The Gift, Chapter 7

The following chapter is excerpted from the autobiographical book, "The Gift." We will be sharing a new chapter in each issue.

Chapter 7

In these three words I can sum up everything I’ve learned about life ~ it goes on.
Robert Frost ~ American poet

I try not to use the word “normal” in reference to another person. It’s code for what’s expected or something more acceptable. 

My parents were a loving and caring couple; I was lucky. This story isn't an indictment of their parenting skills. It is my observation as an adult on how my parents handled a situation about my high school senior photograph. The time came when we were to have our senior pictures taken for the Gilbert High School Annual. I don't know where the rest of the class had their senior photos taken. My parents insisted I have a photographer who specialized in photo touch-ups take my photo. When they told me about their plans, I responded by telling them I didn't want my senior class photo taken at all. They insisted, and under protest I complied. A few weeks later an "airbrushed" version of the face my parents wanted to see came in the mail. It was the photograph of how they wanted me to look not how I had actually looked. My parents confirmed, my face wasn't quite good enough even for them. At the time, the only thing my parents and I agreed on was my face was unacceptable. It's uneasy for me, even after all these years, to take a critical look at their decision. It was what it was and I can only tell you for sure how I felt. If my face gave pause to my parents, what did others think? When it came to the subject of my appearance, it was the five-hundred-pound gorilla in the room no one talked about; at least not when I was around. 

The image wasn’t me. All it did was to confirm the photographer's airbrushing skills. When I first laid eyes on the photograph it meant nothing to me. Thirty some years later after both of my parents had died it meant nothing to me when I tossed it in the trash. Had one of my daughters had a facial anomaly, I would have done everything in my power to prepare her for the inevitable. I would have done whatever I had to do to instill in her it’s okay being different regardless of the reason. There would be no doubt I would love and accept them the way they are. My love was never in question and never dependent on them meeting certain social requirements.

My boss assigned me to be on a task force. Because I was on so many I don’t recall what this particular meeting was about. By pure chance, someone mentioned the Americans with Disabilities Act during a break and began discussing the legislation. Only after the other members asked what I thought did I share the little I knew, which was that it protected people who are facially disfigured. That's when things went downhill real quick. To my surprise, a usually quite unpretentious guy who I’d known, or at least thought I knew, for many years got upset. He told me I was wrong, that the idea was ridiculous. After he came to the conclusion I was serious and most likely correct he started grilling me about how I felt. I had no opinion because at the time I was too busy working to know anything of substance about the Americans with Disabilities Act. He must have thought I was being patronizing about his questions. The fact was I didn’t know much about the legislation. He made reference to my mother and my birth status. Things went from bad to worse. He became so belligerent that the person conducting the meeting had to get involved and calm him down. He was so consumed with anger he didn't attend the balance of the meeting. We weren't friends but I did respect him. He was well thought of and had a good reputation.  He never spoke to me again. The intensity of his actions baffles me to this day.

Why did my parents insist on having my senior picture airbrushed? Why did this guy at the meeting go off on the mere topic? I have no idea, but I can say with sureness the "face" is important; it's sort of like “You” central. If you think about all the people you've met in your life you identify only by their face. You see with your eyes, smell with your nose, hear with your ears, and on and on. When someone wants to take your picture most of the time, it's your face they want to photograph. I think I'm safe in stating that it's understood the "face" is vital to who we are. People often say, "I want a meeting, face to face." Why? Because they want to read the person’s facial expressions to figure out what is going on beyond mere words. It's a rational expectation, and it is part of effective communication. The essence of acting is learning all kinds of facial expressions. It's our nature, and we all do it, from the time we're born to the moment we die.

Several years ago, during one of the Super Bowls, a detergent company introduced a commercial. In this commercial, a guy with a stain on his shirt is interviewing for a job, the interviewer could only focus on the stain. That's what it's like to have a disfigured face. I have had ten times more physical issues with swallowing, my hand shaking and lack of mobility than I do my face. As the detergent commercial illustrated, people expect the shirt to be clean.

