I just RSVPed no to my 20th high school reunion. Any of my reasons in and of themselves are enough to decline the invitation, but I still feel sad about it. Torn, actually.
Since my eye removal, my chronic illness has been kicking my butt thoroughly and unceasingly. Traveling takes tons of energy and under the best of circumstances, I end up exhausted by the end of my trip. Given that my body is not doing great right now, I can't take the risk of making things worse. I can't handle worse.
Do you know how much it annoys me that, yet again, my chronic illness is limiting what I do? It's one thing if I have to miss a musician who performs monthly or even a party with friends I can find other ways to see. When it's your 20th reunion, there's no way to do that next month or arrange an alternative gathering. I'm just going to miss it. Period. Maybe I'll make the next one in ten years isn't comforting.
Before I had to make the difficult decision that health concerns had to dictate my choice, I was struggling to decide whether or not I wanted to attend. On the one hand, I would like to reconnect with people from my past satisfying my natural curiosity about how they each have changed over the years. A significant portion of those who stood with me on graduation day also came in with their parents on our first day of preschool. We learned our abc's together, collaborated on projects, worked on the high school paper side by side, debated each other in Forensics, and grew up together. With only a class of about one hundred students, we have a bond forged from shared experience and that connection draws me toward Upstate New York this Memorial Day weekend.
On the other hand, school was hard for me. I started kindergarten in the fall of 1977 which was the first year federal law required schools to allow disabled kids to attend regular classes if their parents so chose. And, well, my parents so chose. Adamantly. Actually, they had to fight for it to happen. This meant the school was not experienced with having a visibly disabled child, my classmates were not used to visible physical difference, and parents were not equipped to handle it either. Disability was a shameful thing back then and nobody talked about it directly. AS I look back on it, I can see exactly why school was so hard for me. I have a lot of empathy for my classmates as well because they were thrown into a situation without anyone providing explanations or support. By the time we were all old enough to talk about it, there were years of silence that tied our tongues.
I want to make something clear. With the notable exception of 2 kids in junior high, I was not actively teased or ridiculed. My problems stemmed from not being included. My friends were few and my socializing for the most part limited to school activities. What lack of understanding created in preschool was magnified by the time we dawned our caps and gowns. Add into the mix my horrible self-image shaped by reconstructive surgery experiences and the snowball effect of a lack of social skills and you get a formula for isolation and benevolent ignoring.
Today, I still have problems in large groups and quietly sitting by myself is commonplace at parties. Rarely do I feel as though I belong in a group. My difference, and people's lack of understanding of it, creates barriers few wish to climb.
In light of past and present experiences, I am not certain what reunion would be like. I have had a rather unsettling six months and my emotions are a bit tattered. If I went to my reunion and wound up sitting by myself, I'd be pretty upset. Okay, really upset. I realize the reverse could just as easily happen, but the uncertainty makes me hesitant to take the risk. I'm not equipped to deal with some of the possible outcomes.
Did I mention that everyone I graduated with was used to me being able to see some and now I'm totally blind? Oh, yeah, and there's the little matter of a chronic illness, a prosthetic eye I have yet to pick up from the ocularist, and the fact that I'd be attending stag while most people are bringing spouses. It was a daunting prospect to consider when I thought I would be feeling more or less myself. Right now, with my body struggling to keep it together, I can't even imagine it.
Yet I am saddened to the point of tears over missing my reunion. The part of me that never avoids something out of fear is throwing a prolonged temper tantrum. I think this all boils down to a situation where all solutions lack the essential component of making me happy. Oh well. May this be my worst problem in 2010.
Showing posts with label childhood. Show all posts
Showing posts with label childhood. Show all posts
Wednesday, May 5, 2010
Wednesday, October 28, 2009
What My Classmates Never Knew
Facebook was suppose to be a means to an ends – promoting this blog. Instead, as I've re-connected with people from my childhood, it has shown me new ways to look at familiar territory.
Growing up having so many reconstructive surgeries had a profound impact on me and for years I have been using words to articulate it. Recently I started pondering it from an outsider's perspective, especially my classmates from elementary and high school. Facebook allowed me to ask about their perspective which is when I discovered they were never given any explanations of my surgeries or my visual issues. From long experience, I know children have a multitude of questions. Now I have a voice and means to give long overdue answers.
I was born with midline facial birth defects, and while cleft palette and hare lip are the most common forms, I had different anomalies. I was born without a nose, nasal airway, some jaw issues, and eye structure abnormalities causing my sight problems. Nobody knows why I came out as I did. The most probable theory is that my father's exposure to Agent Orange in Vietnam played a role.
