Sickness
As promised in a previous entry - - - - - -
Here it is: The Sad and Tragic Tale of One Happy Sick Girl.
In November of 1981, every little thing that was free sailing in my short little life felt as if it hit an iceberg in the dead of night. My world rocked uncontrollably and it has not settled itself yet. Reality bites.
The things I remember with precise detail about the 24 hours before November 11, 1981 are that I had a tremendous crush on a hot Latin boy of 12, whose sloppy wet practice kisses made me feel like a natural woman even before my menstrual cycle did. I knew without a doubt that I was petrified to be leaving elementary school and going on to junior high and I was depressed because I found out my hot boy was going to be sent to a Catholic school and thus away from my meager public educated life. These were just the simple ramblings of a girl my age. Nothing going on at the time could have prepared me to go from normal, capricious girl to Sick Girl.
On that cold and stormy November night (I know it was cold, but I can’t swear that it was stormy. It just sounds better that way), a simple unassuming face rash became the real beginning of my never-ending story, or nightmare. However you choose to look at it can be decided later on in the tale. I know for sure that it was a Wednesday because Wednesdays are so average and middle-of-the road. But this particular one would be anything but average.
Aside from the near catastrophe of having to go to school the next day with a flat, pink rash that formed what appeared to be wings on the bridge of my nose and cheeks, I was feeling slightly lethargic. In the days before that one, I had been sneaking bits of my mother’s foundation to cover up the unsightly rash that started small, but spread rapidly as if I was pouring pink nail polish across my face. I mentioned the exhaustion to my mother as we sat down to do homework. She touched my forehead and said I was warm to the touch. That evening, when my dad came home from work, we – Mom, Dad and little brother had dinner, as we normally did. Table discussion that night was not about school or work, though. It was about the little rash, the elevating fever, and me. After dinner, without a lot of forethought, we took a drive to Dr. G’s office.
Dr. G had been our pediatrician for as long as I could recall. He knew my brother and me well. Within 10 minutes of examining me, Dr. G sensed something was terribly off about his usually healthy patient. Jokingly, he told me I was fibbing too much and he noticed my nose was much longer since last time he saw me. However, I was a perceptive child and I saw sadness in his eyes that his jokes and laughter could not conceal. Dr. G was scared.
By the way, Dr. G is Hispanic. He was purposely chosen because my parents spoke little English back then and they wanted, at the very least, to understand what was being said about us kids. One of the many funny things about immigrant parents is that they sometimes forget that you have a basic understanding of both of the languages that occupy your life. Therefore, when they want to talk about you behind your back in front of your face, they feel the need to whisper loud enough so you can hear them, while speaking the language they feel is most likely to keep you in the dark. I think they think they are keeping something from you.
This is how I recall it went that night. “Señor y Señora Lara. Su hija no ésta bién. No se que tiene pero necesito internarla al hospital.” Roughly translated, because I am sure you got that, I was sick and I needed to be admitted to the hospital. Pronto!
To say that the evening became a well documented blur after Dr. G uttered his unknowingly precise diagnosis is to put it in the most basic of terms. From Dr. G’s office it was a rough and tumble ride back to our apartment to grab a few pieces of clothing, mostly socks and panties, and immunization documents, which I can still remember as that worn little yellow booklet with the different color inks and the NYC Department of Health stamp on its cover. My mother was so careful with all of our important things and kept our records in clear plastic bags to protect them. She knew exactly where she kept it, too, and so grabbing it was a quick and efficient matter. All packed, we headed back to the car. I can’t say this for sure, but I do believe my father’s otherwise careful driving was altered that night, probably by his new state of discomfort knowing that his little girl was not well. In the car, silence traveled like another passenger, occupying a seat and most of the air inside. Instead of the usual petty bickering and misbehaving that went on between us, my brother leaned against the door and promptly fell asleep. My Mom was silent, praying no doubt. Dad was paying excessive attention to the road ahead – the literal one and the one my family was about to embark on. I was uncomfortable. The back seat of our old green Ford Falcon felt hard on my legs. The windows remained shut because it was cold and I felt stifled inside. I started to breathe with my mouth onto the frosty window, so I could use my gloved fingers to draw a happy face.
