeks until the next surgery. I wasn't allowed out of the bed, and I was "encompassed" by the shell of my last cast, which was put together with a Velcro-type closure. I would be rotated onto my stomach several times a day to avoid bed sores, but other than that, I was basically bedridden. I watched TV, and some of the other kids would come and visit. My mother was there every day and my Dad came back that first weekend. Friday night in fact. He spent the weekend with my mother at the Serruta's house and visiting me.

That first weekend, I remember quite well that I was visited by my Aunt Sarah and Uncle Joe. They came in and Aunt Sarah said she had a little gift for me. It was the cute little ornament that I had seen with my mother down in the gift shop on the day I was admitted. If you'll recall, she was a little doll ornament with red yarn hair, parted in the middle with a yellow dress and red and white stockings. I was so happy because I had thought it was so cute. I remember my Uncle Joe asking, "What's her name?" and I said, "I don't know. What do you think?" and he said, "Suzie Q". So Suzie Q it was and on my pillow she went. She never left my side and in some strange way, I found her very comforting. I still have Suzie Q today. She is pulled out every Christmas and she get's put on my tree! Every Christmas when we put the tree up and pull the ornaments out, we come to that one and I say to Erica and Ben, "Do either of you remember the story of where this ornament came from?” They never remembered the story from year to year when they were younger, but they do now. They know that Suzie Q is very dear to me and no Christmas will ever pass without putting Suzie Q in a prominent place on my Christmas Tree!!!

I also remember many different visitors and many different gifts --

     ~There was my Uncle Sal. Uncle Sal was my mother’s brother and he came to visit me often - always bringing me a fruit basket from Sandy's!! He was so sweet, and he knew that I loved yellow apples (Golden Delicious), so it would always have a couple of them for me!! I LOVED fruit when I was little, I still do and he called me soon after I was admitted, before he came for his first visit and he asked me what he could bring me and I told him, "A yellow apple"!! I was delighted when he brought me a whole basket of fruit with two or three yellow apples prominently displayed at the top!! Yummy! The nurse's liked it too and not a visit went by that he didn't bring me a fresh fruit basket. At one of his visits, he came bearing the expected fruit basket but when my mother left the room for a minute, he came to me and said, "Valerie, there were so many cute things in the gift shop. Do you want anything?" and I said, "No" (my mother would have killed me if I EVER asked for anything!). So he said, "Oh c'mon - did you happen to notice the big stuffed dog for sale downstairs in the lobby?" and my eyes grew big!! ~~He wouldn't! He couldn't! He didn't!! Did he??~~ Just then my mother came back in and she said, "What Sal?” So he said, "Valerie and I were talking about the stuffed dog in the lobby and I was asking her if she liked it." Argh! My mother ruined it all - she said, "Sal, I want to talk to you outside" and they walked out. I heard her in a hushed voice saying something, and them arguing. They came back in and he said, "Valerie, are you sure you didn't like anything else in the gift shop?" and I said, "Maybe a book" and he said, "Okay, I'm going to get you one" and he left. My mother looked at me and said, "Did you tell him that you wanted that stuffed dog?” I said excitedly, "Of course not, but I think he wants to buy it for me!” I was sooooo excited. She burst my bubble and said, "He is NOT going to buy that for you. Do you know how much that cost??? Hundreds of dollars!!!" and blah, blah, blah....all I knew was that she was ruining my moment!! I said, "Yes, Mom". I knew she had got to him and I wasn't getting the huge dog. You had to know my Uncle Sal - when he reappeared, he didn't come back with just one book, not two books, not even three books, but FOUR books AND some candy!! He was a favorite Uncle because he spoiled his nieces and nephews rotten!! And I loved him to pieces. And I loved my fruit baskets and EVERYONE knew they better not eat the Golden Delicious apples!! They were MINE from my Uncle Sal!

     ~I also remember another really great gift. This one came from my Aunt Bella and Uncle Angelo. This was a FABULOUS idea for a kid and I always knew that if I ever knew another kid in the future that was ever hospitalized for a long period of time, that I would copy the idea. I guess it is a blessing, for the most part, that I've never known of a child that had to endure a long hospital stay to do this, but if you ever do, remember this idea. My Aunt Bella walked into my room with a large, wicker basket chock full.......of presents. Thirty presents in fact. It actually had 30 separate and individually wrapped presents. She explained you can only open ONE a day!! How exciting! I can't remember if this was given to me between the surgeries or after the second one, but I DO remember the gift! It sustained me and gave me something to look forward to every day. Great, great gift! Every morning, my nurse would come in and bring the basket to me, I would rummage through it and grab ONE gift and slowly open it. Now, you have to agree, wasn't that a great idea??

     ~I also remember my cousin Diane and her husband David coming to visit and they brought along Diane's friend, Mimi. I loved Mimi - I thought she was really cool too. She brought me flowers in a blue Lincoln Log bottle. I still have that bottle. I don't display it anywhere in my house but it is stored away in a closet and every time I glance at it, it brings back the memory of Mimi. I can even recall that I was in a bed that my Dad had rolled out to the large visiting area that I've mentioned before. It was the visiting area that was right before the incline that took me up to the scale beds and elevator that would take me down to the casting room. I can remember laying there and looking up and seeing Diane and Mimi. A nice memory.