By preschool, I had already underwent two surgeries that resulted in a bump under the skin in the location of a nose. It looked nothing like a nose, but it was something in the expected place. Then, in kindergarten, they focused on my sight issues with two surgeries – one to remove my chronically infected tear sacs and the other to remove the cataract lens of my left eye. The second surgery was not successful, the eye almost died, and I lost any usable vision it offered.
In first grade, they returned to my face inserting a balloon expander under the skin where a nose usually resides. A tube led from it to a valve behind my ear into which they injected saline. Basically, they forced my body to grow tissue where it was needed – fill the balloon until my skin stretched tight, wait until the skin made more, then inject more fluid. At some point, my nose totally deflated because the tube between valve and balloon split and the liquid drained out. It was repaired and they proceeded with the process.
When they had the desired amount of skin, they took the expander out and put a hard piece of silicone in its place. I am a little bit fuzzy on this part. I believe they took out the silicone and replaced it with a piece of rib. (The part taken grows back.) I'm having trouble remembering because I had multiple rib grafts and can't keep when each happened straight. I do know they took cartilage grafts from each ear to shape nostrils.
The above series of surgeries took place within a year or two and there were a few other face-related operations between first and sixth grade, but I can't remember what happened when. And, honestly, I don't want to think about it all that hard.
First grade was a busy year for my body because they also operated on my left kneecap to keep it from moving when I bent my leg. I had a full-length leg cast for about 8 weeks and lots of leg scars thereafter.
Back to my sight issues for a moment. In kindergarten and first grade, I was taken out of class regularly to be taught Braille. Then, someone realized I could use a specific type of adaptive tech called a cctv. For those of you who did not become entirely too familiar with it throughout our years of school, whatever I wished to read or write was enlarged and shown on a TV-like monitor, so I could use the same textbooks etc as my classmates. My specialized teacher now came into the classroom to work with me, although we left for specific reasons every so often. She helped bridge the gap if the CCTV did not make a task possible as well as training me in using the equipment, teaching me to type (I started at age 9!), and working long and hard on my listening skills. Outside of class I received instruction in mobility techniques.
Now we can return to surgery. The balloon expander attempt to construct a nose was not totally successful, especially since I hit my face a few times. I think a few balls in gym also collided with me. So, at the end of sixth grade, they started a new process. I returned from surgery with a bandage around my upper left arm. They had taken the flesh on my inner arm and fashioned a sort of handle. Over a period of time, they severed the handle at the end near my armpit. Then, I disappeared for 4 weeks. They detached that end of the handle and sewed it to my face, so a tube of skin stretched from near my elbow to where a nose should be. Stayed like that for twelve days. Next they detached the tube from my arm. For a few days, I had a mini elephant trunk. This tissue was then shaped into a nose and a rib graft was done to provide structure. I did return for the last day of sixth grade and probably caused a stir. I know I did tell a few girls in my class about what was happening, but I don't know if they shared it with anybody else.
Because I grew up in a small town, most of my classmates started preschool with me and graduated high school at my side. They grew up with my visual impairment and facial issues as routine – it was just Jen. A few who moved to the area must have experienced a bit of shock. However, in seventh grade, our school merged with the next town and there was an infusion of new students. They had a different degree of exposure to my situation.
In junior high, there were only minor surgeries over school vacations. My sight remained stable until the end of eighth grade when my "good" eye hemorrhaged and I was excused from finals. Ninth and tenth grade were devoid of surgeries, though my eye hemorrhaged a couple more times.
Major change happened at the end of my junior year and I can only imagine what classmates who had only known me since seventh grade thought. Here's what happened. I took my SATs about a month before everyone else, then went off for surgery. There was a new doctor with new ideas one being a nasal airway. They drilled a hole through the bone of my face, inserted a tube, slid a balloon expander under my forehead skin and began filling it. This surgery left me extremely week, so I went back to school part time. I had a sausage-like bulge under the skin of my forehead and a tube sticking out of my face where a nose is expected. We put a cotton ball around the tube to protect the surrounding wound. I could not wear my glasses, so for the first time ever I used my cane at school. (Previously it only came out for Forensics tournaments at other schools.)
At one point, the school nurse who was the mother of one of my classmates called Mom telling her that her son had expressed concerns about me. I have no idea what was said in that conversation or what Mrs. Clive told her son. Truly, I had enough to worry about given the five state-wide tests I needed to take, my ever-growing forehead, and that horrible tube.
