The following prologue and chapter are excerpted from the autobiographical book, "The Gift."
Freedom and justice cannot be parceled out in pieces to suit a political convenience. I don’t believe you can stand for freedom for one group of people and deny it to others.
Coretta Scott King
This is the story of my life with a disfigured face. It is the candid story of how some people have reacted toward my face. It is as much about how I perceived myself as how others saw me. I must confess, although I’ve been discriminated against far too many times I also have a lot of self-inflicted wounds.
I hope you read this book. In fact, I hope people around the world read this short book. Some of you will no doubt be relieved to know that you’ll be able to relate to many of my experiences. Others will, with a bit of luck, be enlightened about the issues confronting many people. When you’ve finished reading this book my hope is you will think differently about those of us who have a facial disfigurement. Maybe someday when you encounter a facially-disfigured person you won’t sneak a second look at their face. Or perhaps you’ll reconsider before asking for another table when the host or hostess seats you at a table next to a facially-disfigured person. Maybe you will be a little more understanding of those who are different, regardless of the reason. Possibly you’ll be less judgmental and start challenging the status quo. My hope is this little book will mean much more to the reader than the sum of my experiences living with a facial difference.
Writing this short book implied that I did something others would want to know about. It’s not so much what I did but rather what was done to me at times during my life. I never accomplished anything so earth shattering to make my name stand out from the crowd. The fact is I didn’t have to stand out in the crowd, my disfigured face managed to garner more attention than I wanted.
I wrote this book for the thousands of people who like me have a facial disfigurement. I also wrote it for the people who have been relegated to the fringes of our society. These people, our fellow human beings, need to know that their lives are important and they matter.
I have an obligation and a responsibility to share how I lived my life with a disfigured face. I want to make as many people as I can aware of the issues that thousands of people like me cope with, every day of their lives. Perhaps it’s hubris, but I believe my experiences and beliefs can make a difference for people who don't fit in. Maybe this story will give a little comfort to the parents of a child who is different. My hope is that in some small way my story and ideas can make a difference.
The Gift is a metaphor for living the majority of my life with the aftermath of bulbar polio. On July 5, 1951, doctors diagnosed me with bulbar polio. It was no doubt one of the worst days of my parent’s lives. I strongly suspect they did not think of bulbar polio as a gift.
I’m not being cute when I refer to this terrible disease as a gift. In fact, the truth is for many years I thought the worst thing about having bulbar polio was surviving. I’ve had terrible bouts of depression at different points in my life. There were several times I wondered long and hard about the purpose of my life. What was the use of me even being alive?
Bulbar polio left my face disfigured among other things. The most troublesome polio issue I’ve had over the past sixty-five years has been people’s reaction to my face. During my sixty-five years I’ve met a broad spectrum of people. Some were incredibly kind while others were astonishingly cruel. Both are at the foundation of who I became as an adult.
Today I feel like I was lucky to have had a disfigured face. It gave me an insight into human nature, both the cruelty and the tenderness we all possess. It gave me the opportunity to look at myself and question many of my own beliefs. Living with a disfigured face is not easy but it made me more considerate about how I came to see the world.
Bigotry is the core issue throughout this book, my own misguided bigotry as well as the prejudice of other people and institutions. We humans concoct all kinds of pseudo-legitimate reasons to justify our fear of those among us who are different, whether real or imagined. We hold on to our core prejudices for dear life even though in some cases the reasons have long been forgotten. Most of us are rather comfortable with the way we’ve come to view the world. It’s also common for most of us to refuse to change our point-of-view--old prejudices and beliefs die hard. Especially when we are certain of the logic at the core of our beliefs.
I wrote this book for the odd people, the misfits in our communities who for a variety of reasons just don’t fit in. The ones who are different like me, those of us who sometimes feel like the square peg in a round hole.
This book is short by design. A non-reader can read the book in one sitting. It’s also my recollection of events that happened over my lifetime. Unfortunately, I didn’t carry a notebook around with me during my life. That means some of the stories are my best recollection of events that happened many years ago. These are the stories and events in my life that defined who I became as an adult. Besides my story, there are stories of people I came to know and how their experiences changed my view of the world. This little book is also about the joys I’ve experienced during my life and the unexpected pleasures I’ve had along the way.
I thought long and hard about the people I want to reach, what stories I should include. In the end, I shared the stories that had the most impact on my life. I choose to challenge long held beliefs by many institutions that discourage inclusion.
Our history in the United States is full of instances when city councils enacted the “ugly” and “sundown” laws. These laws were enacted to keep the disfigured people and minorities in check by restricting their movement. We can disguise our bigotry as a city ordinance, religious dogma, or political rhetoric, but the bottom line is it’s just plain old in-your-face bigotry. How can we have any expectation of change if we hold bigoted ideas about who gets to have full access as a human being? At the root of these stories are people’s preconceptions about those of us who are different.