My first impression of the hospital lobby was: "Wow!" followed by "This is not so bad!"
It appeared majestic to me. It was like the lovely entrance to a high-end hotel. The dark mahogany reception desk sat elegantly to the right of the doors and the smiling receptionist reminded me of my first grade teacher. The clean leather seating in autumn shades of brown and auburn and the olive colored area rug beneath them gave the whole place a charming appeal. For a second, I let out a sigh that made it obvious that I had been holding my breath since we left Dr. G’s office some two hours before.
Miss Sweet (not her real name - just her demeanor) at the reception desk directed us to admissions. She was Hispanic and said to us that Dr. G had called ahead and that the pediatric admissions nurse was waiting for me. The appeal of welcoming warmth melted quickly. After the smiling receptionist directed us, we got to meet the not-so-friendly woman in the admissions office. Ms. Bitch (her real name and demeanor) was expecting me and let that be known with many empty blood vials in a plastic lab bag all clearly labeled with my name. That gave me a bad feeling right away and I had the urge to kick her hard on the shins and make a run for it.
Instead, I watched, with my hands folded between my knees and with my heart beating so hard in my chest that it hurt my ribs, as my parents signed paper after paper with small print that they could not even read because it was in English. I wanted to say something right then. I wanted to stop the madness of the moment and ask to read the documents they were signing. I wanted that woman to know that my parents were not alone. They had me to be their eyes and ears. She talked over them in a demeaning fashion and it angered me. But by then, I was too petrified with fear to utter a word. I sat numb until it was time to go to my assigned floor. By then the incredible urge to vomit had overtaken me and when I reached the first bathroom I saw, I excused myself to pee, but then tossed my cookies all in that john.
Fast forward to 2008, with the understanding that between then and now I have been brought to my knees countless times with the affects and symptoms and abuses of my illness, Systemic Lupus Erytomatosus. My Lupus – as it is affectionately know - was diagnosed exactly 33 days after I was admitted that November night.
Before that they’d guessed at several other possibilities – leukemia, platelet disorder, even cancer. Way to torment the parents!
Of course, it was none of the above. But it still wasn’t good and what a way to keep my poor parents up nights with terrorizing fear. Since then I have endured pain that no child should ever have to endure. I have seen things that no child should have to see. I have survived things no child should have to survive.
After 33 days I had little left of the school year to enjoy. I wouldn't see my friends until months later. Time is different for kids. They forget quickly. They reinvent their lives quickly. They make and lose friends quickly. They missed me, but only for the first few days...
All of the abuse of the late 80s lead to the loss of my kidney function at 18 just after my high school graduation. believe it or not, I was grateful that I was just able to graduate without ever hearing the word - dialysis. The time I spent on dialysis is still so vividly painful, that I can't yet bring myself to put it into words.
***SIDEBAR: Even on my worst enemy on earth – if I had one – I would not wish dialysis. It is THAT awful! ***
2008 – Today, I am post-four kidney transplants. Members of my unbelievable family generously, selflessly, kindly and lovingly gave all four kidneys. Why four? Sadly, because through absolutely no fault of my own and for no medically explainable reasons, my kidneys have failed on, or around, the same length of time each time. It is an awful, sad and terrifying bomb ticking way to exist. However, I do exist and when I am well, I try my damnedest to live my life full and fun. I try to love my loved ones and be fun for the sake of fun and be happy because happiness rules and be nice because mean people suck!
This abridged version of my life’s events will serve another purpose – it will give me an opportunity to fill in all the huge gaps I left in other blog entries.
So you ask: Is she really happy? Sure I am - when I am well enough to write this all down!
