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.

Wednesday, October 21, 2009

Why I Feel How I Feel

Yeah, yeah, I know the title is pretty much the topic of every entry, but this weekend I had a revelation. The duo Ryanhood mentioned in the previous post performed in San Diego and I was fortunate to catch the second half of their set. Afterward I had nice conversations with both Ryan and Cameron. On my walk home, I tried to understand why their manner toward me is comfortable whilst others make me want to squirm. This is not the first time I have tried to dissect another's demeanor and behavior, but it is the first time I actually found a way to explain it that might make sense to TABs.

I believe people's approaches can be categorized using the following areas:
1. level of pity
2. degree of amazement
3. amount of respect shown
4. how the person seems to think about my difference
5. how the person handles it when my difference becomes relevant

Pity should never be confused with empathy. In the latter, the focus is on how the individual feels about their own situation whereas the former centers around how a person emotionally responds to another's circumstances. Pity is based on perception, thus personal beliefs and assumptions come into play. With me, often a person feels worse about my supposed plight than I do. It is exhibited in phrases like, "Your life must be so hard," "It's such a shame," or simply use of the word suffering.

I think amazement comes from a similar mental process because people think about what they believe they could do if disabled like me and use that yardstick to judge my achievements. Examples include: "I can't believe you baked that," "I couldn't do that if I were," or even a lavish compliment for an every day task.

I do not possess the words to describe respect, but I know it when I see it. Think of the difference between how people treat an adult versus a five year old. There is a tacit belief that an adult can do basic grown up tasks unless evidence emerges that proves otherwise. We do not assume five year olds can cross a street alone, ride the bus without an adult, or order a meal. There are times when I am treated more like that five year old than a mature woman. Of course if I am obviously trying to do something and not managing it, it is not a matter of respect if somebody offers assistance. However, if I decline the help and they question me – "Are you really sure you can do that?" -- it then boils down to respect.

The fourth item on my list can best be illustrated with cats and dogs. Does the person consider one of us a cat and the other a dog or do they consider us different breeds of the same species? In other words, is our difference or our similarity more relevant to them? People who find our difference more salient will often have difficulty finding conversational common ground with an awkward or nervous demeanor. Those who consider our similarities as more germane behave in a natural manner as they would around any other person. Obviously some people are ill-at-ease around anyone which I like to think I can discern reliably.

Finally, if my disability becomes relevant, people handle it in a variety of ways. For example, in illustrating a conversational point, some people will gesture and supply enough words to convey meaning without missing a beat. They do not stop and say, "Oh, Jen, I just did thus and so." My difference never becomes apparent to anyone, but I am also not left feeling different because I cannot follow the conversation. On the other hand, there are people who say the word "see" around me and start apologizing. That makes my difference apparent to me and everyone else in earshot. (Actually, I use the word see along with watch and read telling people it is a matter of using common vernacular, but it is probably more about not highlighting my difference.)

I suspect you can all guess at how I like to be treated– no pity, amazement only at things amazing for any human to achieve, respect due any adult human, similarities more salient than difference, and my disability-related needs being taken into account without disruption. Cameron, Ryan, and people like them allow me to feel comfortable because they obviously do not feel uncomfortable. We are simply equals having a conversation.

I could end here, but one point needs to be made crystal clear. Not every person knows exactly what to do or say. Lack of experience is not a crime for which anyone should be judged. I suppose my list really should have a sixth item – how lack of knowing what to do is handled. Treating it in a matter-of-fact way such as asking a question the way you would ask for the potatoes to be passed is one approach. Another technique might be to give a long preamble about how you don't know how to ask something followed by a question that avoids using the word blind by performing conversational gymnastics. The words used to ask a question are not nearly as important as whether or not my disability is treated like a taboo subject.