One memory sticks in my mind. I was in the library with my health class learning CPR. I stayed after to show my teacher what I had learned and another student was present. This kid was the one everyone teased in elementary school. In the process of bending over the dummy, the cotton ball slid off my tube onto the rug. I sort of stared at it, but this kid didn't hesitate simply picking it up and handing it to me. I have yet to lose my amazement that he had the cajones to do that especially since *I* didn't have what it took to handle it.
There were no more surgeries that school year, but a lot happened over the summer. Let's leave it that the tube came out, the grown tissue was slowly moved to where it was needed, and there was a rib graft. The nasal airway didn't work, I had some skin grafts to cover harvesting sites, and my scalp was moved around. Trust me when I say you do not want the specifics.
The last surgery in this series happened the first day of my senior year. When I did return to school, I looked different, including some hair issues and new extremely visible scarring. By the way, the nose constructed during this process is the one still on my face.
After graduation, I mostly did not have contact with my classmates. In case you are curious, there were two more surgeries. I had my jaw surgically broken and wired shut. I lost over ten percent of my body weight, had a tracheotomy, and could barely eat solid food when I started college. For spring break my sophomore year, I had one final operation for minor modifications. Then, Though they would have continued, I put an end to reconstructive efforts. Within the past ten years, some of the grafts and implants in my face have been removed due to chronic infections. Don't worry – I'm still recognizable by my curls and personality.
I went totally blind in 1996. My eye structure abnormalities conspired together to detach my retina and it was deemed beyond fixing. So, no more thick glasses for me.
I truly wish all of this had been explained while it was happening. I am certain it would have changed my primary school experience in countless ways. Silence creates more silence and discomfort fosters avoidance. It made it harder on all of us. As I think all of this through, I am reaching new and interesting conclusions which my over active mind loves.
If I have not answered all your questions, please feel free to leave them here as comments or use one of Facebook's multitudinous methods of contacting me. Ultimately I want this to be a conversation not a monologue. And, if you have kids, find out what they've always wanted to ask a disabled person. Might make for interesting dinner table discussion. Please pass them along.
Growing up having so many reconstructive surgeries had a profound impact on me and for years I have been using words to articulate it. Recently I started pondering it from an outsider's perspective, especially my classmates from elementary and high school. Facebook allowed me to ask about their perspective which is when I discovered they were never given any explanations of my surgeries or my visual issues. From long experience, I know children have a multitude of questions. Now I have a voice and means to give long overdue answers.
I was born with midline facial birth defects, and while cleft palette and hare lip are the most common forms, I had different anomalies. I was born without a nose, nasal airway, some jaw issues, and eye structure abnormalities causing my sight problems. Nobody knows why I came out as I did. The most probable theory is that my father's exposure to Agent Orange in Vietnam played a role.
By preschool, I had already underwent two surgeries that resulted in a bump under the skin in the location of a nose. It looked nothing like a nose, but it was something in the expected place. Then, in kindergarten, they focused on my sight issues with two surgeries – one to remove my chronically infected tear sacs and the other to remove the cataract lens of my left eye. The second surgery was not successful, the eye almost died, and I lost any usable vision it offered.
In first grade, they returned to my face inserting a balloon expander under the skin where a nose usually resides. A tube led from it to a valve behind my ear into which they injected saline. Basically, they forced my body to grow tissue where it was needed – fill the balloon until my skin stretched tight, wait until the skin made more, then inject more fluid. At some point, my nose totally deflated because the tube between valve and balloon split and the liquid drained out. It was repaired and they proceeded with the process.
When they had the desired amount of skin, they took the expander out and put a hard piece of silicone in its place. I am a little bit fuzzy on this part. I believe they took out the silicone and replaced it with a piece of rib. (The part taken grows back.) I'm having trouble remembering because I had multiple rib grafts and can't keep when each happened straight. I do know they took cartilage grafts from each ear to shape nostrils.
The above series of surgeries took place within a year or two and there were a few other face-related operations between first and sixth grade, but I can't remember what happened when. And, honestly, I don't want to think about it all that hard.
First grade was a busy year for my body because they also operated on my left kneecap to keep it from moving when I bent my leg. I had a full-length leg cast for about 8 weeks and lots of leg scars thereafter.
Back to my sight issues for a moment. In kindergarten and first grade, I was taken out of class regularly to be taught Braille. Then, someone realized I could use a specific type of adaptive tech called a cctv. For those of you who did not become entirely too familiar with it throughout our years of school, whatever I wished to read or write was enlarged and shown on a TV-like monitor, so I could use the same textbooks etc as my classmates. My specialized teacher now came into the classroom to work with me, although we left for specific reasons every so often. She helped bridge the gap if the CCTV did not make a task possible as well as training me in using the equipment, teaching me to type (I started at age 9!), and working long and hard on my listening skills. Outside of class I received instruction in mobility techniques.