Happy reading!
Here it is: The Sad and Tragic Tale of One Happy Sick Girl.
In November of 1981, every little thing that was free sailing in my short little life felt as if it hit an iceberg in the dead of night. My world rocked uncontrollably and it has not settled itself yet. Reality bites.
The things I remember with precise detail about the 24 hours before November 11, 1981 are that I had a tremendous crush on a hot Latin boy of 12, whose sloppy wet practice kisses made me feel like a natural woman even before my menstrual cycle did. I knew without a doubt that I was petrified to be leaving elementary school and going on to junior high and I was depressed because I found out my hot boy was going to be sent to a Catholic school and thus away from my meager public educated life. These were just the simple ramblings of a girl my age. Nothing going on at the time could have prepared me to go from normal, capricious girl to Sick Girl.
On that cold and stormy November night (I know it was cold, but I can’t swear that it was stormy. It just sounds better that way), a simple unassuming face rash became the real beginning of my never-ending story, or nightmare. However you choose to look at it can be decided later on in the tale. I know for sure that it was a Wednesday because Wednesdays are so average and middle-of-the road. But this particular one would be anything but average.
Aside from the near catastrophe of having to go to school the next day with a flat, pink rash that formed what appeared to be wings on the bridge of my nose and cheeks, I was feeling slightly lethargic. In the days before that one, I had been sneaking bits of my mother’s foundation to cover up the unsightly rash that started small, but spread rapidly as if I was pouring pink nail polish across my face. I mentioned the exhaustion to my mother as we sat down to do homework. She touched my forehead and said I was warm to the touch. That evening, when my dad came home from work, we – Mom, Dad and little brother had dinner, as we normally did. Table discussion that night was not about school or work, though. It was about the little rash, the elevating fever, and me. After dinner, without a lot of forethought, we took a drive to Dr. G’s office.
Dr. G had been our pediatrician for as long as I could recall. He knew my brother and me well. Within 10 minutes of examining me, Dr. G sensed something was terribly off about his usually healthy patient. Jokingly, he told me I was fibbing too much and he noticed my nose was much longer since last time he saw me. However, I was a perceptive child and I saw sadness in his eyes that his jokes and laughter could not conceal. Dr. G was scared.
By the way, Dr. G is Hispanic. He was purposely chosen because my parents spoke little English back then and they wanted, at the very least, to understand what was being said about us kids. One of the many funny things about immigrant parents is that they sometimes forget that you have a basic understanding of both of the languages that occupy your life. Therefore, when they want to talk about you behind your back in front of your face, they feel the need to whisper loud enough so you can hear them, while speaking the language they feel is most likely to keep you in the dark. I think they think they are keeping something from you.
This is how I recall it went that night. “Señor y Señora Lara. Su hija no ésta bién. No se que tiene pero necesito internarla al hospital.” Roughly translated, because I am sure you got that, I was sick and I needed to be admitted to the hospital. Pronto!
To say that the evening became a well documented blur after Dr. G uttered his unknowingly precise diagnosis is to put it in the most basic of terms. From Dr. G’s office it was a rough and tumble ride back to our apartment to grab a few pieces of clothing, mostly socks and panties, and immunization documents, which I can still remember as that worn little yellow booklet with the different color inks and the NYC Department of Health stamp on its cover. My mother was so careful with all of our important things and kept our records in clear plastic bags to protect them. She knew exactly where she kept it, too, and so grabbing it was a quick and efficient matter. All packed, we headed back to the car. I can’t say this for sure, but I do believe my father’s otherwise careful driving was altered that night, probably by his new state of discomfort knowing that his little girl was not well. In the car, silence traveled like another passenger, occupying a seat and most of the air inside. Instead of the usual petty bickering and misbehaving that went on between us, my brother leaned against the door and promptly fell asleep. My Mom was silent, praying no doubt. Dad was paying excessive attention to the road ahead – the literal one and the one my family was about to embark on. I was uncomfortable. The back seat of our old green Ford Falcon felt hard on my legs. The windows remained shut because it was cold and I felt stifled inside. I started to breathe with my mouth onto the frosty window, so I could use my gloved fingers to draw a happy face.