I have read through this multiple times and have determined I rather sound like a judgmental jerk. My promise of unflinching honesty prevents me from deleting this. However, I think the criteria are actually a very simple way to summarize a complex set of behaviors that result in me feeling one way or another. For those of you uncertain about what to say or do around a disabled person, maybe they will give you a few useful guidelines.

Wednesday, October 14, 2009

Blindness Can Be Funny

I don't know about you, but I'm in need of some serious levity. And, yes, that is an oxymoron, but you get the idea. This month? The things that happen only because I'm blind.

My grandparent's home is on a lake and as a child, I spent a good portion of my summers there with my sisters and cousins. Except for my grandmother, everyone water-skied. Because of my various reconstructive surgeries, I was forced to wait until the ripe age of eight to learn. To give you perspective, I believe that one cousin was maybe four when she tried it.

For any of you not familiar with the sport, beginners usually learn from the water, squatting in position using the pull of the boat to get up. Only experts stand upright on the dock and jump into the water. Intermediates sit on the edge of the dock and go from there. I will never progress past intermediate.

On my maiden voyage, I went through the routine familiar from enviously watching others do it: I put on my life-vest, wedged my feet into skis, and slid off the dock into the water. I was taught how to crouch so my skis were at an incline with the water's surface, tips pointed upward legs bent so my backside more or less rested on the skis. Then, they gave me a handle attached to the rope and put enough tension on it so I didn't lose my careful positioning. Someone on the boat then yelled, "Hit it!" and we took off.

I let the boat pull me up, just as instructed. Usually, people fall multiple times before reaching this point, so I was very pleased as the boat towed me in a circle. When we neared the dock, the boat honked and I let go sailing over the water toward shore, very proud of myself.

"Jen, didn't you hear us?" everyone on the dock asked.


"You needed to stand up!"


"You don't go around squatting like that. You stand."


I thought being pulled up by the boat meant pulled into a squatting position when the actual objective is standing. Once I tried standing, I fell tons. Actually, I still do, thus the never progressing past intermediate thing.

The above happened simply because I didn't understand a key part of the activity. At other times, my blindness combines with my "I must be right" attitude in amusing ways.

After I developed multiple food intolerances, by necessity I learned how to cook. At the time, the people I knew didn't cook much, so I was impressive in comparison. One friend who stayed with me loved my curried sweet potatoes, so while I was making dinner, I told her the recipe and she wrote it down. One of the ingredients is curry powder, but that can be a widely variable spice from brand to brand and source to source. I reached for the type I was using and suggested she look at the ingredients in order to find an equivalent version.

"Jen, she said, this isn't curry."

"Yes it is," I replied.

"No, it's Cajon seasoning."

"No, the Braille right here says curry."

"And yet the print says Cajon."

Ooops. Now we call them Cajon sweet potatoes. They are still tasty.

When you think about it, it is rather ridiculous that I discount what eyes perceive to the point that I assume the other person is wrong. Here's one final instance.

I was flopped across my couch on my stomach, head pillowed on my arms while my friend occupied the comfy blue chair. At some point in our conversation, she glanced over at the end-table and said, "Ryan's totally hot."


"This musician on the Ryanhood CD is hot."

"No, you mean Cameron. The group is Ryan Green and Cameron Hood."

"No, I mean Ryan."

"Trust me. Cameron's the hot one."

"He's labeled Ryan on the CD."


From multiple Ryanhood concerts, I had a very vivid impression of both musicians. I took this as a better indication of physical attractiveness than the observations of a sighted person who could actually see the pictures. This is akin to the times when I find out things about my friend's appearance, like their hair color. If it doesn't fit the mental image my mind has constructed of the person, I am totally disconcerted.

I suppose I have just made an excellent argument for me being convinced of my rightness beyond all reason. Somebody will use it against me sooner or later. That really shouldn't be allowed – a violation of the fair fight rules. "Thou shalt not use a blog entry to disprove its author."

Wednesday, October 7, 2009

Our Sibling Keepers

Last week's entry and the resulting comments caused me to reflect upon the brothers and sisters of disabled people. It dawned on me that many may not know about or have considered the position our siblings are in whether they like it or not.