I'm a baby boomer who grew up in rural Arizona during the fifties and sixties. I had snow-white hair, bright blue eyes, and almost translucent skin. I was the epitome of being the ideal WASP. It goes without saying I have no idea what it's like to be a woman, to be a minority, or to be homeless. I'm not gay nor a member of a despondent family from Appalachia. I don't suffer from a mental illness nor am I a dirt poor farm worker living in the shadows of California’s central valley. I can't even pretend to understand what life is like for these people. It’s far beyond my ability to comprehend.
There are a few things I’ve learned along the way. I'm an old man who has lived with a facial disfigurement for the vast majority of my life. People have gawked at me, refused to wait on me in some restaurants. I’ve been mocked, marginalized, outcast, and bullied, only because my face looks different. I can tell you as one who has been the recipient of this bigotry, it's not fun, not the least little bit.
Throughout my life some people have tried to increase their self-image by trying to reduce my self-esteem. They have judged me, discriminated against me for no other reason other than my face. I refuse to associate with people or organizations with values that discriminate against others. I’m not so desperate for friendship that I make exceptions and befriend people or institutions that are bigoted. Their ideals do nothing but belittle our fellow human beings. Their ideas are cruel, manipulative, and dehumanizing, and have no place anywhere. If we tolerate bigotry to gain their acceptance at the expense of our values then we will forever be second-class citizens.
I don’t pretend to have the answers to the important issues of our times. I’m leery of those who are sure their way of thinking is correct. In America we live in an on-going democratic experiment that will always be a work-in-progress. We are a country that has and still does both marginalize and brutalize indigenous people. We enslaved African people and dehumanized them long after their enslavement ended. We’ve never liked immigrants of any kind and have treated them with nothing but contempt. As late as 1974 many of our cities still had and enforced ugly laws and sundown laws.
This is more than a story about my facial disfigurement; it’s a story about all kinds of people who, for one reason or another, fail to fit in. In telling my story my hope is that somehow I can comfort a person who is grappling with whatever it is that makes them different.
We have an obligation to make our small little planet a place of inclusion for everyone. I know without a doubt that bigotry and demeaning others is not the answer. In spite of our imperfections, we all have a duty to try to make things better for everyone.
Please note while reading my story, I have changed the circumstances and the names of some of the stories to conceal their identities. I've included conversations and taken some literary license to give clarity to the conversations. I may not have remembered the exact details of a particular conversation but I definitely know how it made me feel.
I’ve shared the inspiring stories of people who have influenced my life. I also shared a few stories I found difficult to write and you may find them difficult to read. Perhaps we will begin to realize that everyone is fighting a hard battle regardless of who they are. I hope we’re able to develop an appreciation of all those qualities that make us human.
When I hear somebody sigh, 'Life is hard,' I am always tempted to ask,
“Compared to what?”
Sydney J. Harris ~ American Journalist
One day in my early childhood I happened to be at the right place at exactly the right moment when I contracted bulbar polio. Depending on your perspective, it was either the worst moment of my young life or the best. I suppose I could have done well had I not contracted polio but as it often is, I had no choice in the matter. Good or bad, that infinitesimal encounter would have an indelible effect that would be my inseparable companion for the rest of my life. I had to learn to live with the aftermath of polio. The disease left the left side of my face paralyzed and upper left side of my body with atrophy. The disease would alter the course of my life, define my views of the world, and leave a lasting mark.
I can’t imagine what my parents went through after I was diagnosed with bulbar polio. Not to mention the years in the polio ward of Los Angeles County Hospital.
Now that I’m an old man I reflect about my life more than I used to. I have to admit in spite of a few set backs here and there, I no doubt have had a wonderful life; if only I had realized it sooner. Like everyone else, I received my share of bumps and grinds along the way. I'm not a psychologist, sociologist, anthropologist, nor a doctor. I do for sure understand what it’s like to live with a facial disfigurement and its repercussions.
Before we go any further, I have to be candid and admit that I've not been the best role model. Like a lot of troubled young men, my anger was often misplaced. I hurt people who loved me very much and learned to live most of my life with a guarded outlook toward most people. A lot of the problems I’ve had were self-imposed. If you can relate to what I said, please get help. I promise you are worth the effort. What value are you going to find within the pages of this book? That’s up to you. Good, bad, or indifferent, this is my story, warts and all.
We have to go back a few years when my wife and I were shopping at a mall near our home. Throughout the shopping center, different facets of the medical industry had set up information booths. There were booths that addressed every medical topic a person could imagine. Then somehow we found ourselves in front of the craniofacial team from the local hospital. There were a couple of nurses and a few other volunteers. We talked to a couple of the volunteers, took a few brochures and were on our way. The visit to the mall that day got me thinking. Over the next six months the seeds of inspiration began to germinate.
Up until this point in my life my facial disfigurement was a case of unspoken desperation. I dealt with my facial difference by ignoring it until some gawker, reminded me I was different. There were daily reminders that I was different, and in some respects I paid no attention to them. In retrospect, that wasn’t the best idea because I drank a lot more than I should. I never found any answers to my problems at the bottom of a bottle of alcohol. I wasted an incredible amount of time.
