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.

3 comments:

FrankLivingFully said...

Hi Jen, I found your fascinating blog today through the blog of an Anglican minister who follows it. I am always interested in tracing networks of interaction like this because it has led me to many people who struggle with illness. I've found many people who work out a way of living very fully. That has surprised me because one of my pain specialists said that many people in pain are angry and mad and not the type of people I would like to be around. Instead, I've found the most courageous, funny and down-to-earth group of folks I have ever known. I've come to regard my many chronic illnesses as a mysterious gift because I've needed to reach out to others to cope. We share and encourage each other and laugh. I would never have guessed this would happen at first, but I hoped it would. With people like you writing Jen we will eventually become a society which values each individual for their own unique worth. Thanks for your blog and your story. I write mostly at: www.carepages.com There is a free registration procedure where you obtain a password and user name. My carepage is FrankLivingFully I do not think the upper and lower case letters make any difference. The best email to use for me is:
bigbirdfrank@gmail.com

Jen said...

Frank,
Thank you for the kind words. Personally, I believe disabilities or health conditions (I deal with both) bring amazing things into our lives that would otherwise be lacking. I'm glad you've found the blessings in your situation for it is my observation that those who feel "afflicted" have less joy in their lives. While some of us cannot live healthy, every single human being is capable of living happily.

Thanks for reading. The Anglican minister in question and I went to high school together and his support and encouragement have beem amazing.

Jen

cavolonero said...

Testing leaving a comment ~