Our friends have on some level made a choice that we the disabled person are well worth the extra effort they must sometimes expend on our behalf. Our siblings have no choice about any of it. They are drafted and service lasts a lifetime.

When a disabled child enters a family, it requires extra time and effort from the parents who must go to doctors appointments, find time for physical therapy, deal with school systems, and generally learn how to help and care for their child. By necessity, as it was in my case, a disproportionate amount of time and effort often must be spent on the disabled child. For example, whenever I had surgery, Mom came with me and stayed at the distant hospital the entire time. This meant my grandparents stayed with my sisters. I also received gifts whenever I was hospitalized, didn't have to do certain chores, and received extra attention.

While my older sister seemingly understood the situation, my younger sister had problems which is completely reasonable in my opinion. She took her frustration out on my mother by acting out. It was lousy for everybody, but there was no solution to the state of affairs..

Disabled kids eventually become disabled adults. While their mature siblings are better equipped to understand the situation, new and complex issues emerge. The disproportionate attention parents must give the disabled sibling might not change in adulthood. Furthermore, when the parents become too old to provide the needed assistance, it falls upon the nondisabled siblings to help.. While you might think our social welfare system would fill in the gap, the reality is that without support from friends and family, disabled people often have a lower quality of life. Anything more than simple physical existence requires the support of family of some sort. That burden could fall on the shoulders of a spouse, but we are less likely to marry. So, our brothers and sisters must take up where parents leave off.

In addition, there are financial considerations. Any disabled adult eking out an existence on Social Security and other such programs can receive certain kinds of monetary help from others as long as it does not involve food, clothing, or shelter. When our parents die, if we directly inherit something, it could well make us ineligible for those forms of support. Most parents of a disabled child set up a specific type of trust and appoint someone to administer it. Unless you want to pay for that oversight, you appoint a sibling. To add to the complexity, parents might decide to leave more to their disabled child based on the reality that we often need more financial support. All this places more responsibility on the nondisabled siblings and can foster resentment. In addition, having one sibling control the financial status of another can be an emotional minefield.

All of this has largely gone without mention by either me or my sisters. Personally, I do not want to know if they consider their future obligations to be onerous. I also do not want to shed any light on my fears that their lives and families will prevent them from giving me the help I might need. Besides, I feel immense guilt even considering asking my sisters for aid now and avoid imagining what it might be like in the distant future.

I am certain both have discussed me with their respective spouses and consideration has been given to what it might mean for their families once my parents pass on. Our society still considers the family the first line of help and support in this arena. If I happen to have a life partner, everyone will assume that person takes on primary responsibility for me freeing my sisters. However, if I'm single and my sisters want me to have more than a subsistence quality of life, they will have to take on those responsibilities.

In writing this entry, I have gained a new appreciation for the depth and extent of the burden our society places upon the siblings of a disabled person. And, should a sibling object to these obligations, social sanction is high. I grant you assuming the responsibilities does result in social kudos. After all, if my friends are nominated to sainthood for being in my company, can you imagine what some will think of my sisters? Still, I personally think our siblings are in a lousy position. I try to appreciate what mine do for me and not ask for much.

In fact, I ask more of my friends. As with many people of my generation, my friends form a different sort of family – what many call a chosen family. I turn to mine regularly for a vast array of things. While I try to do things in return, cookies can't exactly compensate for weekly rides to yoga or being dragged for a walk by my obstinate dog.

I know I should stop thinking of myself as a burden instead embracing the notion that the people in my life are lucky to have me and what I bring to any relationship is well worth any extra effort. Haven't managed it, though.

Oddly enough, after starting this entry, I discovered on Friday Hallmark is showing "Riding the Bus with My sister." This movie explores the complexity of issues within a sibling relationship when one is disabled. If memory serves, they did a pretty good job of it.