The chance encounter at the shopping center got me thinking about my facial disfigurement. A few months later I had contacted the craniofacial clinic and volunteered. I thought with all my life experiences I would be a valuable mentor to kids with facial differences.
I quickly learned a team approach is taken by the medical community to address a particular medical situation. The methodology used in today’s medicine is much better then when I was going through my reconstructive surgery. It is a team effort that includes doctors, nurses, and social workers. On the patient's side, their treatment often involves their entire family.
A few years later I found myself as an adult volunteer at a fall get together. The hope of being God's gift to facially disfigured kids dissipated a few minutes after I met the kids who really had their act together. Throughout the extended weekend we had hours of conversation that everyone could relate to. For me, the most striking memory and one of the seeds that lead to the creation of this book was a conversation I had with one of the parents. Fred was the father of a twelve-year-old boy named Billy who was in my group of kids. One evening Fred and I began to talk about teasing and staring. Fred wanted to know if kids teased me as a boy? I told him my story. Fred responded by telling me Billy was fortunate because other kids had never teased his son. I couldn't help but wonder why his son is attending this workshop for teenagers with facial differences. Fred loved his son, but he, at least in my opinion, had no idea what was going on in his son's life. Deep down inside I suspect Fred was having doubts, or he wouldn't have posed the question in the first place. It was not my place to judge, so I listened and did my best to share the experiences in my life that related to our discussion.
The next day we heard Billy talk about how other kids teased him. Like everyone in the small group including myself and the other adult mentor, teasing and taunting by other kids hurt Billy to his core. We understood what everyone in the group was sharing. At some level, maybe Fred had an idea of what was going on in his son's life, but it was too painful for him to deal with. Then again, on a different level, perhaps Fred really had no "real" idea what was going on with his son. Let me explain.
When I was growing up, my family smoked, and they smoked a lot. My parents, grandparents, aunts, and uncles--everyone smoked. I started smoking when I was seventeen years old thinking it was the ultimate of cool. In high school, my father's health took a turn for the worse. He suffered from a respiratory infection that had been dormant since World War Two. As if the infection wasn't enough, he had emphysema, which caused him to suffer a great deal for the rest of his life. Early on, his doctor suggested he stop his two-packs-a-day smoking habit. He tried several times to quit. Even after they removed most of his right lung, he continued to smoke. Everyone in my family smoked, and no one took the hint, maybe cigarettes weren’t so good for us? It also didn’t occur to any of us to stop smoking to support my father's battle with nicotine addiction. Once I was so upset about his inability to quit smoking I went out in the backyard and smoked a couple of cigarettes to settle down. I had no idea what he was going through. How could I not know what was going on in the life of someone who was so important in my life? Part of it was the righteous indignation of my youth, but part of it was the same mechanism that was going on between Fred and his son Bill.
Perhaps Bill was like me. Maybe he too refused to share the part of his life that was too painful to discuss with anyone. I learned early on not to confide in anyone in matters about my face. Like Fred's son, Bill, I didn't talk about those who teased me because of my face. I could take care of the situation myself. I wasn’t going to be anyone's charity case. I got tired of being different, but there wasn't a heck of a lot I could do about it. I built a defense system that was like a double-edged saber. It seems I did more damage to myself over the years than did anyone else.
My parents had no idea how much kids were teasing because there was no way I was going to tell them. No amount of explanation to those who love you will help, even in the rare situation where they understand what you mean.
I wanted to tell Fred some of the experiences his son Bill had shared with our group. It wasn't my place to tell him it was his son Billy's decision. As for myself I only recently shared some of my experiences with my wife forty-plus years after the fact.
Polio was a summertime virus that ran rampant infecting people of all ages. I didn't get the FDR kind of polio (poliomyelitis). My brand of polio affected the motor neurons in the brainstem at the center of the cranial nerves. These nerves play a critical role in your ability to see, hear, smell, taste and eat. They also effect the movement of muscles in your face and send signals to your heart, intestines and lungs. Bulbar polio can interfere with any of these functions. It is especially likely to affect the ability to breathe, speak, and swallow. In a way, I was lucky because it could have been a lot more severe than it was. It left many of the muscles on the upper left side of my body, including my face, paralyzed. The swallowing mechanism on the left side of my throat remains paralyzed to this day. Due to atrophy, I have about fifty percent of the usage in my left shoulder, arm, and my left hand. As a result of my muscle weakness and paralysis, I carry the upper torso of my body to the left. My left hand has continuous tremors that cause it to shake appearing nervous to those who even notice. Perhaps I gave you more information than you wanted to know, but there it is. This project is about how I dealt with the emotional aspects of the disease that left my face disfigured.
I was seventeen months old, on July 5, 1951 when my symptoms became clear. At that age, the bones in my face had yet to solidify. Since the disease affected just the left side of my face over time the bone structure became distorted. Both my cheek and jaw on my left side were disfigured. As for my neck, shoulder, arm, and hand, I have limited use but the effects are noticeable. So there you have it. I answered the "So, what happened to you?” question.
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