     ~I have always, always loved maze puzzles. I still do - in fact, I find them relaxing and my kids know how much I love them. When they were small and would be given placemats in restaurants, I would get all excited when they had mazes on them and I would steal them from my own kids and do them!! Anyway, my cousin Tommy would make them for me when I was in the hospital and one time he made this elaborate and detailed and really hard one. I mean, he literally drew this thing out by hand!! I loved it because it took me forever to complete and I wasn't actually done with it in 5 minutes. I think it took me days. Another good memory I have and a really, really sweet thing for him to do for me. I've never forgotten it. He probably doesn't even remember it, but I do.

     ~I remember my father bringing my friend, Janet Christy to visit me on one of his Wednesday nights. I'm not sure if I mentioned that my father would return home on Sunday evenings back to Westerly. He would also come visit me every Wednesday night, staying until 9PM, then bringing my mother back to the Serruta's, then head home again. He would then come back again on Friday evening for the weekend. He kept this up for weeks, the entire time I was in the hospital. I look back now and just think STRESS!! My sister's, Michele and Ursula, would actually go stay most weekends at my Uncle Sal and Aunt Jenny's house. Anyway, on one Wednesday night, I was pleasantly shocked to see my father, my sister Michele and my good friend Janet Christy walking in to visit me. I was actually sort of embarrassed in her presence, but she was friendly and very sweet. I also think that may have been one of the very few visits I received from my sister Michele. She was the studious type and never wanted to visit and take time away from her studies. Plus, she was clearly embarrased of me. It was all just too much for her evidently. Ursula however, came often. She was always bringing me some baked good. I have a vivid memory of her baking me a "checkerboard" cake and being so impressed with it and not knowing how she did such a thing. My mother also had these ballerina candle holders and she would make me all sorts of things and put those in the the cake or cupcakes. She was a regular visitor.

     ~I do remember so many visitors - but I'm sure there were many who came and for one reason or another, I just have no specific recollection of. Like, I think I remember my cousin Joey. Or maybe not? I think I remember my Aunt Mary. But maybe not? I don't recall any of my grandparents. Maybe they came or maybe not? I hope no one is hurt by that, but it was a long, long time ago and I was only 12.

     ~I also remember that the Serruta's had a son, Jimmy. I have no idea how old he was but he had a girlfriend, Ruth. Now how I can remember that and not a lot of other things, I have no idea. But I do remember Ruth. I liked her a lot and she actually would pick my mother up some evenings and sometimes she would even come visit me when she got out of work in the late afternoon and she would feed me my dinner. It would give my mother a break and it gave me someone else to talk to. As I stated earlier, these are all just memories that have lingered and the timing of them is all distorted.

Another vivid memory is keeping up with my Mary Tyler Moore shows on Saturday nights. It came on from 9-9:30 and I loved it. Most of you who know me well, know that I was an absolute fan of MTM! I loved her in the Dick Van Dyke show and I used to watch that all the time. Then, when her own show came on in 1970, I was hooked. I loved the whole premise of the show and I was certain that I would be a young, career woman living in some great apartment with a great job and great friends. I LOVED the big "M" on her wall and I vowed I was going to have a big "V" on mine. So even in the hospital, when Satruday night came at 9PM, I watched faithfully. Her and Rhoda and Phyllis. I just loved it and I knew that one day, I was going to have my moment with throwing my hat in the air too!! When I would shout, "I've made it afterall"!. Thinking about living out my life like Mary Tyler Moore is what kept me going many times and I just knew that if I could just get past this whole scoliosis crap, I too was going to "make it afterall"!!!! Thanks Mary!! (Look to the right in the photo section for some pic's and info regarding MTM)

I do have a couple of other memories that I know did happen after that second surgery. So, let's just move to Surgery #2.

Friday, October 2, 2009

Surgery Number ONE

The days passed and soon it was time for surgery. Please remember that my memory is far from perfect and I have so many events to mention, but I am not certain of the exact time frames. So if anyone reading this feels that I have some inaccuracies, you are probably right! I think I have a good excuse - I was 12, I was drugged and I wasn't thinking about remembering it all. I just assumed I would. My time frames may be off, but the stories I recall are authentic and factual. That's the best I can do.

I remember the night before surgery, my parents were getting ready to leave and my mother - for the very first time - looked upset. I had no idea why. I was still in traction and would be right up until the morning. So they leaned down and kissed and hugged me good-bye. At that point, my mother looked at me and said, "Are you nervous, Valerie?” I recall thinking, "How odd? Why would she think I'd be nervous?” Ha! Ha! I was truly ignorant - and blessedly so. I said, "No - Am I supposed to be?" and she hesitated and said, "Absolutely NOT! Your father and I will see you in the morning". I said, "OK". And they left. I quickly fell sound asleep with no problems at all.