Now we can return to surgery. The balloon expander attempt to construct a nose was not totally successful, especially since I hit my face a few times. I think a few balls in gym also collided with me. So, at the end of sixth grade, they started a new process. I returned from surgery with a bandage around my upper left arm. They had taken the flesh on my inner arm and fashioned a sort of handle. Over a period of time, they severed the handle at the end near my armpit. Then, I disappeared for 4 weeks. They detached that end of the handle and sewed it to my face, so a tube of skin stretched from near my elbow to where a nose should be. Stayed like that for twelve days. Next they detached the tube from my arm. For a few days, I had a mini elephant trunk. This tissue was then shaped into a nose and a rib graft was done to provide structure. I did return for the last day of sixth grade and probably caused a stir. I know I did tell a few girls in my class about what was happening, but I don't know if they shared it with anybody else.
Because I grew up in a small town, most of my classmates started preschool with me and graduated high school at my side. They grew up with my visual impairment and facial issues as routine – it was just Jen. A few who moved to the area must have experienced a bit of shock. However, in seventh grade, our school merged with the next town and there was an infusion of new students. They had a different degree of exposure to my situation.
In junior high, there were only minor surgeries over school vacations. My sight remained stable until the end of eighth grade when my "good" eye hemorrhaged and I was excused from finals. Ninth and tenth grade were devoid of surgeries, though my eye hemorrhaged a couple more times.
Major change happened at the end of my junior year and I can only imagine what classmates who had only known me since seventh grade thought. Here's what happened. I took my SATs about a month before everyone else, then went off for surgery. There was a new doctor with new ideas one being a nasal airway. They drilled a hole through the bone of my face, inserted a tube, slid a balloon expander under my forehead skin and began filling it. This surgery left me extremely week, so I went back to school part time. I had a sausage-like bulge under the skin of my forehead and a tube sticking out of my face where a nose is expected. We put a cotton ball around the tube to protect the surrounding wound. I could not wear my glasses, so for the first time ever I used my cane at school. (Previously it only came out for Forensics tournaments at other schools.)
At one point, the school nurse who was the mother of one of my classmates called Mom telling her that her son had expressed concerns about me. I have no idea what was said in that conversation or what Mrs. Clive told her son. Truly, I had enough to worry about given the five state-wide tests I needed to take, my ever-growing forehead, and that horrible tube.
One memory sticks in my mind. I was in the library with my health class learning CPR. I stayed after to show my teacher what I had learned and another student was present. This kid was the one everyone teased in elementary school. In the process of bending over the dummy, the cotton ball slid off my tube onto the rug. I sort of stared at it, but this kid didn't hesitate simply picking it up and handing it to me. I have yet to lose my amazement that he had the cajones to do that especially since *I* didn't have what it took to handle it.
There were no more surgeries that school year, but a lot happened over the summer. Let's leave it that the tube came out, the grown tissue was slowly moved to where it was needed, and there was a rib graft. The nasal airway didn't work, I had some skin grafts to cover harvesting sites, and my scalp was moved around. Trust me when I say you do not want the specifics.
The last surgery in this series happened the first day of my senior year. When I did return to school, I looked different, including some hair issues and new extremely visible scarring. By the way, the nose constructed during this process is the one still on my face.
After graduation, I mostly did not have contact with my classmates. In case you are curious, there were two more surgeries. I had my jaw surgically broken and wired shut. I lost over ten percent of my body weight, had a tracheotomy, and could barely eat solid food when I started college. For spring break my sophomore year, I had one final operation for minor modifications. Then, Though they would have continued, I put an end to reconstructive efforts. Within the past ten years, some of the grafts and implants in my face have been removed due to chronic infections. Don't worry – I'm still recognizable by my curls and personality.
I went totally blind in 1996. My eye structure abnormalities conspired together to detach my retina and it was deemed beyond fixing. So, no more thick glasses for me.
I truly wish all of this had been explained while it was happening. I am certain it would have changed my primary school experience in countless ways. Silence creates more silence and discomfort fosters avoidance. It made it harder on all of us. As I think all of this through, I am reaching new and interesting conclusions which my over active mind loves.
If I have not answered all your questions, please feel free to leave them here as comments or use one of Facebook's multitudinous methods of contacting me. Ultimately I want this to be a conversation not a monologue. And, if you have kids, find out what they've always wanted to ask a disabled person. Might make for interesting dinner table discussion. Please pass them along.
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