My first impression of the hospital lobby was: "Wow!" followed by "This is not so bad!"
It appeared majestic to me. It was like the lovely entrance to a high-end hotel. The dark mahogany reception desk sat elegantly to the right of the doors and the smiling receptionist reminded me of my first grade teacher. The clean leather seating in autumn shades of brown and auburn and the olive colored area rug beneath them gave the whole place a charming appeal. For a second, I let out a sigh that made it obvious that I had been holding my breath since we left Dr. G’s office some two hours before.
Miss Sweet (not her real name - just her demeanor) at the reception desk directed us to admissions. She was Hispanic and said to us that Dr. G had called ahead and that the pediatric admissions nurse was waiting for me. The appeal of welcoming warmth melted quickly. After the smiling receptionist directed us, we got to meet the not-so-friendly woman in the admissions office. Ms. Bitch (her real name and demeanor) was expecting me and let that be known with many empty blood vials in a plastic lab bag all clearly labeled with my name. That gave me a bad feeling right away and I had the urge to kick her hard on the shins and make a run for it.
Instead, I watched, with my hands folded between my knees and with my heart beating so hard in my chest that it hurt my ribs, as my parents signed paper after paper with small print that they could not even read because it was in English. I wanted to say something right then. I wanted to stop the madness of the moment and ask to read the documents they were signing. I wanted that woman to know that my parents were not alone. They had me to be their eyes and ears. She talked over them in a demeaning fashion and it angered me. But by then, I was too petrified with fear to utter a word. I sat numb until it was time to go to my assigned floor. By then the incredible urge to vomit had overtaken me and when I reached the first bathroom I saw, I excused myself to pee, but then tossed my cookies all in that john.
Fast forward to 2008, with the understanding that between then and now I have been brought to my knees countless times with the affects and symptoms and abuses of my illness, Systemic Lupus Erytomatosus. My Lupus – as it is affectionately know - was diagnosed exactly 33 days after I was admitted that November night.
Before that they’d guessed at several other possibilities – leukemia, platelet disorder, even cancer. Way to torment the parents!
Of course, it was none of the above. But it still wasn’t good and what a way to keep my poor parents up nights with terrorizing fear. Since then I have endured pain that no child should ever have to endure. I have seen things that no child should have to see. I have survived things no child should have to survive.
After 33 days I had little left of the school year to enjoy. I wouldn't see my friends until months later. Time is different for kids. They forget quickly. They reinvent their lives quickly. They make and lose friends quickly. They missed me, but only for the first few days...
All of the abuse of the late 80s lead to the loss of my kidney function at 18 just after my high school graduation. believe it or not, I was grateful that I was just able to graduate without ever hearing the word - dialysis. The time I spent on dialysis is still so vividly painful, that I can't yet bring myself to put it into words.
***SIDEBAR: Even on my worst enemy on earth – if I had one – I would not wish dialysis. It is THAT awful! ***
2008 – Today, I am post-four kidney transplants. Members of my unbelievable family generously, selflessly, kindly and lovingly gave all four kidneys. Why four? Sadly, because through absolutely no fault of my own and for no medically explainable reasons, my kidneys have failed on, or around, the same length of time each time. It is an awful, sad and terrifying bomb ticking way to exist. However, I do exist and when I am well, I try my damnedest to live my life full and fun. I try to love my loved ones and be fun for the sake of fun and be happy because happiness rules and be nice because mean people suck!
This abridged version of my life’s events will serve another purpose – it will give me an opportunity to fill in all the huge gaps I left in other blog entries.
So you ask: Is she really happy? Sure I am - when I am well enough to write this all down!
Happy reading!
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