I was awakened at 5 AM. How do I remember that? Because it was the earliest I had ever been up in the morning. Surgery was slated for 7 AM. My parents did show up at some point during that period. Two nurses, who's name's I don't recall, came in, woke me up and proceeded to remove the traction. Then they asked me to roll over on my stomach and I asked why. They said because they needed to shave my back and disinfect it. I said, "Shave my back?” I honestly remember thinking, "Gosh, when did it get hairy?"!!!!!! Ha! Ha! I still laugh when I think about that! How would I know they do that? They proceeded to tell me that the skin on my back needed to be "bare" and sanitary. Looking back, wasn't it just going to be bacteria laden by the time I got to the OR? Things were sure different back then. Imagine that I was bed-ridden for 6 days, never having been up walking or anything. Talk about blot-clot potential! So, I did as I was told. I let them shave my back, even though I thought it was the strangest thing in the world. Then they proceeded to use Betadine and I remember wondering what the orange stuff was. When it was done and dried, I was allowed to roll back over! I think it may have been around then that my parents showed up? Soon, someone else showed up and took blood and hooked my up to an IV and they left. I remember my father pacing and he jingling the change in his pocket and my mother asked him to stop! It must have been making her nervous and edgy, in retrospect. He always did that with the change in his pockets and it was putting her over the edge! He stopped.

Then another strange person came in and I heard them tell my parents that they were doing something or other with the IV. So they proceeded, as my mother said, "They are going to give you something to relax you, in case you’re nervous" and I said, "Oh. But I'm not nervous" and she replied, "They are going to give it to you anyway". Hmmm......all this talk about being nervous started to make me feel nervous!! Was I supposed to be nervous and if I was supposed to be nervous, why wasn't I? I mean, should I be nervous because I wasn't nervous?? Two orderly’s soon appeared and said they were ready to take me to the OR. My parents kissed me and as they wheeled me away, I thought I saw a tear in my mother’s eyes. Nah, couldn't be? I figured it was just the drugs they gave me. I certainly was feeling woozy.

The OR was freezing cold and I was surprised at that. There were these huge, bright lights and what seemed like a ton of people scurrying around. Everyone was very nice and smiling and calling me by my name. It was as if they all knew me and I was actually okay with it all. Suddenly, Dr. Hardy was there and Dr. Bradbury too. I remember quite vividly, Dr. Hardy saying, "This will be over before you know it, Valerie" and I said, "OK". He told me they were going to put a mask over my mouth and nose and to just close my eyes and go to sleep. I started to feel nervous. So they put the mask on and I thought that was what would knock me out and didn't realize it was what they were putting in the IV! So as soon as they put it on my face, I started sucking in the air quickly so that it would put me to sleep. The funny thing is that all these years later and 6 surgeries later, I still start breathing in deeply as soon as the oxygen mask goes on!! I know, I know - I really do know that isn't what puts you to sleep, but I just feel better doing it. My last surgery, I did it feeling that it would be good to fill my body with good, clean oxygen before it gets knocked out. Probably foolish, but it works for me! But there was still a certain smell that overcame me when they put that mask on, a smell that has repeated itself several times for me. I'm not sure what it is, but with every surgery I have had, as soon as they put the oxygen mask on, I can't help by say to myself, "Here's the smell!". Can anyone relate to that?

I woke up and felt very sleepy. I kept wanting to go back to sleep, but they insisted on waking me up. I vaguely recall the recovery room and being wheeled to my room. I remember being wheeled off the elevator and someone saying my name. It was Nurse Shirley. She was saying, "Valerie, look - your mother and father are waiting right here". They were sitting on those turquoise sofas in the small waiting area. I opened my eyes and turned my head, but I felt dizzy and closed my eyes again. The next thing I remembered was waking and my parent’s right there. I think I slept off and on for what seemed like forever. My parent's obviously left at some point and they had me drugged enough that I slept through the night. But gosh, why do they have to come wake you up every couple of hours with the temperature taking, and the blood pressure monitoring and WHY do they insist on talking to you?? Ugh. I still hate that. I mean, how can you recover if they keep waking you up? Right?

I remember waking up in the morning hearing Dr. Hardy coming down the hall. In he came, larger than life. "Good morning, sweetness!” He asked me how I felt. How I felt? I felt like...........I had never felt before. Sort of like run over by a Mack truck, that's how I felt! The pain actually wasn't too horrible, that I recall, but I still felt - beaten. And simply exhausted. I don't recall much else over the next few days. They had taken my cast and sawed it in half and applied a velcro-type tape on it so it encased me like a turtle. I had 2 shells that stayed together with the velcro and within a few days, I was rotated on my stomach repeatedly. It hurt, but I don't recall it being horrific. I listen to stories from some of my new found scoliosis friends, and so many of them have horrible memories of pain. I really don't. If I hurt, I told them and they would give me something - because I would then feel better in no time. I really don't have any negative memory of that first surgery. And that's a good thing. Dr. Hardy was right; it was all over before I knew it.