Due to my face being half paralyzed my facial expressions isn’t what people expect. When I laugh the muscles on the right side of my face work while the paralyzed muscles on the left side do nothing. Besides my facial paralysis, the muscles that should help my jaw chew food have acute atrophy. My jaw muscles combined with my half paralyzed swallowing mechanism can make eating difficult. I've learned to chew food with the help of my right hand. I have eaten using this method since I can remember, it's so second nature to me I'm not even aware it.

***

The world is what it is, like it or not, and some kids are going to tease others children about all sorts of things, and life goes on. I have no idea what it's like to be the parent of a child who is different for any reason. I do know all too well what its like being the focus of unnecessary and unwanted attention.

I did for sure get bullied as a child. In my opinion, there is little to nothing a parent can do to prevent a child from other children or even worse adults. Adults are the people you’d think should know better but in many cases don’t. The truth is when teasing or verbal abuse comes from adults it is intensely crueler and the sting lasts a lifetime.

In my experience, what makes matters worst is the person who is the target of this abuse is not likely to tell his/her parents, I never told my parents or anyone else. I experienced blatant teasing a handful of times throughout my life that was more than enough times. As bad as some people were to me it was the polite avoidance rather than any other extreme forms of bigotry that caused a slow steady burn in my soul. It has been the issue with me and I suppose will always be a reality for me. Every time I go out in public at least one person will stare at me, it’s usually more than one. When you have a disfigured face, trust me, almost everyone sees your facial difference.

Some people feel uncomfortable when they first see my face and especially my facial expressions. They expect certain facial responses such as laughter, frowning and others. When those expectations are not met, people wonder if something is wrong.

What kind of person responds this way? Are they less educated? Are they crude, insensitive people who don't care about others feelings? In my experience, it is something more fundamental to our nature. People of all races, creeds and nationalities have treated me with great kindness. They have also been at times cruel. I'm sure there are explanations for this type of behavior. I suppose it's important to know but for the topic at hand all that’s necessary is some people will react strongly to our disfigured faces.

Why do we concentrate on those who reject us? I'm a woodworker and a good one, if I don't say so myself! I would do fine art shows around the country and hundreds upon hundreds of people would see my work and tell me how great it was. That was nice and as a craftsman, I appreciated the compliment. Other woodworkers would tell me how they admired the craftsmanship. Everyone's positive comments gave me a great sense of satisfaction. In the evening after the show what did I obsess about? Not the hundreds of people who paid me a compliment, but rather the one or two people who didn't like my work. Why do we do that to ourselves? The same is true with our facial difference most people put our differences aside and treat us as they would treat anyone else.

Some people feel so uncomfortable around me they go to great lengths to avoid being around me. If this happens to you, don't let them live rent-free in your brain. Wouldn’t it be nice if some how we could identify those people who are total jerks? Unfortunately we can't! Unfortunately, they come in all shapes and sizes. They are strangers, relatives, old people, doctors, lawyers, farm workers and on and on and on! They're creepy and they are always going to be around.

Some people will react to your face, but the overwhelming majority will immediately move on and want to get to know you as a person. They will treat you with respect and dignity. They will judge you by the content of your character not by how you look. Being judged by your character is a new ball game.

The point is this: we cannot go through our lives being victims! If you want to improve your life, start with the person staring back at you in the mirror. The people described in this chapter will always exist and what they think and do will only matter if we give them the permission. You know better than to become a person who sprays a child down with a garden hose. Don’t be the schoolteacher who because of her messy personal life abuses those who can't fight back. Their actions were deliberate, intentional and directed at me, but it doesn't give me the right to hurt others. It's easy to get bitter and angry. It's much better to concentrate on myself and make sure I don’t become the type of person I've grown to dislike. 

If your life is anything like my life, you'll discover this. Most people you'll meet will be kind and gentle, and dealing with their own issues. Don't let those few people, who judge you, dominate how you view the world.